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In a (Large) Nutshell

Some readers have asked me to share my story, so here it is. Be forewarned, it’s long!

I’m 28 and have had bad headaches for as long as I can remember. They became daily around the time I was in middle school. My doctors said it was just a headache, so I ignored the pain or treated it with Advil, Tylenol and caffeine.

I have no idea how many painkillers I took in a day, but by college, I took four at a time more than twice a day. I tried special pillows, thinking that my neck got strained in the night. I thought grinding my teeth might be the culprit, so I had a mouth guard made. I also had TMJ surgery. Nothing helped.

In the year before I graduated from college, I had an illness that couldn’t be diagnosed. I was nauseated and tired, and had dizzy spells. I had headaches at the same time, but they were still “just headaches.” The doctor eventually told me that sometimes people can’t deal with major life events, like graduating from college, so they invent illnesses to avoid dealing with the events. To him, I was one of these people.

The headaches got worse over the next few years, but were still secondary to vertigo and nausea. I was diagnosed with and treated for Meniere’s disease (a diagnosis that was later dismissed). Then I sought to treat the headaches separately. I didn’t think I could have migraines – I don’t have auras and rarely have one-sided pain – and it never occurred to me that the three symptoms could be related. I went through round after round of allergy tests, got weekly allergy shots, medicated for sinus infections and had multiple scans of my sinuses. I had surgery to correct a deviated septum and had small structures and the top of my nose shaved to reduce pressure. None of the tests showed much and the treatments didn’t help.

At the end of 2001, the headaches began to wake me up every night, about four hours after I went to sleep. This had happened before, in spells that lasted no more than a few months, but this time it scared me. I went to my GP in mid-January to see if he had any ideas about what was going on. He recommended treating the headache pain and figuring out its cause.

This started me on several years of seeing specialists and trying practically every medication and treatment available: triptans, ergots, anti-depressants, anticonvulsants, sleep aids, painkillers, Botox, massage, acupuncture, relaxation, diet modification and so on. After all the tests, the diagnoses were migraine and transformed migraine (a.k.a. chronic daily headache).

Having a name for the problems didn’t help much. I still had daily headaches and migraines at least four times a week. I kept working for a while, but wasn’t up to par. I went down to part-time and then, when we had to move for my husband’s job, quit working altogether. I spent the majority of my time in bed and wondered how long it was worth living with the pain.

I didn’t respond to any treatments that usually help those with hard-to-treat headaches, so my doctor told me about occipital nerve stimulation. This experimental device, which is for people with untreatable migraine, essentially scrambles the pain signals that are sent along the nerve responsible for communicating migraine pain. An expensive and unproven treatment, a nerve stimulator seemed like my last resort. I had it implanted in December 2003. The stimulator has definitely reduced the pain, but it hasn’t given me any pain-free days. My daily headaches now hover around 3 on the 1-10 pain scale and, on average, I’m bedridden one or two days a week. I still can’t work.

After the stimulator was in, I spent more than a year adjusting my expectations. More than having to learn to live with constant pain, I had to face – and accept – that I may never find a miracle cure. I can’t describe how horrible this was and how shattered I felt. It was ugly. I was so tired of fighting that it took me 16 months (and trouble with the stimulator) to go back to the doctor.

I’m coping pretty well now. I take Cymbalta, Wellbutrin and amitriptyline. I’m on a restricted diet to sleuth for food triggers. I do a modified form of yoga that doesn’t interfere with the stimulator. I try to relax and let go of my perfectionism. I drink a lot of decaf lattes. I have fun when I can.

I have an appointment in October with a headache specialist in the city I now live in. I may try anticonvulsants again and I’m already testing a new triptan. Most of the time I’m willing to fight, but some days I only seek escape. My days aren’t easy and I haven’t beaten this disease. At least now I have the energy, mindset and reduced pain levels to try to keep it from beating me.

What’s your story? Share it in the comments section if you’re comfortable with that, otherwise you can e-mail it to me.

