By

Chronic Daily Headache Prevention: Why is it so Difficult?

puzzle“I’ve tried everything and nothing helps my chronic daily headaches.” How many times have you uttered something similar? A HealthTalk Q & A gives some common reasons why:

  1. Medication overuse (rebound) headaches
  2. Failure to treat a co-existing medical condition such as depression or a sleep disorder
  3. Unrecognized medication-induced headaches, such as might occur from cholesterol drugs, proton-pump inhibitors for GERD, and anti-depressants
  4. Failure to investigate the possibility of relatively rare causes of headaches such as abnormalities at the base of the skull and top of the spine (craniocervical junction), intracranial hypotension (low-pressure headache), sinus abnormalities, and food or environmental allergies

Sadly, none of these reasons explain my chronic daily headaches. How about you?

photo by Erik Araujo

101 Responses to Chronic Daily Headache Prevention: Why is it so Difficult?

  1. Rain Gem says:

    Scratch off 1 and 3 for me – I did that.

    Not too sure about 4 but I’ve had migraines since I was a kid, so, not very likely.

    And treating depression and sleep disorder, well, not really an option, considering the sort of drugs they’d put you on…

    But that’s migraine. Chronic daily headaches I’ve developed and then managed to knock them off. Not even sure how. Funny how that works.

  2. Dorci says:

    I have been having daily headaches for almost 2 1/2 years. I just went to my third neurologist and explained to him exactly how my headaches started (with a sudden, terrible headache one day, and then every day since), how they feel (a squeezing all around the top of my head), what seems to make them go away, at least for a time (lying down for a while), and he knew almost right away that I most likely have a spinal fluid leak. Can’t tell you how excited I was to hear that. The test, he said, was to lie down on my bed when I have a headache and put my head down over the edge. That would force spinal fluid into my head and the headache would go away. I tried it, and my headache was gone. At least while I was hanging upside down. ;o) So don’t give up, keep searching for the doctor who will be able to help.

  3. Carapace says:

    I laughed a hard, bitter laugh about the sleep disorder comment. My sleep has defied all schedule, remedies, therapy and meds since I was born. I don’t think my brain likes the trick.

    Being told that my unpattern of sleep might cause health problems makes me want to shake someone. Ya think, doc?

    Sigh. Switching to Keto-Atkins has made a big difference, though. From week-long migraines, to once or twice a day for a few hours. It really is better.

  4. Andy says:

    None of those reasons explain my 4-year long headache. I’ve just had to learn to live with it, which I’m managing to do. According to that article, though, I may experience some relief around age 55 (17 years away). I probably won’t keep my fingers crossed that long.

    Keep up the good work on the blog, Kerrie. It helps to know others are out there dealing with the same frustrating things.

  5. Shawnie says:

    I have had migraines for 30 years and chronic daily headaches for 25. Like Andy says none of those reasons explain my 25-year long headache.

  6. Linz says:

    If they included untreated myofascial pain syndrome as a comorbid condition in tht list then it might apply to a lot more people.

  7. becky says:

    Nope. Doesn’t explain mine either. Well, maybe what I should say is I *think* mine are hormonally based, yet no one has been able to balance my hormones in such a way as to eliminate the h/a. Monkeying with my hormones *does* reduce frequency/intensity, but never eliminates. I’ve had a headache every single day since age 14, so 25 years now. It hurts just to write that.

    I’m about to embark on a hypnotherapy odyssey in the hopes of helping me control pain better. I may not be able to fix the h/a, but maybe I can at least make them less prominent in my day-to-day life.

  8. Andy R says:

    My name is also Andy. I have had chronic daily headaches for almost 5 years. I have been to see over 20 doctors, spent 2 weeks at MHNI (Michigan Headache and Neuro Clinic) and tried every medicine under the sun but have a terrible headache 24/7. Does anyone have a suggestion about meds that might help with the pain I live with every day or a doctor that I have not tried that might offer a solution?

    Sorry to hear there are so many people hurting out there. It’s terrible to feel this way and most people don’t understand.

    Andy

  9. K1Frog2 says:

    My headache has a reason.Traumatic brain injury. But it still doesn’t have a cure. I’d gladly give up the reason for a little relief. I’m thinking of a nice coma for my next vacation…

  10. While there are many things that contribute to chronic daily headache, habitual pain response is part of the condition. When we feel the beginnings of a headache we expect it to get worse, and our body reacts accordingly. We know the feeling of ‘oh no here it comes again’. From that point we follow a patterned response developed over dozens of headaches.
    I had migraines and cluster headaches for over twenty years. They are now gone. One of the key reasons I could eliminate migraines was learning how to quiet my mind and change my reaction. Now instead of expecting a headache to escalate, I expect it to diminish and go away and it does.
    I am not saying that the skill of diminishing headaches is easy, just that it is achievable.

  11. Jaymi says:

    My CDH started with a terrible tooth ache, and then another bad tooth and then another…6 years ago and still the headache. You know what I hate? I hate that when I read that list I question myself and my symptoms for the thousanth time and wonder, maybe I’ve missed something. Because is this really possible to feel this way without a reason?????

  12. Matt says:

    K1Frog:

    If you can email me that would be great…I also had a head injury that started the headached…dont seem to find anyone else that did..It was a concussion from a fall.been 2 years now. headache 24/7 currently on topamax. fsubball3434@yahoo.com

  13. gluten free says:

    gluten intolerance seems to have been the cause of my CDH. Still working on the migraines……

  14. Barb J says:

    My name if Barb and I can relate to Andy R. I too have been to the MHNI. The only treatment that seemed to give temporary relief was a cervical epideral. It relieved most of my CDH’s for about 1 1/2 months. But a second epideral was not affective. I too have seen many neurologists and tried all medications known to man. I have also have had many different procedures from Botox to cervical epiderals, acupunture, nerve blocks. All to no affect. I have recently been looking into a Dr.Ivica DucicGeorgetown Univ a Plastic Surgeon with a specialty in Peripheral Nerve problems. He suggests that if Botox , cervical epiderals or nerve blocks give temporary relief he can help. His surgery involves microsurgery that involves treating the nerves and or muscles in the head and or neck and is successful 70-75 percent of the time.His website is http://www.georgetownplastics.com

  15. dsfm_ says:

    i’ve had CDH for the last 2 and a bit years now, i started a new job and within a week i had a migrane the pain eased off but i was left with daily headaches. the doctor has tried many different medication that has not worked. when i asked to be referred to a neurologist he told me i did not have a brain tumor and that he needed to find a suitable medication that would ease them. nobody seems to understand what there like and how they make you feel. they think cos i look okay that i must be exaggerating the pain.

  16. lisa says:

    I have had a chronic daily headache all day everyday for a year now and just can’t bear it anymore my head hurts all over not just in one place the pressure is unbearable and i also get alot of pressure in my face no body seems to understand but this is not how i wanted to live my life have had mri ct scan etc.. and all came back normal i do worry that there is something more to this daily pain but the doctors i have seen do not seem to think it is anything more than a chronic daily headache but god it hurts and i am in pain every single day from the moment i wake till till the moment i go to bed no meds seem to help and this is ruining my family life anyone out there had any relieve would be great to know.

    • lina says:

      I know how you feel. Have been 6 yrs now every single day all day..gets very depressing .have been everywhere even tried natural ways..nothing has helped,no one understands how debilitating this is. Never imaged that this would be my life. Always ate healthy, worked out and loved being out.not so much anymore.even lost a lot of hope of finding a solution

      …..can anyone help. I need my life back…

      • Lina, I’m sorry you’re struggling so much right now. Please hang in there. There are so many treatments that can help with headache disorders. This can be a blessing and a curse — there are lots of options left to try when a treatment doesn’t work, but sometimes it takes a while to find one that’s effective for you. If possible, see a headache specialist. Not just a neurologist, but someone who actually specializes in headache disorders. You can find lists of specialists using the links at the top of this page: http://www.thedailyheadache.com/resources. Unsurprisingly, headache specialists have a deeper knowledge of headache disorders than any other kind of provider, so they know what else to try when the standard treatments haven’t worked. I wish you the best of luck in finding relief. The most important thing you can do is to keep trying — keep researching and keep trying new treatments. It’s daunting and exhausting, but to find relief, you have to keep searching.

        Take care,
        Kerrie

    • Amber jones says:

      Hi Lisa

      Have things got any better ? I have had a 24/7 headache for 2 years now and feel like you. Loosing the will to live!

      Amber

  17. Nichole says:

    I’ve been having chronic headaches for the past 4 years. Some days it’s just a dull ache and other days I can’t even function. It ruins my time with my family just trying to deal with this chronic pain. I’ve been put on different migrane/tension headache medications and none of them have worked. Some doctors blame it on hormones (which have tested 100% NORMAL) and others just say it’s stress. I just wish I could find a cure! Thank you for creating this blog! It’s helped me a lot already, just knowing there are other sufferers out there!

  18. Kelli says:

    The entire year of 2008 I battled breast cancer. I am cancer free but the stress of everyting kinda got to me. I have been having chronic daily headaches for quite some time now and have tried many different migraine meds. My doctor just recently started me on a prednisone regimen that he recently learned about and swears by it. He said it should take up to ten days to be sure it is going to work, but so far, day 2, and the headache doesn’t seem as bad. It is still there but not as strong so time will tell if the prednisone works. It seems way to simple to be the solution, but you never know sometimes less is more.

  19. Chris says:

    My daughter is 14 and within the past month has developed daily headaches. Obviously, I am very concerned. I’ve taken her to a neurologist who believes that they may be migraines. He prescribed Topamax but it doesn’t seem to be working; and today she had to leave school because she vomited.

    Does anyone have experience with Topamax NOT working for them? If so, what did you take in its place that seemed to work?

    Right now, my mind is racing with a thousand different scenarios and I’m worrying myself sick.

    Any advice or words of encouragement are greatly appreciated.

