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Topic: Pizotifen/ Beta blockers (Read 4720 times) |
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RachelGreiff
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Pizotifen/ Beta blockers
« on: Jan 28th, 2008, 2:23pm » |
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Hi all,
I am asking this question on behalf of my husband Jamie, who is out at an evening class tonight.
He has been taking 1 pizotifen 1.5mg each day since Friday. Pizotifen has drowsiness and depression listed as side effects (amongst others). The tablets seem to be working well. His attacks have been less frequent and less intense (although it is difficult to be sure whether this is due to medication or the cycle finally beginning to depart). However, he has been very tired, moreso than usual, even for the middle of a cycle and today felt very depressed. He wanted to know whether anyone else had had similar problems with pizotifen?
And to add a question of my own:
On his last visit to the doctor Jamie was told that he would be given beta blockers if pizotifen did not work. This seems strange to me as I have only heard of them as blood pressure medication, but Jamie's blood pressure is normal. Has anyone heard of beta blockers being used to treat CH?
Thank you,
Jamie and Rachel
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Gator
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Re: Pizotifen/ Beta blockers
« Reply #1 on: Jan 28th, 2008, 2:33pm » |
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I don't have any experience with Pizotifen as it is not available in the US.
As to your other question, beta blockers, calcium channel blockers, anti-psychotics, anti-depressants and other classes of medications are often used off label in the treatment of ch with varying degrees of success. We are all different in what works for us. Don't let a drugs primary classification or usage deter him from trying it. You never know what might be his magic bullet.
Good luck!
Mike
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Annette
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Re: Pizotifen/ Beta blockers
« Reply #2 on: Jan 28th, 2008, 3:58pm » |
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Pizotifen in Australia is marketed as Sandomigran. It is a serotonin antagonist acting mainly at the 5-HT1, 5-HT2A and 5HT2C receptors. It also has some weak antihistamine effect.
Its prescribed mainly here as a preventor for migraine. My husband who has episodic CH was given a trial of that during his last cycle but it didnt do anything for him.
Verapamil ( blood pressure med acting via Ca channel blocking ) helped him a lot more though.
As Gator said, many different classes of meds are used off label for CH and some can work very well so dont be afraid to try if needs to. My husband had to try quite a few different ones at different combination to find the ones that worked.
Good luck with it all and painfree wishes to both of you.
Edited to add: my husband didnt get the tiredness and depression with Sandomigran, he got that from CH hits themselves 
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| « Last Edit: Jan 28th, 2008, 3:59pm by Annette » |
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Bob_Johnson
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Re: Pizotifen/ Beta blockers
« Reply #3 on: Jan 28th, 2008, 9:23pm » |
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If you are looking for options:
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
================
Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Bob Johnson
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Linda_Howell
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Re: Pizotifen/ Beta blockers
« Reply #4 on: Jan 28th, 2008, 10:52pm » |
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Has anyone here told you lately that we appreciate you Bob Johnson?
Well, I'm telling you now. You are such an inspir ation to me Bob...I want to grow up to be as knowledgable as you someday.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Beastfodder
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Re: Pizotifen/ Beta blockers
« Reply #5 on: Jan 29th, 2008, 6:08am » |
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Jamie and Rachel,
Pizotifen was an absolute nightmare for me. Prescribed it a few years back and had dire side effects.
Complete lack of energy, foul depression and an insatiable desire for carbohydrates. Couldn't walk past the bread bin without eating a loaf of bread! Seems to be one of the first treatments listed in the BNFL (the GPs prescribing manual) which is a huge shame for sufferers.
I googled Pizotifen a while back and it seems an awful lot of people share the side effects.
If your GPs going down this route suspect O2 might not have had a look in yet. If not can I advise you to look into it.
For us in the UK there's an excellent service now - the surgery just fills out a HOOF (home oxygen order form) and your local supplier such as Air Products then delivers to your home. With a non-rebreather mask and high flow delivery at 15 litres per minute (plenty of info here on it) you've got a first rate abortive with no side effects.
Sumatriptans also work as an abortive again go for the fastest delivery system to give it chance to work, haven't tried the spray just the Melts which dissolve in the mouth. The other option is a self administered injection into a roll of skin on the tummy. Thing is for me O2 means I get through clusters without the triptans which is far preferable since there's a downside of rebounds and not being able to take too many doses in a 24hr period.
Frovatriptan is another I've read/heard good things about since it lasts a little longer in the system and could be useful if a night's sleep is needed but I haven't tried it.
