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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> SUFFERD FOR 16 YEARS _ NOW CURED
        
(Message started by: demon_tone on Dec 3^rd, 2007, 3:06am)

Title: SUFFERD FOR 16 YEARS _ NOW CURED
Post by demon_tone on Dec 3^rd, 2007, 3:06am

I suffered from clusters since I was around 20,,, all the usual symptoms,,waking in the middle of the night in agony, crippling attacks 2 - 5 times a day. I had be given all kinds of treatments, anti - inflammatory such as feldene, maxi paracetamol/Ibofren etc, Now I'm cured and haven't had an attack for 3 years, I finally found a doctor that put me onto Sandomigraine and after taking this product for just 3 days the headaches stopped completely.. I continued to take them for another 3 weeks and haven't had another attack since. Apparently you can take up to 9 tablets are day and on and ongoing basis, however I was taking one at bedtime (makes ya drowsy at first). I am in Australia so i don't know if this product is available in other countries or if its called the same thing,, ask ya doc and google it. HOPE THIS HELPS !!!

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by E-Double on Dec 3^rd, 2007, 4:45am

pizotifen = sanomigran = antihistamine

it appears to be used in UK and by other countries but the efficacy is reported to be very low.

glad it worked, stay positive but don't be surprised when they reappear (hope they don't)

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Melissa on Dec 3^rd, 2007, 8:21am

demon-tone,

Were you diagnosed as being chronic? If so, it could be that you've become episodic and you're in remission.

I really, truely hope this is the end for you, but as for myself, I'd never call having pain free years as being "cured". But that's just me.

Good luck to you.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Guiseppi on Dec 3^rd, 2007, 10:35am

So glad to hear you've found something that's working. As the others said, we shy away from the word cure around here as it sets you up for a broken heart. :-[I've been "cured" a half dozen times over the last 30 years and the beast has always found his way back.

I sincerely hope and pray you're one of the lucky ones and he never pays a return visit. Statistically speaking, he probably will. By all means enjoy your pain free time, laugh, dance, drink and party!!!! But be ready for a return visit just in case.

Congrats on finding something that has helped, any pain free time is awesome!

Guiseppi

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Sandy_C on Dec 3^rd, 2007, 1:34pm

I would be the last person here to pick on you, Demon (just ask anyone), but the word "cure" has been used by hundreds of newbies, of whom 99% are snake oil salesmen trying to sell us something. Every once in a while, there is a newbie who truly believes he has found a cure, and we try to treat him or her with respect and courtesy, as this post is intended for you.

I am an episodic clusterhead. My cycles last anywhere from 8 to 16weeks, and I am blessed with up to to years of glorious pain free time between cycles. But, even with two years, I never ever considered myself "cured", because our "beast", has a mind of his/her own and shows up whenever he wants.

If you hang around, you'll find several clusterheads who have experienced much longer pain free time between cycles, yet not one of them would consider themselves "cured", because they know the nature of cluster headaches.

This was your first post. Please stick around with us. Read posts, check all of the buttons to your left, educate yourself on what cluster headaches really are, what preventatives are working for many, what abortives are working for many. But if you have CH, until and you have gone a lifetime without a cluster hit, you are nor "cured".

I'm happy that you have found something that works for you. Everyone here has either found their "magic button" that aborts a cycle, shortens a cycle, or minimizes the hit level, or is searching for that button. This, and I hope it is, is your "magic button". But those same people know they have not yet found the "cure".

Sandy

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Annette on Dec 3^rd, 2007, 4:47pm

Sandomigran is pizotifen malate, a serotonin antagonist. Its approved to be used in Australia as a prophylaxis only for migraines. It has no effect during an acute attack. Its not approved to be prescribed for clusterheadaches. The only med approved here for CH are methysergide and imigran. Sandomigran has not been shown by any clinical study/trial to be effective as a preventive for CH.

If it works for you, its more likely that you had chronic migraines or cluster migraines ( migraines that occur in cluster ) rather than CH.

Never the less, I am very happy to hear that you are now painfree. Hope it continues forever for you.

However, sandomigran is definitely not a cure for clusterheadaches.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by thomas on Dec 3^rd, 2007, 4:56pm

on 12/03/07 at 03:06:34, demon_tone wrote:

waking in the middle of the night in agony,

Yeah, but see this statement makes me think he did/does have clusters. I've not heard of migraines waking some one up.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by George_J on Dec 3^rd, 2007, 5:41pm

I hope that you've managed to banish this thing for good, but "cure" might be stretching it. My last three cycles were three years apart, after years of cycling twice a year.

I'm glad it's less frequent than it used to be, but I don't believe for a minute that the beast has left the building.

