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Trying To Make Sense Of All Of This

Like most people here I’ve had a complicated relationship with myself and migraines.
It’s been almost six years now and it has been a hell of a rollercoaster. Thankfully I have come a long since it all started (and accepted my new life). My aura and symptoms have changed quite a bit over time and my unwillingness to undergoe full medication for migraines has been a blessing and a curse (I’ve been on topamax, blood pressure medication and now two different type of anti depressant)

My stubbornness has taken me through diet changes and lifestyle changes as well.
It’s been a few months since I started my actual and most succesfull combination routine (yet!), that consist of medication, natural supplement and a strict diet ( currently going from gluten and dairy free to low FODMAP diet and still dairy free) and I am trying to make sense of my latest realisation;

On Monday night I took a triptan before going to bed as I had a migraine the whole day and didn’t sleep well the night before. I woke up feeling good, no more migraine !
At the end of the day something hit me, my daily hand tremors did not manifest the whole day! So then, Could it be that ever since I’ve been on my current routine, I’ve had silent migraines every day and the most obvious symptom was the tremor ?

To be clear hands tremors appeared as a foretelling sign of stronger than usual migraines about two years ago and never really went away, although I thought that it was maybe a side effect of the Topamax I had stopped taking. since it has helped diminishing the strenght of tremors.

Am I the only one suffering from hand tremors during migraines ? Silent or not ?
I have ditched a second neurologist who wanted to put me back on topamax despite telling him I do not react well to it and never want to go back on it ( and also made me try a blood pressure med that forced me to keep the bed for days) and I am currently waiting to have GP, hopefully by the end of the summer.

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Comments

  • mphoto
    12 months ago

    I am just seeing your new post now. Sorry, I don’t seem to be set up to get notifications related to posts I’ve made. That sounds so scary! I am so sorry to hear that you went through that. That syndrome is something the Movement Clinic Neurologist considered for me, but said I didn’t have it. I really, really hope you can find a Movement Disorder Neurologist to help you. I feel that ERs are not equipped to handle complex cases like ours, or even general neurologists. I don’t know where you live, but I saw the clinic at UCSF in San Francisco. I am sure they would recommend a clinic like theirs near you if you called. You can just google them and they come up. Anyway, best of luck getting help. I have also had a heart rate problem recently, and spent the last week dealing with a uterine hemorrhage and subsequent minor operation to stop that. They removed lots of polyps and I’m waiting for biopsies. I feel that all this must be connected, maybe through hormones, but the doctors right now are treating them all as separate things. I will be sending lots of positive thoughts your way.

  • petitemathilde author
    1 year ago

    I am glad you have the beginning of an answer and I have to say the results of the consultation are quite interesting and have me thinking. I never heard of myoclonus before but quickly lookibg at is very interesting as well. I had an unfortunate incident two weeks ago that left medical staff a little puzzled. I had a very bad migraine and started to feel jerks in my neck, like electrical impulses. These are familiar and happened before but it quickly escalated to full body jerks that had me bent backwards to the point of having trouble breathing. I ended up in the hospital for what the doctor ruled as a serotonienergetic syndrome even though my medication dosage didn’t fit. I was discharged as soon as my heartbeat went back to normal but I am feeling unsure about the whole incident. This did convince me to keep looking for a neurologist that would listen to my concerns and I hope the health care system will be able to help me soon. I also feel very strongly about the connection between migraines and tremors even if doctors are not sure about the possible link between those two. Also thank you so much for giving me news!

  • mphoto
    1 year ago

    I am new here and have never commented before. But, I have had migraines for about 7 years, have also tried all kinds of things. And 3 months ago, I developed a hand tremor. I found your comments because I was looking to see if there could be a connection between my migraines and the tremor. I haven’t made much progress yet with diagnosing the tremors through my GP, and I am in between headache neurologists. I’ll be seeing a new one in August and also a clinic that deals with tremors.

  • petitemathilde author
    1 year ago

    I am glad you are able to consult at a clinic that specializes in tremors, so far I haven’t been able to get any information on the correlation between migraines and tremors more than ”it’s normal to have tremors, it could be your coffee or anything else, plus you are taking anti epilepsy mediacation so don’t worry about it…”
    I would be very interested in knowing the feed back you receive on that.
    Good luck on your journey !

  • mphoto
    1 year ago

    I was able to finally see the Movement Disorder Neurologist on Monday who confirmed that I have tremor all over, not just my hands as I had thought, and myoclonus. It’s either essential tremor, or possibly a side effect of some of my migraine medicines. I was so relieved he ruled out lots of “bad” stuff that I now feel like I didn’t ask all the questions I should have to understand what I do have and which is more likely the cause. It’s complicated. I also started with a new neurologist who is going to try to help me get more functional, which involves changing medications. So, The tremor will either be with me until we can isolate and stop the med causing it, or it’s a permanent thing that will likely get somewhat worse over time. I also posted about this on another forum thread I found talking about tremor and migraine. Neither neurologist thought there was a link between my migraines and tremor, but reading these forums, it seems there are connections.

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