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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> CHRONIC Cluster Headache
        
(Message started by: NL on Apr 17^th, 2004, 8:41am)

Title: CHRONIC Cluster Headache
Post by NL on Apr 17^th, 2004, 8:41am

Since December 2002 I have frequent headaches, the doctors have diagnosed as Cluster headaches. In the past 1,5 year there have been maximum 10 days without headaches.
A chronic Cluster period takes average 5 years (I have read), I don't think, I will cope with that!
Only the Imitrex during the attacks does work, but nothing to prevent it (I'm now taking a combination of Lithium - Verapamil - Topiramate).
I've heard about implanting an electrod in the Hypothalamus (Parkinson Disease), is anyane familiar with this surgery and the results in case of (CHRONIC) Cluster Headache?
I need information, I'm running out of options!

Title: Re: CHRONIC Cluster Headache
Post by pubgirl on Apr 17^th, 2004, 9:12am

NL

The hypothalamic implant is a very extreme option only currently to be considered when literally everything else has failed. It is experimental deep brain surgery only at the moment and carries major risks, including death. As far as I know, only the Italians have done any, and certainly most of the Ch world experts are not advocating it at the moment because of the risks and uncertain outcome.

If you really have exhausted all medical options (which I doubt) suggest you visit the OUCH library (link on your left) and look at all the options from drugs through to the non-invasive surgery options.

Wendy

Title: Re: CHRONIC Cluster Headache
Post by UN_SOLVED on Apr 20^th, 2004, 9:56am

Welcome to the club. I've been chronic since October 2000. Wendy's right, only the Italians are doing the "Deep Brain Stimulation". Doctors from MHNI (Michigan Head Pain & Neurological Institute) tell me that maybe only a dozen people have had it done so far. They also said no one has died BUT it is still truely experimental. I'm sure you haven't exausted all your options yet. There are many different drugs and treatments to try.
Hang in there
Unsolved
PS...Hang around and read posts here. It's gotta help !

Title: Re: CHRONIC Cluster Headache
Post by echo on Apr 20^th, 2004, 1:32pm

Welcome to the club.

Title: Re: CHRONIC Cluster Headache
Post by Svenn on Apr 20^th, 2004, 1:36pm

Cant say that i want to reccomend that surgery.98% of those i know done that have got it back within mnths and even got hit worse then before.

Have you tried this combo before?

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for at least 15 minutes on a nonbreathermask or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg every 3dh day
Tapering down the verap im on full dozage 7 days after my last hit,then over the next 5 weeks im down to 1/daily.
after 1 week on Verap retard 120mgX1 and still no hits i can quit that to

The very best from Svenn

Title: Re: CHRONIC Cluster Headache
Post by UN_SOLVED on Apr 26^th, 2004, 10:02pm

on 04/20/04 at 13:36:50, Svenn wrote:

Cant say that i want to reccomend that surgery.98% of those i know done that have got it back within mnths and even got hit worse then before.

Svenn, You know people who have had this "Deep Brain Surgery" ?? There's only been a handleful done.
According to Dr. Rozen from MHNI (http://www.mhni.com), it's been done with fairly good success and NO DEATHS. Still won't be available in the US for awhile.

Unsolved

Title: Re: CHRONIC Cluster Headache
Post by Svenn on Apr 27^th, 2004, 1:47am

Unsolved

I refering to those here in Norway that i personally know and have done that surgery.
Refering to their experience after this surgery
Refering to what our Neuroes say about this surgery.
My conclution is that there is more sideeffects with this then what we can gain.

Of course there might have been some positive examples with that surgery,God bless those has had a positive experience,but is it worth it when you can read the numbers that tell you its to bad odds here.

Then again who know what will happend within 5-10 years when the docs get more experience with this

Hope this clear up something on what i tried to say

Svenn

Title: CRe: CHRONIC Cluster Headache
Post by Filbert on Apr 27^th, 2004, 5:06am

Could I humbly suggest that there's some crossed wires here. I think Svenn is talking about the occipital nerve stimulation procedure whereas Un Solved is referring to the as yet very rare deep brain procedure.

