pizotifen

[Brychni]

Has anyone with RA/PsA etc also taken pizotifen for migraines and cluster headache?

My life is quite pointless at the moment and cluster heads are getting worse. My referral to migraine clinic was refused as it was out of my area and my neurologist appointment not for another 8 months, at least. I was prescribed Propranolol a while ago which I only took for 2 days as I was instatnly chilled, and then after reading the leaflet saw that it shouldn't be taken if you have Raynaud's (which I do). The alternative was topiramate which is commonly known as Dopamax for obvious reasons. How that is considered a suitable alternative especially with young kids to look after is beyond me. You're either out of action because of migraines/CH or the drugs. It's pathetic. Apparently most neurologists no longer prescribe these outdated drugs.

So I called the GP in desperation and was given pizotifen - which rang a bell from the mists of time. I think I may have been offered it years ago but was probably breast feeding or pregnant. I made the mistake of looking at the leaflet for best time of day to take it and saw that weight gain was the most prevalent side effect and of course doziness.

I have been reading lots and lots and lots of accounts of taking piz and EVERY SINGLE one of them said they had weight gain even though they ate the same, less and/or started exercising more. It is in fact marketed under a different name as a weight gain drug!!! So how is that going to help with arthritis and joints???

I'm at the end of my tether. I had hoped that perhaps my head problems were related to the RA/PsA and that hydroxy would stop them. I've only taken 2 and already I can feel the drowsiness. I just can't be bothered to do anything and struggled to get out of bed this morning. I feel so sorry for my children especially my daughter, all they see is me being out of it. Being on lockdown has made absolutely no difference to me. I've already lost my social life and all hope of a decent job.

[Summerrain14]

Hi,

I am so sorry to hear of all you are going through. Cluster headaches and migraines can be so debilitating and yours certainly sound like they are.

I take pizotifen for migraines. I take it every day as a preventative tablet and have been on it for many years now around 25 years.

I have had no issues with weight gain from it at all. I am a slender 9 stone currently. It has worked a treat for my migraines and hardly ever get migraines. It has been several years since I have had a bad migraine but if I miss a dose I know about it. I too have Raynards and on meds for that so no issues there either. I have Lupus and RA and take a whole host of other meds like we all do.

We are all so different though aren’t we but really hope it works for you. I take mine at bedtime. I have never been a morning person at the best of times but don’t think it caused any drowsiness for me but it is a very long time since I first started it. Really hoping it works for you and sending gentle hugs in the meantime.

Gail.

[Brychni in reply to Summerrain14]

Thanks for your reply Gail, it's good to hear from others who have taken it. I am due to take the third this evening but I am not sure as I have had the weirdest day today. Feel really drowsy and unenthusiastic and noticeably short tempered.

Spent most of the day on the sofa. Very unlike me. In fact, similar to a migraine/CH but without the pain!

[springcross]

I'm sorry to hear this Brychni. I hope it improves for you very soon. xx