I had a major vertigo attack in the middle of May which landed me in hospital for four days. The neurologist prescribed Sandomigran (Pizotifen) 500 mg, two in the evening, two in the morning. I have been taking them diligently, but I have not seen many improvements. I still get auras (no headache), three so far (that is ānormalā for me), and I have been feeling completely fatigued and drowsy. I sleep 8-10 hours a night and then another 2-3 hours during the day. I also feel drowsy during the day and have to force myself to do things (e.g. going to the gym or for a walk). I have increased appetite, but am able to keep my weight under control by eating less (I am slim). Because of these side effects (fatigue and drowsiness), I have decided to withdraw from the medication. The pamphlet states that one needs to withdraw slowly, otherwise there could be some serious side effects (e.g. fits). I am unclear what āwithdrawing slowlyā means, and there seems little information on it. Does it mean reducing the tablets by one, once a week? Or once a month? I would very much appreciate it if someone could tell me their experience with a slow withdrawal.
Hi and welcome
I have read itās a difficult drug to quit. Jan did exceptionally well on it and is now completely off and pretty much OK but situation bit different from yours in that her whole process was overseen by her consultant and she only quit upon his instruction to do so. I appreciate however many people come off for same reasons as you. Those reasons are why many medics are reluctant to prescribe it in the first place. Itās such a successful drug at putting weight on itās used for such post famines.
Suggest you read @janb diary. Janās MVBD / MAV Escapade. She came off starting in September 2019.
This extract might give you some insight.
āDr Surenthiran - I had an appointment with him this week and I can start to reduce my Pizotifen dosage by 0.5mg every 8 weeks so I have now dropped from 4 to 3 x 0.5mg per day. I have to stop reducing the dosage in December, as Dr S says that is when people tend to have problems - Christmas stress? - and then I can restart in January. Diet: I have to stay on the 6 C regime for anther 6-9 months as Dr S doesnāt want me reducing pills and re-introducing food at the same time. Makes sense to me, although I had fantasised about having some chocolate!ā.
Having just re-read your post Iāve noticed, if Iām reading it correctly, youāve only been trialling Pizotifen for about four weeks. Iāve no idea what result you were led to expect however whilst fully appreciating your reasons for wanting to quit I feel I must point out that such a short period of time is unlikely to yield results. As example Jan was on a similar dose for about two years. Also, not sure whether you intend to replace the Pizotifen with another drug but please to bear in mind before moving on all preventatives have side effects many similar to those of Pizotifen.
Thank you very much Onandon03 for your reply! I just read Janās diary and I find it very useful. Interestingly she got her first vertigo attack at age 64 - and so did I.
I had thought that I am going to reduce the Pizotifen dosage much faster, but after reading Janās diary, I think Iāll go with her approach, namely to reduce it by 0.5 mg every 8 weeks. I started to reduce the dosage today in the morning by 0.5 mg, so I now take 3 tablets. So far, so good.
I was not aware of the 6C diet, I think Iāll start with it as well. Dr S. sounds excellent. I am based in Australia, so the UK is a bit far away for a consultation.
Yes, that is correct, I have been taken Pizotifen for about 5 1/2 weeks. But I feel I am unable to handle the side effects (fatigue and being drowsy). Maybe taking only 3 tablets a day will decrease them. And then Iāll have another 8 weeks for Pizotifen to work before I reduce it again.
Doctor surenthiranās MAV diet sheet
You can use the Search facility for any keyword you fancy.
Australia appears to have quite a few specialists of its own by of course its very much location dependent.
We really should be referencing the #support-wiki for reference material wherever possible.
Standard diet for MAV/VM etc. is here: Diet
Dr. Surenthiran is just following regular dogma (for good reason), itās not just his diet plan.
I am located on the Gold Coast.
And just maybe you will find yourself a āsweet spotā. Itās not unknown for sensitive MAVers to find they can do extremely well/better at a much lower than prescribed dose so as you descend keep that in mind. You may find it suits you after all. I was told to only increase by 0.5mg per month if I trialled it and a maximum dose of 1.5mg. Migrainey types tend to be hypersensitive and take much longer to adjust than some other people.
That makes sense! Iād love to find the sweet spot.
When I was in hospital I was given two 0.5mg doses at night and two 0.5 mg doses in the morning, there was no slow increase, just 2 mg in one day.
Look out for it. Finding it wouldnāt be the first time anybody did. You may yet put those 8 weeks to good use. Amazing you could take that dose straight off. I am sure I would never have been able to do so. I trialled Magnesium Glycinate earlier in the year and thatās supposed to make you relaxed aka āsleepyā. I couldnāt keep my eyes open on Day One of 100mg and was supposed to be taking 400mg! Two tiny Valium once and I slept ten hours and that was straight after waking up from the previous nights sleep. Most MAVers are very med sensitive. Goes with the terrain.
I was not given any option when I was in hospital. But from what I have been reading here on the forum, it is a big dose to start with. I normally donāt take any medicine, because I react to it. Interesting that you also react to supplements, I seem to be ok with them.
Oh I donāt like the sound of that. Thatās bullying. We all always have the choice. Thereās that nice little word āNoā. Comes in very handy Iāve found.
Sounds as if maybe you have barely any increased medication hypersensitivity which will prove useful with MAV for sure. Yes Iāve reacted to every vitamin.supplement so far. Never took it on board at the time but was only a child when I remember the family doctor telling my mother āyou appear to have the only child in the world who is allergic to calamine lotionā. Guess I should have seen the writing on the wall then.
