Author |
Topic: Pizotifen (Read 922 times) |
|
Blackrosa
New Board Newbie
I love YaBB 1G - SP1!
Gender: 
Posts: 9
|
Im a newly clusterhead and the doctor has put me on a preventor called Pizotifen..I have to take on at night..to prevent the attacks. I dont really know if they work i have only taken two..but i still woke up screaming with pain...
|
|
 IP Logged |
*-*Being who i want to be*-*
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender: 
Posts: 1796
|
 |
Re: Pizotifen
« Reply #1 on: Jun 15th, 2005, 8:21am » |
 Quote  Modify
|
Since the med is not available in the U.S. there is no experience to offer you.
First question to ask your doc: How long does it take to come effective?
|
|
IP Logged |
Bob Johnson
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: Pizotifen
« Reply #2 on: Jun 15th, 2005, 8:32am » |
Quote Modify
|
Pizotifen ? I looked for it in the webMD site and can't find it listed. Is that the correct spelling? With that 'fen' on the end it looks like it'll turn out to be a pain killer.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: Pizotifen
« Reply #3 on: Jun 15th, 2005, 9:19am » |
Quote Modify
|
Read up!
oh, and welcome...
look around and ask questions...
there are much better things to try than that.
|
|
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
Ueli
Guest
|
Pizotifen (trade name: Sanomigran) is an anti-histamine agent that also blocks serotonin ( 5HT ) receptors.
It is used to prevent meegraines.
It also enhances appetite and is therefore indicated to treat anorexia.
For some unknown reason, in the UK pizotifen is included in the list of cluster preventatives. But we have yet to hear from someone that it helped. (Maybe the people at OUCH(UK) know about success stories.)
But the preventatives of first choice are still calcium cannel blockers, like verapamil. I would bug the doctor about that.
PFNADs, Ueli 
BTW, the best place to search for something is still Google 
Google brings up more than 50,000 hits on "pizotifen".
One link from there: http://www.netdoctor.co.uk/medicines/100002344.html
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
Gender:
Posts: 11720
|
|
Re: Pizotifen
« Reply #5 on: Jun 15th, 2005, 11:34am » |
Quote Modify
|
Hi Sarah,
Pizotifen USED to be used to treat clusters when there was nothing else. Its a very old medicine and as I got told on Sunday by Professor Goadsby who is the UK's leading neuro for CH.. its useless.
I just had it prescribed for my 3 yr old and PG told me to wouldn't do any good at all.
To give you some sort of an idea, the most common preventative is verapamil, alot of people use imigran injections or nasal sprays to abort each individual hit (or other triptans) NOT the tablets, they are absolutely useless for CH.. to give you some sort of an idea the only licensed treatment for CH in the UK is imigran injections (called imitrex on this site in case this confuses anyone!) Its also referred to as sumatriptan.
Alot of people including me find Oxygen to be an excellent abortive. I breath it personally at 15LPM using a non re breather mask. Look on the OUCH UK site under CD Oxygen for cylinders with inbuilt regulators which are the easiest way to trial O2. You definitely need a non rebreather mask though and for some benighted reason they aren't available on the NHS! You can order them from Boots though and they are £3-4 each, you can buy them slightly cheaper through OUCH Uk too and you can also borrow a regulator from them if the O2 is successful! (New O2 laws coming in here.. also see ouch uk for details! I'm sorry to keep telling you the same thing!)
OUCH UK also have a helpline which you can ring and leave a message and someone will call you back. The help, advice and support you will get there is beyond explanation I have to say and I know, I've had way more than my fair share lately!
I hope this helps a bit, if I'm rambling too much please please please feel free to ask questions okay?
Regards
Helen
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Blackrosa
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 9
|
|
Re: Pizotifen
« Reply #6 on: Jun 15th, 2005, 6:32pm » |
Quote Modify
|
ive only been on it for a few days...But the attcks are still as strong and the painkillers tramadol aint touching the pain..I stil wanna head butt the wall to makeit stop
|
|
IP Logged |
*-*Being who i want to be*-*
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Pizotifen
« Reply #7 on: Jun 15th, 2005, 7:53pm » |
Quote Modify
|
From experience, pain killers are relatively useless against CH.
Most meds. take time to build up sufficient levels in the bloodstream to act as preventatives. If you look around the site you will also find many abortive treatments to discuss with your neurologist as well as some good alternative medications.
Most everyone seems somewhat different in what they respond to and the proper dosages. It may take some work with your neurologist to find the right combinations/dosages that work for you.
Good luck on this journey. You have joined an elite group that is just starting to get more attention from the medical community.
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Pizotifen
« Reply #8 on: Jun 16th, 2005, 7:40am » |
Quote Modify
|
BUMPing this up to make sure Black Rosa sees it!
Hey Sarah, how are you doing today? I've been worrying over you and I want to make sure you get proper meds and support. Give the UK helpine a call on 0161 272 1702 because they will help you with the advice you need.
Take care, please let us know how you are getting on too okay?
love
Helen
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Blackrosa
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 9
|
|
Re: Pizotifen
« Reply #9 on: Jun 16th, 2005, 5:29pm » |
Quote Modify
|
thanks... the headaches were bad last night and head some in work...but im really sleepy dont know if its a good thing
|
|
IP Logged |
*-*Being who i want to be*-*
|
|
|
pubgirl
Guest
|
Blackrosa
As Helen says, Pizotifen is a very outdated treatment but is still prescribed by some GP's here who know diddlysquat about CH and persist in thinking it is/treating it as some kind of migraine.
Pizotifen can work for migraine prevention but I have never heard of one single Ch'er that it helped. When I first developed CH my GP was clueless too and gave me Pizotifen and powerful opiate painkillers, both were completely effing useless and I just felt drugged and stupid and STILL had the headaches. Pizotifen just made me hungry and very sleepy, like you and helped nothing so I stopped taking it. I now have high flow rate 02 and Imigran (shall be switching to Zomig nasal next cycle though) and can abort all attacks in less than 10 minutes. As an episodic I don't take prevents though.
Refer your GP to their own prescribing Bible, the BNF (British National Formulary), they all have one on their shelves. the latest edition itemises the right abortives and prevents for CH. Unsurprisingly Pizotifen isn't there!
Professor Goadsby was responsible for ensuring the entry for CH was included and correct, and few GP's would ever argue with the BNF!
Also as Helen says, get in touch with us at OUCH UK and we will help you get the right treatments and educate your GP
Wendy
|
| « Last Edit: Jun 16th, 2005, 8:01pm by pubgirl » |
IP Logged |
|
|
|
Blackrosa
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 9
|
|
Re: Pizotifen
« Reply #11 on: Jun 17th, 2005, 8:18am » |
Quote Modify
|
ye i intend to...i am more hungry than i have ever been. and sleeping alot more..but the attacks are still aspainful as ever...my last one lasted 40 mins of pure agony.. i got a doctors appointment in two weeks time...i just hope it flies by fast..
|
|
IP Logged |
*-*Being who i want to be*-*
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss