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Topic: Pizotifen (Read 434 times) |
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Dazed and confused
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Has anyone tried Pizotifen 0.5mg? I have been prescribed it (in the form of Sandomigrin tablets) and have only recently heard about it. As I understand it there is no clear evidence that it works on CH although my neuro says it is the first medication that they try with new patients. My previous neuro. was part of a research/treatment team working only with CH and she never mentioned it.
So what do you say? Anybody have any experience of this drug?
Peace
Trev
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pubgirl
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The next person who calls it a migraine eats teeth
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Re: Pizotifen
« Reply #1 on: Jan 4th, 2007, 2:55pm » |
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Hello Trev
I suspect this neuro either doesn't know what they are doing or suspects you may have migraine as Pizotifen is a migraine prevent (anti-histamine) and frankly pretty crap record even for migraine.
It is probably no use at all for CH if you definitely have CH, it will make you tired and fat as it enhances appetite and makes you laze around--- with headaches!
The usual first drug is actually Indomethacin which is used as a diagnostic rule in/out for CH. It works on every one of the shorter-lived unilateral headaches bar one but not usually for CH.
The usual next drug is a triptan of some kind but most people here would advocate 02 and triptans for aborting.
Prevents are a very long story- but pizotifen doesn't get a page!
Wendy
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| « Last Edit: Jan 4th, 2007, 2:56pm by pubgirl » |
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Dazed and confused
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Re: Pizotifen
« Reply #2 on: Jan 4th, 2007, 3:16pm » |
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Thanks for that Wendy! That pretty much confirms what I suspected. I was diagnosed in '96 and was lucky enough to get into a research program with a group working out of Stockholm and London who are researching the cause of CH. They put me on Imigran (triptan) tablets which did nothing. Then I went onto Verap. and Imigran shots which have worked well. The shots now make me feel very ill and the Verap. has some very nasty side-effects. Since leaving Stockholm and getting a new neuro I have been getting worse and frankly I don't think she knows what she's doing. I've asked for o2 but she just doesn't want to know. As you say, Pizotifen is a migraine med. and is not likely to work on what has gone from episodic to chronic CH. I am now in contact with the gang in Stockholm and am hoping for some sensible solutions soon.
Peace
Trev
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Dazed and confused
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Re: Pizotifen
« Reply #3 on: Jan 4th, 2007, 3:19pm » |
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Thanks for that Wendy! That pretty much confirms what I suspected. I was diagnosed in '96 and was lucky enough to get into a research program with a group working out of Stockholm and London who are researching the cause of CH. They put me on Imigran (triptan) tablets which did nothing. Then I went onto Verap. and Imigran shots which have worked well. The shots now make me feel very ill and the Verap. has some very nasty side-effects. Since leaving Stockholm and getting a new neuro I have been getting worse and frankly I don't think she knows what she's doing. I've asked for o2 but she just doesn't want to know. As you say, Pizotifen is a migraine med. and is not likely to work on what has gone from being episodic to chronic CH (that I have CH is not in any doubt). I am now in contact with the gang in Stockholm and am hoping for some sensible solutions soon.
Peace
Trev
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Dazed and confused
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Re: Pizotifen
« Reply #4 on: Jan 4th, 2007, 5:13pm » |
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Checked out Pizotifen on the net. and it is indeed used for CH. I found some info. about it on this site as well. A number of studies have been carried out and Ekbom found that it worked in 60% of cases. I'll give it a try, but the side-effects of weight gain and sedation don't sound too appealing
peace
Trev
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pubgirl
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Re: Pizotifen
« Reply #5 on: Jan 5th, 2007, 11:06am » |
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Good luck with it Trev.
Each of us is different and it may work for you. All I know is that it did diddly squat for me apart from make me tired and fat, and I know of not one single other CH sufferer it has helped, and I have talked to many hundreds.
CH used to be called "histamine headaches" many years ago before they found the link with the hypothalamus as they thought it was a histamine reaction causing it (I think,... but more educated people may put me right on this)
There have been some histamine treatments that have had short term beneficial effects for some sufferers, but taking pizotifen orally was not one of them as it was believed that a histamine reaction in the body CAUSED the problem.
Wendy
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| « Last Edit: Jan 5th, 2007, 11:12am by pubgirl » |
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Dazed and confused
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Re: Pizotifen
« Reply #6 on: Jan 6th, 2007, 2:18am » |
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I think I'll talk to my previous neuro before I start taking the Pizotifen. The last thing I need is to be tired and fat. Thanks a lot for your input; it's opened my eyes. i'll let you know how it goes. I have booked a telephone time to speak to my old neuro on the january 11.
For now I've increased the Verap again having tried to reduce the dose for two days. All the reduction did was bring on a shower of attacks. After 6 Imigran shots I was like a zombie.
Hope you're pain-free Wendy.
Peace
Trev
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