Hi to everyone.........
Im new to the site,thought i would say hi to everyone.
I have suffered chronic cluster headache for over 2 years now and have only had 12 days break during that 2 years.Dr says im one of the worst cases ever known.I thought i would join the site as i am now at the stage where i dont know how much more i can take.I get next to no sleep at night as i am having 4 maybe 5 attacks during the night.I have oxygen but even that seems to be taking its time to work these days.I would love to chat to someone like myself and talk about ways to try to make this easier,i feel really down at the moment and dont know what else to do.......any advise on getting myself back up.........

Welcome to the board, sorry you're getting slammed, those periods really suck. :'( When you get a chance, tell us what you are using for preventative meds, what you're using for abortives besides the oxygen, let us know HOW you're using the oxygen as using it correctly can make all of the difference in the world.

Maybe we can suggest some changes you can take back to your doctor to discuss. Everyone here understands, welcome home. :)

Joe

Welcome home Sophia.  What Guiseppi said  ;)

You aren't alone any more.  Please let us know more about what you are doing/using and lets see if some of the experience around here can help you get to a better place.

-Dennis-

Sofia....PLEASE stay with this message board, asking questions and researching topics.

There is some critical info and advice here that you are not likely to get from any doctor.

First of all, are you using the newer, much more effective, hi liter flow, non rebreather mask method of administering the O2 a la the oxygen info link on the left of this page?

Second, you are in dire need of a really effective preventative, right? I'm just hoping you might find some sort of breakthrough with the treatment that shows real promise, one that a prominent medical researcher is launching a study of at Harvard (concurrent with serious research in Europe), and that some folks who can't wait around are seeking out for relief right now.

It involves medicinal plants that can be hallucinogenic at high doses, but sub hallucinogenic doses are only necessary for CH treatment.

Here is a recent thread on the subject that occurred here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGEl [Edit: nevermind trying to link to a specific thread on this forum. That's a basic capability of many forums that really should be available here also IMO.]

If you can in fact be open to taking a small amount of nature's plant life with little to no side effects, as opposed to synthetic drugs with their well known dangers, you'd be well advised to go on the message board at clustrebusters.com and start sounding them out about it.

Does it seem like I'm pushing this stuff? Sorry, please keep in mind that the person talking to you here wouldn't touch a recreational drug with a 10 foot pole, and that I routinely bring up conventional treatments like imitrex etc. for episodic sufferers. Your severe case just seems to scream out for cutting thru the BS and getting right to what will work for you despite any stigma many of us (including me at first) have attached to it in this twisted world where a simple plant based treatment, possibly more effective than anything else, can be dismissed outright as crazy, loony etc.

Guiseppi wrote on Feb 21^st, 2010 at 11:26am:

Welcome to the board, sorry you're getting slammed, those periods really suck. :'( When you get a chance, tell us what you are using for preventative meds, what you're using for abortives besides the oxygen, let us know HOW you're using the oxygen as using it correctly can make all of the difference in the world. Maybe we can suggest some changes you can take back to your doctor to discuss. Everyone here understands, welcome home. :) Joe

I tried lithium but had terrible side effects so he took me off it,i then tried verapamil and im still on that 800mg per day but i dont feel its doing me any good.I started on a new tablet called topimax 2 weeks ago,but being honest im not feeling any better.Im really not doing to good at all at the moment.Im getting no sleep and the oxygen seems to be taking a long time to work,i have been told i need to buy a special regulator so i will be doing that soon.I am at my lowest i think at the moment,i just cant deal with this pain any longer............. :'( :'( :'(

Woops - sorry, realizing now that specific threads such as the one I tried to link to above can't be linked to on this forum.

I'll paste an excerpt from that thread about another extremely severe chronic case here:

"IT WORKS!! At least for him it does. It's going to take a lot of experimenting to find the correct dosage and timing because of a refractory period of about a week after dosing during which time an additional dose of the psychedelic won't work. Michael has taken sub-hallucinogenic doses of the mushroom several times now, each time with the same effect: His headaches completely disappear!"

This is not an isolated case BTW, just a recently discussed one  - many have had results with Psilocybin.

The full thread can be found in the Medications, Treatments, Therapies message board category, Topic titled: Update on Bonkers

You can find more discussion on the subject on this site by searching "psilocybin"

Sofia wrote on Feb 21^st, 2010 at 12:13pm:

i have been told i need to buy a special regulator

Don't forget about the special non rebreather mask also.

bejeeber wrote on Feb 21^st, 2010 at 1:32pm:

Woops - sorry, realizing now that specific threads such as the one I tried to link to above can't be linked to on this forum. I'll paste an excerpt from that thread about another extremely severe chronic case here: "Complete relief, but only lasting a few days. P. Cubinsis is ILLEGAL but we can grow lt at home. AND IT WORKS!! At least for him it does. It's going to take a lot of experimenting to find the correct dosage and timing because of a refractory period of about a week after dosing during which time an additional dose of the psychedelic won't work. Michael has taken sub-hallucinogenic doses of the mushroom several times now, each time with the same effect: His headaches completely disappear!" This is not an isolated case BTW, just a recently discussed one  - many have had results with Psilocybin. The full thread can be found in the Medications, Treatments, Therapies message board category, Topic titled: Update on Bonkers You can find more discussion on the subject on this site by searching "psilocybin"

     Or crank up the oxygen and huff harder.  Get acquainted with hi-flow oxygen by clicking the oxygen info link.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

