Pizotifen symptoms

Hi,

I've been on sanomigran tablets for 16 years now as I was getting really bad visual disturbances and flashing lights constantly, as in every day several times a day. I was desperate to find something that would help. All I can say is that my migraines were really fantastic after that and apart from the odd really nasty migraine, most of the time they were greatly improved. I would say something which I have only just started to notice and I've never related the 2 things before.........but I've been having severe 'dropping' feelings and faint and dizzy turns which are horrendous. I am suffering from chronic fatigue and the doctors can't seem to work out what is wrong but having checked my blood pressure myself regularly, it seems that this drug is probably causing my low BP and feeling exhausted all the time. I'm kind of scared to stop them altogether as I lose feeling in my limbs when I have severe migraines and it feels like I'm having a stroke, but I think getting off these would be really beneficial. I cut them back to one every 2nd day and immediately my dizziness reduced. I think it's each to their own, some things work for some and not for others but it's something to keep in mind.

My 10 year old son has had severe and frequent migraines for 2 years now. he has just come off Topamax as it was causing a migraine every afternoon, his neuro has just changed him to 2 .5mg of Sandomigran a day and since then, 2 weeks now, he is having a severe migraine every morning and is not making it into school. When he has one the meds he has take it away within 2 hours but he is taking these everyday now and I domnot know what to do. Is it normal for the Sandomigran to cause more migraines in the beginning before it takes affect and how long does it take to start working ? help

Sorry to hear that. It's tough enough dealing with migraines when you're an adult. In my case, I was having numbness down my right side, 3D vision daily and the flashing lights, vomiting and headaches every day for 6 months and when I went onto the sanomigran they stopped instantly. I then still got migraines but not as bad as they had been. It sounds like your son is switching from one pill to another and that's just what I'm doing just now. I'm reducing the sanomigran daily and trying amitripyline instead. I know that sometimes just the transition period of changing from one to the other can make the symptoms worse for a spell and then the other drug kicks in and it all settles down. If you're in the least bit worried I would take him back to his GP and discuss it. Might put your mind at rest also. There are definitely certain foods and drinks which bring on my migraines also but I'm sure you've looked into that too. I've just had 2 days of the worst migraine ever and I've narrowed it down to an ice cream I ate. Good luck with everything.

Hi there,

I have been taking Pizitofen now for 4 years. I started off on 2 x 0.5 mg and for the last year I upped my dose to 3 x o.5 mg. They are brilliant tablets if you're a terrible migraine sufferer. I have gained a little weight but have always been a little overweight anyway. My migraines went from every 2 weeks of being in bed and vomiting for 2 days to now once every 4 weeks and always around them time I am due my monthlys so have diagnosed that they are hormonal migraine. I am 44. I also found these tablets to make me zombified if I take them during the day so from very early on I started to take them around 11pm which is usually my bedtime and can honestly say for the last 4 years I have had the best sleep ever. I would definitely not recommend taking these during the day. I wake up on my alarm at 6.15am feeling freshed and ready to go to work. Also my migraines are now not as disabling as they were and I haven't vomited now for a year or so. I do also take a 50mg sumatriptan tablet on the onset of migraine and this reduces the intensity of the migraine helping me to get through my working day. However, I do not recommend taking ibuprofen tablets with these or drinking too much alcohol with these Pizitofen as the side effects are very strange indeed andbi have woke up inbthe night wuth very peculiar reactions that are unexplainable.

At the moment I am weeneing myself off these tablets as I do need to lose a couple of stone and find it hard to diet as the tablets do make you a little more hungry than normal. I am hoping and praying my migraine does kot return with avenegance as I have heard many people say it does but some say not. I hope you find my info helpful and wish you well.

I have been following this forum as I took Pizotifen for 26 years. For the last two years my symptoms were worse and lasted longer. Labyrintitis/migraine symptoms, which were diagnosed as cyclical. I went to see an ENT surgeon in June 2013, he suggested that the Pizotifen may be the cause of the increased attacks. I was worried about coming off it after so long, but tried reducing the dosage to 0.5 mg. No ill effect.In August I went on holiday so thought it would be a good time to try coming off them altogether. I have not had a migraine/labyrinthitis attack since. I keep the Betahistine 16 available in case I do get one, as my attacks were always dizziness with resulting sickness if I moved. The added benefit is that I have not had to diet, nor am I hungry all the time and I have lost over 16 pounds without effort, just smaller portions.

I do not recommend coming off Pizotifen without discussion with your doctor.

Hi Susan, as I commented earlier, I have been taking pizotifen since approx. 1986. I was interested to read your post as I had labyrinthitis very badly a few years ago and I was basically dizzy on and off for 8 months with no real diagnosis. They prescribed me betahistine but I had 3 attacks of not being able to breathe and panicking while I was taking them so I stopped. I have currently got my pizotifen down to one every 10 days but have had a couple of minor dizzy spells in the night - not sure if it is withdrawal symptoms. I feel I may as well give them up totally and see what happens to my migraine. My GP has no interest really. My previous GP said not to give pizotifen up as it is a wonderful drug and also treats IBS. (Hope you stay migraine free!)

