Thank you for your post Janb! When I first read your story I found it very inspiring because you managed to get off Pizotifen, something Iād like to do in the long term. It is great to hear that you are still off it and are doing ok. I like your approach of reducing Pizotifen by 0.5 mg every eight weeks and Iāll do the same, unless my neurologist suggests a different approach.
I started the 6C diet as well. I was already off caffeine, something which was very difficult for me, because I loved to drink one or two cups of green tea in the morning and one or two cups of coffees per week. I still miss my green tea, but if it helps my vertigo, then I am ok with it. Avoiding all the other Cās is not a big deal for me, so Iāll see whether that helps me as well.
I hope you continue to improve and your ears are getting better as well!
Exactly the same as me. Iām usually quite slim and Iām sure Iāll lose it once off it. But not ideal. Youāre right, itās wayyy better than feeling like spinny crap all day.
I saw my neurologist today and she was fine with me having reduced my dosage of Pizotifen from 4 (2 x 0.5 mg) to 3 (1 x 0.5 mg in the morning and 2 x 0.5 mg at night). She did, however, not think I was ready to reduce the dosage further, because I still have some background dizziness and a stiff neck. Her advise was to only reduce the dosage it if I have felt 100% good for a 2-3 weeks. I could then reduce it by 0.5 mg. She thinks that it is enough to wait for about 2 weeks before any further reduction.
Iām on Pizotifen too. You asked up thread about people who take larger doses well I take 4.5mg a day in 3 equal doses (there is a 1.5mg pill so I take that rather than the 0.5mg ones). Itās the maximum amount I think. I built up to taking that amount really slowly. Once a got to 1.5mg a day after a month or so I was told by my neuro to go up 0.5mg at a time and stick on it for 12 weeks to assess if it helped (as there is no point taking more of a med than needed). I felt a bit āoffā and woozy for day or so after each increase. I have put weight on (about 10kg! but over 32 months, gradual creep) which I canāt seem to shift (I think Iām hareing around less than pre meds and not pushing myself so much, gentler exercise etc.) but itās preferable to being useless. Iāve also had MAV (misdiagnosed) for decades so am a hard nut to crack. My neuro reckons if you catch it early then generally treatment is much faster and fewer meds are needed
There is a plan in place to come off the Pizotifen once I am totally stable ( whatever that means) which is to reduce the pizotifen by 0.5mg(per day) every 2-3 weeks. If symptoms return, go back to the previous dose for 3-4 weeks and then try reducing again. This aligns with your neuroās advice about waiting 2 weeks. (I saw the same Neuro as Janb).
I read that they ditched Pizotifen in the U.S. as clinical trials showed no significant effect and even a lot of Drās here in the UK donāt rate it all. Perhaps there is no money in it - I had a private prescription for it initially and even with the dispensing fee it worked out at under 5p per pill.
That sounds like a large dose @sputnik2. I had said to my neurologist that I think my dosage (3 x 0.5 mg) was too high and she told me that a colleague of hers prescribes much higher doses. She also said that Pizotifen used to come in 2 mg doses per tablet, so my dose is actually quite small.
I have been ok so far, except for putting on 1 kg initially. But I have only been on Pizotifen since the middle of May and I have to watch my weight very carefully.
That sounds exactly like my neurologist. I can reduce it when I feel 100% for 2-3 weeks.
It seems to be used quite a bit here in Australia.
You sure she said āweeksā and not āmonthsā? That seems way too soon to start reducing from all Iāve read. The U.K. experts talk of at least six months of total control by medication before trying to come off. Iām talking āquittingā not reducing to adjust to see if you can be better or as good on less just in case of confusion,
Yes, she definitely said weeks. But she meant reducing the dose by 0.5 mg (1 tablet), then see how I go. If I am still 100% for the next 2-3 weeks, then I can reduce it by another 0.5 mg and so on.