Filbert

Title: Re: CHRONIC Cluster Headache
Post by pubgirl on Apr 27^th, 2004, 5:21am

Crossed wires?? ;;D

Hope not!

Little ONSI joke there

W

Seriously though, I think Filbert is right Svenn, if the hypothalamic deep brain implant has been done at all outside Italy, it has been kept very quiet. The ONSI (Occipital Nerve Stimulator) is now being done in several countries with very mixed results.

The reference for the HIGHLY experimental deep brain implant is below. It is not available for most sufferers in the world as it carries huge risks as it is complicated neurosurgery deep inside the brain. Certainly here in the UK, Prof Goadsby is scheduling more ONSI's but no hypothalamic implants.

http://www.ouchitalia.it/ztemp/731.pdf

Title: Re: CHRONIC Cluster Headache
Post by Svenn on Apr 27^th, 2004, 9:37am

Seems that i`ve manage to do it again here :-[ So i hope you can forgive me.

Filbert&Pubgirl you both are so right Thanks for that

Svenn

Title: Re: CHRONIC Cluster Headache
Post by Redd715 on Apr 27^th, 2004, 11:05am

I've read up a bit, (not a whole lot) on both of these options, and I have to say that I wouldn't be in favor of either of them at this point. (Prolly the reason I only read a bit of the research on it).

Call me a whimp, but I KNOW CH isn't going to kill me unless I'm the one to turn out my own lights. And I'm too much of a survivor to "seriously" consider that. That said I'd exhaust all options available to me to fine relief before I'd consider risking my life. One little slip by an over tired surgeon and....

nope...not my idea of a good time...I'm rather partial to breathing thanks.

Title: Re: CHRONIC Cluster Headache
Post by pubgirl on Apr 27^th, 2004, 3:11pm

Redd

The ONSi is not invasive and carries very low risk. The implants and the "power pack" are subcutaneous, not in the brain at all, so the only main risks are similar to any operation where skin is cut.
The ONSI is also done under local anaesthetic, so less risk there as well.

Wendy

Title: Re: CHRONIC Cluster Headache
Post by Redd715 on Apr 27^th, 2004, 7:33pm

I told ya I didn't read all that much about it....and I'm a whimp when it comes to that stuff...lol...don't color me Redd..color me embarrased... :-[

Title: Re: CHRONIC Cluster Headache
Post by Roxy on Apr 28^th, 2004, 12:41am

NL, welcome. Glad you found this place, it's a great place for support and help.

Has your doctor mentioned 02? It works really well as an abortive. See the 02 button to the left, that will give you the info you need. Save your triptans for when you really, really need them....like out in public or at work. There are some triptans that will give you a little longer respite than the trex will. I'm limited on the amount I can use, but if I take a Relpax, I'm good for about 4-5 hours.

You said you're taking preventatives, are they helping at all? How long have you been taking them?

Tracey

Title: Re: CHRONIC Cluster Headache
Post by Charlie on Apr 28^th, 2004, 6:32am

Welcome and although I know you are anxious for some kind of definite fix, neurosurgery should be a last resort.....and I mean the very last thing you try. It's not been proven all that effective yet anyway.

You might try this:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as a slight expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie Strand

Title: Re: CHRONIC Cluster Headache
Post by UN_SOLVED on Apr 28^th, 2004, 9:07pm

Charlies approach sounds much less invasive. I do hope it helps others like it helps Charlie. Wouldn't that be just a super thing !! [smiley=thumbsup.gif]

Good link PubGirl. The first real 'report' on the "Deep Brain Stimulation' that i've actually seen. Like the doctors as MHNI, they said it's not been done much, but has been done with 'success' and with NO DEATHS [ & only in Italy]. Dr. Rozen claims to actually know the doctors that taught the Italians how to perform this surgery. "They were taught by neuro's from the Cleveland Clinic ... ", he said. It will be available in the US in the next few years.

ONSI is much less invasive. If someone were to want to try it, I'd say go for it. BUT...DO THE 'TRAIL' IMPLANT FIRST. (No sense in having it all implanting if it's not going to work)
Of course, it didn't help me :(
Unsolved