            Potter

Potter wrote on Feb 21^st, 2010 at 1:43pm:

bejeeber wrote on Feb 21st, 2010 at 1:32pm: Woops - sorry, realizing now that specific threads such as the one I tried to link to above can't be linked to on this forum. I'll paste an excerpt from that thread about another extremely severe chronic case here: "Complete relief, but only lasting a few days. P. Cubinsis is ILLEGAL but we can grow lt at home. AND IT WORKS!! At least for him it does. It's going to take a lot of experimenting to find the correct dosage and timing because of a refractory period of about a week after dosing during which time an additional dose of the psychedelic won't work. Michael has taken sub-hallucinogenic doses of the mushroom several times now, each time with the same effect: His headaches completely disappear!" This is not an isolated case BTW, just a recently discussed one  - many have had results with Psilocybin. The full thread can be found in the Medications, Treatments, Therapies message board category, Topic titled: Update on Bonkers You can find more discussion on the subject on this site by searching "psilocybin"      Or crank up the oxygen and huff harder.  Get acquainted with hi-flow oxygen by clicking the oxygen info link. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE             Potter

Or do both.

Hello, I'm also new to the site as well - in retrospect, I have suffered from the symptoms of CH since about 2002, but was not accurately diagnosed until 2007, and have been dealing with these since.  I have gone the imitrex and treximet route, the latter being far more effective in my case, although the side effect is tremendous periods of sleep when I do take a dose, so I've learned to take a partial dose as soon as I feel the symptoms coming on and hope I don't have to take the remainder - I have not yet experienced O2 as a treatment, but I will say that lots of fresh air (the colder, the better) have helped a lot - to the point I make sure my bedroom windows is open all night, fan on medium, and a very warm blanket!  I have been reading numerous posts on this (terrific) site and I have already made a list of new possible remedies which I will gladly give a try when dealing with this again - thank you all !  I am tremendously encourage!!

Hi Sofia,

Your letters break my heart. I am so sorry. To have to deal with such pain when no one understands and no one can help has brought many of us to our limits. Many of you, I should say, since I don't feel what you feel. My son Michael feels what you feel and I can only see what he feels. But it's constant and he hadn't had a break in four years. I joined this forum for him under the screen name of Bonkers. The same name is used on the sister site to this one, clusterbusters.com. That site and their forum deals primarily with the amazingly effective but still illegal psychedelic drugs.

My son Michael was unresponsive to any of the currently prescribed CH medications as well as oxygen therapy and r.c. seeds. The chance reading of an article in the journal Neurology and our incredible luck in finding this and the Clusterbuster.com forums has brought us to the light at the end of the tunnel. His periods of COMPLETE REMISSION are lasting only 4 days at this point but I have no doubt that with a little more refining we will bring his cluster headaches under complete control.

To follow our journey, you might on this site go first to "Medications, Treatments, Therapies," scroll down the 2nd page to "Time for the 75-80% to stand up and be counted," go to the 14th page and scroll down to the post by "bonkers" which begins with "Hi all."

On the Clusterbuster forum, go to "Share Your Busting Stories," and scroll down to "Hope this helps just one sufferer." Also, under "Theory & Implementation," go to "IT WORKED!!!!," and "S.O.B. IT WORKED AGAIN!!!

Please, Sofia, spend time reading the information contained on these two web sites. I promise you will learn a lot, be prepared to talk to your doctors and find your way out of this hell. If you have any questions at all, PM me on either forum or email me at layvuz4@nethere.com or call at 619-445-0434. I will find answers to your questions or introduce you to people far more knowledgeable than I am about these matters. There is a lot more than just hope; you will find a way.

All the Best,

Ron (Bonkers' dad)

bonkers wrote on Feb 21^st, 2010 at 10:03pm:

Hi Sofia, Your letters break my heart. I am so sorry. To have to deal with such pain when no one understands and no one can help has brought many of us to our limits. Many of you, I should say, since I don't feel what you feel. My son Michael feels what you feel and I can only see what he feels. But it's constant and he hadn't had a break in four years. I joined this forum for him under the screen name of Bonkers. The same name is used on the sister site to this one, clusterbusters.com. That site and their forum deals primarily with the amazingly effective but still illegal psychedelic drugs. My son Michael was unresponsive to any of the currently prescribed CH medications as well as oxygen therapy and r.c. seeds. The chance reading of an article in the journal Neurology and our incredible luck in finding this and the Clusterbuster.com forums has brought us to the light at the end of the tunnel. His periods of COMPLETE REMISSION are lasting only 4 days at this point but I have no doubt that with a little more refining we will bring his cluster headaches under complete control. To follow our journey, you might on this site go first to "Medications, Treatments, Therapies," scroll down the 2nd page to "Time for the 75-80% to stand up and be counted," go to the 14th page and scroll down to the post by "bonkers" which begins with "Hi all." On the Clusterbuster forum, go to "Share Your Busting Stories," and scroll down to "Hope this helps just one sufferer." Also, under "Theory & Implementation," go to "IT WORKED!!!!," and "S.O.B. IT WORKED AGAIN!!! Please, Sofia, spend time reading the information contained on these two web sites. I promise you will learn a lot, be prepared to talk to your doctors and find your way out of this hell. If you have any questions at all, PM me on either forum or email me at layvuz4@nethere.com or call at 619-445-0434. I will find answers to your questions or introduce you to people far more knowledgeable than I am about these matters. There is a lot more than just hope; you will find a way. All the Best, Ron (Bonkers' dad)

Hi Ron.......Thankyou,i will have a read........
Well last night was awful....suicidal in fact(did i spell that correct)never mind.....6 attacks one after the other.......its driving me mad....i dont know know how much longer i can put up with this.......I just want my life back.........I hope youre son gets a break soon......Here are some contact info for you if you or youre son wanna chat..........Hope to stay in touch........Sofia xx

I will send private mail to you with contact info........