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Migraines since 2008?

I've been from TN to Chicago to KY and the only neurologist that shed any light was the one in Chicago saying I basically had "Status Migraine" which lasts for more than 72 hours but is also nonstop. It's continuous, constant, 24-7 with no relief. I'm only on topamax twice daily at 100mg total. I've tried supplements, gabapentin, triptans, Maxalt mlt, imitrex, muscle relaxers, even went through two sinus surgeries, and a full hysterectomy! Nothing has helped. I've tried the generic daith piercing by a acupuncturist but did not help made it worse. I've tried chiropractic care and physical therapy along with massages, other meds but these migraines are taking a toll on the rest of my body making it weaker and I'm getting more forgetful. I've lost my work life, social life, relationship life. I'm only 37. Guys don't want a girl they feel as if they have to take care of and can't relate to what I go through on a daily basis.

  1. Hi sweetpain2,

    Thank you for reaching out and being part of the discussion forum - we're glad you're here!

    I'm so sorry things are so rough for you right now. I do understand how hard it is to live with daily chronic head and neck pain.

    Something I don't think doctors spend enough time on is the fact that it can take up to 90 days before we see an improvement in our migraine frequency and severity when we start new medications. During this time potential side effects may lessen as our body adjusts to the new medications. The thing is if we don't give each medication a fair trial we'll never know which one would have been the "one" to work. Does that make sense?

    By any chance do you take something on a daily or near daily basis to help with the pain? We can get ourselves into another problem called medication overuse headache or moh if we take migraine medications and/or pain medications, whether they are over-the-counter or prescription, more than two to three days week. The thing is if we are in an moh cycle our migraine attacks will be more difficult to treat and we can end up in an endless cycle of pain that too is hard to break. I've been here and while moh is not pleasant it can be addressed. Let me share this information with you on moh;

    A word on doctors if I may. I started seeing yet another "true" migraine/headache expert in August. I wasn't thrilled but something had to be done. I can safely say I think I'm making progress. I'll never be pain free, but have seen a reduction in migraine attack pain. So that's something! My point here is that even if you've seen a few of these experts, it may be worth seeing another one - they are not created equal!!
    Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and others. These "true" migraine/headache doctors are board certified in headache medicine which is different than being certified in neurology and usually treat one condition all day, every day - migraine and headache disorders. When you get a chance take a look at this articles on how these doctors are differnt and how to find one; and

    I hope this helps, let me know what you think,

    1. They weened me off of everything! Then my migraine got more intense and I couldn't take it so they put me back on Topamax at 25, nothing, 50, nothing, now I'm at 50 in the am and 50 at night. But my body becomes resistant to medication so easily. They've tried all kinds on me. I don't have a "regular" neurologist I see. I've been to one 2 Kentucky Paducah and Lexington (specialist), Nashville TN (specialist), and Chicago Illinois who was also a specialist and he was the best but unfortunately not affordable. The only one who took my insurance was the one in Lexington and he was at U of K and he let his interns do most of the work, I got maybe 10 minutes with him out of the 45 minute visit and it's 5 and a half hour drive. As a chronic migraine sufferer you know long trips are stressful and hard to manage when your traveling a long distance and stress is a trigger. One of the P.A.'s I see at my family practice has a son who suffers from migraines as well, so it was her idea to ween me from all the migraine medications to begin with even the ones the neurologist from Chicago had me on. She thought I might have been having "rebound migraines". Like you said, a overload can be too much at times instead of helping. I honestly can't say if my migraines started when I rode a rollercoaster that had a violent stop at the end and threw your head neck/head back, or if it was when I had a spinal tap, but I'd say the rollercoaster because that's when I got the migraines and had never had a headache in my life until 2008 and my Dr thought I had meningitis so he did the spinal tap, laid up in bed for 3 months literally, crawled when I went anywhere, because I got a spinal tap headache worse thing I ever had until these migraines came along I have these 24-7, 365 days a year. Thank you Nancy for your input! I will definitely look into your links. Being in Southern Illinois in the middle of nowhere makes it hard to find a "special" doctor who knows about my condition and how to treat it or even take my insurance. I just want my old life back again. Thank you again. ❤

      1. Hi sweetnpain2,

        Thank you for updating me. I can say i truly understand about wanting your "old life back again." Please let me know if there is anything more I can do for you.


        1. Hello,
          I am sorry to hear you are living with similar symptoms to mine.
          I just had 3 trigger point injections in the back of my neck to hopefully relieve the the pain behind my left eye and the concentration/memory issues That result from it.
          There are people out there that will not run from you and your problems, but will in fact run towards you to help.


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