I am only quite new here. I started experiencing VM chronically last month and I’m hoping to get on top of it early. I’m off work and feel this is the best time.
I have been trawling through this wonderful site for information and feel like there are such lovely supportive people here.
I started Propranolol, around 3 weeks ago and unfortunately due to the complete weakness, insomnia and nausea I am currently weaning off. I have now started my second - and please god be my last - drug, sandomigran (pizotifen).
I am positive about this change and hope for the best.
I took my first dose last night 0.5mg and wow - the sedation effects are really intense. I woke up in the morning and landed on the couch, only to wake up again really around 12pm. Then still tired.
I was hoping anyone who has tried this med can enlighten me about how you coped with the side effects, and (please dear lord) did they ease over time. It’s only really the sedation part at this point.
I’m not overly concerned about weight gain. I’m skinny and a few extra kilos would probably do me good. The dry mouth (which I haven’t had yet … but waiting) I could probably deal with too. It’s the … how on earth do you get up in the morning and then do anything, part I would like your help with.
Other threads are quite old and I don’t know whether any of those people are still around. I really hope they have found relief and have gotten themselves far away from here.
I am sticking to this one for a fair trial hopefully.
Hi Belinda. @sputnik2 is your very best bet on this one. She will respond in due course for sure. For a Success Story read @janb’s PD. every person is different but many drugs cause such problems. Migraine brains are sensitive to many things medication included. Two tiny strength Valium and nobody could wake me up for ten hours. You could probably have taken my appendix out and I would have slept through. So you are not alone. Most people find they have to increase very low and very slow. At half the pace of the rest of the World at least. Increase in symptoms/side effects? Will occur at each subsequent dose increase. @janb found that with Pizotifen but same applies to most other drug classes too. Ironically not so much with betablockers. I had no side effects at all with Propranolol but then some people find it exhausts them. I am happily bouncing off the walls on it still.
I have theoretical experience of Pizotifen being told to take it at night so you aren’t so tired next day. Same applies to Amitriptyline and other ADs. Unfortunately most people end up on high doses Pizotifen, 4 mg isn’t unusual to get decent effect and then you have to split the doses through the day
A lot of people have to trial several drugs before they find one best for them. Trial and error is only way forward I am afraid… Hope Pizotifen works for you but do try to be mentally prepared that it might not.
Maybe I wasn’t clear enough in my initial reply to you but having been hit as hard by this as I was I very much doubt you are going to be able to carry on much as normal and ignore the condition, by trying to go to work etc, for some while. It is a long term chronic condition that doesn’t just go away. Ultimately medication should get it under some control and give you a better QOL but it takes time and you have to allow the time to let that happen. The people who reach the best control level are those able to relax and take some time out for example Jan who had a few months off work. Eighteen months on she is off medication and long since back to work but I know she had a very tough time on each increase. Helen
Hi Belindy
I take Pizotifen. I’m on the highest dose of 4.5mg per day (taken in 3 lots) but I built up to that over the course of about 16 months. I have had MAV (misdiagnosed as Menieres) for decades so am a hard case to treat and likely to need longer term treatment and higher doses of meds than most. It may not take nearly so long to treat you
Don’t assume you will get all the common side effects or that a med is causing additional symptoms (or not working) as it just might not be at a high enough dose yet to totally dampen down things. For most people on this site it seems it took at least a few months to get to a therapeutic dose of the right med match for them.
I took Propanalol for 6 months several years ago for chronic migraine headache but like you, struggled on it. Pizotifen has been much kinder to me. My specialist advised sticking at each increase after 1.5 mg for 3 months to assess if it was working for me at the dosage. The first week or so on Pizotifen I was constantly tired but I went with it and rested up. I think my body and brain were worn out with the MAV as well as the effect of the med. You may be very worn out by the insomnia you’ve been suffering, so some extra sleep may not be bad thing if you don’t have other work or caring responsibilities this week.
Taking the 0.5mg at night is the best plan to start with, what time do you take it at? My doctor told me to take it at least three hours before bed but to adjust the time to suit and I ended up taking it at 6pm for the first few week so that I wasn’t too zonked out when trying to get up in the morning After a few days or so the soporific effects started to wear off. Each time I increased my dose I would have a day or two when I felt a more zoned out and dizzy headed but then things settled. I never felt totally zonked out like I did with the first dose again.
As to other side effects, I have put on weight (pizotifen can also be used as an appetite stimulant) but compared to how I have felt on other meds I’m willing to put up with it. I also think as I started to feel better, I have been eating more and also having sweet treats that I couldn’t face when the MAV was bad (I’ve gone up 1 dress size over the two years). I haven’t had a dry mouth. I take a magnesium supplement (500mg per day) which helps with any constipation side effects and also a B2 supplement (as advised by my doc).
Helen has recommended you read Janb’s diary which is great advice, IIRC she found relief at a much lower dose of pizotifen (than me) and made swifter progress. Another poster, Gidablu also took pizotifen successfully and boosted his recovery by adding in Candesartan (which I am considering doing).
