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25 Responses to Links & Resources

  1. Lori McCool says:

    I love this website. Thank your for all the info. I was nearly migraine free for 12 years and they are now back with a vengeance. Having a place to go and read the newest research, meds and coping methods has been hugely helpful for me.

  2. Mar says:

    Hi,
    I am a migraine suffer for more than 40 years. I really need to find a new a VERY GOOD neurologist specialist in migraines. I live in FL in Broward County. I would appreciate any advice from the migraine community.
    Thanks.

  3. Hilda says:

    Kerrie,

    Hi, I have been struggling with now chronic symptoms for 8 months and perhaps with your experience you may be able to suggest me who to go to. I have already seen three neurologists – had MRIs, seizure, sleep studies, & multiple bloodwork done, and have been experimenting on a different med combinations to see if it goes away and nothing has changed.

    The symptoms I am having are being diagnosed as migraine equivalent which are numbness of my left side, with some tingling, sometimes partial speech problem, drop mouth, some pain on bones (mainly joints), dizziness, and fatigue. It varies in intensity during the whole day and sometimes it is just a couple of hours in the morning and then a 4 to 6 in the afternoon. Lately I have also been having some short time memory issues.

    Prior to this ordeal, I had a history of traditional migraines of few hour painful migraines once or twice a year, and regular headaches very often. They disappeared when I started a blood pressure med. Then after a year on that this started.

    I look forward to hearing from you.

    H

  4. Diane says:

    This might be a repeat post I can’t tell. I am two weeks post permanent neuro-stimulator. Migraines are at bay and am thus far very pleased. I have a few concerns about the incisional areas as to swelling and soreness. Does anyone know of a site on the internet that has actual pictures of the incisional areas as to what they look like? I expected straight incisions. Also how many incisional areas do people have? I have a total of six different incisions.

    • Diane, I’m glad the surgery went well. I hope you’ve recovered from the surgery and incisions.

      Take care,
      Kerrie

    • Karey Buechele says:

      What is it exactly that you bad done? Is it for certain types of migraines?

      • Diane Sills says:

        Karey, I was just going through the site and saw you had posted back in August what was the Procedure I had done. It is called Neurostimulator. Leads are placed under your skin. Mine start on my forehead, go down around behind my ears, joining at the base of my skull, down the center of my back, with conector in the center of my back and down to my back of my upper hip (bum) where there is a battery pack. All of this is under the skin. The stimulator generates electrical currents of stimulation, (feels like a vibration) targeting the occipital and supraorbital nerves. You have a remote where you can turn it on/off, control the intensity and also can have it programmed to any amount of ones you want (I have 8). Like tapping, waves, pulsing etc. You can also control each of the leads independently and make them target a certain spot, from a pin pointed spot to a wide area. I was one of those people that have tried everything what I thought to be know to man. Then, I heard of this and it was the anwser for me. I think it’s worth checking into for anyone that has tried about everything else. You have a trial first with the leads external to see if it is going to work for you. It really has changed my life. I still get some headaches but the days on the bathroom floor, in bed, no light, no sound for days on end are few and far between. You can email me if you have any questions.

  5. Diane says:

    Wanted to give an update on my neuro-stimulator. It’s been 4 months. I’m happy to report that all is well. Migraine improvement I would say is at 90%. If anyone has questions about neuro-stimulator, please feel fee to ask.

  6. Diane says:

    Thank you Kerrie. My biggest fear was that I went through it all only to find out it was unsuccessful. Recover was rough and at times I thought maybe I had made a huge mistake. But, all I needed was more time to heal. I’m back in full swing now and basically starting a new life. I life without severe limitations.

  7. Jo Ann says:

    Hello Kerrie. Forgive me if you have covered this before, but have you ever had MRT done? Or any of the food allergy (sensitivty) testing done? I am seriously considering the MRT, along with the LEAP Program. Thank you for your time.

  8. Eva says:

    Hi Kerri, Have you ever heard of someone having migranes from an adverse reaction to rabies shots.I had the shots almost 20 yrs ago and have had migranes since. Thanks, Eva

  9. Ali's dad Jim says:

    Kerrie,

    Thanks for your great service in helping people learn and support each other. My daughter has been diagnosed with New Daily Persistent Headache and our family is doing its best to cope. We are looking to solicit some input on the approach our specialist is taking (without naming names) to see whether other providers might have more robust approaches. Is it best that I just post a question at the end of a blog entry about NDPH, or is there a spot where people can ask questions of the community? Thanks for your help.