  20. Lady D says:

    To Chris –
    With the 14 year old daughter on Topamax….
    I experienced a lot of side effects from Topamax, espec. cognitive difficulties, word choice…. Now I take Zonegran (Zonisamide) – I’ve heard it called Topamax-lite b/c it is also a seizure med used to treat migraines but does not have the tendency to produce side effects. I’ve worked my way up to 300mg at night but will get up to 400mg.
    I am 34. I started when I was 14. Words of encouragement? The love and support of my parents are what has kept me alive….
    Also – the inpatient clinic at Jefferson Hospital in Philadelphia is the best I’ve been to. Worth traveling to. Dr. Young has a god-complex, but he’s damn good at what he does…
    Good luck to you and your daughter.
    Good luck to all of you.

  21. Darla says:

    How does preventing a chronic headache help when you’ve had the headache for months or years? Not one of the neurologists could or would answer that question, I’ve seen three .I’ve tried inderal,topamax,effexor,imatril,nortriptyline,imitrex,amerge and Migranel I alomst died from that,but my half brother did DHE through his I V for a week and it cured his headache so far .These two drugs are very simuliar .He has had two previous head aches that were months long second one was cured by shunt insertion.I no longer use anything for my headache accept cannabis it doesn”t cure the headache it does ease it,but it does help with the naseua so I can keep some weight on and it helps relax me and the side effects are nothing compared to all of those other drugs.Everyone please becareful the drugs that are prescribed for these headaches are extremely dangerous

  22. sage says:

    My name is sage im almost 15. My headaches started back when i was 13. For 2 years me and my mom have been trying to find somthing to get rid of them but we were unsuccecful. I have been to many doctors, neurologists, and even chiropractors.I told all of them that It started with a horrible migrane that subsided but did not ever completly go away. Now i have chronic daily headaches. 24/7. The only time i dont feel the heasdaches is when im sleeping…but i feel them right when i wake up. i have tried alot of different medications and cures. Nothing has helped accept marijuana. I know its bad but when i use, i get complete relief from all pain from my head. I wish there was another way and i plan on finding that way somehow. I was recently prescribed a new drug thats suppose to keep my head stabalized and not constrict the vessels in my head. i hope it works but if not i also might try Topamax.
    This site is great, its nice to know that im not the only person suffering from this condition. If anyone has found a way to make these headaches better or cure them PLEASE email me at scomora@aim

  23. holli says:

    Sage I have been struggling with CDH for about a year now and have just found the right neurologist to correctly diagnosis it. I have been put on Topamax twice. Both times it messed me up. They fail to mention to you that its nickname is “dopamax” it is by far the worst medication I have ever tried. You experience severe fatigue, confusion, tingling in your extremities, and for myself exteme mood swings. It also causes depression, like we aren’t depressed enough from the constant pain. I would do your research before consenting to Topamax. Good luck in your search I hope you find relief.

  24. Jenny says:

    My husband has been suffering from CDH since August 2007. He is an Afghan War Veteran and suffered a TBI in 2004. We have tried all medicines including Topamax and are currently not on any medications, because we did not see the point in continuing a medication that was not working. After reading all of your blogs I feel so touched by all of you sufferers…I on the other side of the Headache want nothing more than the help my husband. Once again if anyone has any suggestions we would welcome the input. We have tried Meds, Chiropractors, Acupuncture, Acupressure, and anything else. Please let us know.
    Thanks

  25. Kelly Fischer says:

    Please forgive my perverse delight upon reading everyone’s stories & comments. Prior to finding this sight, all the first hand accounts & blogs I’ve read have generally fallen under hopeless or sanctimonious. I was hit by a truck as a pedestrian in 1986 & have had CDH since, becoming legally disabled in 2006. Like most of you, I should be a major stockholder in the pharmaceutical industry. I’ve done the holistic, herbal, asian medicine, quack medicine, invasive procedures & things too embarrassing & downright bizarre to mention. Lest I forget, I’ve also done the “mental health” angle. Anyone else gone down that garden path? I’m particularly fascinated by the multiple mentions of depression diagnoses. Who else concurs that being in constant, debilitating pain & not being depressed about is nuts? Like the rest of you, I’m on my umteenth pain doc & refuse to believe there isn’t something out there to help. I commend you all for your candor & bravery in this uphill battle. I also wish to thank each of you, in turn, as your postings give me more hope & courage than any medical professional has ever done! Best wishes, everyone. I shall look forward to following your progress here, should you be generous enough to share it.

  26. Katie says:

    Ahhh…Topamax. In the beginning I was put on 400 mg of Topamax and 3600 mg of Gabapentin (Neurontin). Yes, I was dumb as a fencepost. And I used to almost cry when I couldn’t find the words I was searching for (thank you, Topamax). However, in hindsight, it was worth it. I am not saying I am headache free, not by any means, but it is closer to 4-9 times a month and only 2-3 actually put me down for the count. I should also mention that I have tapered off my medication to the point that I am down to 200 mg. of Topamax and 600 of gapaentin, so my outlook on the cognative impairments of Topamax are a bit rosier (words are my life…or at least they were). I think I have tried everything, including ergot. But I also know that one person’s remedy is not another’s. I know that this has changed me fundementally for better or for worse (and oftentimes I question which). I freak when I have to leave work too many times. I feel like people this I have a low pain threshhold, when I know it is the opposite. And yeah, I hit rock bottom. Hard. Questions: 1) Has anyone had an operation to repair a deviated septum? How did it go? 2) Does anyone have a good alternative to flourescent lights in buildings (other than sunglasses :)). Thank you!!

  27. Dedee says:

    An answer to Katie I had the surgery for a deviated septum. My Nero said it was not work but the ENT said that was my issue. Well 3 years later still have headaches then another ENT sugested I have it done again. No way I had so much pain and it did nothing now do it again. Anyone been told it was allergies? I was told I was allerigic to wheat. So I stopped eating all wheat products and it is in everything. Anything with flour at all it was very hard and expensive. that did not help eighter. I have CDH for close to 4 years now. It ranges from mild to severe every day more of the day than not. It usually gets worse as the day gos on. And I have sharp shooting like pain also. My neck is always stiff and tight. I have had Chiropractors 2 Neros, 2 ENTs, 2 Dentist, Eye doctor, Theripist, and shrink, 2 Pain Management doctors. MRI of head, neck, back. all normal except arthris in back but nothing to do with my head. I wish sometimes if I have be sick why can’t it be something people have heard of Epilepsy, Lupus, MS, diabetes. I know that sounds terrible but no I will not die from headaches but it feels like it and I sometimes want to give up. Everyone around me is like oh just deal with it “I go to work when I don’t feel good or have a headache”. But they have no iead how bad they get or how draining it is day after day after day to struggle trough dealing with it with no releif. I can not function a normal life I could have it worse there are people out there more sick than me. People have canser and all kinds of stuff i never head of worse off than me I am sure. But it is like no one belives us when its headaches or we don’t count we are just weak or something. Even doctors esp doctors. One doctor wouldn’t even give me darvocet said it was a sickness like I was some kind of junkie. cuz the last bottle from another dr of 30 lasted me over 2 months (making sure to avoid re-bound). Now they are pulling Darvocet off the market cuz it is too weak. anyway glad to see I am not alone cuz I am feeling really alone. also, anyone have posative results with headache clinics which I have been considering putting my self in debt if it works.thanks again

  28. Deborah says:

    I have had Daily Chronic Headaches since January 6th, and it scares me that people have had them for years. I have already seen four neurologists, a neurosurgeon, a physical therapist, accupuncturist, and a pain doctor. I’ve had MRI’s, X Rays, and EEG’s. I’ve been on Lyrica, Advil, Presnidone, Tramadol, Bubitilal etc. So far, Advil is the only one that cuts them down by 50%. First everyone though I had neck spasms, but after unsuccessful physical therapy- they are now calling it a Daily Chronic Headache from TMJ. I am going to get physical therapy now for TMJ and a mouthguard. I bought this homeopathic head roll on thing today at Walgreens, and it seems like aloe on my head which helps some. I just need a miracle something, and I am afraid of Topamax. Has anyone else been diagnosed with Daily Chronic Headaches because of TMJ? I do not clench my teeth or grind at night…so I am not sure if it’s TMJ or not. I was thinking of using bengay above my eyebrows, but I don’t know if that would work. I am basically so desperate right now for something. Suggestions pleassseee!!

  29. Kay says:

    Two years ago, I had a constant headache that lasted nearly 6 months. After numerous doctor visits and medications I finally visited the Diamond Headache Clinic in Chicago. Shortly into my examination, the doctor diagnosed me with Chronic Daily Headaches and prescribed a daily medication that started working within a month. I highly recommend a visit to the clinic as they specialize in all different types of headaches. Every doctor/neurologist I saw prior claimed I had migraines and gave me different medications for such. Since I didn’t have a migraine, the medications never worked. Its worth a call to the Diamond Headache Clinic. Good luck to all.

  30. Kasey says:

    I have had chronic daily headaches since I was very young maybe around 4. I’m now 23. Most days I wake up with slight pain and have it till I go to bed. About once a week the pain will get worse throughout the day even if I take asprin or something else, it builds up so that by the time I get home from work I curl up in a ball and cry. I’ve even dreamt that the doctors gave me a pill so that if it ever got to unbearable i could take it and just die. I know people suffer from worse diseases and illnesses, but this is a horrible thing to suffer for so long. Ive tried so many different medications and had MRIs and MRAs and all that. They found nothing and the medications don’t work and they make me soo tired all day long that I cant function not only because of the headaches but because I’m so tired. Im glad to read your blogs. Does anyone know of other ways to help other than medication. I’ve read reduce stress… well most the time my headaches stress me out, and it is hard to reduce stress with the economy like this. I’ve also tried yoga but it doesnt seem to change my headaches. Let me know if you have ideas. It’s been almost 20 years and I am so ready to be done with this or at least ease it a little bit.

  31. Linda says:

    After reading what everyone hear has to say, it honestly doesn’t give me much hope. I too have had all the tests,all kinds of drugs, I also have severe vertigo which is a lovely combination when your brain feels like it going to explode and you go to lay down, and the brains in your head feel like a tilt a whirl. I have not tried Topamax,and from the sound of it don’t think I want to. I do go to a place in town that has an oxygen bar, and scented with peppermint does improve my headaches for part of the day. I know I am suppose to excercise, but when your head is bangin, the last think I want to do is make it bang more. I also have cpap machine for my severe obstructive sleep disorder.Piss on that Dr. too. So now I don’t snore, but still may get 5 hours a night sleep until the hose drips water on my face and wakes me anyways. It is a very vicious circle and I am tired of it. Sometimes if I didn’t have a 12 year old to keep my head and heart in focus, I don’t know what I would do. I quit smoking, I don’t drink, maybe pot would help..think I will ask my Dr. about that today. Good luck everyone. I feel your pain.

