Chronic migraine/vertigo

Hello all,
I’ve written on here a few years ago. I haven’t been on in awhile. My condition is very debilitating because my pain level is down from migraine pain but instead of that I have vertigo/dizziness daily. I’ve lived this way for 22 yrs. It all started after mononucleosis. I’ve seen 15 neurologists have been to several migraine clinics, done all sorts of holistic remedies, seen chiropractors, etc. Botox didn’t help me. Believe me there’s nothing left for me to try that any doctor is aware of and I’m aware of. It’s so frustrating that I have to stay in my house on a daily basis. This all started at the age of 40.

I’ve been very proactive and keep on finding help but it seems I’ve exhausted all avenues. It’s quite scary. I see a psychiatrist and do take 175 mg. of Topomax plus Celexa and Klonopin. Yes, Topomax has affected my memory a lot. I hate that it’s affected my memory. All neurologists have told me there’s nothing else they can do. I’ve had cervical fusion from bulging discs in my neck. Had my upper teeth removed from old root canals and mercury. You name it I’ve done it. Does anyone have any ideas? I know you guys do understand which helps a lot. So many people say well you look ok to me. I hate that! I can’t drive or do basic normal things. People just don’t get it. I understand there are worse things to have in life and that has always kept me fighting to keep strong but you know pain is pain and ours matters a lot too. Our lives are affected greatly. Thanks for listening. Take care all.

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Comments

View Comments (6)
  • Anne
    1 year ago

    I’m so sorry – that sounds overwhelming. Have you had bloodwork done recently? I know for myself, I’m so used to not feeling well that I automatically just chalk it up to migraine. Sounds like you’ve done everything possible in the migraine arena – could be another condition hiding behind migraine? I’ve had several rounds of blood tests for bad fatigue and nerve pain – while they didn’t give me a cure, they did show vitamins I was deficient in. I know just getting back to a normal level of vitamin D helped. There are other things, such as Lyme Disease and low thyroid that can mimic some of what migraine does. When you’re already suffering under migraine, any little bit of relief can be a lifechanger.

  • DianeMS author
    1 year ago

    Thanks Anne. Yes I’ve had many blood tests done. Nothing unusual there. I do take vitamins also. I appreciate your response though. Take care.

  • lindaann
    1 year ago

    Hi Chronic Migraine/vertigo

    I am you! I have had the very same for 30 years. I wish I had “the cure” but I to have found nothing. My husband believes the new CGRP drugs are going to be the miracle cure but I am not that hopeful. I still have chronic daily headache, up to 8 full blown migraines a month and on and off vertigo. I take Topomax too or dopomax as some call it. Affects my memory and word finding, it always works well for the first month I increase the dose then doesn’t anymore. Botox makes me worse. I am thinking of going to non drug strategies like hypnosis. Such a hard thing to live with isn’t it.

  • DianeMS author
    1 year ago

    I wish you the best lindaann. It is extremely hard and debilitating. I don’t know what my next move is? I’ve done some hypnosis but never stayed with it too long. I do see a psychologist who does mindfulness/meditation breathing exercises with me. It helps me when I get too stressed out and full of anxiety. Overall I have nothing that takes it completely away. It’s heartbreaking. My memory has gotten really bad on Topamax that I’m starting to wean down a little bit. I’ve noticed a little improvement as I do that. Of course, I’ve been at lower levels before and have been bad that’s why we’ve raised it. It seems any change in medications I have a couple of decent days. Who knows? I’ll take it. I’m not certain what CGRP stands for. Best wishes.

  • jennyren
    1 year ago

    Thanks for sharing your migraine story. It seems that I have only just developed migraines at 41 years, which I believe it rather uncommon. I have had constant dizziness and vision problems for the last 4 months, as well as sporadic headaches, top teeth pain and left eye pain. Like you, I have been to Neurologists, drs, General Physician, ENT, dentists, physios, chiropractors, integrative doctors and have been given the migraine diagnosis as a result of elimination. I have had MRIs of brain and full spine, MRA, CT brain, visual evoked potential, facial nerve testing, countless blood tests. All found nothing. So here I am, I guess at the beginning of this migraine nightmare. It is so debilitating, I have missed so much work and don’t go out as much as I used to or exercise as much. I have two young kids so I am trying to be strong for them, but I feel as though people around me just don’t understand. Thank you all for sharing your stories. It does give some comfort to know that I am not the only one struggling with this…

  • DianeMS author
    1 year ago

    Best wishes to you jenn. It’s been 22 yrs. for me and I hope it won’t be that long for you. How true it is when you say people don’t understand. That’s so frustrating. I have people that still say to me after all these years you mean you can’t drive even 10 miles out to eat with us? You look ok to me? Ugh! I don’t even want to go there. They think it’s just a headache. They have no clue. My pain level may be down right now but instead of pain my vertigo is actually more debilitating. I have no quality of life. It’s at 15% I would say most days. If I have a good day I’m out enjoying what I can do. Hang in there. You’re not alone.

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