New CH.com Forum

feneq

CH.com Junior

Offline

uncommented

Posts: 31
germany
Gender: male

intro
Jul 27^th, 2010 at 11:30am

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 @
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

and last but not least; this is me:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

a nice and pain-free day to everyone!
best greets, feneq

Back to top

my cluster is my partner - loyal, laying me down often enough and can make me cry !!

IP Logged

Click Here to visit the CH.com Facebook page!

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: intro
Reply #1 - Jul 27^th, 2010 at 12:14pm

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: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

feneq

CH.com Junior

Offline

uncommented

Posts: 31
germany
Gender: male

Re: intro
Reply #2 - Jul 27^th, 2010 at 12:50pm

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... Embarrassed

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 Wink

Back to top

my cluster is my partner - loyal, laying me down often enough and can make me cry !!

IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: intro
Reply #3 - Jul 27^th, 2010 at 1:14pm

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. Embarrassed

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?

Back to top

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

JustNotRight

CH.com Sponsor

Offline

CH version 15.0.8 member
since 2005 aka GingerS224

Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female

Re: intro
Reply #4 - Jul 27^th, 2010 at 5:02pm

Welcome Feneq, excuse me Dr. Feneq Wink

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!

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going

IP Logged

shaggyparasol CH.com Veteran Offline I Love CH.com! Posts: 192 Portland, OR Gender:	Re: intro Reply #5 - Jul 27^th, 2010 at 7:04pm Nice one Bejeeber! Why must you insult our new guest?? 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
Back to top	IP Logged

feneq

CH.com Junior

Offline

uncommented

Posts: 31
germany
Gender: male

Re: intro
Reply #6 - Jul 27^th, 2010 at 7:27pm

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. Lips Sealed

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 Undecided

Back to top

my cluster is my partner - loyal, laying me down often enough and can make me cry !!

IP Logged

bejeeber

CH.com Hall of Famer

Offline

Posts: 1359
Gnashville
Gender: male

Re: intro
Reply #7 - Jul 27^th, 2010 at 10:02pm

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. Lips Sealed

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. Shocked

Back to top

« Last Edit: Jul 28^th, 2010 at 10:30pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

IP Logged

Lettucehead

CH.com Old Timer

Offline

I am very blessed...

Posts: 293
Iowa
Gender: female

Re: intro
Reply #8 - Jul 27^th, 2010 at 10:06pm

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!

)

Back to top

Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

IP Logged

Click Here to visit the CH.com Facebook page!

JustNotRight

CH.com Sponsor

Offline

CH version 15.0.8 member
since 2005 aka GingerS224

Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female

Re: intro
Reply #9 - Jul 28^th, 2010 at 5:14am

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

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!

)

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. Wink

<

Edited cause I can't friggin type today.

>

Back to top

« Last Edit: Jul 28^th, 2010 at 5:38am by JustNotRight »

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going

IP Logged

feneq CH.com Junior Offline uncommented Posts: 31 germany Gender:	Re: intro Reply #10 - Jul 28^th, 2010 at 12:57pm 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
Back to top	my cluster is my partner - loyal, laying me down often enough and can make me cry !! IP Logged

feneq CH.com Junior Offline uncommented Posts: 31 germany Gender:	Re: intro Reply #11 - Jul 28^th, 2010 at 1:22pm 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..
Back to top	my cluster is my partner - loyal, laying me down often enough and can make me cry !! IP Logged

wimsey1

CH.com Alumnus

Offline

I Love CH.com!

Posts: 2457
MA
Gender: male

Re: intro
Reply #12 - Jul 28^th, 2010 at 1:40pm

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

Back to top

IP Logged

feneq

CH.com Junior

Offline

uncommented

Posts: 31
germany
Gender: male

Re: intro
Reply #13 - Jul 28^th, 2010 at 1:56pm

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

Back to top

my cluster is my partner - loyal, laying me down often enough and can make me cry !!

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!