  10. Michelle says:

    Hi Kerrie, Thank you for sharing your wealth of information!

  11. Sarah says:

    Hi everyone,
    I am yet to receive an actual diagnosis as I understand the are hard to come by for people like us! I’m a 28 year old female and have been suffering from one particular headache for the last 6 months, which has not abated for even one minute. MRI and blood tests are all clear, I’ve seen naturopath, chiropractor, acupuncturist, trigger point massage, energy healer, osteopath and just about everyone in between. I am currently taking amitriptylne, 30 mgs per day with no change. I live in San Diego and was just wondering if anyone had any experiences with Dr Alexander Blumenfeld as he is a name that has come up numerous times in my search for answers. Just wondering if he is worth seeing? Or if anyone has any recommendations for specialists in Southern California?

  12. Diane Sills says:

    I haven’t seen Dr. Blumenfeld, but I have heard of him. His Headache Center is known for a wide array of variety treatment options for migraines. It really is all about finding a doctor who really gets it. Because if they do, they will be in it with you for the long hall.

  13. ROY says:

    I have had migraines sience I was 24. I am now 65. they got worse as I got older. Emergency rooms over and over.8,9, 10s. Now I find myself addicted to oxycodone. I have been on suboxone for over a year, and find that it allmost takes care of my migraines. I might have to take a larger dose. It is the first time in my life, that I can say this! I soon will have to stop my medication. I am worried I can remember the pain.

  14. Julie Kindl says:

    Good Afternoon,

    After being hospitalized recently 4 times in 2 months due to my migraines, medications are working, sleep studies, MRI, CT scan, MRAs, blood work, and the list continues have been done. I am now looking into diet change. I eat well and do not drink caffeine. Has anyone found a food that they completely eliminated from their diet that helped with migraines? dairy? bread? anything?? please respond with any helpful tips. jkindl@yahoo.com
    THANKS!

  15. ROY says:

    You should watch your foods made with tomato products.They can cause migraines for me. You should also try and remember what foods you have been vomiting up the most and cut those foods out also. This has helped me greatly.

  16. George Dyson says:

    For several years I’ve been investigating some way of stopping the aura/CSDs I get; I’m a strange one in that I very rarely get the headache, and that was when I was much younger – age 74 now.
    After a huge amount of experimentation, I’ve come to some conclusions about auras/CSDs since I do think I’ve a handle on the situation now. The nuisance is nowadays quite rare. I share this with you, but no guarantees – that’s the nature of the nuisance. What works for me may not work for you. So here it is…

    1). The idea of “level of sesitization to aura/CSDs” is the key to it. You need to keep your sensitization level down. If your sensitization level is high, almost anything, even a cheese sandwitch may trigger a CSD leading to an eventual headache.
    2) Some researchers think that ALL migraineurs get CSDs, but in a “silent” area of the brain, not always in the visual cortex where it’s very obvious. Many non-aura people somehow know when an attack is coming.
    3) There is no “magic bullet” that will ‘cure’ CSDs and migraine headaches. However, the “scatter-gun” kind of treatment could work.
    4) CSDs can be set off in any human or animal with a brain, even when there has been no trouble before. Aura/CSDs are not exactly a disease. It is a runaway depolarization of neurons and glial cells that always appear to recover after a while.
    5) The terrible pain of the migraine headache seems to be an eventual effect of the runaway CSD. Your trigeminal system in the brain is being stimulated to feel pain when there actually is no reason for it. The pain is felt to be in the meninges, a brain covering. Fortunately the tryptan drugs seem to work to alleviate this pain.
    My “scattergun” approach to the aura/CSD problem is as follows, and is a daily preventive/prophyllactic methodology.

    A half tablet of common antihistamine (5mg) cetirizine hydrochloride B4 bed.
    A half tablet of vit.B complex. A main component for CSDs stoppage.
    A 100mg. soft lozenge, co-enzyme-Q10. A main component.
    A magnesium oxide tablet.
    A vit. D and folic acid tablet. Had a good effect for my daughter.
    A half tablet common asprin, 150mg.
    A half tablet vit. C 250mg.
    A 1200mg. soft logenge omega 3. The mg figs. are the amounts taken BTW.

    In my case, the above appeared to have reduced neuron/glial cell sensitivity, keeping the threshold down so that the usual army of so-called triggers are less likely to trip a CSD/aura, but we’re all different, so it’s always best to regard as experimental. At least the above are not partic. expensive, some are very cheap from supermarkets indeed. If you try them, keep at it for at least three months, keeping a record of what’s happening. And best of luck!
    G.D.

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