  32. sandra williamson says:

    I HAVE SUFFERED FROM CDH FOR OVER 4 YEARS AND HAVE BEEN TO 6 DIFFERENT NEUROLOGIST .MY FIRST HEADACHE STARTED WHEN I STARTED MENOPAUSE.ALSO
    AT THAT TIME I HAD JUST SEPARATED FROM MY HUSBAND.I FEEL MY HEADACHES WERE TRIGGERED BY HORMONAL IMBALANCE AND STRESS.NUTRITION,EXCERCISE,AND RELAXATION ALL PLAY A MAJOR ROLE IN CDH. OF COURSE ITS NOT THE
    TOTAL BUT WITH DISCIPLINE OF THESE 3 THINGS AT LEAST I CAN GET OUT OF BED AND TAKE MY HEADACHES TO WORK WITH ME. BEFORE I WAS TRULY BEDRIDDEN. TRY GETTING AT LEAST 7-8 HOURS OF SLEEP, EAT STRICK VEGAN DIET,AND STAY AWAY FROM ANYONE WHO CAUSES YOU STRESS.IF YOU HAVE NO CHOICE TO BE AROUND STRESSFUL PEOPLE LEARN TECHNIQUES TO KEEP YOURSELF RELAXED.AEROBIC EXCERCISE AT LEAST EVERY OTHER DAY FOR THIRTY MINUTES. DRINK ENOUGH WATER
    ACCORDING TO YOUR BODY WEIGHT.P.S KEEP A DAILY JOURNAL FOR AT LEAST 2 WEEKS.I PRAY ONE DAY SOMEONE WILL COME UP WITH A CURE FOR US MEANWHILE WE MUST HELP EACH OTHER. ITS A SHAME WITH ALL THIS MODERN TECNOLOGY WE HAVE TO SUFFER LIKE THIS I AM OVERJOYED I FOUND THIS GROUP.IF WE TRULY STICK TOGETHER WE WILL BE THE SOMEONE TO FIND THE ANSWER.

  33. Patti says:

    I agree with everyone and have been suffering with headaches since I was a child. I too have taken all the drugs and nothing has worked so far. Has anyone heard of the IMATCH program at the Cleveland Clinic? I saw a neurologist this week that wants me to start this program which lasts three weeks. It starts with a week of infusions and then multidisciplinary therapies.
    The comprehensive nature of the program simultaneously addresses medical, physical and emotional needs, combining medical management, physical therapy, and group and individual psychotherapy. I don’t know anyone who has done this and just wondering if anyone out there has heard of it.

  34. Anna says:

    I just read through all of these comments after a great deal of CDH research. I’m 17 and I’ve had constant headaches since last month, after I got over a sinus infection and double ear infection.
    I have a compromised immune system so I get sick a lot, but usually things clear up with time and I’m alright for awhile. At first they thought it was just a bad sinus infection or my ear infections might’ve turned into something more severe, but they’ve found nothing.
    So far I’ve had multiple doctors visits, including consultation with an ENT, MRI’s, CT scans, X-Rays, all of which said everything was normal. I have an appointment with a neurologist next week.
    I’ve been out of school for over a month now, have become severely depressed due to the stress, pain, lack of sleep, and I’m amazed by the strength of the people that have had this for YEARS. It’s terrifying when you don’t know exactly what’s wrong, It’s my spring break right now, and prom is in a little over a week, but I won’t be attending all because of this stupid problem. Along with the pain I’m sort of experiencing cabin fever.
    I’m going to continue my research and hope I find something that will rid me of this pain, though the people that have been suffering for years have a great deal of inner strength, I certainly never want to face it all of the time.
    Hope you find something that works for you!

  35. Lisa says:

    I too have suffered for years with chronic headache. Sometimes I have the full nausea and vomiting, can’t stand light ot sound, but mostly it’s just chronic neck and head pain. The chronic part started about 10 years ago. Prior to that it was a couple of times a month. I have tried hypnosis, accupuncture, massage therapy, nutritionist, neurologist, pyschiatrist, physical therapy, chiropractor, and even been to Emory. I have tried morontin, dopamax, and just about every currently available migraine medicine. I have tried anti-depressants and OTC meds. I have a NTI bite plate for TMJ. Nothing seems to really help for any longer than a couple of hours.
    I must admit, reading about the rest of you has given me little hope of finding a way to put this to rest, but I realize that a lot of people live with this daily, like myself. Even though sometimes I want to jump off a roof, I know if you all can continue to handle this, so can I.
    My biggest concern is I have an 11 y.o. son who now gets migraines about once a month and I am worried I have passed on this condition to him.
    Keep on perservering and don’t give up. Just think, 10 years ago all you could do was go to the ER and get a shot of something to help you forget the pain and maybe get some sleep. We have many more options now and I can only hope for more in the future.
    Here’s wishing everyone a pain free tomorrow.

  36. Kristin says:

    And here I was thinking I’m just crazy. Only recently did I learn about CDH and that my neurologist supposedly diagnosed me with it. I’ve had a nonstop headache since last October, and, like many of you, have gone through countless tests and seen so many people and been on weird drugs with no answers or relief. The hardest part is that I’m a senior in high school and have still been going through with my classes. I used to be a 4.0 student, but now I’m struggling to simply pass my classes. I used to always have my nose in a book, but I’ve only read a handful in the last six months, half which were for school. I feel inadequate, like I’m just not trying hard enough. And while I find my situation so parallel to all of yours, I’m scared that saying I have CDH will mean I’ll actually have to live with this for the rest of my life. It’s nice to know that I’m not crazy and that there are other people who understand. I felt so alone. At least if we’re crazy, we’re crazy together, right?
    Lisa, I hope that you are right. Science has made so many improvements in the medical field. It’s surely just a matter of time.

  37. josh says:

    i am on my search to find the base of my headaches they started 3 years ago. well the first 2 years wasn’t as bad but one day i had a headache and it lasted for 4 months so i went to the ER and they gave my a ct scan and he said that he see’s abnormal so he sending me to a nero to make a long story short i had a tumor that was growing from my skull toward my brain the size of a plum and they told me that was the source of my headaches. It was removed and i recovered from te surgery fast. well it was benign thank god but since my surgry my headaches have gotten worse i wake up and go to sleep with a headache it starts at the back of my head where my head and spine meet then distribues through my whole head everyday ive been on all kinds of meds like topamax and a bunch of other cant remember but nothing work if anybody has info or anything it would help

  38. Daily Hypnic says:

    It is so sad to see so many suffering from CDH, and many who have tried eons of treatments that have not helped. I have had migraines life long (hormonally linked after puberty), and in 1997 time they became CDH (for three years). I went to the Jefferson Headache Clinic as well as several other headache specialists, and was not getting much better after trying about 20-30 different meds and combinations of meds. I found out (through reading internet sites) that I probably had hypothyroidism, and in fact got tested and had autoimmune hashimotos thyroiditis with hypothyroidism. Soon after I started thryoid replacement hormones, my headaches lasted only 2 weeks per month, not all 4 weeks.

    Later in life (four years ago) I because stricken with daily morning headaches that woke me from sleep and were horrendous. I could not lay down or sit or my head felt like it would “explode.” I could only pace and cry for hours. After going to a specialist for 4 months who tried all sorts of narcotics and other treatments (nothing worked at all), he diagnosed very rare Hypnic headaches (inflammatory headaches arrising from an abnormal brain rhythm during rapid-eye-movement REM sleep). They can be mild, moderate or severe–mine are excruciating and they occured daily. I am now taking a very potent non-steriodal called Indocin SR as a preventative nightly and also take Depakote ER as a migraine preventative. I still have migraines 14 days in a row, every month, but they they are more likely now than before to respond to acute meds like triptans (I use Maxalt melts). The hypnic headaches are much less severe, and I am not having to go to the Emergency room as often. I still get depressed during the “14 day series” of headaches every month, and sometimes the pain and nausea/vomitting are very debilitating, but it’s better than daily. There is hope–I had lost hope at one time. I have a husband who is as frustrated as I am, but very understanding. There is a very good website called http://www.mymigraineconnection.com that provides all sorts of info about different types of headaches. Google “rare headache” or “rare types of headache” and you will find some very unusual headache types that are seldom written about. At the time I was diagnosed with Hypnic headache, there were only 70 cases reported in the worldwide literature since they were first “described” in the late 1970’s. Many physicians have never heard of very rare types of headaches, nor treated them. It is very scary when they can find no cause for our pain.

    I pray that everyone who has posted here finds caring physicians and treatments that work.

  39. craig says:

    I have had CDH for approx. 12 years. I go to an internal medicine Dr. who prescribes me preventative meds as well as DHE injectables. Topamax and Depokote didnt really help me but i know they work for some. I take amitriptyline everynight. I still get headaches about 5x/week. I was getting them everyday due to rebound headaches from excedrin but once i got off the excedrin with the help of DHE i have a couple days a week without having to take an abortive med. DHE and Treximet do a pretty good job to abort headaches but they are too expensive. I take excedrin once a week(any more may cause rebound). I am about to start taking inderal. Has anyone else benefited from it? Is anyone else in my situation dealing with expensive abortive meds? Any solutions? Thanks. crandall35@hotmail.com

  40. Sheri says:

    Wow, I am so glad to have found the rest of you, but like others said, it worries me because I am now even more afraid that I will be dealing with this for years. My headaches started a little over a year ago. It started with a weird face and neck pain that I chalked up to sinuses, since I always have had sinus problems. The pain would come and go, stay for a week usually. Bad but not debilitating. Well, last winter it landed me in the ER. I had been having what I thought were migraines for almost 2 days… nothing was really helping but in desperation for some sleep I took Ibuprofen plus a Vicodin. I woke within 2 hours and I literally thought I was dying. I spent that night in the ER, writhing in pain, sometimes sobbing, in the waiting room. They suspected a tumor or brain bleed, did a CT scan, pronounced it a migraine as the scan was normal. I was given a shot of Toradol and Vicodin or something, don’t remember now. I slept and slept and woke up with just a “normal” headache.

