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So sensitive to meds. Even vitamins make me dizzy. Sorry for rant

I was diagnosed with a “migraine variant” in 2012. No migraine pain but severe vertigo/dizziness after visual stimulation/exersise. I had some tests, MRI normal. I had a 50% canal paresis to the right side whatever that means or proves.

Tried the diet, didnt make much difference, tried the merry go round of anti depressants, anti convulsants, beta blockers… I last about a month to 6 weeks on all of them and cannot function or see any sign of improvement whatsoever so discontinue which i know is wrong, i know they can take months to work but i have a job and child. They make things 100 times worse and i panick and want to get back to baseline ASAP (dizziness still there but able to live a somewhat normal if uncomfortable at times life) so i taper and stop.

The thing is, every time i stop the meds i end up worse than the baseline i was before taking them and I dont get back to that baseline for weeks and weeks. Its like my brain is mega angry for taking this stuff.

So I tried the vitamin route. COQ10, B and Mag also Feverfew. (not all at the same time) They did the same. They made my symptoms worse…VITAMINS and MINERALS made me worse ! so again i stopped although i got back to baseline quicker.

Im at my wits end now. I have a follow up with Dr next week to see how im getting on with Pitz which was truely awfull for me. I imagine hes going to ell me he cant do anything else for me.

Sorry i need to vent and this is the only place i can do it. Thanks for listening to my story.

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I think that’s the downside to meds. If you are lucky they control symptoms but the downside is you may delay compensation with some meds. Come off some meds and your brain has to recompensate all over again. It’s possible that compensation is hard to achieve unless the underlying condition stabilises. Once the underlying condition has calmed down I doubt compensation would take that long - a month? I evidence that with a study where they had several healthy subjects where they used a headset that incorporated prisms that swapped their view of their eyes and made a left turn appear like a right turn and vice versa. Within 3 weeks their brain compensated and they were able to negotiate a maze on foot. After taking the headset off it took them only 1 week to return to normal.

I concur that migraine is probably a result of the brain struggling to deal with the noise and compensate.

I am very sensitive for magnesium supplements. Tried various. All sooner or later triggering MAV.
I did up my intake through naturally mag containing foods though.
And am helped by b2 & coq10.

I am sorry all this didnt work for you.
It can be a tedious search, tiring as well.
Take a break, we sometimes need a break to rebuild courage and resilience, but please do not give up.

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The way I see things is that vestibular migraine is a very complex disease which has many different and subtle triggers so if one kind of vitamin doesn’t work it may be that you need to try a different brand for example. I have found it trial and error myself. I only buy vegan friendly supplements because I don’t fare well with others. I also make sure that preservatives and additives are at the minimum necessary to actually create the supplement. I cannot take vitamin B which includes yeast and it took 3 attempts to find one that suited me even though all 3 were yeast free. I think we have to be very patient during our search for helpful medication of all kinds which I know is frustrating because it would be wonderful if there was a magic bullet. But sadly our hypersensitive brains need very specific things to help them and what works for me may well have the reverse effect for you.

As you are going back to see your doctor I am sure he will not write you off, well he certainly shouldn’t, and will suggest perhaps a different brand. It is just trial and error. When you are given the correct medication and you find supplements that work for you things will improve immeasurably but it takes time and patience. Stick with it and I wish you the very best in your search.

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Been a while since ive been here . Hope your doing ok and managing. Just need a moan. I was plodding along at 80% good for a few years med free, managing it - but due to some bad life things going on my depression took a hit and i started citalopram 5mg, 10 then 20 over 6 months . I reckon i was 99% for a while why i was taking citalopram i honestly didnt notice any mav symtoms but was so freaking tired I spent most the day in bed and couldnt function as well as having absolutely zero libido so decided enough was enough and those SE/s wouldnt go away…My taper started a month ago and is down to 5mg now and i can function again already, however my MAV symptoms have taken a massive hit and i feel like c**p . I hope this goes away and i can get back to 80%, not sure whats worse the fatigue on the meds or the MAV off them.

I wonder if that proves Citalopram can be used to control MAV symptoms. An interesting line of enquiry that.

Quite often seems people go a few years with minimal symptoms and drift from this site only to re-emerge with a resurgence after some change of one type of another, sometimes drugs related or environmental. Seems they usually regain their equalibrium, both metaphorically and literally , pretty quickly and get back to leading their lives. I guess that only goes to show, for many but not for all, MAV is a long-term ongoing condition that can be controlled but doesn’t actually go away.

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Hey Onandon03.
Yes Scott the founder had sucess on Citalopram and a few others .It is one of the neuros favourite (cant remember which one, Baloch ? ) Anyway i stopped the citalopram 2 weeks ago after a 1 month taper…this is far too quick to taper ive since discovered. My GP hasnt a clue about tapering…He said 2 weeks ! … I had horrendous symptoms almost bedridden with dizzines, vertigo emotinal issues, body aches…I was definaltly going through a bad withdrawal that triggered MAV and other symptoms…
So I have now reintroduced citalopram at 5mg and within 2 days all syptoms dissapeared. Yes completely went, i am so relieved…I am going to stabalise on 5mg for a month and plan on a 25% reduction a month taper and do this more slowly somehow. I might need liquid citalopram or tapering strips that you can buy online wiith Dr consent…Or even stay on 5mg if the side effects that lead me to want to stop Citalopram are not as severe on 5mg. I would definatley choose being tired all day and have no Libido than being dizzy.

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Oh that’s not much of a choice. Don’t really fancy either of those options myself. What a choice eh. Yes I think that’s right I had noticed it was one neurologist first choice. It was the first drug I was prescribed for being 24/7 dizzy but that was pre diagnosis. I never tried it and it has never been mentioned by any further medics or neurologists since. It doesn’t figure for MAV in the UK it seems. I do remember being told it was difficult to start up on by my doctor. I now understand all that class are difficult to get off of. No doctors here don’t seem to recognise withdrawal difficulties. I have seen several instances within my own family and a few months ago there was quite extensive press coverage relating specifically to antidepressants people were in for mental issues. New guidelines are due to be issued here it seems. Rather late in the day as antidepressants have been with us many decades now but better late than never I guess.

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Yep, the GPs really need to start learning about a proper taper, they seem so clueless. I hope you stablize well on 5mg. When I went off Paxil, I was crushing the pills (not extended release) and weighing the powder. The hardest part was that last little fraction of a dose. When I was 20 I went off Paxil cold turkey without any issues other than some mild brain zaps. It’s weird how the body changes as you get older.

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