13 Responses to In a (Large) Nutshell

  1. steve says:

    i truly truly understand….. i have had a permanent headache for 4 years….. it has never gone!!!!! i tried everything you did…. it was strange to hear someone echoing me……have you had your teeth and bite assessed ?

    ********
    I’m sorry you have headaches too.

    I have had my teeth and bite assessed with no luck. I do wear a nightguard to keep me from grinding my teeth.

    K

  2. Tina says:

    HI! I have been “googling” the precision implantable stimulator for migraines today and came across your story. I could have written it word for word. It sounds so much like my life. I do work though but have gone through many suffering days. Occasionally, I’ve had to have my husband come pick me up at work (finding me curled in a ball in the break lounge with all the lights turned off and a vomit bag sitting next to me). I recently was invited to participate in a study with the implantable stimulator. I am traveling 4 hours to have it done in Chicago. My first visit is tomarrow. I am eager to hear from people who have had it….the pros, cons, etc. I currently use Imitrex (at onset) and Nabumitone and Nortriptilyn daily. The Imitrex is really the only thing that I get relief from but has nasty side affects. I would love to hear more about your experience. Please e-mail me at trig73@yahoo.com. Thank you. Tina Riggan
    Oxford, Ia

    ********
    I’ll e-mail you today!

    K

  3. Tania says:

    I have suffered a 24/7 headache for 2 years now subsequent to a ‘twingeing’ of my neck while exercising. I broke my neck and back in a fall 22 years ago.
    I can’t find anything to ‘fix’ the headache – I’ve seen a host of specialists and had a lot of nasty injections into my cervical joints, but to no avail. I take daily pain relief…but my life is in shatters – I can’t work outside of the home, and I’m depressed about my lack of quality of life. Any help/suggestions most appreciated(I’m in New Zealand).
    many thanks.

  4. Tania says:

    I have suffered a 24/7 headache for 2 years now subsequent to a ‘twingeing’ of my neck while exercising. I broke my neck and back in a fall 22 years ago.
    I can’t find anything to ‘fix’ the headache – I’ve seen a host of specialists and had a lot of nasty injections into my cervical joints, but to no avail. I take daily pain relief…but my life is in shatters – I can’t work outside of the home, and I’m depressed about my lack of quality of life. Any help/suggestions most appreciated(I’m in New Zealand).
    many thanks.

  5. Emily says:

    Hi! I found out about your blog via the NYT article about electric zappy migraine treatments…

    I’m 25, and I’ve also had migraines for as long as I can remember. When I was 9 yrs old the pain got to be so bad that I passed out. I was taken to doctors and they did CT scans and encephalograms but nothing showed up. When I was 14 I was taken to a neurologist who did an MRI in which again nothing showed up but he diagnosed me with migraines. I started taking Imitrex then. It worked OK most of the time, and all through high school I tried to find food triggers (chocolate, soda, pizza..), but nothing seemed to be “it”.

    During college I would get migraine cycles: a few months of migraine-free bliss, followed by a few months of weekly migraines. Lather, rinse, repeat. Imitrex’s effectiveness started decreasing…

    I started grad school in 2003 and the migraines started becoming more and more frequent. A doctor in the university clinic decided to take me off Imitrex and gave me Maxalt. Maxalt turned out to be very effective, getting rid of the migraine within 1-6 hours — but it made me sleepy and woozy, which pretty much meant that if I woke up with a migraine I’d be out for most of the day. This is not a good thing to happen during grad school!

    Last year (2005) the migraines started becoming more and more frequent: twice per week constantly. I heard about Topamax and so I asked my (former) doctor for it. I took Topamax for about 3 months, during which I had 4 migraines. Topamax was remarkably effective in preventing the migraines… but it also had TONS of side-effects. Constant pins and needles on my legs and feet; dizziness; feeling like a zombie; forgetting words; gingivitis. I could not take it anymore. Another doctor then took me off Topamax and gave me Celexa, an antidepressant. Celexa was not as effective as Topamax, as I kept having migraines every other week. Around July of this year the migraines went on overdrive: twice, thrice, four times a week. At one point I had 6/7 days with migraines. This is not good while doing a PhD thesis! I’m falling way behind on my research because of the stupid migraines. I managed to make an appointment with a neurologist specializing in migraines, and went to see him last week…