    After that they started coming more and more often and with each headache my anxiety level would increase. I was so afraid of another one like the “big one”. I have a very high pain tolerance, it takes a lot to get me to the ER!

    Anyway, long story short I have been to the doctor over and over and she and I are just playing the “What if” game trying to get to the bottom of this. Major obstacle is no health insurance so I do it all through a sliding scale clinic and she can’t order MRIs and further testing because of lack of clinic funds. She prescribed Toradol and Vicodin, both of which seemed to at least “dull” the pain enough for me to sleep and both are now losing effectiveness. The pain seems less severe but more constant and round the clock, though I will have blissful periods with no pain. This most recent bout started 3 weeks ago and I think that’s the longest so far it’s lasted without letting up at ALL. So I am scared.

    My latest “suspect” is possibly peridontal disease, TMJ, and bruxism. During this time I have discovered a cracked tooth and two more “bad teeth” that weren’t bad before. Also my teeth have shifted and I now have a gap and my previous orthodontia seems to have been a waste of money. Sensitivity, bleeding gums, ear popping, jaw popping, and INCREDIBLE pain every morning, without fail, in my head, face, jaw, temple, neck, cheek,.

    I am willing to have them yank all my teeth out today if it’s going to stop the pain.

    I’m just so scared that nothing will work and this won’t go away. I am a mom to 3 kids, have returned to college, and am heading for grad school in the next 2 years. I cannot imagine doing all that or maintaining my 4.0 GPA under these circumstances. Last semester I missed quite a bit but had understanding instructors and managed to keep my grades up. I don’t know how long I can keep plodding ahead. Thanks for letting me get it all out there though, and I hope everyone has at least a break now and again from the pain.

  41. Jory says:

    Hey there. I have had chronic headaches/migraines for over 10 years. I am 25 years old and have managed to get through life missing out on very little. However, as time goes on the headaches have become daily. I know there is hope though! I have recently given up dairy, wheat, processed foods, citrus fruits, bananas, onion, fresh risen yeast, pizza, caffiene, alcohol, and much more. There is such a long list of foods that cause headaches and my plan is to get rid of them all until i start having more headache free days that headache days. I also am gradually switching all my cleaning products to chemical free natural cleaning products. Natural deodorant, shampoo, conditioner, body wash, and laundry detergent. It sounds extreme but having headaches daily is extreme too and I am tired of it. I am also going to take a 30 minute walk daily. I am also taking 500 mg’s of good quality magnesium an a good b-complex. B2 does not absorb without all the b’s. I just bought a bunch of smart water (loaded with electrolytes) that I plan to drink 65 oz’s a day. I go to bed at about the same time every night and wake up at the exact same time every morning. I try to get 8-9 hours of sleep. I also see a headache doctor. He put me on prozac but we will see how that goes. Basically, I am coming at these headaches from every way I can think of. I refuse to live the rest of my life with daily headaches. I say all this because I know a lot of people that are reading these posts feel hopeless and desperate for answers. There are answers though. It just means EXTREME lifestyle changes which can take some time to adjust to. I have slipped up on many of these things but I just keep getting up when I fall down!!! I pray that everyone that reads this finds hope, discipline, the right meds and supplements, and most of all happiness even through the suffering.

  42. West in Florida says:

    I echo the previous sentiments of those that thanked everyone for your stories. It is the most difficult thing in the world to try to convey how life-altering CDHs are. I appreciate the fact that I now know that I’m not alone. I have epilepsy and migraines, but they are better controlled than I can ever imagine the CDHs ever will. I’ve done every seizure med out there (Topamax – in addition to the other listed side effects, it plays some mean tricks on your taste buds) even during my pregnancies. I’ve had MRIs, sinus & septum surgery, outpatient infusions, numbing meds injected into my face & scalp, multiple neuros and now a psychiatrist. Everyone seems to think that I’m either nuts or a drug seeker. At times I, too, am wondering if I’m crazy and somehow bringing this on myself. What awful memories I must be creating for my children. Thanks for allowing me to vent. I truly appreciate the forum on this site.

  43. Aryas says:

    Really surprised to know that so many people are going through this daily trauma…I had been believing that I am the only one or one of the unlucky few. I have been experiencing CDH for last 15 yrs (24X7) and no medication or alternative treatments seem to do the magic.

    Despite this I have tried my best not to lose control over life and have been managing all my day-to-day activities. Despite finding it difficult to study or concentrate I have managed high grades through school/college. I am into highly demanding software job for last 5 yrs and my perfomance had been largely appreciated.

    I am telling all this because, after these years of daily struggle and helplessness I have started going into dpression mode. I do not want to live with this head-ache but do not find a way to get rid of it. All the will-power that I have been using all these years have started to wane and I have started feeling like giving up everything and live a secluded life.

    Going through the experiences of all of you would definitely help me hold-on longer in the months to come. Thanks!

    Suggestion: Of all the things I tried, breathing-exercises as described in Yoga do relieve the CDHs. Unfortunately as of yet I have not maintained the yoga regime religiously. You may or may not get cured but it does enhance your over-all well-being and relieves the intensity of the headache…stating from my personal experience as a head-ache veteran:-)

  44. sherrie says:

    I am glad to here im not the only one that has CDHs. I have had them for over two years now had migrains since i was a teen use to have 3 to 4 migraines a month. When i got pregrant with my son at 40 i had a daily migraine during my whole pregranicy. Two weeks after he was born i thought my head was going to explode they said at the hospital my blood pressure went sky high and i could have dead. well any way i started having 3 to 5 migraines a week. medication was helping some now nothing helps. i have them 24/7. i was diagnosed with bipolar, hashimoto thyroid, and have CDHs. been to 4 neug, see a pysch,and been to cleveland clinic ( which they said was rebound headaches). did the DHE whithdrwal didnot help i do not take any meds only preventive but i stay in severe pain about every day my neck, arm, and spine is hurting now. i had to quit my job because i hurt so bad my mermoty is bad, angry spells. now i think i might even lose my marriage. so i feel for everyone out there in pain like me that can not find the help. good luck

  45. Doug says:

    Lots of people with chronic headaches have extremely tight muscles in the neck, shoulders and/or upper back.

    Get rid of that tightness, and a lot of times the headaches are reduced in severity or go away completely.

    That’s what happened to me back in 1996, when a friend of mine in the medical field used a vigorous acupressure-like procedure on my neck. It took several weekly treatments, but it got rid of my headaches completely.

  46. vicki says:

    my 12 year old daughter suffers from chronic daily headaches for two years now- diagnosed with pseudo tumor cerebri. has had two spinal taps to alleviate fluid and also on diamox but still has headaches daily which she states are a 10 all of the time. has tried all medications however nothing is touching these headaches. my heart go out to all of you who suffer from these daily headaches. we are just trying to keep her focused on school and give her support every day. any other parents out there who have children with this condition I would appreciate some words of wisdom. Thanks

  47. Hi Vicki- so sorry you and your daughter are having to deal with this. My daughter is turning 16 soon and has had CDH and migraines the last 4 years. She says the biofeedback helped her the most. Of course after the original 10 sessions the insurance said no more! The counselor did not have the correct initials after her name. Gee thanks! At 60$ a session we have not gone back. Just ordered a “biomat” which the counselor used in her office. 600$ for the smallest one- but it seemed to help at the very least in relaxation. Sometimes she would literally fall asleep in the car! I’ll let you know when it comes how that goes. Neurologist wants to add Welbutrin (generic) now. She has no energy (probably from the topamax). Anyone had experience with it???? Scary stuff some days. We should have a CDH conference or retreat so all could share or at least meet someone else with CDH. Are any of the neurologists actually working on this?? Thanks!

  48. Meredith says:

    hi…thanks so much for your page. I don’t have the patience to read through all the comments but wanted to piggy back and on your top 4 contributors to daily h/a, sorry for reptition but I am constantly learning new information and love to share as well…1.Medication overuse (rebound) headaches…this is HUGE! know what exactly, how much, how often, you are taking and take what your dr. says with a grain of salt b/c we all respond different to meds. All my docs argue about what can cause a rebound so I just have learned through trial n error. I rebound after 3 days of a triptan and my neuro says “take 5 days in row…” but no way for me! So on that note, also, learn & know your headaches! I know my rebounds from a tension from a migraine, n what triggers all of those, what I can control n what I can’t. Rebounds can be avoided if u know your culprits. If you think you might be in a rebound cycle ask for help to get out of it.
    2.Failure to treat a co-existing medical condition such as depression or a sleep disorder…
    other co-existing problems can be TMJ, a mild fibromyalgia (the diagnostic criteria has changed now), chronic fatigue syndrome if your headaches pattern has changed at one point look at this, anxiety, general stress and not taking time for yourself to relax regularly, as easy as walking 2-3 xs per week for 20 min and making sure to breath! I did acupuncture. The needles didn’t do squat for me but the massage that came after really helped! Make sure to take time to take care of #1!
    3.Unrecognized medication-induced headaches, such as might occur from cholesterol drugs, proton-pump inhibitors for GERD, and anti-depressants…I can’t tell you how many times I complained about my daily headaches and a dr threw an antidepressant at me, causing even more problems! Messes with your body chemistry, hormones, metabolism, appetite, sleep, etc., all things that are vital for people with headaches to keep steady, sticking to a routine for eating n sleeping. Don’t skip meals and snacks! And watch those food triggers. Refine sugars, chocolate, etc. all in moderation. I know, when u don’t feel good it’s all about comfort food, releases serotonin and makes us feel better, it’s so hard! :(. But on another note if you are going to make any kind of change in your routine that is in your control, whether it be a new med or a food change, only do one at a time so you know if you feel better or worse what it is that is doing it. And give your body at least 3 weeks to adjust to that change.
    4.Failure to investigate the possibility of relatively rare causes of headaches such as abnormalities at the base of the skull and top of the spine (craniocervical junction), intracranial hypotension (low-pressure headache), sinus abnormalities, and food or environmental allergies…heard of this but never actually met anyone. Another rare one is the heart valve not closing all the way.
    Sorry if this is all repeat stuff. Good luck to you all and take it easy, stress only makes it hurt worse! ~health and happiness

  49. Meredith says:

    FOR VICKI…
    have you tried alternative therapies, like biofeedback, visual imagery, guided relaxation, guided meditation? things to help her take her mind off the pain…watch her favorite shows (with sunglasses on maybe) that make her laugh, read to her..things to distract her. light massaging, stuff like that? coping strategies. let me know if you want more specifics on any of these things, very easy to do and free to access! not a cure but help pass the time faster, and if you try enough things u might actually find something that relaxes her. maybe you’ll even catch a glimpse of something that resembles a smile!

