Hi I'm fairly new to this site as well (oct 09) but have learned sooo much over these last few months from here & fellow CH'rs. Also have spent 100's of hours reading and researching for myself over the internet/medical books/talking to others etc - info on all medications...alternatives treatments etc

Once you start looking, you will find there IS ALOT of information/advice/knowledge out there - some very good - some not so - some may work for you - others may not!!!

I think its trial & error - what works for one - may not for another - what work last cycle may not work this - what helped last time, may not this time.

Some choose the medication route others the "alternative" Its down to personal choice & what works for YOU!!

Everybody is different, there is no right or wrong way for us that suffer with CH....only ourselves can find out what works best for us.

Unfortunately, due to the rarity of this disease, you may find yourself teaching whatever doctor you have about the disease. Many sufferers have had to go through several doctors and neurologists to find one that is knowledgeable and that will work with them in their treatment.

Knowledge is power and you are your own best advocate in your medical treatment. READ, READ, READ all you can and then go read some more!!!!!

I was mis-diagnosed for nearly 25yrs

In Jan 09 it changed from ECH to CCH and since then i havent gone more than 10days PF - its a long story like so many on here but what matters is NOW and that the whole  quality of my life is back to being good (mostly) i handle "IT" when its with me - forget about "IT" and get on with my life when its not!!!

My night time attacks were always the worst - Kip10's, i had 11 months of this before finding this site...help me far more than any GP...even found out the best Neuro to ask for in my area (Nottingham,UK) A Neuro who actually knows alot about CH.

I take Melatonin 12mg - 20/30mins before i go to bed - i started off taking 3mg and over so many months noted any difference and increased accordingly.

For the last 8wks now i have taken 12mg and i havent had a night time attack since

I go to bed around midnight - get up 6.15am - I still wake up 2/3 times but cant get back to sleep and usually PF but at times with a lower kip

I dont get any after effects from it and can go about my day (though may still have lower kips during the day but manageable most of the time)

Its been a long haul getting to where i am now.

I did try some of the meds out there that are prescribed to help treat CH but for me they didnt help but i know for MANY they do help/relieve so its a option I wouldnt rule out for yourself.

Below is what I now take for CH

O2 - (abortive) i use the O2ptimask   
O2 helps me immensely - shifts the lower kips and all but twice its aborted/relieved higher kip of 7 and above) Again i have only had this for the past 8wks - was a struggle to get prescribed but once the Neuro confirmed i had CH it was sorted within 2days

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Melatonin 12mg - (preventative)
once daily/20 min before bedtime  - again for me this has been my biggest relieve...the nightly kip10' - know i wouldnt be here now if i was still suffering like that, there is only so much a human soul can bear. i have found the make below as worked best for me  Relatively inexpensive, so worth a try, minimal (if any side effects)s Works for some but not for others...   

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Kudz 500mg (preventive)  twice daily

Magnesium 250mg (preventive) once daily

Cetirizine (preventative) once daily

Taurine/caffeine drinks (abortive) red bull or the likes, i use a cheap version of this, as long as it as the 1000mg taurine in


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I also use a ice pack on my CH side (Left)  i tried warm, couldnt stand it but ice helps...

Imigran injections - (abortive) my last resort, when i am desperate and all else has failed. Have only had these on prescription since May this year and have used them now on many occasions. Works most the time....dont like the side effects at all but i now use the "extended" method give it 10/15min (most the time does completely abort) if not then i inject the other 3mg.....on two occasions so far the injections/o2/taurine ....blah blah blah DIDNT work....i do admit i was devastated but it did lesson the severity of the attack to a 7/8 for which i am grateful....41hours without sleep that time - i blame myself for that attack because i "nodded off" 6pm one evening ( I KNOW by now NEVER to nod off/cat nap because IF i do a kip 10 gets me) i paid dearly for that LOL LOL LOL!!!

I laugh because i have too 

I have added a few sites for you to look at if you get chance...there is many more out there...info repeats its self abit but you can get some different insights - gain some good knowledge....



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Picture added is my new "best friend" O2 fitted with the non-re-breather O2optimask

Here is few more for you to look at ;

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Below is what i use + Imigran injections

Long term steroid use

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Frova (not Prova) is an abortive.  However, it does have a much longer half life than the other triptans.  I *think* that some do use triptans as an abortive and I'm sure that someone will come along and answer your question.

