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        New Message Board Archives >> 2002 Posts >> Ok SteveY ... you got it brotherman
        
(Message started by: dannyboy on Aug 21^st, 2002, 10:32am)

Title: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 21^st, 2002, 10:32am

I'd say that ...

The extra-cranial structures (outside the brain) of the head, neck and face eg muscles, arteries, nerves etc can contribute as input factors into cluster headache pain

Um Ueli, perhaps you'd like to fill steveY in on how you feel about me sharing this opinion ...

Title: Re: Ok SteveY ... you got it brotherman
Post by debbie4278 on Aug 21^st, 2002, 10:34am

dannyboy,
don't you have a drug rep to go talk to
or a office person to take to lunch??????????

Title: Re: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 21^st, 2002, 10:44am

Nope

Office hours hours ended 45 mins ago and we don't do drugs

But Thanks Anyway

Title: Re: Ok SteveY ... you got it brotherman
Post by SteveY on Aug 21^st, 2002, 11:36am

Interesting theory.

However, I am a fan of the faulty hypothalamus theory.

Activation within the hypothalamus due to excess number of cells, which fire a faulty or erronious signal(not fully understood yet by the real experts)

The pain of CH is due to the erronious signal causing massive dialation of vessels within the brain in effect causing crushing of the tri geminal nerve.

to be precise the first opthalmic division of the tri geminal nerve, other autonomic symptoms are a result of the activation of the cranial parasympathetic outflow from the 7th cranial nerve.

In short this is an inter cranial problem NOT as you state an extra cranial one.

Sorry to disagree Doctor Dannyboy.

And no I'm not going to get into a further debate on this MB about your theories.

We will have to agree to disagree.

Steve

Title: Re: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 21^st, 2002, 11:46am

Not at all SteveY, thanks for the frank answer

Are you prepared to discuss Your theory with me? Because I have a couple of questions

Danny

Title: Re: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 22^nd, 2002, 10:34am

SteveY

I agree that the problem is intra-cranial

I just disagree that the intra-cranial component is Never affected, and can not in Any cases be manipulated, by interference in extra-cranial factors

Look at : -

Heat and Cold Packs
The effects of Pregnancy
Those anaesthetic nasal sprays (not imitrex)
Trigger point injections into extra-cranial muscles
Ligation of extra-cranial arteries (check Ekbom's Atricle, I'll give it to you if you don't have it)
Treatment with intra oral othosis (I'll give you the case reports published in a very well respected American Medical Journal)
Magensium (I'll give you the case reports and you can search the archives for yourself)

In the future, the hypothalmic dicoveries of Dr Goadsby may well bear the sweet fruit of pain relief, but right now all you've got as a community is 02, migraine drugs, some herbs and spices, and Charlie. And that just doesn't cut it for every body. If one more person could be helped by the sharing of this information then what right has he got to squash discussion.

Damn, I was passionate there for a second and then realised that I'm pluggin for business again ... oh well ... thats what they call a rock and a hard place

Danny

Title: Re: Ok SteveY ... you got it brotherman
Post by oringkid on Aug 22^nd, 2002, 10:51am

Danny, all of what you listed is treating symptoms, which at this point is all we can do. It is not curing the problem. And I know that you know that none of these treatments works for everyone and most of the more aggressive treatments only work for about 1% and that those 1%ers may not have even had actual clusters.

Unless everyone who has these treatments done are given PET scans and show evidence of an abnormal hypothalamus as well as fitting the CLASSIC criteria of CH symptoms (no atypical CH) and then have the procedure done and are absolutely pain free for at least 5 years, I don't think it should be said that the procedure works.

That is my opinion, but I think it is sound. Too many other things have symptoms that are somewhat like CH, which aren't CH.

Sherry

Title: Re: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 22^nd, 2002, 11:35am

Sherry,

I believe that one of the greatest tasks that this community faces at the moment is to define excatly what a clusterheadache is

So getting back to your post ... and thank you for taking the time to reply ... what you say implies that CH.com is changing the IHS clasification of a clusterheadache to: -

"someone who has a deformed hypothalamus as well as IHS cluster symptoms"

I'm not saying that it is wrong, i just want to know if I'm understanding you correctly

Danny

Title: Re: Ok SteveY ... you got it brotherman
Post by SteveY on Aug 22^nd, 2002, 11:51am

Ok last time,

your theory of extra cranial activity.

During a CH attack many other things happen in the body, i.e increased B.P increased heart rate, sweating, secretion of hormones etc etc.

Probably some swelling of other viens in the head that don't actually cause the pain of CH.

CH is after all owned by the brain and the brain controls everything.

BUT all the other factors are secondary to to the fact that the primary problem is the trigeminal nerve being crushed.

To give a simple analogy, when you bang your humerous(funny bone) the sensation affects other areas of the arm i.e tingling sensation in the finger tips, but you wouldn't say that the fingertips were the source of the pain would you? Merely a secondary sensation from the primary area(with me so far?)

The cure I believe will not come from a tablet/spray that causes the arteries in the brain to constrict, rather it will come from a drug that targets the small group of nerve cells within the hypothalamus that send the erronious signal to cause dialation.

In short stop the signal before it's sent.

Latest research is now saying Imigran(sorry Imitrex) is now thought to actually have an effect on these cells at neuron level, in essence stopping the signal and the constriction is secondary. (still with me?)

Imitrex acting on these cells at neuron level is a bit like using a sledge hammer to crack a nut as its effects are on many neurons and the 5HTP2 receptors. It also causes constriction of other vessels within the body that are unwanted i.e heart(ever tried having sex after imitrex? major passion killer)

So new research is into a drug that can target these faulty neurons, switch them off and hence no signal no dialation, no crushed tri geminal nerve, no pain.