  50. Meredith says:

    1)Re: deep breathing…have heard it helps and when I was practicing meditiation it helped me as well. Thanks for the reminder, Aryas, about the yoga…the stretching is also great whether you do it in a yoga practice or just learn proper stretching throughout the day for your upper back/shoulder/neck, and it’s relaxing. Always helpful!
    2) Was talkng to a dr about the sensitivity to light, sound. It’s so bad for me i rarely go out to eat. He said seroquel may help with this (super low dose, it makes u sleepy, probably the XL)….and maybe something for SHERRIE to look into, it’s very calming!!! 🙂 Sounds like you need a lot of support, hon. I hope you have medical professionals you feel you can trust. Not just Sherrie, but we all need that huh! Hard to find!

  51. Lisa says:

    Thank you all for your comments. It brought tears to my eyes seeing that others struggle in the same way as I do. I’ve had CDH for 10+ years now and have found no relief. I go through cycles with neurologists, get frustrated and quit. I just started with a new neuro today and he put me on Lamicatal. Has anyone tried this med? The list of side effects are LONG. It’s so frustrating and EXPENSIVE trying to figure out what is wrong with my head. Everyone thinks they have the answer…I wish that were true! Good luck all and PLEASE keep sharing your successes. They are few and far between, at least on the web!

  52. caz says:

    I’ve suffered from chronic daily headaches for the past 5 years now and living in the uk the neurlogists over here are reluctant to do much except just stick u on medication and leave u to it i have been on topiramate for the last few years on and off it seems to work most the time but recently i have had a lot of migraine attacks which have got worse each time if anyone has any advice or words of wisdom please help my e mail address is cazzy1980@live.co.uk many thanks caz

  53. Jan says:

    I have suffered with migraines since I was 16. at first they were associated with my menstrual cycle. I went on the pill and they got better. After I had my 3 children I had my tubes tied and the headaches seemed to get better. I would only have one maybe 2-3 a year. It has only been recently, I am now 46 that the headaches have gotten worse. I have had the headaches since march. I have been put on metoprolol, hctz and esgic plus with little to no relief. my doctor just put me on elavil last week so I have to give it time but so far no relief.I also am on armour thyroid for hypothyroidiam, rheumatoid arthritis, a bleeding ulcer and hx of pancreatitis. I do not drink alcohol. I have had the headaches everyday since march. It was thought to be stress related , took some vacation time but still had the headaches. i am a nurse, as well as office manager in a doctor’s office so my job is stressful. I don’t know what else to do. I am tired of the headache everyday . I pray that the headache stays away everyday but I end up with it anyway. Topamax was suggested but it expensive and not covered by my insurance. besides the side effects can be substantial and I am not sure I want to go through that. I have to be able to focus at work and it’s hard enough to do with the headache .
    any suggestions would be appreciated. I have tried the gluten free diet which did not work. I don’t know what to do. even as a nurse I am at my wits end.

  54. Kathryn Scott says:

    I want to suggest to everyone that they make sure they get an MRI if they have continual headache, vertigo, or focus issues. At age 54 I was diagnosed with hydrocephalus (excess spinal fluid in the brain), and it was only by chance that I found out through having an MRI. It is very pronounced, and I had a brain shunt put in last month to drain the fluid. I evidently had had that condition for years, because one of the ventricles in my brain was very enlarged. Before the diagnosis, I was taking Excedrin Migraine continually for what I called my “pressure headache;” I would have intermittent migraines with severe nausea, and I had low energy, which was (mis)diagnosed as depression. Hydrocephalus in adults is a rare condition, but it is often misdiagnosed and goes untreated. So I urge you to get an MRI, if you haven’t already had one. Good luck!

  55. SHERRIE says:

    This is me again comment 44. I still have cdh everyday. had botox made me worst. 20 shots between my neck and headache. had a spinal tap too. still the same nothing helps hope everyone else can find help.

  56. Kandice says:

    I have had CDH for 33 Years. When I was younger, I had migraines. They quit after I had a child, or,also, after I had bowel resection due to Crohn’s, and the migraines were replaced with the CDH. Tried everything mentioned above from bio-feedback to many meds. I, always, ended up at a Psychologist(& they say I am nuts) and on meds. No doctor really understands. Recently, I had a MRI. It shows I have a meningeonoma (sp). It is benign, and isn’t growing. Nuerologist’s, I was finally was sent to one, say this isn’t a contributing factor to why I have had them for so long. Glad to see that they are finally recognized & labeled as something. I take Gabapentine which takes the edge off, and, allowed 1 vicodin a day which helps.

  57. jen says:

    Hi there….I have been dealing with CDH for over 10 years…and migraine for25. you name it, I’ve done it. be very careful with the headache drugs outthere. many CDHs are due to rebound from these very drugs. anyone suffering should keep searching for he cause….don’t forget what your body is saying. something is wrong. try going gluten free. try going dairy free. don’t underestimate food intolerances. I have isolated many severe headache triggers. I’m having good luck with applied kinesiology….and controlled diet. The massive headache drug loop will never cure you. I’m sorry you are all suffering, too. Keep searching.

  58. Linda says:

    Has anyone tried botox treatments for chronic daily headaches?

  59. Aoife says:

    I am 41 and have had a headache for the past 8 weeks non stop brought on by one severe migraine. I was taking over the counter medication for back pain for a number of years and think this is the cause of the CHD. I have been put on medication by the neurologist steroids, antidepressents and Zomig. By the reading all the other blogs if I dont get to stop this cycle now i will have it for years.

  60. Steph says:

    I am 27 and have never really had headaches before. Sure, a headache on rare occasion, and a handful of migraines in 26 years, but a little over a year ago I got a sudden headache that made me dizzy and nausious.. I seriously thought I would have a seizure any minute (I’ve never had one, but at that moment I was convinced that is what it would be like).. After seeing a dr with no success, and going to a neuro, they did a CT scan and found out I had a developmental venous anomaly that had leaked blood into my brains white matter.. The migrain went away and I’ve had a headache since. It is constant pressure from the center of my head.. Nausia, vomitting, dizzyness.. At my last appt, the dr threw out the chronic daily headache idea. All I could do afterward is cry. I feel like it’s sucking the life out of me.

  61. SHERRIE says:

    Hello, I still have CDH and yes to anyone out there if you take to many pain med over tne counter or rx you will have rebound headaches than can do what is called DHE which can be done in the hospital Cleveland Clinic does it too. It never worked for me mine wasn’t rebound headaches. But I do believe when #57 jen says your body is telling you something is wrong don’t give up keep finding answer

  62. boni says:

    Hi
    I noticed that many of you posting here are on anti-depressants such as Prozac or Lexapro. These are known to cause migraine in susceptible individuals. They caused migraine for me. I have had migraines that have morphed into CDH. My problem is I take too many Advil and sometimes percoset, which both cause rebound but sometimes I’m just so TIRED OF THE PAIN. I know you all know how that is! Anyway, keep in mind the anti-depressant thing. All SSRIs can cause migraine. (I don’t know about MAOIs…)

  63. snookie says:

    Hey everyone,
    I am so relieved to know that I am not alone in my pain with CDH.I have severe daily headaches x 4 long years!!I have tried pretty much everything that has been mentioned by others.Other than the chronic pain,I have a hard time with the feelings that go along with the stress of all that I miss out on socially.I struggle with feeling like I am not reliable,not responsible because I have to cancel the things in life that are important to me.I find that I am very isolated because I never feel well enough to follow through with the things I want to do or need to do.Can anyone relate to the way I feel??I am completely depressed (have been on many anti-depressants that did not help)I want a cure that does not involve being doped -up!!

  64. alessa says:

    Hello Everyone,
    I am a 14 year old girl who has been dealing with cdh for the past 16 months. My neurologist told me I could be like this for the next 5 years. I am currently on topomax. I’ve had 2 mri , one with dye and one without; ostheo;physio and other natural remedies. Nothing seems to work , and often I get discougared. Since i’ve read this blog, its made me more aware how many people suffer just as much as I do. My hearts go out to everyone who is suffering and just remember theres worse things in the world.
    xoxo

    ********
    Aleesa,

    I’m so sorry to hear that you have CDH. With chronic daily headache, it is important to know the type of headache that it is — migraine, tension-type, medication overuse (rebound), eyestrain… There are many different causes of headache, whether it is daily or not, and they all respond to different treatments. I recommend seeing a headache specialist, if possible, instead of a general neurologist. Headache medicine is complex and getting an accurate diagnosis is crucial.

    It is also important to get treatment as early as possible. The longer someone has chronic daily headache, the more difficult it can be to treat. It is great that you are already seeking treatment beyond your primary care physician. There are many treatment options and almost everyone finds an effective treatment.

    The National Headache Foundation is an excellent resource. The complete headache chart may be helpful for you (http://www.headaches.org/education/Headache_Topic_Sheets/The_Complete_Headache_Chart). The physician finder (http://www.headaches.org/physicians) is a good start in finding a headache specialist, though it is not comprehensive. Here’s another list of specialists: http://www.healthcentral.com/migraine/headache-specialists.html.

    I wish you the best of luck!