    He took me off Maxalt and switched it for Axert. I haven’t tried the Axert yet because my crappy new health insurance (which I’m changing in two months) required prior authorization and I just got the prescription filled today. The neurologist also gave me Verapamil, a blood-pressure medication, to use as a preventive. Unfortunately, after the first dose I took (a low dose, if I might add), my blood pressure dropped to a dangerously low level and it made me dizzy and disoriented, I lost feeling in my arms and legs, I could not breathe, my heart was racing, I was in a cold sweat and my mouth went dry. It felt like I was dying. My boyfriend lives on the other side of the country and I live alone, so I had no way of getting to a hospital. I would have called 911 if I had any feeling in my hand, but I couldn’t even grab the phone. I survived that somehow, and I haven’t taken Verapamil since. No way, nuh uh. I called my doctor to tell him what happened and left a message with the secretary. He has yet to call me back but I understand that he’s a busy man (it hasn’t been that long anyway). He will most likely prescribe me an antidepressant next, since he mentioned that it would be the next option, should Verapamil not work out for me.

    The day I had that horrible dying-feeling experience was last tuesday night. I had a migraine on wednesday, another on thursday, another on friday, and another on sunday. My pulse remained accelerated until saturday evening. I have a thesis committee meeting in a month, for which I have to present research results that I haven’t been able to obtain because I’ve been incapacitated by the incessant migraines I’ve had in the past few months.

    I can’t help but wonder if the people around me are capable of understanding just how debilitating these migraines are. Thank you for keeping this blog, as it is somewhat comforting to know that there are people who understand — though it is because you suffer migraines too. I’m so sorry about that. I understand your pain.

    [oops, sorry for the ridiculously long comment]

    ********
    Wow, you’ve been through so much lately. I’m sorry to hear things have been so rough — and terrifying. It’s good that you’re now seeing a specialist. I hope he’s able to help you more than other docs have been able to.

    It may be helpful to know that migraines often go in cycles. There could be a seasonal influence; changing weather can be a huge trigger. Or you could be in a pattern where you feel terrible for months or a year, but then are back to normal for a few months or a couple years. OK, it’s a touch of gray in the silver lining, but you won’t feel as awful as you do now forever.

    Best of luck with your research and your thesis. You’ll get there — maybe later than you want and it might be like swimming through a mud bank, but you’ll eventually make it.

    Take care,
    K

  6. Liz says:

    My name is Liz and I am on so many medications that people at work think I’m a drug addict. I’ve been taking topomax (dopamax) amitryptaline, verapamil, lexapro, clonozapan, imitrex shots, naproxam, norflex, and the steroid prednisone when I start a cycle. I’ve been suffering 23 years with headaches. I am at the point where I am considering the botox and neural blockade if my insuranc will cover it and my doctors will allow it. Does anyone recommend it? Desperate and in pain-Liz

    ********
    I’m sorry you’re suffering so much. I didn’t have any luck with Botox, but know a lot of people who have. If you’re comfortable with it, I’d say go for it. Idon’t know much about nerve blocks.

    Not many people read archived posts, so I’m not sure how many responses you’ll get. A headache forum would be a good place to learn about a lot of different experiences with these treatments. I really like the Migrainepage forums: http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi?az=list&forum=discussion&conf=conf_migraine_discussion

    Best of luck in finding a good treatment.