Best of luck to you, and best wishes,

George

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Annette on Dec 3^rd, 2007, 5:49pm

Its rare Thomas but it does happen. This is an extract from an article about headaches and sleep.

How are sleep and headache related?

Headache can be a presenting symptom of sleep disorders; conversely, many researchers have found an increrased incidence of sleep disturbance in chronic headache patients. There are various stages of sleep that we go through during the night. The most important stage in relation to headache is probably REM sleep. REM sleep, which occurs 4-6 times during the night, is the dreaming state of sleep. Migraine headaches occur in direct relationship to the number of REM sleep periods that one has during the night. This relationship is even more pronounced with cluster headaches.

Migraine headaches usually occur either during or after REM sleep or in delta sleep which is the deep sleep that we all require in order to feel alert and refreshed the following day. It remains unclear whether the changes in the neurotransmitter or chemical systems in the brain, hormonal influences, or a combination of several different phenomenon are the cause. From experiments in the 1950s it was discovered that people who were REM sleep deprived were more likely to develop some underlying psychiatric or depressive illness with or without headaches. It is suspected that certain chemicals in the brain not only play a role in the mechanism of migraine but also predispose people to awaken from REM sleep with a headache. Since decreased oxygen and transient hypertension are noted to occur with sleep apnea, it has been suggested that these factors can trigger early morning headaches. These headaches are typically located in the frontal areas but can be diffuse, involving the entire head.

This is the link to the whole article

http://www.headache-help.org/Articles/sleep-disorders.htm

The article was written by Dr James Weintraub, D.O. Neurologist and Sleep Disorders Specialist at the Michigan Head*Pain & Neurological Institute.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by thebbz on Dec 3^rd, 2007, 10:13pm

As long as I have a trigen$%%^&al nerve I will never be cured.
So how does this stuff fix my hypothalmagigy? Three years off...Cool.
thebb

Title: Pizotifen
Post by cluster on Dec 4^th, 2007, 4:53am

Quote:

The antiserotonergic drug pizotifen (3 mg/day) has been shown to be effective in cluster headache prophylaxis in a single-blind, placebo-controlled older trial [82]. However, on the basis of a review of seven small studies [83], one must conclude that pizotifen has only a modest effect. Its use is limited by side effects such as tiredness and weight gain.

Source (PDF): http://www.efns.org/files/guideline_49.pdf

SANDOMIGRAN® Data Sheet from NZ:
http://www.medsafe.govt.nz/Profs/Datasheet/s/Sandomigrantab.htm

Pizotifen is also being mentioned for the treatment of CH here:
http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=6582&nbr=4142

See section Maintenance Therapy - "Other agents (considered, but not recommended as routine treatment)".

pf wishes,
Friedrich

edit for spelling

Title: Re: Pizotifen
Post by Pinkfloyd on Dec 4^th, 2007, 7:42pm

on 12/04/07 at 04:53:56, cluster wrote:

Hey demon_tone,
Many people will be prescribed pizotifen at least once in their lifetime of cluster ownership. Seems to me that it's prescribed more often in the UK, Australia, and NZ etc, than in the States. Not sure why that is.
It is, as previously stated, also prescribed quite often for treating migraines.
Alone, it hasn't had much success for clusters but it is often prescribed along with other meds in a cluster cocktail.
It's effects on histamine and it's anticholinergic properties helps explain why it is often prescribed, and a "sometimes effective" ingredient when served as a side dish, with Verapamil and your choice of Triptan.

Bobw
P.S. Hey Friedrich...how're you doing?

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Jonny on Dec 4^th, 2007, 7:47pm

Another cure?.....LMMFAO! ;;D

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by wcork on Dec 5^th, 2007, 5:00am

I would have to say I was ignorant in the use of that cure word myself. After suffering for 10 years one day they just disappeared. It wasn't till after 2 to 3 weeks that I convinced myself I wasn't crazy... I tried to go back and see if I could determine what cured me of the cluster headaches. I come up with Allegra. Was the only change I had made in that time frame of when they just disappeared.

So now 3 year later I am suffering from them worse then I was before. It is pretty sad when I wish I had my old cycle back... the cycle that allowed me to sleep. The cycle where I only went above a K7 maybe once a week. The cycle where I had a life!!! :(

Funny word Cured.....

Wayne

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Guiseppi on Dec 5^th, 2007, 11:22am

A lot of it is our personalities!!! By our nature we have to be optimistic as hell! This cycle will end soon, the remission will be the longest ever, my prevent will keep working, my abortive will kick ass and work EVERY time....I found the cure!!! We're a pathetically hopeful bunch we are! ;;D

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by brewcrew on Dec 5^th, 2007, 12:32pm

I apologize in advance, but I really have to wonder about somebody who makes a post about a cure to this god-forsaken ailment - their one and only post - over 48 hours ago and never comes back to clarify, question, explain, question some more, etc.