    Kerrie

  65. alessa says:

    Hi Kerrie,
    Thank you for this health chart , it helped me analyze which headache I do have; and It is Cdh.
    I also get facial and nerve pain on my face when it becomes really hot, or cold. Do you have any reccomendations or suggestions? I am seeing a specialist in about 6 months , so he will tell me furthermore about my problem.
    Thank you anyway,
    Alessa

  66. Kristie says:

    Hi Guys,
    I’m also 14, and I’ve had CDH for 4 years now and I’ve gotten acupunture, seen a chiropracture, gotten a MRI, everything under the sun. Thank you for everyone whose posted on this! I always felt so alone, and after reading this, I didn’t. But I’m sorry you guys have to go through it to!! My headaches are constant and extremely uncomfortable. It feels like circles of pain around my head, and they move on a day-to-day basis. Any ideas?
    Thanks!
    Kristie

  67. Kathay says:

    Hi everyone, your words are encouraging in the sense of knowing how many of us are out there. I am a 59 yr old female, started having migraines mid-90s when I was being treated for hepatitus C. Had occasional ones and a variety of medicines until they started becoming more chronic over the last two years. I stopped working a year ago, and now have dch. My HMO made an organizational decision to not give anyone narcotics that formally was getting them. Nice flip off to the pain management community. So here I am, can use triptans 2x a week if need to, suffer the rest. Luckily live in Oregon and have marijuana license and my afternoon “cookie” has save my butt. No headache until around noon then I take the cookie or triptan to combat. I am one of those people who DO NOT like being stoned on weed, but it has definitely given me relief from pain. I see a headache doctor whose primary treatment is to subscribe different meds that work as “preventatives” — epilepsy drugs, high blood pressure drugs, anti-depression, etc. None have worked. The ironic thing is I did developed epliepsy around the time the headaches started so also have another nerologist for that, have had xrays, physiatry, chiropractic, massage, accupuncture, OTC medicien — nothing works in the long run. My happy social life has been ruined except for some diehard friends who realize what pain is like. Now I worry about marijuana problems (addiction?), but it is the only game in town. Try to see the spiritual side of things. Watch alot of TV in a dark house. This is life in Portland Oregon. God speed to everyone in the long strange trip we’re in. Kathay

  68. Sandy says:

    Hi all. I just came across this website which is great but I am also worried sick. My 11 yr old son has developed chronic daily headaches and so far every medication we have tried is not working. He had a CT scan and an MRI done in May and they came back okay. The problem is, his pain is bad enough to where he has already missed a month of school and I don’t think he is going to go back anytime soon. He is on Prednisone and Topomax at the moment and I just gave him 50mgs of Imitrex about an hour ago which is not seeming to do anything either. Prescription pain meds also do him no good.

    I am so afraid. Not only to see him live with 24/7 pain but also about him not being able to function enough to go to school. Have any of you not been able to function daily? Also, how do you live with the pain if nothing has helped you so far? The neurologist can’t seem to tell me that things will get better. What kind of life is this to him? As a mother, I just cannot bear the thought of him living this way. If anyone can offer me any kind of advice or help, please email me at sandylflowers@gmail.com.

    Thanks so much.

  69. Jay says:

    I’ve been having CDH since January this year, at first I thought it was just like any other normal headache, so was taking OTC painkillers like co-codamol until the headaches were getting a lot more severe. I was told from my doctor that they were daily headaches and medication overuse headaches, so I had to stop taking them and was prescribed Amitriptyline. This medication was numbing the pain but I felt like it wasn’t getting rid of the headaches. Two months ago today I had a very stressful moment in my life and the meds stopped working and I was only getting the side-effects from the drug (about 20 of them). I was then put on Propranolol, which didn’t do anything for the headaches. I’m now on 900g of Gabapentin a day. This also numbed the pain the Amitriptyline, but has stopped working two weeks ago and I’m just getting the side-effects from them. I can’t see my doctor for another week, so have to struggle with the worse pain I have ever had. Reading all of these blogs have given me some hope that maybe one day I will come across a cure, because I can’t live like this any more. I had to quit my job because of the pain, I’m starting to struggle with my college work and most everyday tasks. I no longer know what to do. I’m also waiting to see a specialist and maybe I should try and get some scans done in the mean time.
    I know stress and other factors like that can bring on my headaches, but when I get stressed and depressed because of my headaches, they just get worse. I’ve tried different sorts of relaxation techniques, but none work. I go to bed with a headache and wake up with one. They just won’t go. I hope everyone finds a cure for this, because it is the worse things to have. I respect all the people who have managed to live with this for most of their lives. E-mail me any suggestions that you might have – stonerj9@hotmail.com

  70. Richard says:

    I’ve had CDH/ migrianes for about 6 years. I’ve tried just about everything under the sun as far as meds and nothing worked for more that a week or two. I have a number of underlying conditions such as high blood pressure, cholesterol, obstructive sleep apnea, low testosterone.I took a spill from a 15-20 foot and broke a hip and jacked my neck /shoulder up in 96. I was treated for depression but feel sleep depravation most to blame due to apnea. I went to a chiroopracter who did great things for my shoulder neck injury that helped relieve headaches by about 30%, CPAP helped a great deal as well. About six months ago I tweeked my neck and my headaches have been getting progressively worse hopefully the chiro can fix when I get the money set aside. My headaches radiate from my temples and if you touch the side of my head you can feel these little hard knots which are the muscles tensing up. If Vicodan doesn”t work I massage the knots with as much pressure as I can stand to fatiuge the muscles this usually forces the muscles to relax. You may want to look into holistic options, was doing some research and feverfew and a combo of lavander and peppermint oils was mentioned but didn’t dig into it. I find that if I do something I really enjoy sometimes it can take my mind off my headaches to get a bit of break, also my headaches are present upon waking but don”t ramp up till noonish and tend to get better arounf 10 – 11pm to a bearable level. Sorry if I ramble buttype the way stuff pops into head

  71. Angela says:

    I am 45 years old and have had a headache every day since I was 14. I have missed out on so much and live in constant pain. I had work done on my jaw for TMJ, went to a Chiropractor for years, got glasses, massages, MRI’s, CT Scans, EEG’s,seen countless doctors and tried too many medications to list. Eventually I was diagnosed with CDH – which was such a blow! It basically was saying “we don’t know how to help you!” I have had some relief lately with the meds that my current neurologist has me on – Zoloft, Zyrtec, Amatriptyline, Topamax, Atenolol and Gabapentin. I hate that they cause me to be lethargic and gain weight. I went off all the meds last summer and got back down close to my regular weight (I am 5’1″ and like to weigh about 105ish). Unfortunately, the headaches came back full force and I couldn’t stand it. I went back on all the medications and am back up to about 125 again. It doesn’t help that I am so sluggish that I don’t want to exercise. Also, the drugs absolutely kill any libido I had left – which isn’t helping my marriage at all. I have been in contact with a surgeon in New Orleans that does a brain implant. He has had great success. I know it sounds extreme, but all of you know that when you spend every single day in pain NOTHING is too extreme! HECK, if a doctor told me to sacrifice a chicken at the end of my bed every night to relieve the pain – I would be raising chickens! Good luck to all of you….I feel your pain.

  72. Phyllis Collins says:

    I have had CDH for about 5 years now steadily increasing in severity to the point of not being able to work or even function on some days.
    We originally thought that my blood pressure could be the issue since it was very high, turns out it was high due to the pain I was going through. I also have continous noise in my head that sounds like a air conditioner.
    I rate both the headaches and the noise seperately as a headache can be at a 8 on the scale of 0-10 but the noise could be lower or higher and vice versa.
    I feel as if I have been a guinea pig as to the different medications and treatments I have had.
    I do have several diagnosis that we are working on with the nero team of doctors and specialists that I see.
    I have Hashimoto Encephalopathy along with my long standing Lupus and Myatonia and a couple of others all being autoimmune disorder issues.
    I have gone through so many medication changes, IVIG treatments, chemo treatments steroids, just to name a few.
    Where there are certain med treatments that can be good for one of the problems if you have a combination of active issues the medicines tend to fight each other and it can feel as if there is a war going on in your brain.
    I have asked the Doctors to put me into a Coma for some relief but they said and were probably right that when I woke from that, I would not even realize I was without it for the time I would be out.
    Currently I am on strong doses of dilantin, gabapentin, and several others.
    Now due to the severity of the headaches that I wake to in the mornings I also get occular migraines as they have been labeled – which causes the eyesight to go out of focus for from 5 to up to 15 minutes – so now do not trust driving myself anywhere as they seem to come out of the blue.
    The headaches have now been labeled as epilectic type seizures which are causing loss of abililty to remember some things and finding words difficult, stuttering at times, etc.
    Where I did not think I was Einstein at least I felt some smarts but feel as if I am losing the battle and getting “stupid” a word I do not like and my famiy does not like either, but in truth that is how I feel. (The correct label now is dementia. That really makes me feel better.)
    I now just three weeks ago have been told that I also have a small (probably) benign tumor in the area of motor functions that we will need to watch but Doc’s feel that is not contibuting to the extreme headaches.
    I live with morphine daily which I hate but have to have something.
    I am living in a fog world and totally understand anyone’s frustration, depression, etc. that are also dealing with this. My heart and best wishes go to anyone that remotley has these types of problems.
    As the saying goes “I would not wish this on my enemies”.
    Still all this being said it is good to read that I also am not the only one out there with these issues.
    Best wishes to all and good luck on finding a solution..
    I am now going through Botox injections which hurt extremely and do not see why anyone would want to subject themselves to without a really good reason.
    Please excuse any mis-spellings, or repeated items.
    Phyllis

  73. DawnF says:

    I started off suffering from migraines and severe headaches once a month when I was about 16 years old. Over the years they got worse and medicines piled on and changed but I tried EVERYTHING. I am terified of needles but even went to try the nerve blocks and am now trying botox. Although the botox seems to be helping nothing stops them. Various members of my family have had migraines but no one has them like I do. Some days I honestly feel like putting an end to all of it but I like life too much. I love my family, my career, my friends, all of it. The only thing that dulls the pain enough for me to function on a daily basis is codiene (trust me I have a laundry list of medications that they have tried me on and nothing last). My neurologist has just informed me that he thinks I’m overusing the medicines. I beg to differ since I am the one still in pain. I have stuck with him through all of the “try this” and “let’s see if this works” – I feel like a guniea pig and I DON’T like being accused of over-using. I admit it is a fine line that I walk but what do I do. I have listened to him and tried EVERYTHING asked of me. I keep telling the doctors that it is not just one problem but several, each one seems to have a huge ego and doesn’t want to listen. I have had multiple head traumas, I suffer from very serious sinus inflamation which causes an unbearable pain in my head, TMJ, you see. No one looks at the big picture. In all honesty my finances are limited and sometimes the medication and co-pays have neary bankrupt me. What should I do!?!