Do you or have you used O2?

Hi lib,

I've had CH for 30 years and go real aggressive fighting back with abortives and preventatives -  to the point of not having had to experience even a single full length, full blow attack for the duration of a couple of my more recent episodes (that'd be about 5 months worth).

So now that I've touted my credentials  , I'd like to address some of your questions:

Prednisone, the commonly used steroid for CH, is incredibly dangerous, as in permanent, severe side effects, when used with sustained high doses. So much so that few doctors would even prescribe it that way. Of course we clusterheads can become very desperate and decide to ignore a prescription's dosages, but that is a huge mistake.

Imitrex. Some have reported that taking the pill form before bed when they expect to be awakened in an hour or so with an attack can actually work. Injectible is the fool proof form of imitrex though, and the side effects, cost, etc. are minimizied when you follow this critical imitrex tip:
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I use O2 as a first line abortive, but keep imitrex injections on hand in case the O2 doesn't work. The imitrex is more powerful, and for me makes a good back up.

So we're talking about all these toxic drugs here. Imagine a bizarre and thoroughly twisted world where everyone is running around pumping themselves full of dangerous drugs for a serious condition, when there there's a common non toxic mushroom growing wild out in nature, that when eaten, could be such a powerful CH fighter that some people even find that it will knock out an entire episode. But this mushroom is illegal.

Well that's our world. Things are starting to un-twist a little though, because Psilocybin in sub hallucinogenic doses has been turning around some of the most severe cases of CH ever known, and Harvard Medical et al are even starting serious research trials with it, with Newsweek, national Geographic, etc. doing favorable reports.

More info about it can be found at clusterbusters.com and their forum, and here's a video talk on the subject:
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lib wrote on Jul 11^th, 2010 at 7:46pm:


good on you!  Hope you get some relief soon.

Kate

Thanks Kate and bejeeber,
Now a question for all....can I take the melatonin with my other meds? I am taking Depakote 1000mg, prednisone 10mg (just came off the 60mg dose pack), and maxalt 10mg. Would like to try the melatonin tonight and maybe a cup of coffee. Anyone have a recipe for Kudzu tea? What are RC seeds and what do they do? Will take your advice bejeeber and check out the whole food store in Memphis. Just wanted to hurry up and get everything done today; I want my arsenal ready and I plan to win this battle as well as the war! lib

Hii Lib,

RC seeds are "Rivea Corymbosa". If I still have my facts straight, they are flower seeds that contain a little bit of the same LSA ingredient that is in Psilocybin which is known to be a CH fighter.

Psilocybin certainly is a more powerful medicinal plant, but RC is legal to mail order and possess.

More info can be found at clusterbusters.com and it's forum, plus there are plenty of members here knowledgeable about it, and some informative responses to a topic devoted to RC would likely be forthcoming in the "Medications, treatments" forum on this site.

Hi lib:

I'm glad to meet you but sorry it has to be because of this horror.

Sometimes my sleeping in a recliner would prevent one of my overnight attacks. At least it's non-invasive and the price is right.

Charlie

Hello All,
Last night I took my Depakote and a Melatonin and I just woke up (10 glorious PF hours)!! Okay, so I missed work but I SLEPT for the first time without a hit since May!  I am so excited and am hoping it is not just a coincidence. Will try again tonight and see what happens... thanks for your prayers!  e

What lance just said. 

Plus YAY! for an actual nights sleep sans beast. 

My CH started in my late teens, now in early 40's.  The only year I've not had cycles was when I was pregnant so perhaps hormones do play a part?  I read on another thread about low testosterone levels being a factor - but honestly always thought that my levels were slightly high?  Never had them tested to confirm this - was going to once but the test cost over $200, not something I can afford.

Pleased to hear your getting some relief! 

Kate

Hi Lib,

Please do yourself a favor per bejeeber and check out Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and threads pertaining to RC seeds. Easy and cheap to obtain and you do not have to walk around any cow pastures. Two threads you may find helpful are "RC Seeds my story" by Agent Orange, also "and so my experiment begins" by yours truly. By the way I did use 50mg imitrex pills as a preventative however my cycles started extending from  few months to longer than a year with a switch of sides 8 months in. Good luck, I hope you get many pain free nights of sleep.

David