Another med with similar effect is sodium valporate(epilim) but again not specific enough.

So Doc Goadsby, keep researching and find the magic bullet.

OK for you Dannyboy?

PFDAN

Steve

Title: Re: Ok SteveY ... you got it brotherman
Post by dannyboy on Aug 22^nd, 2002, 12:05pm

Imigran ... ? You're not based in London are you?

Yeah, for me any response that talks medicine and doesn't flame me is a first and I've been here a year and a half, thanks

Just one question...

I've got an article from Doc Goadsby that goes like this

The patient has resection of the Trigeminal Nerve and the clusters persist. So they go back in and either RE-resection the nerve or make sure that it was resectioned properly the first time ... what ever, either way the clusters continued after they do away with the Trigeminal nerve completely

Do you get my question?

Danny

Title: Re: Ok SteveY ... you got it brotherman
Post by oringkid on Aug 22^nd, 2002, 12:09pm

Yes Danny. I think that in order to really make sure that the person actually has CH, based on the findings of Dr. Goadsby, they should show the deformed hypothalamus as well as the classic criteria.

Sherry

Title: Re: Ok SteveY ... you got it brotherman
Post by maria on Aug 22^nd, 2002, 1:35pm

SteveY or anyone else who cares to speculate,

I have a question, in the case of an episodic CHer with one cycle per year, does the cycle occur because of some sort of glitch in the hypothalamus at that time of the year or does the CH cycle actually serve some sort of purpose? For example (I am only speculating here), say the brain or hypothalamus senses that a particular neurotransmitter is at a low level and this sets off the cataclysmic effects with the vessels dilation and all that with the end result (the end of the CH cycle) being that the neurotransmitter levels are restored to a normal level. So that is my question is there some sort of purpose behind these CH cycles or just a glitch?

Thanks, Maria

Title: Re: Ok SteveY ... you got it brotherman
Post by SteveY on Aug 22^nd, 2002, 2:58pm

For the very last time,wish I'd never replied.

Maria, your question I do not know the answer to, however I have a theory...wait for it.

this could be controversial................

As Ch originates in the hypothalamus, assuming we are all hypothalamus groupies?

I daren't write this, cyclic rhythms are different amongst most CH sufferers i.e 1 month on 6 off 3on 12 off etc and not forgeting my group the chronics.

Now bear in mind this is a theory from an amatuer.

I don't believe there is any diffrence between a chronic and an eposodic...................bullshit I hear you cry!

But think of it another way, if the chronic was in cycle for say 60 years and was due to end cycle and have a 100 year remission, how would we know? We don't live long enough to find out.(said it was a controversial theory)

To answer your question on why some have 1 cycle per year of a short duration others longer, some chronic, that i definatley know I don't know the answer to.(I always wanted to be a amatuer gynocologist not an amatuer neurologist ;D)

Dannyboy the man, the one and only, re your information you have on COMPLETE removal of the tri geminal nerve by DR G? his name is Goadsby NOT Goerbolls?(wierd German guy who did dodgy experiments)

Removal of the complete tri gemenal nerve? bullshit! partial severing yes, removal no.

Finally(I promise) a question for you Dannyboy, you do not have CH as you said in your recent post,

So why are you here?

Steve

Title: Re: Ok SteveY ... you got it brotherman
Post by maria on Aug 22^nd, 2002, 4:37pm

Thanks SteveY, I guess I will have to wait for your theory regarding the purpose (if any?) of CH. Sorry your fate in this life is relegated to that of an amateur neurologist rather than an amateur gynecologist as you wished ;). I would welcome any other theories or speculations. Thanks, Maria

Title: Re: Ok SteveY ... you got it brotherman
Post by oringkid on Aug 23^rd, 2002, 7:41am

Danny, I just re-read your question to me and I mis-read it the first time.

No I don't propose that CH.com do anything.

I was proposing that clinical studies for drugs or procedures specifically geared for stopping the pain of CH use patients that present with both the hypothalamus deformity and the classic CH symptoms, just to rule out that the procedure or drug is being tried on someone who does not actually have CH.

Hope this clears it up some.

SteveY, I have wondered whether episodics just have a lower low than chronics. In other words, perhaps the activity is always going on, but episodics don't perceive the pain all the time. After all, chronics have episodes too, from what I understand. I constantly have some awareness of that area of my head even if it doesn't break into actual pain. There is a slight sense of burning there even out of cycle. Not really enough to notice for the most part. But I "feel" that part of my head alot.

Sherry

Title: Re: Ok SteveY ... you got it brotherman
Post by Cin on Aug 23^rd, 2002, 2:28pm

This is the best thread I've read in along time, great input from all of you. Thanks,

Big hug to all,
Cin

Title: Re: Ok SteveY ... you got it brotherman
Post by SteveY on Aug 23^rd, 2002, 2:41pm

Oringkid,

I wish I knew more, one thing for sure though the cure for CH won't come from operations on extra cranial vessels.

Glad you're being entertained.

Steve

Title: Re: Ok SteveY ... you got it brotherman
Post by oringkid on Aug 23^rd, 2002, 4:47pm

I believe you are correct there SteveY. I don't think it will help or cure either. My reason that was some of the articles that I have read saying that this or that cured a guy who presented with these symptoms really irritate me. Especially since, it seems to me that these supposedly cured people probably did not have CH to begin with. Their description of their pain matched. But as Ueli pointed out, the orthotic device that "cured" one patient of CH most likely had TMJ. I saw nothing in that article that showed that the doctors went by anything other than the patients description and the lack of findings in MRI or CT scan. At least that is what I got from it.

I think any drugs that are tested specifically for CH should use the criteria I outlined above as well. Just to make sure it is CH and not something else.

Sherry