  74. Alex says:

    I’ve been suffering with migraine all over my head an dizziness for just over two years now. I was diagnosed by my neurologists with chronic migraine a few months in and put on amytriptyline which took my migraine away for a about 3 months then it returned with a vengeance. Since then I’ve been on topiramate which didn’t help an made me feel sick and gave me terrible fatigue. I’ve now jus started on pregabalin four weeks ago and had nerve block injections last week so far to no avail. Ive had every test under the sun and had physio, accupuncture sn even a chiropractor none of which has helped. I’m at the end if my tether with this pain an dizziness as I’ve just had to go back to work after being off ill for th second time for ten months an was about to lose my job. Now each day I get up with the horrible feeling i dread goin into work and putting a brave face on. Fone days I feel like dying just to escape this illness, I feel like I’m trapped on my own body. Does anyone no if this will ever go away an I will be able to resume normal life or is ther anything else I can take or do to stamp this thing out. I’m desperate and will appreciate any suggestions Thanx x

  75. Sez says:

    Hello All,

    Firstly, everyone is so strong to put up with this.
    Secondly, It is good to know we are not alone. Someone once told me – that whatever it is you are feeling, there is someone out there that has felt the exact same feeling. So in our darkest and most frustrating moments it is helpful to remember there are many other people out there like us feeling the same way.

    It would be nice to find some stories out there of people whose headaches went away. I feel like I need some hope right now.
    If anyone knows of anything that would be promising.

    I have no history of migraine or headaches.
    I woke up one day, almost exactly one year ago with pain in my sinus area which spread and became an intense unbearable pressue and pain in my whole head. The severity varies but is constant 24/7. Saying that I did have more occasions of lower level periods during the earlier periods in which I was able to function more sociabley and work wise.

    I never used pain killers, they didnt really work anyways and have always been wary of rebound headache effect.
    tried gabapentin for 3 months didnt do much. Caught a very bad cold 6 months into the CDH and the pain got worse and worse after that. Increased the Gabapenten weekly, made no difference. Pain continued to worsen. Cut down all social activities to none in order to be able to cope with work. eventually broke down and gave up work. Tried beta blockers (propanonal), made me want to kill myself (a rare side effect) and pain severity shot up to maximum for 3 and a half weeks solid.

    Went on topirimate, reduced pain at 50mg a day to lower level but still daily, increased to 75mg, made me feel like not living anymore (a more common side effect) reduced back to 50mg, pain increased but after 6 weeks slowly reduced back to a lower level.

    Topirimate doesnt seem to be the answer, but in the short time I have taken it, at the low dose I can tolerate (still have bad side effects at hormonal time) it has so far kept the higher level pain at bay for the past 7 weeks… but this might change, plus the lower level pain is still too high to function normally (i.e. can’t watch TV, go out etc). So not really a long term solution.

    I have tried changing my life – I’m not working, I left London and living with my parents, I am gluton free anyways, I dont drink or smoke or drink caffeine. I practice yoga and meditation almost daily.
    I swim occasionally, but do need to try aerobic exercise.

    A friend told me of his cousin that suffered from this and how it just went away… So he will put me in contact with her. Fingers crossed it might give me some hope.

    A realistic hope for us all is to find a doctor we can trust, medication that manages the severe pain and brings our pain levels to a more functionable level so we are more present in our lives without the terrible side effects they can sometimes have, and a way of life that allows us to find enjoyment, relaxation and peace.

    I pray for us all that if we are not pain free – this is what we can find.

    xxx

  76. kathay says:

    Hi everyone, I’ve gotten a new diagnosis from a dentist specializing in TMJ. My regular dentist had sent me to him for bruxism to see about my bite. He said I didn’t have anything wrong with my face or jaw and I started to cry. (Of course I had imagined this new specialty dr. was going to have the diagnosis to save me). He asked me what was going on an I described my headaches — top of the head and throbbing eyes — like a terrible tension headache. He said I had a problem with my spenius capitis muscles. Photographers, whiplash accidents, bird watchers — lots of people get this. I have mine through years of bad computer posture. Long and short of it, I’ve had some anesthetic shots in the back of my head and it’s helped. Before nothing much did. Please look up this ailment and see if it fits you. There are several sites and even a clinic that treats this condition. I think that’s why the migraine stuff never worked for me — I went through all of the pills, the botox, everything — but I’m suffering from a muscular oriented headache not neurological. I eventually got kicked to the curb by our heroic migrained doctors here. I hope this is something that works. I’ll let you know.
    Keep your head up (ha).
    Kathay

  77. STAN SMITH says:

    I’ve had chronic 24/7 Headaches AT THE TOP OF MY HEAD (temples), for 30 years..Ever since I had 2 strokes the day after I quit smoking (40 years)..i’ve been on Lorazapam (Ativan) 1 MG morning, noon & nite..Its always worked & I’m not immune to the medicine yet..It was only thing I could get to alleviate the Pain..Laying down helps some thru the nite..I went to Sapers Detroit Clinic,Cleveland Clinic & dozen of uroligists , accupuncturists,chiropractors &
    Pain Clinics, to no avail….I Pray this Med will Help some of you sufferers…Let me know!!!!
    Snuffy(85)…

    ********
    So glad you’ve found something that has helped for so long! Benzodiazepines are no longer a frontline treatment for chronic headache or migraine, but can be helpful people who don’t respond to other therapies. http://somebodyhealme.dianalee.net/2010/04/tranquilizers-for-migraine-prevention.html. Sounds like Ativan has been a good help for you, though.

    Take care,
    Kerrie

  78. OE says:

    Hey there! Someone in my Myspace group shared this site
    with us so I came to take a look. I’m definitely loving the information. I’m
    bookmarking and will be tweeting this to my followers!
    Wonderful blog and superb design and style.

  79. John Henshaw says:

    I am the unluckiest man that has ever lived in the entire history of planet earth. Chronic daily headaches resulted from a collision with a tree. But where do I go for help in London? Does anybody know the answer to this question.

  80. Andy says:

    Hi All,

    I have a headache tonight which is 99.9% probably brought on by daily stress at my job. I was fumbling around the internet looking for a miraculous cure when I found this site and got hooked reading the testimonies of all you.
    I’m sure my comments don’t mean much to all who suffer daily but I am suddenly very grateful for my headache tonight simply because I DON’T have CDH and didn’t even know it was a condition anyone suffered from! I haven’t stop thanking God for his mercy that my occasional headaches leave after I sleep for the night.
    I feel so bad for all of you, and am praying for you, God bless.

    • Andy, thanks for your comment. It’s rare for someone without an ongoing headache disorder to recognize how difficult it is. It means a lot that you both recognize this and shared your thoughts with us.

      Take care,
      Kerrie

  81. Marion says:

    Hi. I decided to do a search on “Chronic Daily Headaches” today. I came across this blog. Thank you everyone for taking the time to share your stories. My daughter (13yrs) now, suffers from a daily, constant headache. This started last year after she jumped into a lake from a boulder and “slapped her face” against the water. Had an immediate bloody nose and headache came on some time after this incident. She was at an outdoor adventure camp for 3 weeks. I had to pick her up due to the intensity of her headache and the altitude didn’t help it. One doctor stated she received a concussion. She was treated for sinus infection (twice); MRI’s; CT scans; seen her pediatrician many times; ENT specialist; Ophthalmologist (vision changed); and a neurologist. Today is exactly 10months that she has had a headache. I do not want her enduring years of this. Reading your stories has helped me to continue pushijg her medical doctors. One thing stands out is the “spinal fluid leak” comment in one of the stories. She feels better lying down. She feels better when she’s received “Cranio Sacral Therapy”. Headaches do not go away, but from a 8/9 they are reduced to a 2/3 in the hour session. Also she zonks out and falls deeply asleep! I know she is feeing better then. Thank you again for your stories. It does help me to understand the difference and that she isn’t alone (which I already knew). I will continue to advocate for her with any of the medical doctors!! Thank you….

    • Marion, I’m so sorry you have to see your daughter go through this. Persistent headaches can unfortunately follow concussions. It’s possible to have headaches caused by low spinal fluid, though it is unlikely to be connected to the injury. It can be tested for a lumbar puncture. http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/headache/conditions/low_CSF_headache.html. I’m glad the CST is helping her.

      Take care,
      Kerrie

    • Katie says:

      Hi Marion,

      I just turned seventeen a week ago and this past week has been the year long anniversary of the second of two concussions I suffered last year from volleyball. I still have a headache and other symptoms everyday, very similar to what your daughter is going through. I have seen many many doctors, gone through vestibular therapy, and even gotten weekly massages (cranio sacral too) to help reduce pain. Last year I missed over thirty days of school my sophomore year in high school. I have tried at least eight different medications to try to combat the symptoms. I would recommend taking your daughter to a neurologist that is an expert on concussions, migraines, as well as dizziness. I have been on a new medication called divalproex for about three weeks now and finally something seems to be helping even if only a little bit. I know this might sound strange but a psychologist might help your daughter too. I started going to one and haven’t stopped. Throughout this entire process, it has been extremely difficult to understand what is going on inside my body and why I am still not getting any better. Seeing a psychologist definitely has helped me. I would also suggest going in to see an optmologist. It is possible your daughter might have some vestibular problems or tracking problems with her eyes. I currently have nastagmus, which supposedly is partially contributing to some of my headaches. Previously I had a multitude of other problems with my eyes that I went to vestibular therapy for. If there is one thing I couldn’t stress more, it would be to never be afraid to get a second, third, or even fourth opinion. There are still innumerable things science doesn’t know about the brain. I really hope your daughter heals quickly, as I wouldn’t want anyone to go through what I have gone through. Please let her know she is not alone.