    Kerrie

  7. Juanita says:

    Being a migraine suffer since my early teens, (im now 60) about 25 years ago after numerous tests and medications i was given a med that actually allowed me to function when they did occur. In 2004 the med suddenly became unavailable, i spent the next two years searching for a replacement. i was in and out of hospital er,s for the dibilitating migraine pain. I had to quit work in feb 2006 due to the uncontrollable pain, spending most of my time in bed doped up on numerous meds that did nothing for the pain other than knock me out.
    Suddenly in dec 2006 i discovered that my old migraine med had been sold to another manuf.
    Well im back on it, an it is once again controlling my migraine pain allowing me to function.
    Would it work for someone else, i don’t know but if your interested in trying it it’s call Synalgos DC. Dhyidrocodine, asprin and caffiene

    *********
    Thanks for the tip. I’m so glad you’ve found it again and are getting relief.

    Take care,
    Kerrie

  8. apm says:

    Hi, I’ve had migraines for about 20 years. I’ve tried various meds, relaxation techniques, physical therapy, accupuncture, etc…NOTHING helped. I then went to a headache specialist and they put me on Imitrex. It works well, but I am afraid to take it more than 2 days in a row. I tried Topomax and for the 4 months on the medication, I didn’t have one headache, but I was a big dummy who forgot alot of things while on the med…so I went off and now take Cymbalta daily and Imitrex (as needed). It helps, but boy do I wish there was something to eliminate these migraines all together. I feel you pain (literally!)

    ********
    I’m sorry you suffer from them too. I’m glad you’ve found some relief, even though it’s a bummer that Topamax didn’t work out.

    Take care of yourself.

    Kerrie

  9. Renae says:

    My first migraine I had was in my early 20’s and required a trip to the ER. I didn’t have another one until in my late 30’s to early 40’s. Then I would have one a few times a year, then one a month, then one a week, and then 2-3 a week. When I have a migraine it’s for about 3 days. The first day is horrible, nausea to throwing up and feeling like someone is tearing my brain apart. I started having rolling migraines, by the time the 72 hours were up, I would start another one. I went to a neurologist who put me on Depakote ER. I gained 15 lbs in 2.5 months. While on the medication I had 2 migraines in that time period. I also would take Imitrex when one would start, along with a tylenol PM to help knock myself out. After being off the Depakote ER about a month, I had a severe migraine that required a trip to the emergency room. There they gave me imitrex and toradol (sp?) through an IV, within 10 minutes it was like I never had a migraine at all. I asked about using this combination when I felt a headache coming on and they told me that toradol was very hard on a person, it was like taking a huge overdose of advil. It could only be given occassionally and through an IV.
    After being off the Depakote ER for 3 months I started having rolling migraines again. I called my neurolgist in August to get an appointment to start another preventive drug, only to be told he had no appointments until December. I told his receptionist that I would probably be dead by then from cutting off my own head.
    I started seeing a new neurologist who put me on nortryptilyn. I started at 25mg, and that worked pretty good. When I started having more migraines he increased me to 50 mg, I’ve since been increased to 75mg. I still have bad migraines every couple of weeks, but they aren’t as severe and I usually can head them off with some imitrex and pain pills. There are times that I will wake up with a full blown migraine and those are the ones that are just unbearable,where all you can do is be in a quiet dark room and knock yourself out.
    I have been through allergy test, mri’s, eye doctor to check my vision, massage therapy which I loved, but it didn’t help my headaches, teeth and jaw assessment showed nothing.I’ve changed my eating habits to avoid my triggers, like chocolate, wine, processed meats,and thing with artificial sweetner, etc..
    I want to get off the nortryptilyn, because of some side effects,(craving sweets and severe constipation) but I don’t know what would be next for me. I can’t take topamax because of a hystery of kidney stones.
    Sometime they think migraines are a result of changing hormone levels. I had a hysterectomy when I was 27,(related to endometriosis) and on HRT. I went off of the HRT myself and I’m trying some herbal products, vitamines, soy, etc.. I still have a headache about once a week, so I’m starting to just think this is the way life will be.

    *******
    Wow, thanks so much for sharing your story. I’m sorry to hear how much you’ve suffered, but it’s great that you’re down to once a week.

    Take care of yourself.

