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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Proceedure
        
(Message started by: pinkeye on Apr 6^th, 2007, 7:49am)

Title: Proceedure
Post by pinkeye on Apr 6^th, 2007, 7:49am

Hi everybody. I'm new here and this is my first post. Im 37. I got my first CH when I was 19. [I'll never forget that day]
In a nutshell, I was your typical episodic sufferer who finally, after 5 years of cold turkey, got them under control with verapamil and Imitrex Injections. I was saved.
HOWEVER,...
About 5 years ago I had to increase the verapamil to 240 mg four times a day. [This was the ceiling that I climed to over time out of nessecity] I don't know if it is possible to build a tollerance or what. Unfortunately, the attacks crept back, and have not let up since. I seem to have become [for the most part] chronic.
Sometimes even the Imitrex[which always worked 100% of the time] won't abort it.
Now , my new doc, [ my guy retired] who is as good as it gets, has tried a couple other meds to no avail. He is now suggesting a proceedure where they go in and burn the nerves behind my sinus cavity. This is supposed to aleviate pain for someone like me. In and out in one day. I am hoping that someone here on the site has some knowledge, or even better, experience with this. I am more than a little freaked out about it. I am pretty sure that if I refuse the proceedure, then my new doctor is going to insist on stopping with the pain meds. He is pretty much giving me an ultimatum. It just sounds somewhat barbaric to me. Again, I would truly appreciate it if anyone here has any experience with this and would be willing to share it with me. Thans very much.---Danny

Title: Re: Proceedure
Post by chewy on Apr 6^th, 2007, 9:02am

How are you defining chronic?

Title: Re: Proceedure
Post by pinkeye on Apr 6^th, 2007, 9:23am

Whereas previously I would have periods of 6-12[roughly] months free of any symptoms at all.[I refuse to use the term "headache"]
For the last few years, there are no breaks[well,some real small ones] , although the severity of the attacks is not always as bad. Don't get me wrong, they're bad, but I've had worse. Some of the time they are as bad as ever.Know what I mean? I am of the opinion that the verapamil is still helping somewhat.

Title: Re: Proceedure
Post by pieface_49 on Apr 6^th, 2007, 10:08am

Hello Pinkeye,

I am suspecting your Doc suggested one of these surgeries? I found a good article concerning TN and surgeries.
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/rhizotomies.html

Here is a good article from Mayo Clinic. Scroll down to surgery and read what it says.
http://www.cnn.com/HEALTH/library/DS/00487.html

Title: Re: Proceedure
Post by nani on Apr 6^th, 2007, 10:30am

IMHO any kind of surgery should not be considered until you've tried everything else. There are lots of prevents (everyone is different, so what works for some probably won't work for everyone) to try. Look here:

http://www.ouch-us.org/medications/medications.htm

Then there are alternatives. Look here:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

and here:
www.clusterbusters.com

Good luck and pain free wishes to you, nani

Title: Re: Proceedure
Post by pinkeye on Apr 6^th, 2007, 11:44am

Thank you all for your help. I'm so glad that I did this. After reading some of those articles , I am going to try to talk my doctor into trying, yet some more medications that may work as a preventive. I must admit, now that I have read a bit about this procedure, I would not want to do it. Hopefully, my doctor will be willing to be patient. If he insists that I stop with the pain meds, I guess I'll just have to deal with it.Again, thank you all.
I have never really chatted with anyone who has CH, so this is really great.
I wonder. Verapamil has probably worked for many others here as a preventer. Has anyone had success with verapamil [as I did] for quite some time,but then slowly had it be less effective? If so, what then did you[hopefully] find that was more effective?Thanks--Danny

Title: Re: Proceedure
Post by BMoneeTheMoneeMan on Apr 6^th, 2007, 4:55pm

When you say "pain meds", what kind of meds are you talking about? Are you talking about Imitrex or are you talking about general pain killers?

If you are talking about pain killers, such as vicodin or percocet, these typically do not give relief of clusterheadaches. For me, certainly not.

You might want to talk to your doc about some other meds for prevention, and some new meds as an abortive if Imitrex is not working so well anymore. Maybe another form of triptan can help.

PF wishes
BMonee

Title: Re: Proceedure
Post by bejeeber on Apr 7^th, 2007, 12:34am

on 04/06/07 at 11:44:39, pinkeye wrote:

If he insists that I stop with the pain meds, I guess I'll just have to deal with it.

Or if you don't agree with his ultimatum, do you think maybe he's not exactly as good as it gets after all, and a different doc should be considered?

Title: Re: Proceedure
Post by pinkeye on Apr 7^th, 2007, 12:13pm

Well, ...I know ,as you all probably do, that no pain killer can aleviate the pain of an attack. However ,I will say that I find that they help a little. Im not interested in a debate on this subject.
As far as getting another doctor, I have found [since my savior retired] that there are not many headache specialists who are interested in my case. I've been passed around a bit from neuros to pain clinics, to a headache center which is where I am. I would not know where else to go. Hopefully we can find a course thats right for me.

Title: Re: Proceedure
Post by Brewcrew on Apr 7^th, 2007, 6:24pm

Keep in mind that surgeons will always suggest surgery - it's what they do.

It's up to you to decide what option is best for you. For me, I would never consider surgery until every other non-surgical option had been exhausted.

Title: Re: Proceedure
Post by UN solved on Apr 7^th, 2007, 7:05pm

Is this doctor of yours a headache specialist ?

I would find another doctor asap ... a doctor who will truely try all the non-invasive options before recommending surgery. If you start cutting nerves - you WILL see side effects and it probably won't stop the 'headaches'.

UNsolved

Title: Re: Proceedure
Post by pinkeye on Apr 7^th, 2007, 8:01pm

Yes, he is a headache specialist. He is head of The Graham Headache Center at the Faulkner Hospital in Massachusetts. Can you tell me how you did your Histamine Desensitization? I read the article you provided. Were you hospitalized for it? That sounds very interesting. It seems like I am a perfect candidate for this.

Title: Re: Proceedure
Post by UN solved on Apr 7^th, 2007, 10:12pm

Histamine Desensitization is a non-invasive therapy with little or no side effects. After trying many medications and procedures, I gave this a try and was skeptical that it would work ... but it somehow did ! :)

I don't know of anywhere that does this except for the Diamond Headache Clinic in Chicago ( and now I do it here at the local hospital in Indiana )

This must be done in a hospital setting. It takes 11 days to do this. You get 2 IV bags per day until you finish 21 IV bags.

I don't know how this works ( for me ) but it does ( and thats all that matters )

If you are really interested in trying this ... give the Diamond Clinic a call @ 1-800-HEADACHE for an appointment or ask your doctor to call them for the histamine protocol.

If this is done correctly ... it is safe and may provide 'striking' results !!

Goodluck

UNsolved

Title: Re: Proceedure
Post by pieface_49 on Apr 7^th, 2007, 11:58pm

Appears to have very good results with CH suffers.
http://www.findarticles.com/p/articles/mi_m0BJI/is_9_30/ai_63125273

First time I have heard it called histamine headache?
http://www.emedicine.com/EMERG/topic229.htm
The above article has some interesting information:
"Causes: Provocation of attacks

* Subcutaneous injection of histamine provokes attacks in 69% of patients.

* Attacks are triggered in some patients by stress, allergens, seasonal changes, or nitroglycerin.

* Alcohol induces attacks during a cluster but not during remission. Of patients with cluster headache, 80% are heavy smokers and 50% have history of heavy ethanol use.

* Risk factors

o Male sex

o Older than 30 years

o Small amounts of vasodilators (eg, alcohol)

o Previous head trauma or surgery (occasionally)"

I questioned histamine in the past as a possible clue. Now I see it is also called the histamine headache.

"Histamine is released as a neurotransmitter. The cell bodies of neurons which release histamine are found in the posterior hypothalamus, in various tuberomammillary nuclei. From here, these histaminergic neurons project throughout the brain, to the cortex through the medial forebrain bundle. Histaminergic action is known to modulate sleep. Classically, antihistamines (H1 histamine receptor antagonists) produce sleep."
http://en.wikipedia.org/wiki/Histamine

Night Y'all

Title: Re: Proceedure
Post by UN solved on Apr 8^th, 2007, 1:35am

Like I said ... don't know why it works for me, but it does. And yes, too much histamine will cause a cluster attack. The histamine desensitization treatment involves giving you very small amounts of histamine over an 11 day period.

UNsolved

Title: Re: Proceedure
Post by pinkeye on Apr 8^th, 2007, 9:30am

That sounds like something my insurance would never pay for. I am looking into it..Thank you.