      All my love and hope,
      Katie

  82. Marion says:

    Hi Katie,
    Thank you so much for your response! I really appreciate the info and feedback. We are still “plugging away” with this daily headache. Since I wrote my original comment, Alyssa has been see by a new neurologist at UCLA. She specializes in Sports Medicine, Concussions, TBI’s and Migraines in children and athletes. I can’t say I was pleased with her diagnoses of “Chronic Daily Headache-Migraine Type”. Anyway, the suggestions made for treatment I’m not completely please either. I work in the Social Service field/Medical. I’m all to familiar with medications and really want to explore all other possible treatment options before looking at medications. Alyssa also began seeing a Chiropractor that specializes in cervical treatment. I know that some medical specialties do not acknowledge others…and so this is, in Alyssa’s situation. However no one is giving her any relief from the daily headache. I did ask her the other day, if she wanted to consider the “medication route” that the neurologist from UCLA suggested. There was three levels of treatment she discussed: Vitamin supplements of B2 (Riboflavin) and Magnesium; Amitriptyline; and then either Topamax or Gabapentin. Again, I’m quite versed with medications due to my profession. We started with the supplements and really…nothing has changed. Alyssa doesn’t want to take other medications as she just feels they will not help her. I also felt that I influenced her on this and have had an open discussion with her about this being “her body” and feeling better despite my opinions. Alyssa also received “abortive” type of medications for “migraine”, Maxalt. I’m tempted to take her on a trip to the Sierras (altitude) and see if the headache would intensify as it usually does. Then, I would give her the Maxalt to see if it does anything. Alyssa is an amazing girl. She plugs away, does well in school, plays club level volleyball, tennis and swimming. She is my hero! I just wish I could magically make this headache go away for her. We have seen every doctor imaginable for this. I will continue to advocate for her no matter what!! Again, your words and information provide some “piece of mind” that Alyssa is not alone in this. I will share with her your response.
    Thank you again!
    Marion

  83. Katie says:

    Hi, I came across this blog today and I’ve found it very useful so before I share I’d like to thank everyone for sharing their stories and advice as it’s reassuring to know I’m not suffering along. I’m 16 and I’ve been suffering with daily headaches, all day everyday for over a year now. I’m prescribed Topiramate/ Topamax for nocturnal epilepsy, however this does not help the headaches, in fact when i found out it was a medication prescribed for migraines I was surprised as I thought that surely then I shouldn’t have such headaches? I’ve been to see 2 neurologists, a chiropractor and have been for acupuncture and acupressure but so far nothing has helped. I’m hoping to go and see a headache specialist soon but I am on a long waiting list and at this point I really don’t know what to do as the pain is so continuous and intense, the only time it is not present is when i’m asleep. Aswell as this, I am experiencing neck and back pains, I am unsure whether these are linked to my headaches, I went to physio for my neck pain but was signed off as she thought they were due to the headaches. I’ve had an MRI which showed up as clear. The neck pain makes the headaches worse and together the pain can be unbearable. If anyone has any advice or tips for relief, please share, thank you,
    Katie

  84. The Katie from a few messages up :) says:

    Hi Katie,

    Oh my goodness! Our stories are nearly identical!! I have tried countless medications including Topiramate/Topamax, Amitryptline, Nortryptline, Venlafaxine, Divalproex sodium, Midodrine, Fioricet, etc. to help the headaches – they don’t for,k and the side effects are awful. I’m 17 and have been getting these headaches everyday for nearly two years after two concussions. I’ve seen 2 medical neurologist, 3 functional neurologists, a chiropractor, a sports psychologist, acupuncturist, massage therapist, vestibular therapist, optometrist, etc. I have missed close to 40 days of school the last two years. It has been insane. It is so hard. I feel like I’m constantly falling and having to pick myself back up. It’s exhausting. My MRI was clear too. I have a headache that does not stop, difficulty concentrating and processing information, sensitivity to light and sound, nausea, dizziness, confusion, difficulty falling asleep, memory issues – you name a concussion symptom and I’ve got it. If you haven’t tried this yet, I would suggest taking a calcium and magnesium supplement, vitamin D supplement, and a Turmeric supplement. For me, the turmeric is the only thing that really works so I’m only taking that right now. Also, I know this sounds extreme, but a few doctors have told me to go on the ketogenic diet to aid brain healing with healthy fats. It hasn’t totally worked for me in terms of relieving my headaches, but I am still eating a low-carb/no-sugar diet ( no bread, pasta, grains, etc. :/ ) to keep inflammation down. High inflammation from sugar/starch gives the worst headache spikes. If you’re going to try any of these, do the Turmeric and try to eat less bread/sugar; they’re the few things that actually relieve a little pain and prevent it. Exercise helps too! Additionally, I would suggest seeing a functional neurologist and/or a neurosurgeon that specializes in concussions. Right now, I am seeing Dr. George Michalopoulos (functional neurologist) and I just got a referral to see Dr. Julian Bailes (neurosurgeon). I’m running into a bit of a dead end in functional neurology, as my case is complicated it seems, which is why I’m looking into Dr. Bailes. I really hope all this helps a little. I know how hard it can get, especially because people can forget you’re hurt because they don’t see it, and it’s been so long. You can feel hopeless, alone, and totally out of control, but you’re not alone, no matter how much it seems like you are, and you shouldn’t be afraid to try to take back some control. It’s going to get better because it has to. We’ve made it this far. 🙂

    I’m always free to help or talk – I could really use it too.
    Katie

    • Katie says:

      Hi Katie,
      Thank you so much for your message, it’s so reassuring to know there are others out there who understand the pain and daily struggles. Last month I went to see a headache specialist who suggested an occipital nerve block, however this has not helped the headaches, they are still just as bad and I am now at a point where I don’t know what to do but hope and pray that I will find something that will help, I mean there has to be something out there?! Feel free to email me at katieofarrell@hotmail.com if you ever want to talk.
      Katie

  85. The Katie from a few messages up :) says:

    Ice on your head and neck helps a little for me too! If it doesn’t work for you, try heat.
    Katie

  86. Marion says:

    Hello everyone. It’s been awhile since I wrote here. My daughter Alyssa is now 14 and going on 2-years since she siuffered her concussion/whiplash. As some are calling it. She took those aweful medications that I swear she wouldnt have. She wanted to try, to see if she would have any relief. Well nope she didn’t. She also suffered some terrible side effects that she is just coming out of now! We finally received a referral to a “pain mgmt specialist” (Anesthesiologst). Alyssa is a candidate for an Occipital Nerve Blcok and will be receiving that on 5/5. Alyssa finally tried actual acupuncture and to all of our surprise, she had some relief for a little while. Relief is, from a pain level of 7-8, it went down to a 1-2. I was so surprise and so was she. Unfortunately it does not last and returns to about a 5-6 for that day. With school and sports it shoots right back up to a 7-8. However it was amazing that she received ANY relief. Her acupuncture centered around the treatment of the Occipital Nerve. Well, we’re on the right track. She is also having PT 2xweek. So maybe with the block, continuing with the acupuncture and PT, she’ll start getting more relief and longer periods of time.

    Alyssa starts high school in the fall. I’m hoping and praying that she has some relief before then! Thanks again everyone for telling your stories and the perseverance you all show. I admire you just as I admire my daughter!!

    Sincerely,
    Marion

  87. Shree says:

    I had/have every type of headache, cluster, daily, motion, tension, sinus,migraine ect. I don’t even feel like a normal person most of the time. But I came out of all [except motion] for about 70% by switching to healthy food option and doing regular exerciser / Yoga [all of them very strictly].
    Shree

  88. Elisabeth says:

    Hi,
    I was wondering if someone was from Montreal, Canada? I am and would like to be in contact with a sufferer around my area.
    Thanks

  89. Laura says:

    I have had constant headaches my entire life. When I hit puberty they became increasingly worse and would last days on end. Due to stomach issues and allergies I ended up having to cut out dairy and wheat products and my headaches immediately went away. I began eating a diet of foods (meat and veggies) that only came from the earth with no packaged foods and my skin issues. headaches, and stomach issues disappeared. You may want to experiment with cutting some foods from your diet to see if that helps. Also, I am now 22 and have lived on a diet of about 3 cups of coffee a day since I was 16 and after my 20th birthday I got a horrible headache and lasted about 8 months. I knew it wasn’t foods because I am very careful about my diet when my boyfriend mentioned it was the caffeine I was drinking which I laughed off considering coffee basically was my bloodstream as this point… But I was willing to give anything a try. I cut out my daily ritual of coffee (which was incredibly difficult) and haven’t had a headache since. We truly are what we eat and my body loves steak and wine but cannot handle bread, coffee, or milk. Pain is the bodies way of letting us know something is not right and should be listened to. Try watching what you eat, you might find that your body doesn’t like certain foods.

  90. Todd says:

    I developed constant headaches 4 months ago and now I have developed dizziness and back pain. My doctor has been trying several migraine medications and has ruled out any possible viral infections. I’m actually hoping he schedules the spinal tap soon. I am sorry for those on here that have suffered for years. I don’t think people can truly understand how difficult an unseen pain is to manage everyday. Hoping everyone here finds a treatment that works.

  91. K. W. says:

    I am 41 years old and have had horrible headaches since I can remember as a child. One of my first memories. I found when I was 27 by a wonderful ER DR. I have been living with hydrocephalus, high pressure. No neurologists could ever scan my brain so I lived with so called migraines. I had an ETV brain surgery and I still live in horrible pain. The neurologists simply have no interest in dealing with my case. I have not been to a neurologists in year’s because I know that it means everything I have tried.
    So I am doomed to live in agony. I have abnormal structures in my brain and my ventricles are smaller but not normal. There doesn’t seem to be a good option for me. I have tried all the crap. I know what works but I don’t have any interest in fighting for it. I realize that suffering is my life. At least I have a high pain tolerance because it is all I have ever known!

  92. K. W. says:

    I am 41 years old and have had horrible headaches since I can remember as a child. One of my first memories. I found when I was 27 by a wonderful ER DR. I have been living with hydrocephalus, high pressure. No neurologists could ever scan my brain so I lived with so called migraines. I had an ETV brain surgery and I still live in horrible pain. The neurologists simply have no interest in dealing with my case. I have not been to a neurologists in year’s because I know that it means everything I have tried.
    So I am doomed to live in agony. I have abnormal structures in my brain and my ventricles are smaller but not normal. There doesn’t seem to be a good option for me. I have tried all the crap. I know what works but I don’t have any interest in fighting for it. I realize that suffering is my life. At least I have a high pain tolerance because it is all I have ever known!

Leave a Reply

Your email address will not be published. Required fields are marked *