As an episodic the greatest joy I've had was last Autumn - missed the cycle entirely for the first time in 10 years. That was using clusterbusters and again there's an awful lot of posts here on things like RC seeds if that's a route you fancy, there's a website too and some really good helpful people behind it (just like here in fact).
If Jamie's cycle is winding down do for O2 asap and you'll be better off for the next cycle if you've an abortive that's safe and works. Other meds like Verapamil might be handy but would take a while to kick in, again haven't needed to go down that route (yet). Reading posts from sufferers blaming it for turning them from episodic to chronic, prolonging cycles and the blood pressure issues haven't done a great job of selling it to me either.
Very best of luck
Andrew
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RachelGreiff
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Re: Pizotifen/ Beta blockers
« Reply #6 on: Jan 29th, 2008, 2:45pm » |
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Thank you all for your help. We've printed off the update of therapies - there's a lot of options on there that we didn't know about.
You're right Andrew, no one has suggested oxygen, in fact we'd never even heard of it as a treatment until we came on this board. He did have sumatriptan prescribed at the end of his last cycle and continued to use it at the beginning of this one but it wasn't very effective for him. Oxygen seems like a good treatment to discuss with the doc, it seems a lot of people here have found it useful.
I'm sorry you had a bad time with pizotifen, but thank you for sharing your experiences. It's been the first time Jamie's really had any major side effect from meds and I think he's found it really hard, suddenly feeling so much worse out of the blue but not wanting to stop taking the tablets for fear of the clusters worsening. It's really helpful to hear the story of someone who has had similar experiences and gone on to find more suitable medication.
Once again, thank you to you all,
Rachel x
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Beastfodder
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Re: Pizotifen/ Beta blockers
« Reply #7 on: Jan 30th, 2008, 5:19am » |
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Rachel,
Do let us know how you get on with the O2, finger's crossed. The more feedback CH sufferers get from the community at large as to what works, the better treatments will become.
Prescribing hi-flow O2 shouldn't be a problem, if it is your local Primary Care Trust can be really helpful.
Couple of other tips - a can of Red Bull helps some people shake off attacks and it's often handy to have a drink since the O2 can dry the throat a bit.
Longer term tip would be to get as fit as you can. Apart from the general feel good and live longer factor I feel my system is better equipped to handle CH. Since I bit the bullet and took to running three times a week the bugger's not caught me yet!
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RachelGreiff
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Re: Pizotifen/ Beta blockers
« Reply #8 on: Jan 30th, 2008, 5:26am » |
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Thank you. I'll pass that info on to Jamie. Although getting him to exercise... that might be tough! He's one of those annoying eats-what-he-wants-and-never-puts-on-weight types and I don't think he's ever voluntarily excercised! Still... I like a challenge!
Thanks for all your help,
I'll let you know how things go.
Take care,
Rachel x
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RachelGreiff
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Re: Pizotifen/ Beta blockers
« Reply #9 on: Feb 7th, 2008, 12:04pm » |
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Hi everyone,
Just an update:
The pizotifen was making Jamie so depressed he decided that he couldn't continue with it so he went back to the doctor. He came off the tablets for a week so the doctor could be convinced that the depression was a result of his medication, and now he's been prescribed propranolol, a beta blocker. He did suggest oxygen but didn't get anywhere.
So that's the story so far...
I'm not really sure whether it's good news or not. We're both glad that he's come off the pizotifen, because it gave him a really hard time, but the doctor has told him that propranolol can take up to a year and a half to work! A year and a half of clusters before the medication takes effect, or until the doctors are satisfied that they need to try something else!
Luckily Jamie's cycle seems to be almost over, but I've had a look through the suggested treatments on the board so I'll be stocking up on ice packs and red bull. At least we can rely on each other's experience when prescriptions let us down!
Thank you all for your good advice,
Rachel x
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Beastfodder
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Re: Pizotifen/ Beta blockers
« Reply #10 on: Feb 7th, 2008, 6:58pm » |
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Rachel
Glad Jamie's pizotifen nightmare is ending.
Genuinely do query the beta blocker, it's not something I've read as having much impact on CH. It's episodic and you're looking at a year and a half for results and beta blocker prescriptions for how long? On the face of it it's very wrong for lots of reasons.
'Beta blockers are, at times, effective for cluster patients. They are much less effective, in general, than the usual cluster therapies.' is a quote from a website (http://headachedrugs.com/archives/preventivemeds.html)
Unless there's an underlying reason for prescribing it your GP looks like he thinks CH is migraine. It isn't and can't be treated as such. Calcium channel blockers are reckoned to be more effective if you have to go pharmaceutical.
