Hi

i've been searching for some experiences for deep brain stimulation at ch-patients - this is how i found this site and i'm happy to be a new member!

to introduce myself:

i'm Sven, 25, live in germany actually and suffer from C-CH
for almost seven years now. since everything was done with me before and i finally became addicted to fentanyl, hydromorphone and other hard pain killers, the stimulation is my ultima ratio.

evryone is welcome to add me on facebook if wanted @
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and last but not least; this is me:
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a nice and pain-free day to everyone!
best greets, feneq

feneq wrote on Jul 27^th, 2010 at 11:30am:

everything was done with me before.

Hi Feneq,

Good to have you here.

I'm afraid I don't know anything about deep brain stimulation, but a lot of us have had tried just about everything the medical field has to offer - with poor results - only to find out about some very effective ways to abort/prevent CH attacks here and to get our lives back.

I'm guessing that high flow/non rebreather O2, as outlined in the oxygen info link to the left of this page is something the idiots doctors haven't prescribed for you yet, even though it can be very effective, not to mention safe and non toxic. Doctors are almost universally way behind on this method of O2 use.

So they gotcha addicted to pian killers. Sigh. Well for preventatives there are natural, non toxic, and very powerful alternatives that are the main focus over at clusterbusters.com and it's message board. Here's a talk on that subject given by one of our fellow CH'ers:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

cheers.. erm, no- i've got enough bottles of o2 at home, of course it helps- at work i've got it everywhere- the oxygen is coming out of the walls in hospitals, i'm doc by myself and that's where the problem starts: you have to function all the time and 72hrs per docday... i can not afford to run to a mask while reanimating a heart-attack... :-[

i already got the nickname Dr. House, M.D. at work
yeha.

not everyone of the guys in white is completely brainless, there are some useful colleagues, too ;)

Oh, you're a doctor and I just um, kind of referred to doctors as idiots there, Ahem...that's a nice intro isn't it? Sorry about that.  :-[

I know there was an episode or 2 of Dr. House MD where he advocated psilocybin for CH as they generally do at clusterbusters.com. Does that have anything to do with how you got your nickname?

Welcome Feneq, excuse me Dr. Feneq   ;)

Glad you found us, but sorry the CH beast has hit you like an on coming train.  Read all you can here, but given you are already a Doc there probably isn't much you don't know already about CH. 

Plenty of people here who know what you are going through for added support though!

Wishing you many Pain Free days and nights!

Nice one Bejeeber!  Why must you insult our new guest?? :D

I would follow his suggestion though.  I too had a sensitive job that required no constant connection to an oxygen bottle.  Go for the no side effect cluster buster approach. 

--Shaggy :)

Hey Bejee, don't worry, in too many cases unfortunately i have to agree about stupid docs...

The nickname is coming from the opioid-analgetics, no hallucinogens. But as you can imagine I tested really a lot on myself in times i was close to a headshot. Because i didn't made case studies on CH with med.(drug) treatment with comperative results on other patients- even if i had a few "oh-wow! experiences" i'd prefer not to write them in a public forum, it might be dangerous- i guess you understand.  :-X
Anyway, if someone is really interested in theoretical (UNCERTIFIED !!!) medical treatments it possibly might be arranged in cooperation with your physician / neurologist.. - contra: costs for treatments, perscriptions and medication would not be covered by any insurance. Of course i can be contacted by PM if someone is interested to make a plan and find out which success previous treatments achieved.
of course i can not give any guarranty and have to warn of hazards.
that's why i prefer to make experiments on myself... beside, as you can see the massive differences between therapeutic achievements on different patients and the certainty that I have no empiric scientific facts to compare, values may vary  :-/

feneq wrote on Jul 27^th, 2010 at 7:27pm:

i'd prefer not to write them in a public forum, it might be dangerous- i guess you understand.  :-X

Understood Feneq, and appreciating your experiments, plus hoping they could lead to some breakthroughs at one point.

Shaggy - I thought you and some of the other regulars here might be amused by my open mouth/insert foot incident.  :o

JustNotRight wrote on Jul 27^th, 2010 at 5:02pm:

Glad you found us, but sorry the CH beast has hit you like an on coming train.  Read all you can here, but given you are already a Doc there probably isn't much you don't know already about CH.

Welcome Feneq!
Glad you're here! 
Particularly glad you're here as you seem to need to be here - a doc with a history of addiction and a penchant for self-experimentation who is still treating patients...
You've probably heard the adage - 'The doctor who treats himself has a fool for a patient.' 

Please, I hope to heaven above that you are getting the help you need and, even more so, are keeping your patients safe.

And, Ginger, please, take it as truth - just because one is a doctor does not in any way mean that one knows all about this condition.  It is a bugger of a disease and book learning is one thing - the real life learning and experiences that are shared on this board are an entirely 'nother bag of tricks altogether. 
(Just for instance, there is nothing in the books about Red Bull!   :))

Lettucehead wrote on Jul 27^th, 2010 at 10:06pm:

JustNotRight wrote on Jul 27th, 2010 at 5:02pm: Glad you found us, but sorry the CH beast has hit you like an on coming train.  Read all you can here, but given you are already a Doc there probably isn't much you don't know already about CH.  Welcome Feneq! Glad you're here!  Particularly glad you're here as you seem to need to be here - a doc with a history of addiction and a penchant for self-experimentation who is still treating patients... You've probably heard the adage - 'The doctor who treats himself has a fool for a patient.'  Please, I hope to heaven above that you are getting the help you need and, even more so, are keeping your patients safe. And, Ginger, please, take it as truth - just because one is a doctor does not in any way mean that one knows all about this condition.  It is a bugger of a disease and book learning is one thing - the real life learning and experiences that are shared on this board are an entirely 'nother bag of tricks altogether.  (Just for instance, there is nothing in the books about Red Bull!   :))

I did not mean that he knew all or did not need to be here.  I simply meant that he may know more than the average person, him being a Doc.   ;)

<Edited cause I can't friggin type today.>

thank you very much for welcome me and all your comments, all your trust and doubts, as you can see i am quite young and i just did my degree- there are still endless informations to learn during my carreer  ;)

ah, by the way - i am very interested in the coherence of CH and the suprachiasmatic nuclei because i am blind on my right eye after a bad accident and 22 surgeries - my cluster is right-sided aswell..

Hey, Sven, and welcome. I have family in Gross-Zimmern, not too far from Frankfurt. I love the area and Germany in general.

You originally asked about deep brain stimulation. There is one other on the board considering this, and to be honest, it was a point of discussion betweem my neurologist and myself not too long ago.

I was told there were two type of surgeries currently available. One in Italy, and one here in America. Germany may have some doctors working on this as well. Both are risky and results are mixed, but there are so few statistics at this point. I'm sure you know all of this.

Are you certain there are no other preventatives and abortives you could try? There are so many combinations that have worked, like high doses of daily verapamil (up to 960mgs) and lithium as well as non-pharmaceuticals like Taurine and caffeine, melatonin and kudzu.

Praying for the best for you. Keep us informed. lance

times ago when everything was okay they really tested every possibility in treatment with me without success, believe me, i even have been tested to treatments which are unsubscripted for CH...

every day i am collecting important news from cases in CH-patients because i want to make a very big case-study where i have studied and compared every little detail found.

i know about all details in DBS or occipital nerve stimulation- but i wanted to hear detailed experiences of patients, and maybe i'd contact the neurosurgist which made the implantation to hear it from his point of view, too.
cluster headache is my demon and my mission, a colleague even said my cluster is a god's gift - as you can imagine this point of view is hard to stand