Author |
Topic: Newbie From the NorthEast (Read 287 times) |
|
cak46
New Board Newbie
I love YaBB 1G - SP1!
Gender: 
Posts: 6
|
 |
Newbie From the NorthEast
« on: Nov 12th, 2006, 7:08pm » |
 Quote  Modify
|
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.
|
|
 IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: Newbie From the NorthEast
« Reply #1 on: Nov 12th, 2006, 8:17pm » |
Quote Modify
|
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
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender: 
Posts: 6721
|
|
Re: Newbie From the NorthEast
« Reply #2 on: Nov 13th, 2006, 12:53am » |
Quote Modify
|
This jumped out at me like a huge red flag
Quote:
This drug is a 'for sure' trigger for a cluster headache. If you still have that drug....toss it.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
RichardN
New Board Hall of Famer
Gender:
Posts: 690
|
|
Re: Newbie From the NorthEast
« Reply #3 on: Nov 13th, 2006, 10:35am » |
Quote Modify
|
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
|
|
IP Logged |
I can live with the beast as long as I don't have to "dance" with the bastard.
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Newbie From the NorthEast
« Reply #4 on: Nov 13th, 2006, 12:13pm » |
Quote Modify
|
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
|
|
IP Logged |
Bob Johnson
|
|
|
cak46
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: Newbie From the NorthEast
« Reply #5 on: Nov 16th, 2006, 5:45pm » |
Quote Modify
|
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!
|
|
IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: Newbie From the NorthEast
« Reply #6 on: Nov 16th, 2006, 6:58pm » |
Quote Modify
|
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.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
cak46
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: Newbie From the NorthEast
« Reply #7 on: Nov 16th, 2006, 7:53pm » |
Quote Modify
|
on Nov 16th, 2006, 6:58pm, Linda_Howell wrote:
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. |
|
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.
|
|
IP Logged |
|
|
|
cak46
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: Newbie From the NorthEast
« Reply #9 on: Nov 16th, 2006, 8:09pm » |
Quote Modify
|
on Nov 16th, 2006, 7:59pm, chewy wrote:
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... 
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss