Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Vertigo and migraines?

Discussion in 'Neurological/Neuro-sensory' started by Kbrown84, Jan 21, 2017.

  1. Kbrown84

    Kbrown84

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    Hi I'm new here. I have CF Fibromyalgia, Pots, Eds, migraines and pcos.
    Silly question but does any get vertigo and dizziness with CFS? Or migraines? I have migraine associated vertigo and hemiplegic migraines which have been so much worse since diagnosed with fibromyalgia and CF.
    They've put me on pizotifen and lyric/pregabalin but not helping much. Seems much worse during a crash/flare up.
    Really struggling as I've been so bad with fatigue, pain and vertigo I've been housebound and bedbound for over 2 months and Christmas was miserable. Just want to be back on my feet but can't quite get there. Any advice gratefully received x
     
  2. Richard7

    Richard7 Senior Member

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    Australia
    I was on pizotifen for about 4 or 5 years and it improved the migraines but made the CFS much much worse.

    Well, I cannot be sure as I started it about the same time as I moved house which was reason enough for a major crash, and others have failled to recover from such crashes. But, even before I moved house it really stuffed my sleep patterns up and was associated with worsening anxiety and fatigue and so on and so on.

    It is also a H1 and H3 antagonist so probably reduces stomach acidity, which I already had issues with.

    At the time I had chronic severe migraine and got enough relief to be unable to think of dropping it. But if I had a time machine I would like to have tried other alternatives, taking pizotifen it is something I would prefer to have not done.

    So in your position I would suggest talking to your doctor about alternatives which do not have fatigue, muscle pain and dizziness as a side effects.

    Here is a leaflet which describes the side effects http://www.medsafe.govt.nz/consumers/cmi/s/sandomigran.pdf
     
  3. edawg81

    edawg81

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    Upstate, NY
    I get dizzy and migraines, right now i will take advil for a bad migraine but otherwise treating cfs with ldn and antivirals. Hoping migraines are root cause. Will let you know.
     
  4. Kbrown84

    Kbrown84

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    Thank you for your responses. I'm finding the vertigo my biggest issue at the moment with the sheer exhaustion coming close second. I have found the pizotifen has made my fatigue worse snd I'm struggling to get up in the mornings. Did you have this? If so how did you handle it?
    My poor husband is doing everything for me and the kids i feel so guilty.
     
  5. Richard7

    Richard7 Senior Member

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    My issues with side effects were profound and if I had a doctor who was on the case ( or a spouse or someone) things would have probably gone differently.


    It started when I tried coffee and paracetamol (an adult dose paracetamol and two (or three) strong espressos. Another patient had mentioned it when I was in the waiting room to see a neurologist a few years earlier, but as something that worked for her if she took it during the predrome (two doses 4hrs apart at first signs).

    In late 2007 an academic who works at the health/physiology side of psychology mentioned the paracetamol and coffee trick and explained how it was thought to work for a subset of migrainers, so I tried it and it worked.

    She also explained that my whole approach to migraine had been wrong. I had just been bearing it and of the opinion that drugs (mostly mersyndol) were to be avoided. I had no idea about avoiding triggers. I did not seek them out, but my triggers glare and pattern glare (fluorescent lighting being the most ubiquitous form of pattern glare) were hard to avoid.

    I did try to get workplaces changed etc but had long accepted that pain, tinnitus and mild vertigo as an everyday thing. Indeed oddly enough late 2002 was the first time I had a long an extended period without migraine, and I started 2003 with a strong aim to find a suitable migraine free workplace, but found myself in the most appalling one, and was unable to find a suitable one before the workplace lighting pushed me into continuous chronic migraine that was more severe than any I had had previously.


    I understand that migraine is a form of sterile inflammation. (Like a burn or a muscle that has been overworked.) I have not been well enough to explore the notion but I have been wondering if that is the common link between the various causes of CFS (viruses, bacteria, mould, severe trauma (say the sort of car accident that puts you in hospital for months) and so on). But it could also be that viruses and other microorganisms took advantage of a body with a oddly functioning immune system. I do not know.

    Anyway this academic explained that the idea was to avoid all triggers and stop the migraine as soon as possible, because the more migraines you have the more sensitive you become to triggers and the worse the migraines become. Someone (maybe a doctor I cannot remember) I spoke to around that time likened it to learning to have a better (stronger faster) migraine: practice makes perfect.

    In 2007 I had really severe migraine all the time I would have about 10 days each fortnight that would keep me bedbound, or curled up in a corner of the room because the vertigo was so extreme that I could not handle it without 3 surfaces I could believe in. On those days I was often not particularly conscious, or did not remember much. On my good days things were not good, and I still had migraine, but was not completely incapacitated by it.

    So when I found that the coffee and paracetamol worked I went to see a doctor (just a normal GP) and he suggested that I try cafregot, which worked, and then suggested that I go onto sandomigran. At the time he told me that it was the only one that was covered by the PBS (govt. subsidised medicine). He may have been wrong about this.

    But I found that it seemed to reduce migraine severity pretty much immediately. But I was also unable to sleep through. I would sleep for maybe 90 minutes then wake up with a really vivid dream that left me with a lot of work trying to untangle it from reality. Then a couple of hours later I would get another 90 minutes, and then have another break and another 90 mins or so.

    I felt that the lack of sleep and vivid dreams were sending me crazy, but did not report it to the doctor because once the pain had been reduced to a more manageable level, I did not feel I could go back to how things had been. He was not following anything up, he was kind of useless as a GP really. And I know I searched the internet for patients reports about the drug, and everyone I came across seemed to be saying that you just had to tough it out for a couple of months. So I felt that this was the right thing to do.

    Once I was used to the sandomigran (pizotifen) I had really bad sleep. I still had the occasional super vivid dream, but it was mostly just that I had no control on some nights I would not sleep at all, and on others I would sleep for 14 hours straight and I had no way of controlling what was going to happen.

    When I came off the drug, once it had washed out of my system, I had a morning when I woke up and really could not believe the date. Years had passed and I could barely remember their passing.

    My sensitivity to triggers is now extreme, but my migraine is no longer self sustaining - it only happens if it is triggered (I think) and there are periods without migraine. My migraines are nowhere near as extreme.

    So the drug kind of worked, but I suspect that there were better solutions.

    My digestion was already pretty bad but I think that the treatment I had, which was the paracetamol and coffee (maybe as many as 150 - 200 paracetamol a year) plus the sandomigran may have made my digestion worse.

    The sandomigran did something weird to my appetite. I found that I could go all day say 20 hrs or something without food before I started to feel hungry, but then I would be ravenous - just painfully hungry (think crying baby) for hours and hours no matter how much I ate. My adaptation to that was to try to follow a zone diet and always eat as much, or just a little more, than I needed before I got hungry. I ended up putting on tonnes of weight.

    But in truth it is hard to work out cause and effect, n=1, I was ill so cannot remember everything I do not understand it all.

    I would just be vary careful about using it and would speak to the doctor about alternatives that do not have vertigo and fatigue as potential side effects.
     

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