    Kerrie

  10. Allie says:

    wow…. I just read the posts and now I’m sitting here in tears of dispair. Up until now I have been able to harbor the hope that somehow, someway, someday I’d be able to find a cure for this debilitaion. I am a single mother with a farm and an outside job and have been suffering from one migrane after another for the last 3 yrs until I am about to lose everything. My boss has been wonderful but the bottom line is, I am not getting my job done. My child takes care of me more than I am able to take care of her. Imitrex helps, but it makes my heart beat so fast it makes me feel like I’m dying. It gives me several hours of relief but then it wears off and I either have to take it again (most times I am afraid to take it so close together) or I suffer a couple more days then try again. I have spent many afternoons laying with my face pressed against the cold bathroom floor trying to not throw up. I lay on the cold concrete in the store room at work too sick to drive home. And the worst part of all is my child doesn’t have a mommy most of the time. I do not have insurance, so I’ve not been able to go thru all the exams and treatments you all have. Though I have managed to try most of them on my own. I suspect after going through them all, they’d know no more anyway. I read all I can.. I am hoping to find a way to be able to afford cymbalta soon and hoping maybe it will help. I keep a journal of my life hoping to find triggers, but I suspect that I have several and that each of them are co-dependent on other things so that it gets too complicated to pin point. I do know alergies and weather changes and hormones are involved. I see a good chiropractor, try massage. Nothing seems to stop them. I do still have a few days when I feel almost normal and think this nightmare is in the past,… then whamo I’m down again. I am so tired of living with this pain. I know people think I’m making it up. or that I’m just a big pain baby. I don’t think they understand how painful it is… Sometimes the side of my head hurts so bad I honestly think I am going to burst and die. I am so afraid I am going to lose my job over this, I’m already losing my life. Thanks for letting me share, I really thought I was alone.

  11. Regi says:

    I don’t know if anyone still reads these posts, but I am so amazed at the similarities in so many women’s stories. I have, too had migraines since about the age of 11 and have undergone what seems like every medical and psychological test known to man! – Acupuncture helped for a while; massage, if done weekly, helps; biofeedback is great – but can take months if not years to master (I have been doing it since 15: 26 years!).
    I finally found help with a rheumatologist, when I was diagnosed with connective tissue disease. I am taking auto-immune therapy drugs and injections, which have helped enable me to return to work part-time.
    Also, I have been taking the following vitamins, recommended by my neurologist: magnesium: 800-1000mg/day, B2: 400mg/day; CoEnzyme Q10: 200mg/day; Calcium: 500mg/day; Vit D: 50,000IU/week(this is a prescription).
    All of these help somewhat – at least the cycles are a bit better.
    I have so much empathy for everyone going through life-long chronic pain like we do! I have had to quit so many jobs, I have quit and re-started college 4 times, still hoping to get my BS one day if I can – I have been divorced due to the stress illness put on the marriage, and my second marriage, although strong and to a wonderful man, has been tried by financial and health issues.
    I hope anyone reading this will just take time every day just to be good to yourself. Self care and compassion is the best – and sometimes only thing that can get you through the day!!
    Best!
    R

  12. Kathleen says:

    I have just stumbled on to this website and find it quite depressing that so many people suffer so much pain and illness and still no cure in sight. I live in England and have had migraine since my first son was born – he is now 40. I have tried every drug imaginable, been a ‘guinea pig’ at a specialist migraine clinic and presently am taking Zomig, daily beta blockers and attending a pain clinic at our local hospital once a month for accupuncture. I am still getting regular migraine, although I am not bedridden as often as I used to be. Employers do not understand, colleagues often think one is a hypocondriac and is suffering from just a headache. Somebody out there, please help all us sufferers!
    Kind regards, K

  13. Mei Mei says:

    I am so sad for all of you suffering from these life impacting headaches. I have suffered from them all year from a surgery that I had to remove an acoustic neuroma. I am going next week to Georgetown University Hospital to see Dr. Ducic about his surgery for migraines and he has helped many people.
    Please google him and try to make an appointment after consulting with your neurosurgeon (who should work you up with an MRI before you go) and your pain doctor who might have given you nerve block injections that don’t work. Bring these records to him or send them in requesting an appointment.
    Blessings to all of you! MM

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