Things that make you go "Hmmmmmm...."

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by black on Dec 5^th, 2007, 1:34pm

huh?

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Jill on Dec 5^th, 2007, 2:00pm

I have to agree Brew... makes ya wonder!

I am curious about this treatment as it has been something that has been prescribed here in Sweden.

From what I gather, it is a new treatment (here anyways) for clusters and, from studies, they have good results. The doctor prescribed it as more of a preventative than an abortive. They said to start slow and then go up to taking it three times a day.

Is there any reason that it is not prescribed in the US? Just wondering...

Jill

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Sandy_C on Dec 5^th, 2007, 3:29pm

on 12/05/07 at 12:32:11, brewcrew wrote:

Good question, Brew.

Demon - where are you? If you are truly a CH sufferer, I would think you would want to check back in to the thread you started to see what information you might have gleaned from other sufferers, what support you might have found, what advice you might have gleaned.

Speak up, Demon. I always advocate for the newbie, no matter how stupid his first post may have been. I stuck up for you. Please don't make me look like a dumb a$$ here. Respond.

Sandy

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Charlotte on Dec 5^th, 2007, 3:58pm

Sandy, you do not look like a dumb ass, but the last line of the original post says "hope this helps", to me that means Demon was a one time poster with no intention of coming back.

The information is not wasted. It can help people even if the original poster never comes back.

One time posters have no idea what a responsive, caring group lives here.

Charlotte

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Sandy_C on Dec 5^th, 2007, 5:11pm

Thanks, Charlotte.

I hate when I'm suckered in by a newbie, whose posts are naive or claiming a cure. I initially believe that the poster is in pain, and is either asking for help, or, in this case, promoting his "cure".

But even though I know this might be a one time sucker post, I will give every single newbie the benefit of the doubt until he or she proves me wrong. Then .....start feeding me the crow. I'll eat it.

Sandy

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Guiseppi on Dec 5^th, 2007, 6:58pm

I'm with you Sandy, I could care less if I get taken by a phoney, no skin off'n my overgrown nose. But it'd kill me to accidentally chase away someone from the only place they're ever likely to find help. I will always err on the side of a phoney!!

Guiseppi

Title: Pizotifen
Post by cluster on Dec 6^th, 2007, 5:40am

Quote:

The references 82 and 83 in the European Guideline are:

82. Ekbom K. Prophylactic treatment of cluster headache with a new serotonin antagonist, BC 105 (=Pizotifen). Acta Neurologica Scandinavica 1969; 45: 601–610.

83. Speight TM, Avery GS. Pizotifen (BC-105): a review of its pharmacological properties and its therapeutic efficacy in vascular headaches. Drugs 1972; 3: 159–203.

Has anybody got the full text of these articles?

Quote:

Ekbom (1969) showed in a controlled trial with 28 patients, that 2 to 3 mg pizotifen daily produced excellent or good results in nearly 60 percent. Cyproheptadine, closely related to pizotifen pharmacologically, also has value in this disorder (K. Ekbom, personal communication), but the side effects of weight gain and sedation may be troublesome.
Source: http://www.clusterheadaches.com/about.html#Pizotifen,%20Cyproheptadine

For more information about pizotifen see:

http://www.google.com/search?sourceid=navclient&hl=en&ie=UTF-8&rlz=1T4GFRC_deGB207GB207&q=pizotifen+site:clusterheadaches%2ecom

http://en.wikipedia.org/wiki/Pizotifen

pf wishes,
Friedrich

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Beastfodder on Dec 11^th, 2007, 6:16pm

Really pleased it's good for you.

Pizotifen - I've posted a couple of times about this in the past.

About 5 years back my GP referred to their little drugs book on treating CH and prescribed it for me.

It was remarkable - depression, lack of energy, insatiable desire for carbohydrates were some of many lowlights and no discernible impact on severity or frequency of attack. Deciding the world could do without another bloated zombie on a really bad trip I moved on and away from the drug - worth Googling it since I've seen many other similar criticisms about side effects from users.

In the same way I found out about alternatives and clusterbusters - and have missed my episodic autumn cycle in its entirety for the first time in ten years suffering.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by clusterwife on Dec 13^th, 2007, 7:10pm

I'm with Johnny!!!!!!!!!!

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by brewcrew on Dec 13^th, 2007, 9:21pm

It's now been 10 days, still just one post.

Title: Re: SUFFERD FOR 16 YEARS _ NOW CURED
Post by Guiseppi on Dec 14^th, 2007, 12:26pm

I'm hoping he's embarrassed by his first post and has re registered under a new name! [smiley=huh.gif] Ever hopeful!

Guiseppi