I decided last night that I am going to reduce my Pizotifen from 1.5 mg per day (0.5 mg in the morning and 1 mg at night) to 1.0 mg per day (0.5 mg in the morning and 0.5 mg at night). My neurologist had said that I can reduce the dosage if I have two or three weeks of feeling really good. That has not been the case, but I felt that the Pizotifen side-effects have got worse. I have been feeling very fatigued, nauseous and my mood started to be low. I had experienced something similar at the end of June when I first decreased Pizotifen (from 2.0 mg to 1.5 mg).
So, last night I only took 0.5 mg, then this morning I took another 0.5 mg. So far, I have not had any adverse VM effects, but I guess it is early to say. However, when I woke up this morning, I felt energetic. Not sure whether that is the result of reducing the Pizotifen either, but maybe it is.
That happened to me backing off on Ami. Coming off the drug completely made me feel ābrighterā. Different drug but similar feeling. A lot of these drugs are known to āmake the brain sleepyā.
Very interesting! I have been feeling really good the whole day, went to the gym, worked in the garden and did not need a nap. I almost feel as if I have been released from sedation.
I hope that I donāt get any VM effects and that I can reduce Pizotifen even more after a few weeks.
May have already referred you to it but one of the U.K. experts, Dr Silver, writes that any drug which causes sedation once you have had time to get really used to it should be discontinued because it will prove ineffective.
Today is my second day of reduced Pizotifen (1 mg a day instead of 1.5 mg). Yesterday I felt fantastic, today it is different. My brain still feel very clear, so that is good. But my energy is low and I feel dizzy. The dizziness is not too bad, but it is there in the background. I imagine that this is a normal reaction after reducing medication, but I wonder how long it takes to subside?
It is certainly a listed side effect of withdrawal. So itās either that or just usual VM symptoms pushing through because the protection barrier has dropped. Presumably a side effect will be relatively short-lived. If the dizziness continues one can only assume itās just the VM and that you need to replace the Pizotifen or try another drug.
This is the same dilemma currently receiving much press coverage here with regards to antidepressant withdrawal. Many doctors donāt recognise/have no training in dealing with such withdrawal and people end up endlessly on antidepressants because every time they try to reduce they experience symptoms which the doctors then tell them means they still need the antidepressants and so put them back on. It must be difficult to distinguish a lot of the time.
You are right @Onandon03, withdrawals (e.g. from anti-depressants) are difficult and it is much easier to go back on the medication when there are signs that the symptoms might come back.
I started to get a headache last night, something that is very unusual for me. I probably had three headaches during all my life, so the one last night was surprising. I decided to go to bed and did not take anything for it. This morning I woke up and felt energetic again, and the headache was gone. The background dizziness is still there, but it is getting less. And I felt good during the day. So I think (or rather hope!) that the symptoms I have been experiencing are the side effects of Pizotifen withdrawal.
@turnitaround - when you came off Ami, did some of your symptoms come back and if so for how long? Can you recommend something you did that helped you during this time?
Most of my symptoms were never eliminated with the meds, except for the major migraines and the dizziness (but not imbalance, tinnitus or vestibular attacks which persisted)
Coming off meds did not lead to any significant escalation in anything (but I suspect would have done if too soon)
I actually wonder if coming off the meds helped lead to my ultimate recovery as my brain was then able to fully compensate.
I have a hunch I was deep into recovery mode anyway so it was time to dump them.
I think my withdrawal symptoms have gone, I am feeling good today. Now I am taking 0.5 mg of Pizotifen at night and 0.5 mg in the morning. I think Iāll stay on this dosage for a while and wait for my body to tell me ātime to reduce it furtherā.
I finally decided to further reduce my Pizotifen intake. I used to take 0.5 mg in the morning and 0.5 mg at night. This morning I did not take the tablet, I took only 0.5 mg tonight.
I felt that my eyes were a bit off during the day, everything else was ok. I hope that my eyes will go back to being normal soon. And hopefully no other withdrawal symptoms. Wish me luck!
Oh yay for you. Thatās great that youāre giving it a go. See how you go. Funnily enough, Iām reducing to zero as of Sunday. Iām going camping on the weekend so donāt want to rock the boat before then. So to speak