Another thought. Do check out @LucyLabrador. Her PD. She’s doing OK now on 4 mg and like you she is a menstrually affected case so that’s more like for like.
Hi Belindy
Pizotifen definitely worked for me - the maximum dose I took was 4 x 0.5mg 3 times per day - 1 in the morning when I got up , 1 mid afternoon 3pm ish and 2 just at around 10/11pm .
It took me 3 weeks to build up to 3 x 0.5mg (as advised by my Neuro-otologist ) and I can remember that I felt the same as you when I first started taking it - very sleepy and sedated. I welcomed being able to sleep as I really needed it. Each time I increased the dose it knocked me for six and all the symptoms seem to be magnified for a bit. My body eventually adjusted to it however, and the sedation effect wore off and even taking 2 at night didn’t help me sleep!
I was lucky that I was diagnosed 3 months after the symptoms first started and also fortunate that I found Dr Surenthiran who is one of the UK experts on VM/MAV/MVBD and Menieres. Dr S told me that many people suffer for a long time before they manage to find him , or another specialist, and a quick diagnoses and early treatment can really help treat it . There is not a quick fix as far as I can tell though - I think Helen @Onandon03 will confirm that, but once you find a med that suits you can start to improve get better.
I had to do my own research about what was going on - this is very common - as my doctors didn’t really know what it was and fortunately a Physio I saw when my GP I thought I had ear crystals (it wasn’t) suggested I needed to see a neurologist and my sister-in-law, who has balance issues, recommended Dr S.
I took Pizotifen for over 2 years and was off work for 6 months - luckily I was eligible for full sick pay - and this gave me the time to recover at my own pace . There is no way that I could have worked - I did try a couple of times, but had to admit defeat and go home . Dr S told me that I needed to rest and not be stressed in order to calm my head down - as well as Pizotifen he put me on his 6 Cs diet.
I put on weight with Pizotifen - I was constantly hungry - but it was worth it and I think the weight is slowly coming off now - not as fast as I hoped it would, but then, now that everything is virtual at work, I am sitting down more than I want to be and not doing the swimming that I was.
I would say that I am 95% normal most of the time - I do still have off days , but I know that it is only temporary and usually getting a good nights sleep and/or taking it easy that day does the trick.
Good luck wit the Pitz and let us know how you get on.
All the best, Jan
@Janb this is an amazing story. I hope to be 95% one day. Hope pizo is the one for me. And I hope I can increase easily like you. Thanks and well done !!!
How are you doing on Pizotifen now?? I’m waiting to see the neuro next month so researching up on different medications and want to give this one a try.
Hi, I’ve been on it now for a couple of months and find it fine. I can manage it. I’m on 1.5mg now, still sleepy in the mornings but nothing like the first day I wrote about.
It definitely helped me. I’m still having eye issues though which is annoying. Not so much photophobia but shaky eyes.
I’ve had one notable migraine around period time since starting. A few days of feeling yuk (last night being one of them after watching a lot of movement on tv).
I felt much better on it after trialing propranolol. Weight gain is slight for me so far, not overly hungry.
Thanks for the reply, that’s really helpful. It does sound like the one with the least side effects and some evidence for use with vestibular migraines. I can so relate to your comment about days of feeling yuk. I feel like it’s so hard to explain to people what it feels like to have migraines that aren’t the classical pounding head, lie down for 2 days. For me it’s almost constant low level yuckness. Spacy, dizzy, headache, nausea, eye issues, with full blown migraines - auras, spinning vertigo, photophobia, phonophobia, extreme nausea, headache inbetween. Sometimes it’s the odd clear day that makes me realise how bad I am normally.
I’m thinking I might just ask my GP to prescribe to get a headstart as can’t get into neurologist for another month. This forum is soooo helpful!
Wow… really well put! That’s how I feel when I’m at my worst!! My Yukiness is fuzzy, eye issues, weird feeling in my head when I tilt it, nausea, odd dizziness. I just wish I can put this all behind me.
My own GP says you will soon know if Pizotifen will work for you. Unlike some preventatives it works quicker. I have read for many within the month. So could well be worth asking your GP if you can try it. I just hope they are prepared to prescribe a sufficiently high dose. I doubt they would allow you more than 1.5mg which is manufacturers recommended without instruction from a specialist Still think positively you might not need any more than that. Many don’t prescribe it because it is notorious for weight gain and being sedating. I rather get the impression it’s considered outdated by many and it’s not in the top three recommended by NHS. Most GPs just follow the guidelines which is fair enough as they are t specialists and that’s why the guidelines exist after all
I got a reply email from my neuro today after asking him about these eye symptoms and whether I should up my dose before I start work next week. He said I can add another tab, so 2mg. I’m starting that tomorrow. One in the morning as the extra. I’ll see how sleepy I am and report back.