Hi all,

Since I commented last, I have come off Pizotifen completely and my dizziness and fainting feelings have totally gone. I was bothered every single day by dizziness and it became really intrusive. My GP doesn't care much either but I decided myself to have a go and see how it went. My migraines were severe with feelings like I'd had a stroke, slurred and confused speech and couldn't function at all. This was regular. The best thing ever so far has been reaching the menopause!! Not good in so many other ways but it has dramatically helped the migraine situation. I think your body tells you what to do and what not. Good luck to everyone!

Hi Gill, I am awaiting the starting of mine and can only hope my migraines cease altogether like my moms did when she reached the menopaus. I have been off the pizitofen a week and feel quite strange if im honest so I'm gonna have 2 tonight and maybe every other night.

Im glad to hear you've improved and wish you all the very best. Thanks for the info too, always nice to hear you're not then only onebin a similar situation

I have been taking pizotifen for around 7 yrs now, as I suffer from hormonal migraines, and will get an attack at the end of my period each month. since taking pizotifen my migraines have reduced dramatically, getting just a sickly mussy head for around 12hrs, which although not pleasent I can at least function, and go to work. but for the last 2 months I have had really bad migraines again. I am 43 and have a feeling this is a change in my hormones due to my age, I take 1.5mg each night and have no side effects, e,g weight gain, dizziness etc. I avoid chocolate and alcohol, a week before I'm due on and several days after I finish, I'm wondering should I ask to have my dose increased????? My mum suffered the same before she had the menopause and like you Caroline I'm hoping when I go thrugh it mine will stop too!!! I live in hope!!!!

I was put on Sandromigran 8 years ago after recurrent migraines. They made me very sleepy so I tried to kkeep to 1 a day, taken at night. I would sleep ten hours if left alone without the alarm going off. During this time my blood pressure (already at the lower end) dropped, I gained weight and would regularly feel overwhelming tiredness. The migraines were less (I no longer got aura problems) and I do think they were hormonal. Six months ago I decided to go off them as I had not had a migraine for a while. I lost 8-9 kilos in five months and everyone was worried about me so I had tests to see what was going on. I was nauseous all the time, had very little appetite and was very dizzy. My blood pressure dropped significantly when I stood and I would have to hang onto something until I adjusted. I am 48 and it was thought I may have been perimenopausal which would explain some of the symptoms. After a stomach cat scan, numerous blood tests, a colonoscopy and gastroscopy I was told I was healthy. I still don't feel healthy though. I get frequent brain zaps, still get hormonal headaches (for a week, the week before my period) and get bouts of overwhelming tiredness. I have trouble concentrating and my vision goes blurry. I am hoping these symptoms pass soon as I work fulltime and am halfway through a six year uni degree. Thanks for everyones posts, nice to know I am not alone in this.

Hi, I was taking Sandomigran for 10 plus years (0.5mg per day - i could not increase the dose as it made me too drowsy to function) and decided to slowly wean myself off as I was still having fairly regularly occurring Migraines that included visual and stomach symptoms. Over a period of a year I slowly cut down the 1/2 a tab in size and frequency till finally in December I was Sandomigran free. For the first 3 - 4 months everything was great, I had less migraines and headaches than I had ever had. Then in March, I woke up with an almighty pain in my head in the front half of my head. My blood pressure and pulse kept spontaneously elevating especially when I was asleep. This intense pain lasted for 2 weeks. Since then, I am left with a permanent Migraine which fluctuates in its severity and my brain (the front half) permanently feels as though it is in a contraction. I also have facial numbness and a sense of cold on my front and back periodically. After many tests (which have all come back clear) I am beginning to think that what is happening is a result of the Sandomigran withdrawal. Has anybody else had these symptoms after stopping Sandomigran and if so, will the symptoms ever go away?

Hi all.

I am new to this site and have been prescribed Sandomigran which is the same as pizotifen for diqequilibrium which the Neurologist thinks is due to Vestibular Migraines.

I have never had this before and have had a lot of tests until they have decided to treat me for this condition.

I am on day 2 of this medication and feel pretty tired. Can someone tell me if the tiredness will go or does it get worse as the weeks go on. I am on 0.5 mg and will be increasing it to 1mg after a week and then 2mg in week 3.

I live in Australia.

Thanks

Hi Eloise - it is worth going through the problems - it took me more than 6 months to get up to 3 tablets (1.5mg) - I have been on this  dose for a few years now  and it really works for me.

Obviously there are differences as I am a man with a very strong constition and I needed the extra pills - if you are slender maybe this is the wrong drug for you

Best wishes and Good luck

Alan

 

hi i have only been put onto pizotifen last week and already i feel awful. i cant seem to get myself together every morning any more since taking them and i havent yet managed to work since starting as they are making me so lethargic. i am consistently tired and sick and i feel like im having a constant battle with my eyes for them to stay open. i have no idea whether to keep taking them or not as when i wasnt taking them i was passing out a lot and im afraid if i stop taking them it will start again. i was given them due to having a constant migraine and low blood pressure with a high heart rate and temperature and im getting tested for a heart condition.