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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie From the NorthEast
        
(Message started by: cak46 on Nov 12^th, 2006, 7:08pm)

Title: Newbie From the NorthEast
Post by cak46 on Nov 12^th, 2006, 7:08pm

Hi All,

I've been battling what one doctor a while ago diagnosed as episodic atypical vascular cluster headache since I was about 15 years old. I'm now 41. My cycle is every two to three years, with an on-time with the animal from anywhere between 2-6 months. I was a guinea pig when the episodes first started and went through a laundry list of meds from age 15 to 23. The medical establishment, back then, did not recognize CH or migraine in children.

The animal for me stays at a chronic level one or two during the whole episode, in between the peaks of around nine or ten on your KIP scale. Rarely, I get a few hours off at a level zero. The CH for me is atypical due to having migraine-like symptoms as well as CH symptoms when the animal rears his ugly head.

Meds I've taken over the years that did not help include:
propranolol, ibuprofen, buspar, celebrex, elavil, amitryptyline, nitroglycerin, oxygen, prozac, calcium channel blockers (can't remember which ones), and a number of others that have long since been forgotten.

I really feel for you that have the chronic version of this because once every two to three years is too much for me.

Title: Re: Newbie From the NorthEast
Post by E-Double on Nov 12^th, 2006, 8:17pm

Hiya Cak,

welcome to the asylum and hopefully you can find some sanity here ;)

Rockland USA???????? Rockland County NY??

If so I certainly know your area.
I'm down on LI but have quite a few buds who live in your neck.

Good luck, read and share

Title: Re: Newbie From the NorthEast
Post by Linda_Howell on Nov 13^th, 2006, 12:53am

This jumped out at me like a huge red flag

Quote:

nitroglycerin,

This drug is a 'for sure' trigger for a cluster headache. If you still have that drug....toss it.

Title: Re: Newbie From the NorthEast
Post by RichardN on Nov 13^th, 2006, 10:35am

Welcome Home cak

You said you had used 02 without effect. How long ago? At what flow rate? Non-rebreather mask?

I ask because many here did not get relief from 02 the first time they use it . . . . it often takes practice and a few helpful hints.

I can't take triptans (arterie blockage & high cholesterol) . . . and 02 is my only abortive . . . killed him twice last night . . . a miracle for those of us (60-70%) it works for.

You've just stepped into a family of folks who truly understand your pain. I was a basket-case when I came here (2/02) . . . this place gave me my life back.

Be Safe, PFDANs

Richard

Title: Re: Newbie From the NorthEast
Post by Bob_Johnson on Nov 13^th, 2006, 12:13pm

Really is time to get up to speed! Much new data on CH since your early experiences.
----------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

-------
First rate article to start you:

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Newbie From the NorthEast
Post by cak46 on Nov 16^th, 2006, 5:45pm

E-Double: Thanks for the welcome! I'm from the Rockland, Maine area. Home of the lobster and pine trees, many, many pine trees..... :)

Linda_Howell: Thanks for the info. The nitro tests was from way back when I was young. I don't remember it making them worse, but have read that it's bad for CH. No need to worry, wouldn't try it again!

RichardN: The O2 was long ago as well, nasal canulla (sp?) at 4Lpm. Although, I do have a tendency to experiment and most likely turned it up because it wasn't working. I'm gald that it brings relief for you and others. :)

Bob_Johnson: I read through the excerpt that you posted. and it was very informative!

Thanks to you all for the warm welcome!

Title: Re: Newbie From the NorthEast
Post by Linda_Howell on Nov 16^th, 2006, 6:58pm

Cak,

No wonder the 02 didn't work. You were seriously doing it wrong. The nasel cannula won't work for Cluster headache use. You need a non-rebreather mask and you need to set the regulator to at least 10 lpm. I use it at 15, as do others here and I can abort a HA in about 15 mins. 75 % of the time.

Title: Re: Newbie From the NorthEast
Post by cak46 on Nov 16^th, 2006, 7:53pm

on 11/16/06 at 18:58:34, Linda_Howell wrote:

Linda,

Thanks for the info. It was over 25 years ago and they probably didn't even have rebreathers back in the "dark ages". :) That was the "prescribed" treatment from the doc I had back then. I've never had much luck with doctors over the years and have acquired a real distrust of them. My current doc seems to be ok, thus far.

If I take frovatriptan when the shadows come, it keeps the HA at level 1 - 2, which is acceptable to me. I was taking Zomig, but swapped to Frova because it is less costly and was specifically designed to minimize constriction of the coronary arteries/blood vessels. Taking 2 of the Frova each day and currently battling the insurance company, as I've read others here are doing.

Title: Re: Newbie From the NorthEast
Post by chewy on Nov 16^th, 2006, 7:59pm

I love Maine, Spent a week at the Samoset last year.

Graduated from Unity College.

Heres a little help with battleing Insurance Companies.

http://headaches.about.com/cs/advocacy/a/trip_limits.htm

Title: Re: Newbie From the NorthEast
Post by cak46 on Nov 16^th, 2006, 8:09pm

on 11/16/06 at 19:59:26, chewy wrote:

I love Maine, Spent a week at the Samoset last year.

Graduated from Unity College.

Heres a little help with battleing Insurance Companies.

http://headaches.about.com/cs/advocacy/a/trip_limits.htm

Thanks! I live about 15 minutes away from the Samo and worked in the kitchen there when I was 15.

At the appeals process stage Blue Cross... >:(

Title: Re: Newbie From the NorthEast
Post by Linda_Howell on Nov 16^th, 2006, 8:17pm

Here is an oxygen link for you to read.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm