Pizotifen symptoms

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Hi there,

I thought I would ask advice from people here in the hope of finding out a little more about pizotifen.

I was prescribed pizotifen about three weeks ago, as a preventative for migraines. My migraines are not 'classic' and therefore I've tried a lot of different medicines. I was on propanalol until three weeks ago. I was fine on them for a while, but I gradually became immune to the effects.

With Pizotifen, I was told to take one tablet at night, and if I didn't see a difference after 2 weeks, to take 2. I have done this, and I take the two tablets (totalling 3mg), each day at 5pm. I find that I need to take it earlier to avoid the drowsiness. I'm just finding it hard to adjust to taking 2, as it leaves me incapable of thinking straight, and I can't find the motivation to do anything. I work two jobs, so when I get a night off, I'm inclined to veg on the sofa because I'm so worn out.

It's not like me to be in a daze, and I'm putting on weight because of the drug (although I'm strictly sticking to WeightWatchers too!), and am feeling bloated too.

My doctor said to try out the tablets for six weeks, and then to review it. Bu with three weeks to go, I'm just wondering whether it does get easier, or whether to book an appointment sooner to get it all sorted out. At the end of the day, all I need is something that works, but I don't want to sacrifice my lifestyle for it.

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  • Posted

    I have been on 1.5 mg Pizotifen for nearly 8 weeks now and my migraines have still occurred as intense as ever and I have had to still use my original tablets to get rid of them. My Doctor did say I could increase the dose but with the side effects I have had on the lower dose I am reluctent to do that so am going back to him to ask him to put me back on sumatriptan which I used to take at the first sign of a migrain and which worked a treat.
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  • Posted

    I've now been taking pizotifen for a few months. I still have the awful lethargy I mentioned in the first post here. To cut the long story short, it feels like my world has crumbled around me. I've had to quit my second job, and hoped this would help me focus on the primary one, but I haven't felt any increase in my energy. I'm taking vitamins to boost my energy, but even this has no effect.

    When I had migraine attacks before, they would last anything from a couple of hours to a couple of days. Now the typical attack will lastup to 6 days! I'm taking lots of time off work, since I just can't function with the migranies I get. My migraines used to be simply awful headaches. I now have constant nausea, aversion to light and dizziness. The pain used to be around the eyebrows, but recently it's all around my head, including a lot of pressure on the back of my head.

    My doctor is keen that I continue taking these tablets, and reminds me that they're limiting the frequency of my attacks, but they're just more painful now instead. I'm losing my patience with them, and getting sick of it. I have cut all of my social life because I can't handle the lethargy. He's the only doctor who's taken me seriously, since my migraines aren't classic, but even HE isn't helping me anymore

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  • Posted

    ...and in regards to the weight gain; I've put on three stone since starting taking Pizotifen. This is both bad for my health, and unsightly. I have stretchmarks all over my belly, which means that where I used to have a bikini body, I've lost it, all for the sake of this medication. It's just the last thing in a long line of negatives about Pizotifen.
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  • Posted

    Well why do you keep taking them then? There has to be other stuff to try and if the results are that bad then the symptoms are contraindicative and your doctor should tell you to stop taking them. I find Immigran help even though they knock me out. You must have got into some sort of weird state of mind to be so passive and keep taking the stuff. You can probably even get stuff from America or see a doctor who can prescribe something privately that isn't NHS approved yet. some times the NHS don't approve stuff because the demand would be too great.
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  • Posted

    Hi,

    Even though this is an old thread, I thought I would add to it as there doesn't seem to be a heap of info out there.

    My medical complaint is prolonged aura with out infraction. So basically, migraine in nature - but not a migraine at all! I have never had a headache associated with it.

    I was put on 5mg of pizotifen / sandiomigran and within two weeks I had the most wonderful results. I went undiagnosed for approx 7 years with no relief from symptoms. So the immediate response, on such a low dose was reason to celebrate!

    Although in the Australian packaging (a bottle) there is no product info. So I was never really aware of the side effects. For me, there were:

    Substantial weight gain and extreme fatigue. Even with 12 or more hours sleep, I would wake up exhausted. Although, being fat and tried were a small price to pay in order to be able to work, function and have a semi normal social life again!

    Now that we wish to start a family, I have just weened off. I have been off the meds for 2 weeks. The withdrawal symptoms - are simply not good. I haven't been able to find any substantial information regarding withdrawal with is quite a concern. Even the manufactures website / product info does not list any withdrawal symptoms.

    I have also weened off Cipramil (SSRI) at the same time. I have been on and off Cipramil many times over the years and I have never had a problem getting off it. So I can only assume its the pizotifen that is causing the problem.

    I am getting 'brain zaps' daily, I am highly emotional, spaced out, distressed, confused and feel very very .... not normal. Its really distressing to say the least.

    I hope this post serves as useful to some out there. Please consider withdrawal with the support of your Dr.

    I have read that Pizotifen is chemically addictive, advised by a product user. I was never aware or advised this upon starting it.

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  • Posted

    I want to begin by saying that I am no medical professional of any degree. All that I know of this product came from an information sheet (given to doctors and nurses).

    Following this I want to apologize if any of this information is already available here. I just thought that people should know of the effects of this product and seeing as how I had the information readily available to me I thought I should share.

    When I was first given Pizotifen by my doctor, I thought to myself, wonderful I now have something that can prevent my migraines which I have almost everyday.

    My Girlfriend of the times mother works at a hospital and printed me out the full MIMS Abbreviated Prescribing Information sheet. From this I saw just how bad this product can be for you.

    The adverse reactions listed on the sheet that can be caused by it include; Impaired alertness, sedation, fatigue, appetite stimulation, weight gain, dizziness, dry mouth, nausea, constipation, nervousness (children), oedema, headaches, hypo tension, rashes, muscle pain, paraesthesiae, impotence, hallucinations, fits and others.

    The most common of these reactions are said to be the appetite stimulation, the weight gain, and sedation. Following this is a breakdown of the probability of the other reactions occurring.

    Most of this information can also be found by typing SANDOMIGRAN® PI into google and clicking on 'quick view' on the first result.

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  • Posted

    I started on Pizotifen approx 3 mths ago, I took 0.5mg for a week and then 1mg. I felt like a zombie to start with then the side affects subsided, I have put on a few pounds but nothing exterme. I still get my migraine but instead of it being 3-6 days they only lasted 2 days but feel much different (but not in a good way). My doctor increased the amount to 1.5mg and this is when the trouble started sad

    I started to hear and smell things that weren't there. I went back to the doctor and she has decreased the amount back to 1mg, I am now trying to wean myself off but I feel worse now as can't sleep probably and I feel tired throughout the day. I am persevering with 1mg but I got to say it is hard as the tireness is driving me crazy and I'm finding small things such an effort. I'm also getting mood swings sad

    I have suffered with migraines since I was 11 yrs old and have tried lots of different things, I take Naramig when I get one and this does work but it would be nice if I didn't have them. The doctor has said if Pizotifen does not work then they might try sodium valproate which I am not keen to take, has anyone tried this?

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    • Posted

      I've been on Sodium Valproate for 8 months for migraine. I was really nervous to start because of the listed side effects. As it happens I did not experience any side effect, which is unusual for me. I have been able to go up to the max dose and down again as I search for the best result. This drug has not helped the occurance or pain of a migraine at all, but seems to have reduced an associated condition of confusion or disorientation. I say this because as I was gradually reducing the dose to wean off the Valproate, I started experiencing increased confusion when migraine occured. I am not absolutely sure if this is a new situation or a return of an old one, but I suspect the latter. Either way, I am currently taking 800mg daily in two doses and sorry I ever got involved with Sodium Valproate because now I'm stuck on it and still crippled by migraine.
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  • Posted

    I have taken them before for a few weeks but they didnt stop the migraines and makes me feel lethargic and lack of motivation. Ive been put on blood presure tablets Iberstan which has successfully kept my BP down to a normal rate. Since that has been sorted out they've worked on finding migraines tablets and have slowly worked my way back to trying Pizotifen. However this time they have kept migraines away which is good. The bad is that i am once again lethargic and without motiviation. This is not good for me because tiredness is one of my migraine triggers, it causes me to me over emotional and since im at college i have no social life anymore and because my course involves walking to lots of fields and very hands on, i find it difficult to keep up with others. Im starting to lose interest in college and lacking the will and energy to go in. I miss propanalol because it cured my blood pressure AND my migraines and it was simply one pill a day, easy! Only because im 16 its not a suitable long term solution. sad
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  • Posted

    :?: O dear I have just started Sandomigran as a new battle in my 20 year + battle with migraine.

    Already I can report like it seams to make attacks worse in dtead of preventing them. I am only in week 2 and sre using 3 tablets a day and it only takes away what little patience I have during a miraine attack.

    Cocktail of Aterax, Cafergot, Motilium and 2 Tramal has a 25% sucess rate in stopping attacks

    Intravenous injection of Pethadone stops attack 99% of the time but make SURE you use a careful doctor the stuf can be higly addictive

    Good luck to all long term sufferers

    Okkie

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  • Posted

    I have had migraine (cluster and other) for about 5 years- I am over 60 years old. So I was surprised to get migraine after a very healthy life.

    Many drugs were prescribed and all failed to help me except Pizotifen.

    I take 3-4 .5mg tablets at night as 1-2 did not work at all - I stepped up to 3 per night after a few weeks as Pizotifen has an accumulation effect............ After stepping up to 3 per night the attacks became less and only finally stopped after stepping up to 4 per night. (normal dose in USA).

    I checked with my UK GP about exceeding the dosage on the packet and he said that more than 3 per night was OK by him - exact words were ' I do not care how many you take as long it is over a long period and consistent (ie effective)).

    So good luck to those of you switching - I hope you are as lucky as me

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  • Posted

    I was this medication at 0.5 for the first two weeks. Then told 1.5. But the side effects were horrible. So the specialist said cut in half. I did that but there still to strong causing funny feelings in my arms fingers and legs. I came off these but the side effects are bad... Arm pain and a pain under the arm pit... Hasaanyone had this issue
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  • Posted

    I have been taking Pizotifen since a car accident in 1983 when I started having cluster headaches. I have found that I have had to watch my weight, but once it had settled at about one stone more than I was used to, it did not vary much. I had no other adverse reactions to it, which was fortunate as I cannot take hypertensive drugs. I currently take 1.5mg every night, and have tried to reduce but after 30 years I am worried that the headaches would increase in frequency. Does anyone have hypotension, drop in blood pressure, with Pizotifen?
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  • Posted

    I have been taking Pizotifen 0.5mg since 1986. It revolutionised my life and severely reduced my migraine/cyclical vomiting syndrome. True it makes me starving hungry but by exercising will power I only put on a stone over the 25 years I have been taking it. Some years I can cut it right down to one tablet a month but recently I have been taking more. I have always had low blood pressure and have been known to faint. Recently I have noticed a link between me feeling faint or actually fainting and pizotifen. The times I have fainted have always been the day after I have taken a pizotifen. There is a complete lack of info re pizotifen around though and I am worried abuot the long term side effects. Does anyone know the long term side effects? Susan above is the only other person I have ever heard of who has been taking the drug since the 80s.
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  • Posted

    Hi there, ive been on these tabs for roughly a year now. Ive to take 2x 0.5mg.

    At first I was tired all the time and my appetite increased alot however I noticed after a month or so of

    starting These my bad migraines decreased and stopped altogether! I then forgot to get more and after 2

    Days of not taking them I took a migrane. I guess what im trying to say is that it takes a while to get used to them but in the long run they are totally worth it, plus I take them at 8 every night so that if I get sleepy

    then I can go to bed just. my doctor advised to take them the same time every nite.

    I hope this helps u in some way!

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