I agree with you. However, when I was given the medicine I was in such a bad state (everything was spinning and I was very nauseous) that I did not ask any questions and just took it. I have not taken any medicines as far back as I can remember, but this time I was prepared to take anything that was offered to me.
That must be difficult if you react to every vitamin supplement. Are you ok with food or are you sensitive to that as well?
Hi @Katharina, Iām based in Australia too and also on pizo. I slowly titrated up .5 every two weeks until 1.5mg. I take all 3 at night. Taking two in the morning and at night is a big dose, especially right from the outset. Also, taking in the morning is going to make you tired in the day.
It really helped me, but I must point out I had trialled a drug prior and I do wonder whether time was also a factor in it working so fast.
I was really tired to begin with in the morning after huge sleeps, It does get better.
I wonder whether you could alter when you take it?
But if you have decided to come off it, I wouldnāt imagine .5 every 8 weeks is necessary after only having taken it for 5 weeks. But go with what your doc tells you.
Hi Belindy, A big hello from the Gold Coast! Yes, two tablets in the morning and two at night was definitely a big dose to start with. It was probably because I was in hospital and the neurologist decided to go hard and fast. I also took Stemetil (prochlorperazine) one tablet three times a day (for about one week) and one Nurofen three times a day (only for one day). I donāt take Stemetil or Nurofen anymore.
When I saw my GP after the hospital stay, I talked with him about the four tablets and that I consider them a high dose. He told me that he has patients that take nine Pizotifen a day. Iād love to know how these patients feel, I would be sleeping the whole day and night.
Now that I reduced Pizotifen to one in the morning and two at night, I feel much better. I manage to get through the day without feeling overly fatigued and I have not needed a nap in the afternoon. It is only my third day with the new dosage, so hopefully I wonāt get a vertigo attack. Iāll stay on this dose until I see my neurologist in the middle of July, Iāll then discuss with her to reduce it further. I still like the idea of reducing by one tablet every 8 weeks.
Glad youāre feeling a bit better. I opted for all at night as I think it would affect my day at work. But you do get used to it hey. Having said that, I can pretty much fall asleep before my head hits the pillowā¦ even as early as 8:30pm
- which is better than insomnia which I had on my other drug.
I kept the weight off for about 4 months. Then itās slowly hit me. That is the worst part. Not too bad but still - a solid 5kg.
Wishing you better days from Melbourne.
Maybe thatās your sweet spot. @Belindy is probably right. After only five weeks you could probably come off much quicker however if you are attempting to really trial it for after all it could be your solution itās worth doing what you are. The dose you are now on is maximum doctors in U.K. will prescribe. Only knowledgeable specialists seem to go higher. We have people on here who take 4mg I think. @sputnik2 comes to mind. Itās a question of very gradually, glacial almost, increase and suffering while-you-wait rather by what Iāve been told. Here in the U.K. in general practice Pizotifen is very little used considered very old hat and out of date. Not that they have anything more modern to replace it or any alternative magic ācureā. I have a packet I squeezed out of one GP but nobody has ever suggested it to me. Itās as if it doesnāt exist. The doctor who let me try some insisted I took 0.5mg for an entire month to start!
I cannot imagine how you stayed awake in hospital on all the unaccustomed Pizotifen plus Prochlorperazine. You must have tough constitution. A couple of 3mg Buccal Prochlorperazine Iām fast asleep.
Hi Katharina
I was interested to read about your experience with Pizotifen - I am not surprised that you felt very drowsy on the dosage you were given as I felt exhausted when I first started taking it on a much lower dose. I built up to a 3 x 0.5mg per day over a 3 week period and eventually added an additional dose so I ended up on 4 x 0.5mg per day. I was advised to take it at regular intervals which was roughly x 1 at 9.00 am ; 3pm and 10/11 pm - when I increased the dose to 4 per day I took 2 at 10/11 pm.
The slow withdrawal from Pizotifen worked really well for me and I havenāt needed to take it again although I do have some emergency packets in my first aid kit!
I did put on weight which, after nearly a year of not taking Pizotifen, I still havenāt managed to lose but have high hopes I will manage it eventually!
I do still have flare ups with my ears - ear pressure often relating to barometric pressure changes - and on these days find that I feel a bit off balance too, but so far the vertigo has not returned. I have been left with 24/7 tinnitus, but find that I have got used to it now - mind you I would love it to go, but I doubt it will. It could be worse!
I think the 6 Cs diet also helped and, on Dr Sās instructions I still avoid dark chocolate, mature cheese, marmite, red wine and caffeine and still use goats milk rather than cows and avoid yoghurt, but I donāt feel that I have to scrutinise food labels as much as I did before.
Glad to note that reducing the dosage is helping - hopefully your neurologist will have some good advice for you too!
Belindy, Keeping the weight off for 4 months is fantastic! I put on one kilo in the first week. Now I am watching my weight very carefully. I have always weighed the same since I was 18, plus/minus one or two kilos, so it will be interesting to see what will happen. If putting on some more weight means that I can have my old life back, then Iāll be ok with that.
Onandon03, Interesting that Pizotifen is used so differently in different countries. The US does not use it all, I think.
And yes, I slept a lot in the hospital. I remember, I got 3 bags of IV fluids (two on one day and one the next), they took about 7-8 hours to go into my body and I was surprised that the time went very quickly, probably because I slept most of the time.