Pizotifen: Increase in side effects at higher doses?

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Hi there, I’m new to posting but have been lurking for quite some time. But I’ve tried searching for this and can’t find an answer, so it has prompted me to finally sign up and post :slightly_smiling_face:

I saw a Neurologist in January of this year who recommended I try Pizotifen as it is most well tolerated. I’ve previously tried Propanolol (made my resting BP drop to 90/60 and as I have postural hypotension too you can imagine how hard functioning on that was!), Gabapentin, and Pregablin, but none had helped. Just before I was due to start taking it I was hit with a terrible case of Labyrinthitis and the severe dizziness and bouts of vertigo from that lasted almost 2 months before my brain started to compensate, much longer than it took the first time I had it in 2008. I assume it is because back then I wasn’t suffering from chronic migraines too! (A bit of backstory - I have suffered on and off with migraines since my teens, but they only became chronic in 2015/2016 when I seemed to suddenly get very sick and completely debilitated. My Hypermobility diagnosis was changed to hEDS, I was diagnosed with either Fibromyalgia or ME/CFS too. That on top of Endometriosis - ugh, why do so many of us have so many health issues to contend with?)

Anyway, back to the Pizotifen. Even though I started it during my Labyrinthitis hell, I seemed to tolerate it well and stuck to 1.5mg when I got to that level. And it did seem to be reducing the intensity and duration of my migraines, if not the frequency. I could rest and stop it in it’s tracks within a day or two, instead of being stuck in bed for a fortnight at a time. This at a time when lockdown meant my 8 year old son with ASD and ADHD was at home so I couldn’t rest as much as normal, and as we got ready to move house (we’re still packing!)

But the Neurologist said I could go up to 3mg daily, so I decided to increase as I was still getting migraines with dizziness and bouts of mild vertigo. I got up to 2.5mg but seemed to be getting more dizzy spells, which I put down to the stress of everything going on. Then a couple of weeks ago vertigo hit me out of nowhere. And then the migraine pain last week. And nothing is touching it. I’ve tried Sumatriptan twice. OTC painkillers (although probably not enough as the Neurologist warned me against taking too many). And Prochlorperazine for the vertigo. Again I have tried to only take that when it was totally intolerable, but it’s been 2 weeks of hell and I wonder if I should have been taking the full daily dose days ago to try and stop this migraine in its tracks. This morning I was in tears on the phone to my GP and all she could say was to try Naproxen instead and wait it out. But you all know how hard that is, especially after 2 solid weeks of not getting proper rest etc.

The vertigo really scares me. I mean it’s like a full on phobia level of fear. The pain I can just about tolerate but not the vertigo. So I need to get it under control. And suddenly this evening I wondered if it really was the stress that brought this on or whether it might be that I can’t tolerate the higher dose of Pizotifen as side effects do include dizziness and headache. What do you think? Could it be that I need to taper back down to 1.5mg daily?

I’ve only taken 2mg tonight instead of 2.5mg as last night was horrific. And I’ll see how I go. But I just wondered if anybody else had experienced side effects getting worse at higher doses when they tolerated a drug well at loses doses.

I’m also taking vitamin B2, Magnesium, and CoQ10, plus turmeric and Gingko Biloba as recommended by my herbalist. And I’ve realised I was eating things that are potential migraine triggers (eg pineapple and dates - I can’t tolerate alcohol or caffeine and have up chocolate and cheese ages ago, but had no idea that some fruits are high in tyramine!) I’m also doing daily meditation and trying to keep calm, but with lockdown and moving and a PIP tribunal hanging over me (finally got a date after my MP chased up as I’ve been waiting 20 months for a date) my anxiety is pretty high at the moment.

Sorry, this has been a massive mind dump! I just feel so desperate right now. I keep trying to remind myself that I had been doing better and having better days in between the bad ones, but it’s so hard to trust that things will get better the longer this current migraine goes on for. I’m sure you all understand that!

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Hi and welcome. No doctors on here. We are all just fellow sufferers.

