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Luuk's diary

From memory Flunarizine only seems to occur in two strength doses for MAVers at least. 5mg or at an extreme push 10mg. I understand you already tried and dropped back from the 10mg. From all I have read it tends to work relatively quickly and very effectively and as a lone drug for those that tolerate it. Not sure it mixes that well with others I have also read it can react with some antidepressants and I have a strong feeling alcohol. As it’s not one of the more commonly used drugs for MAV there’s only limited information available to lay people. Two fairly recent posters who take it and may be able to comment are @MissMigraine and @Hecoso otherwise maybe you need to broach the subject with your medical advisors. Perhaps it’s not the best choice for you.

Another maybe more readily accessible though perhaps less palatable alternative might be to check out all the other aspects relating to prevention such as lifestyle changes, for example alcohol intake, sleep regime etc. Could be you have been pushing the boundaries far too far too soon and need to rein well in. I have read many times on here archived posts of people having relapses as a result of having had the audacity to try to ‘get their life back’ despite warnings from neurologists etc telling them they needed to take everything very steadily for a long time after the worst symptoms eased up. Remember the meds are masking the condition. Not curing it. So for a long time it won’t take much by way of overdoing it for a return of symptoms.

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Then if you have VM or MAV you would be experiencing atypical migraine symptoms and same would apply. I don’t get typical migraines or at least I had MAV for more than 12 years before I had one and so far that is the only one I have had. I would get everything but the headache. Whichever way it progresses you have got to stop the symptoms occurring.

This is a Topic for another … Topic (and not someone’s Diary). I’m not convinced it’s all migraine either but pulsing around the head almost certainly is. Therefore it’s good to use the drugs to clear up some of the neurological symptoms.

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Thanks @Onandon03 and @turnitaround.

My apologies to all for posting on a personal diary.

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Flunarizine was great for me at first. Then the side effects took over: extreme tiredness, low mood and a lot of weight gain.
I guess every case is different, but see if you can just take it for not too long. I took it for two years and I have just stopped taking it after winding down for 6 months. Good luck!!

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Helena. Thinking more specifically of Luuk can you remember what dose you were taking, whether it started to work quickly and whether it took control of most symptoms. From reading I seem to recall some people find it controlled 95% of symptoms within a short time period, say a few weeks? Any comments?

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Thanks!! I’m using it now for almost 3 months. I know what you mean by the tiredness. I went from 10 to 5mg but still I can feel I’m more tired as usual, especially in the morning. I’ve had some 95% weeks but Its going up and down. Did it improve further for you after a few months? Or did it stay that way. Thanks!!

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I had some great weeks on it and my vision stableized significantly. I can’t find how long people take it to get a bit more stable result.
Also there seems not much known about interactions with ssris. I know its not a problem to take both as my doctor said, but my Flunarizine is a dopamine blocker and I think with my SSRI I am uppening this chemical so I do t know if I reap the full benefits. An option is stopping Celexa maybe…

Thanks all for responding!! Great info and advice. Going more into self care. I’m 29 and used to be really active so i’m learning now how to use my energy in a right way my symptoms don’t go up

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Are you planning for taking something instead ? Because I heard that the symptoms can get back after 6 months…

My doctor says most people keep the benefits of Flunarizine after stopping the med. Have to see about that😆 did you improved more as the months went by with Flunarizine?

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I hope it will, I think it’s a risk just as for SSRI :slight_smile: I didn’t start Flunarizine yet, I’m waiting a little bit more because I have my thesis on Wednesday and I don’t want to be tired before :sweat_smile:

I started with 5mg, it was great for almost a year. I started feeling better after a couple of weeks/one month. Way less dizzy, I could go back to almost a normal life, walking by the street, not needing to sit down immediately after 5 minutes walking…I remember telling my doctor I was feeling great. The problem is that I never went back to normal life 100%, I´ve always been a little bit dizzy whenever I walk or after 15/20 minutes of any other activity (going to museums, shopping, speaking with someone in the street…) so I never stopped the treatment, I just wasn’t prepare to feel super dizzy again.
After one year approx I remember feeling more and more tired gradually, so I started sleeping more and being less active, I tried to stop taking the flunarizine and the attempt was horrible, I felt dizzy again and couldn’t do it. I then went up to 10 mg, the worst thing I could do…more tiredness, less walking, even less active. I went back to 5 Mg and I´ve been feeling better because I´ve introduced light exercise, vitamin B2+ magnesium and stopped drinking coffee. I am still far from being symptons free but I decided I didn’t want to take more Flunarizine and I just stopped one month ago (very gradually withdraw) . I feel ok now, still with many limitations but learning to life with it and focused now on getting more active and fit very slowly (with yoga and pilates). Hope this helps although I know every one of us is a different case. My only advice would be don’t just rely on meds, consider an approach that includes different changes and habits and if you are feeling too low and tired tell to your doctor as soon as possible, Flunarizine could be exacerbating this. Good luck!!

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Thanks Helena for your detailed response. Few posters here ever take Flunarizine. It’s very little used here in UK. I know in Europe usage is much more widespread. Thanks for filling in more information in detail such as can only be found from personal experience. That’s great and is now on record for newcomers in the future. Much appreciated. Btw presumably you didn’t have much trouble coming off it? How did you best reduce? By cutting pills in half or taking them alternate days? I assume 5mg is the smallest available dose?

it definitely improved but after some months I felt I stayed the same, never 100% in my case but much better that before taking it.

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The very best of advice.

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Thank you Helen, I really appreciate your help here and I wish I could give some help back. I only took Flunarizine because my doctor from Spain prescribed it to me and my doctors from the Royal ENT in London encouraged me to carry on if it was being good to me, then we agreed to start coming off gradually because of the side effects. I´ve never taken any other treatment (except AMI one month, it increased my headaches though).
I decided to come off veeeeeeryyyyy gradually: during 2 or 3 months 5mg alternate days, then 2 more months cutting the pill in two (2.5 mg) in alternating days, and finally half (2.5 mg) every two or three days for one more month.

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I am sure Luuk and @Louna_Lou are most appreciative as am I on behalf of future comers. Doctors are so vague about MAV so there’s nothing like personal experience. Gives some idea what one might expect to happen. Helen

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Thanks for the big explanation :green_heart: much appreciated!! I will discuss my next option with my doctor. @Onandon03 also thanks!!

I will go on with my diary on to recovery! :grin:

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