Print out the advice in here about O2 and ask why not - given the excellent HOOF service now available in the UK and that given the perceived wisdom of specialists (the print outs that is) doesn't fit with being prescribed beta blockers. Would a specialist referral help?
Do contact your primary care trust - and they'll help. O2 is the safest treatment and as effective as any abortive. I can't help but say you need to try it, after all if it works then the worry about being on beta blockers would be gone.
Sorry seem to have gone on a bit - but push for this, wasn't something my GP had done before either but at least they humoured me,
All the best, and glad it's winding down a bit
Andrew
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RachelGreiff
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Re: Pizotifen/ Beta blockers
« Reply #11 on: Feb 11th, 2008, 5:11am » |
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Hi Andrew,
I agree that it does seem that the doctor does seem to be treathing the CH as a migraine, everything Jamie has been prescribed so far is used in migraine treatment. 
The doctor did say that if the beta blocker didn't work the next step would be to send Jamie for a consultation with a specialist, although you're right, that could be a while down the line.
I would LOVE Jamie to have the chance to try oxygen after reading comments about it on this site, and after his experience with pizotifen the existance of a natural side-effect-free treatment sounds wonderful. However, he's a little reluctant to rock the boat with the doctor. He doesn't want her to think he's doubting her judgement or going over he head with the primary care trust, which is understandable to some extent. She is the GP who finally diagnosed Jamie so he does have a lot of faith in her.
I think what we're probably going to do is continue to read up about oxygen and more appropriate pharmacutical treatments and when he returns to the doctors hopefully he'll feel he can bring up some of the information he's gathered in discussion with her.
This is all so frustrating. I know it was very naive, but I really thought that once Jamie had a diagnosis the treatments he was prescribed would be specific to CH, and he would find a treatment that was actually effective. It looks like it's going to be a much longer road than I first thought... 
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sandie99
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Re: Pizotifen/ Beta blockers
« Reply #12 on: Feb 11th, 2008, 6:58am » |
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Rachel,
when I was first diganosed back in January 2003, I was so reliefed that my pain had a name that I didn't even think that it might take a while before I'll find a treatment which works.
The neurologist was a headache specialist, one of Finland's best, so naturally I was sure that the first treatment, a painkiller called vermin, will kill my HAs and I'll get to live a PF life. Well, I belonged to to minority who didn't get help from the med for good and I had to start a long road of looking a treatment, which works.
I found mine outside medications - redbull, ice cubes and caffeine tablets for hits and occasionally ginger ale for shadows. I found those thanks to this board.
I wish that one of my neuros or GPs (thanks to moving and studying abroad I've met 4 neuros and 3 GPs) would have told me that it might take a long time to find a treatment, which works. It would have helped a lot along the way.
I am sure that you wil find a treatment, which works for Jamie. Just do not worry if it's not as simple as it should. There are lots of things to try! 
Lots of best wishes for you both & PF days to Jamie,
Sanna
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Beastfodder
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Re: Pizotifen/ Beta blockers
« Reply #13 on: Feb 11th, 2008, 6:26pm » |
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Rachel it does sound frustrating.
Effectively your GP has said 'Let's try a relatively obscure preventive, beta blockers, for 18 months for episodic CH and we skip any abortive for now and see how he goes on.'
I'm sorry that's not good enough. As an episodic when I kept a diary the worst cycle I had, and recorded, lasted over 11 weeks with in total over five days crawling round and up the bathroom floor and walls. Five days of midnight and dawn hits, each running for over two hours, cumulative sleep loss etc, etc...
Whilst it's not a good place to be - neither was it for my wife. O2 along with Red Bull/good strong coffee has stopped just about every headache attack for me as soon as the symptoms manifest themselves - runny nose, tearing, yawning and the sense of a ticking bomb about to go off in your head.
If there's anything this board has it's evidence based advice for effectively dealing with CH (and support). Some key lessons are you have to be pro-active in treating CH, there's a huge natural variation amongst sufferers, what works for some doesn't for others. One constant however is that O2 works really well and is the safest and most effective abortive prescribed at the moment.
The other commonly held view is that some alternative therapies provide a far more effective treatment than conventional pharmaceuticals. Do look at clusterbusters.com and Andrew Sewell's research on the subject, it's worked for many sufferers
Good luck and all the very best
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