Increase in side effects at higher doses of on each increase is common with many drugs. And regularly reported on here. Best way to reduce the possibility and severity of them is to increase very low and slow. Many end up doing this by splitting pills etc. However Just to complicate the situation MAV symptoms and their intensity can morph constantly throughout. That’s just the way it goes. Pretty impossible to even hazard a guess at the cause of your increase/change of symptoms. Stress and from all you write with moving house, Corvid and child at home etc etc your stress levels have probably fallen off the end of the scale by now maybe more than once! That will be a major contributory factor in all this. I remember one consultant advising a Pizotifen patient who was coming down off the drug to stop decreasing over an extended Christmas period because of the resultant stress so same probably applies going the other way.

In more of a direct answer to your question lots of people find they reach an upper tolerance level beyond which side effects increase. That goes for any drug. I don’t take Pizotifen myself but I have read the optimum dose is 1.5 daily after which some doctors add in another class of drug and that some GPs won’t prescribe more than 1.5mg. I also know some people are prescribed up to 4mg so that is both possible and obviously safe.

You appear to have had labyrinthitis twice. If that is the case I know several people who after a bout of labyrinthitis (and most only ever get it the once - attacks can be so similar to Vestibular Migraine type attacks as to cause confusion) but they all suffered intermittent and severe vertigo on and off for years afterwards. That is not to say vertigo isn’t also a common symptom with MAV because It is very common indeed. As to Prochlorperazine for vertigo. Medics have rethought that one recently tongue point it has I understand been reclassified as a drug to treat nausea and very good at testing nausea It is too. I am an living proof of that. It saved my life. But great vertigo and dizziness no way. Also It is only supposed to be used short term, 2/3 days not regularly. Long term it can actually cause vertigo and dizziness.

With the current attack I sympathize. I regularly had 8 day attacks and that is hard, very hard however … As your doctor says it’s now a case of waiting it out. Try the Naproxen. Actually if it’s really bad best to hit it really hard with maximum dose suggested. Trick is to minimise rebound headaches is not to do that too often. Neuro should give you maximum times per month allowed. Once the attack has passed maybe you need to look at add in or alternative drug. Once you can again think straight that is. If you stick with Pizotifen get back to the dose you did better at, start a proper migraine diet and take it off there. Theory when increasing any drug is if side effects are too harsh drop back to previous dose at which you were better for a few weeks and then try again later. In your case perhaps when the stress levels have reduced somewhat. Helen

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Maybe but I think it’s possible that the increase was just a bit too fast. Forgive me if I missed it in your post, but how quickly did you move from 1.5mg to 2.5mg? It might be better to try to go to 2mg for a few weeks and then 2.5mg, or even slower. Either way, you are in control, so if you aren’t happy with the increased dose by all means lower it back to a place where you were more comfortable.

Hope you get some relief soon, it is certainly awfully hard to manage the anxiety with this condition.

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Yes, I’ve had it twice. My sister has had it 3 times. The first time I lost my depth perception for weeks but was back at work in a nursery working with kids and I think that forced my brain to compensate out of sheer necessity. I continued to have the odd bout for about a year or so, but nothing like this second time.

This time it clearly came 3 weeks after I had the flu at New Year. It was totally different to my migraine dizziness. With my migraines I stumble around and feel woozy, but never had the spinning sensation or feeling that I was being pulled to the left constantly as I did for about 7-8 weeks. I couldn’t lay down in bed at all during that time either. And I’ve continued to have the odd sense of moving and spinning when laying in bed since or when tired or when a migraine hits, but it has been short bouts often mere seconds in recent months. Until this particular migraine hit. It’s the spinning that terrifies me. I don’t like the rest of it but have learned to cope with it. Not this sadly.

When I first had the labyrinthitis the GP kept prescribing Prochlorperazine for weeks and I think that ultimately delayed my brain compensating. They switched to Cinnarizine because of worries over facial twitches and things developing with long-term use, but after 3 of those tablets the room wouldn’t stop spinning - that one clearly made my vertigo worse! Prochlorperazine takes the edge off for me and until yesterday I had taken maybe half a dozen of them since March, only when I had a bad bout. But yesterday I took the full daily dose to try and stop this current migraine and I did manage to sleep better last night. I’ve only taken one so far today but don’t know if I need another full day’s dose as my head is still rough just not as bad as it was before and I don’t want it to suddenly come crashing down again. I hate trying to work out when to take meds and when not to. It’s all well and good the doctors saying don’t take them more than x amount but when you have symptoms more frequently than that you spend a lot of time worried about whether you should take it or not.

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I went from 1.5mg to 2mg and waited a couple of weeks and then went up to 2.5mg and have been at that dose for 2-3 weeks now. Which was why I wondered if that coincided with the increase in my symptoms. I only took 2mg last night and may well drop back down to 1.5mg after a couple of weeks because I know I was doing okay on that level. I’d been surprised at how well I’d been doing actually as I usually have terrible side effects with most medications and tend to need smaller doses anyway (as an example, during labour they have me a half dose of diamorphine and I was so out of it I slept between contractions right up to giving birth. I dread to think how out of it I’d have been had they given me the full dose!)

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Perhaps you could get in contact with your specialist (through his secretary) for their thoughts on whether to taper down, stick or titrate up. There is often a number to call on your NHS hospital letter, I’ve also found old fashioned letters have prompted a call back.

I take pizotifen (been taking it for 20 months), I’ve just gone up to 4.5mg daily (the maximum dose) today and feel quite strange as I usually do for a few days each time I increase, kind of dizzy, bit nauseous, prickly head. I started at 0.5mg and went up really, really slowly once I got to 1.5mg , each new tablet was added in and stuck on for 6 weeks or longer each time as the dose increased (e.g. stayed on 3.5mg for 3 months) so that I could assess if there was a sustained improvement. This approach was mandated by my specialist. His approach is low and slow and be patient . At 2mg after improving I had a really bad couple of weeks and the worst breakthrough headache I’d had in years, a real screamer, I think it was due to accumlated stress( I’d spent 3 months hardly able to move from bed with MAV and then my son became very ill) and just that the pizotifen wasn’t at a therapeutic dose to dampen down things for ME yet given how irritated my brain stem must have become after all that. You sound like you also have so much to cope with and have had a really bad run with MAV symptoms.

Different people need different doses to be therapeutic.I’m a longstanding case, it started for me too after labrynthitis and I was misdiagnosed for many many years with Menieres, although I had 90% respite for long periods of that .Propanalol also made me faint and swoony but works for so many. I was doing really well on 4mg pizotifen but like you have a housemove due to potential financial ruin brought about by waining self employment and not been able to work due to MAV but no insurance or benefits and a sh*t ton of other problems and family worries to navigate. The chain is starting to collapse after many months and I’m facing doom so I upped my dose today as my symptoms have been flaring up again and although the pizotifen is dampening things it’s just not cutting it against the stress and brain fry of my situation. I also have a second medication I can add on top (2mg candesartan) if need be. I guess one drug isn’t enough sometimes.

I really hope things improve for you, do what you feel you need to in order to copefor now but in the interim get advice from the specialist (IME GP’s aren’t clued up on how to treat MAV) as we aren’t doctors and can only speak from our own experience.

I hear you

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I think you should find it fine to take three a day for a very days maybe even 3/4 days is really necessary. Long term is generally considered every day for several weeks. Taking them would delay compensating rather than stop it ever happening ever again. Doctors do tend to inadvertently issue mixed messages with vestibular suppressants in that they are happy to give out prescriptions for a packet of 28 pills for a while then they tell you. I took mine at a similar fate. Only really picking up a next prescription because the half empty packet I already had was way way out of date because at that stage my attacks severe as they were were infrequent.

When doctors discuss taking abortives for pain relief in acute attacks that is when they ask patients to restrict the number they take usually per month. This is because of the possibility of excess medication causing rebound headaches. Sorry if what I wrote caused confusion.

Snap. It did the same for me which is why I have always wondered whether I would be able to tolerate Cinnazarine because it is an anti-histamine and Pizotifen is half anti-histamine too.