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(Message started by: Dick on Sep 9th, 2002, 7:46pm)

Title: Yawning
Post by Dick on Sep 9th, 2002, 7:46pm
Hi All.  Newbie who has had CH for 13 years.

I've mentioned this to my doctor and to the neuro I saw today but got no reaction from either.

When I have a CH I know when it is going to end because I begin to yawn constantly for about 2 minutes.

Once the yawning stops the pain begins to disipate.

Has anyone else experienced this?


Also, I was taking 2 Cafergot and 2 Verapamil everyday for the past 6 years and the occurrance of CH was held to a minumum.  However, recently I have been getting the CH 1 to 3 times a day even taking the meds.  It appears they have lost their effectiveness and the Neuro I saw today wants me to try and stop the Cafergot completle yet offering nothing to replace it.
For pain control I was using Ergomar (sublingual) very effectively, but apparantly there was a problem with the drug and I haven't been able to get it for almost a year now.  Since I need something for the pain the Neuro has perscribed tylenol with codiene.  I tried to make the Neuro understand that by the time the Tylenol gets into the bloodstream, the headache will be gone and that I really need something that acts quicker like Imitrex.  He won;t prescribe Imitrex because I smoke, but I have used it in the past with no problems.

I've heard that Oxygen is a great abortive remedy, but the docs I see will not give me an rx for it.  Can anyone tell me what the objection to Oxygen Is.

Sorry to be so long-winded, but like all CH sufferers,
I'm looking for relief.

Thanks.

Title: Re: Yawning
Post by Drk^Angel on Sep 9th, 2002, 8:15pm
Welcome to the board!  Sorry that the beast is slamming your cranium between two, extra-large, titanium plated sumo wrestlers with bad attitudes.  Dump the neuro and get one with a clue.  Welcome to the family!

PFDAN......................... Drk^Angel

Title: Re: Yawning
Post by Dick on Sep 9th, 2002, 8:50pm
Thanks Drk^Angel.  When I left the neuro I was
a little pissed as he seemed more concerned about my heart then my CH's.

Since I'm using the VA I'll have to go along with his treatment plan till I can no longer stnd the 3-4 headaches a day.

I'm also going to try and sign up for trials at the Mayo here is Zoner land.

Title: Re: Yawning
Post by Georgia on Sep 10th, 2002, 1:24am
Welcome home. Sorry to hear that you are having such a hard time with your dr. I would definitely heed the advice of Drk...find a new doctor who has a clue. There is a button to the left labeled "OUCH". It will take you to the "organization for understanding cluster headaches", once there, you will find a list of dr's by area that are recommended by other sufferers.  I strongly suggest that you check it out and see if there is someone listed in your area.

As for the yawning, perhaps it is your body's way of getting more oxygen, which in turn stops the ch? Just a guess. If your dr won't prescribe O2, you can always buy medical grade 02 at a welder's supply shop. Lots of people here use it. You can get the mask you need at a medical supply store too. Click the link on the left about oxygen for more information and suggestions. You also might want to try uping the dose of verapamil. I really think your first steps should be to find to a new dr and to read everything you can on this site. Best of luck and please keep us updated.

Peace and love,
Georgia

Title: Re: Yawning
Post by Jim R on Sep 10th, 2002, 5:04am
Hi and welcome,

Ditto getting of the neuro and finding one who knows CH treatment methodologies.  The same thing happened to me on verapamil after having it work for over 7 years.  My neuro said it isn't unusual - the body can get used to a drug; he doubled my verap. dose to 480/day and added catapres.

O2 is an abortive savior to so many people here on the board.  Sometimes it works for me and sometimes not - usually it does if it is under say a KIP 6 or so, particularly now with my new drug regimen.

My neuro and regular doc won't let me have imitrex either becasue I smoke, have high blood pressure (now more controlled with catapres), and a strong famil history of heart disease, but they did prescribe amerge (have yet to use), another triptan - but it is in pill form so would take a while to kick in (which would be okay - I usually have long, 2-3 hr. CH when they're bad).

Good luck and get some O2!

Jim R

Title: Re: Yawning
Post by SteveY on Sep 10th, 2002, 5:47am
Dump the neuro, get a new one.

Tylenol and codiene? Try a boiled egg, probably be just as effective.

This is still the best article I've seen on CH treatment.

Steve

http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature

Title: Re: Yawning
Post by Dick on Sep 10th, 2002, 7:19am
Georgia, JimR, and Stevey.

Thanks for the reply.  The concenses here seems to be that I should
seek out another Neuro.   Since I use the VA for treatment, I don't know
exactly how to accomplish that other than to talk to my regular doctor
and tell her that the neuro was no help at all.

Any suggestions from you folks may be helpful .

Thanks.

Title: Re: Yawning
Post by NancyMcFree on Sep 10th, 2002, 7:27am
Welcome to the board and sorry you have to be here.  

You're regular doctor can perscribe any of the meds you need for clusters.....mine does.  While I do see a neuro my GP is the one that handles my perscriptions.  If your GP is understanding he/she won't have any problem writing the script for 02 or imitrix.  Try talking to them and bring in some info you print off the board here.  

Good luck.  

Title: Re: Yawning
Post by Jim R on Sep 10th, 2002, 7:39am
Dick,

Unfortunately, I don't know anything about the VA health system, however, I agree with Nancy - your GP should be able to do an O2 script - mine does, just like Nancy's.  They're also the ones that do my verapamil.  My neuro does Stadol, catapres, he did the lithium, the amerge - they sort of work in concert and do stay in touch with each other.  Good luck Dick.  I think you'll find, like most people here - O2 is a Godsend.

Jim R

Title: Re: Yawning
Post by echo on Sep 10th, 2002, 9:11am
Welcome aboard.  To jump in with the others --- dump the neuro.  Find one how actively treats others with CH.  



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