Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Doctor pushing you off on someone else
        
(Message started by: llreed on Dec 23^rd, 2005, 8:07pm)

Title: Doctor pushing you off on someone else
Post by llreed on Dec 23^rd, 2005, 8:07pm

:-[ hi, new to this site. I have been living with my CH buddy since I was 21 years old, I just enjoyed 2 years free from my CH. Now it's back worse than ever. On week 15 now. The neuro. let me know what was driving me crazy years ago but he retired 6 months after he started treating me. Since than it has been a nightmare with the docs and neuros that keep ignoring what I am telling them. They say rebounds and back to the closet I go for a month and cry my life away. I have researched this beast since the beginning and treatments are better than they where 14 years ago. How in the H*ll to I get someone to listen? They just pawn me off on someone else. I have even taken all my information to my doctor and she kept saying was no, no, no, thats not right for and your headache. Why is the last word on Cluster (Headache) when you use that headache word they act like you need is a pill.

Title: Re: Doctor pushing you off on someone else
Post by Bob_Johnson on Dec 23^rd, 2005, 8:42pm

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf
------
Sadly, it's too common to find a doc who has the ability to listen and work carefully through the complexities of cluster. Try and find a doc/clinic which specializes in headache: they most likely to have the skills and attitude needed.

The truth is, the most effective treatments are meds--both to abort and prevent cluster. But reviewing this article will give you an excellent overview of current thinking by one of the better headache docs in the U.S..

Title: Re: Doctor pushing you off on someone else
Post by llreed on Dec 24^th, 2005, 9:55am

Hello Bob,
Thank you for the information - I am new at this so I entered in two different places. Good information. On the 13th I go see a doctor who actually suffers from CH. I am hoping he will be a great support for this. I do know not everything works for everybody but it's sounds like all of you have educated yourselfs very well.
Thank you very much -llreed :-*

Title: Re: Doctor pushing you off on someone else
Post by E-Double on Dec 24^th, 2005, 12:24pm

Print that out as well as other info provided to you on your other thread!

Knowledge is your friend and like many of us you will have to educate your doctor.

Title: Re: Doctor pushing you off on someone else
Post by BMoneeTheMoneeMan on Dec 27^th, 2005, 12:09am

Llreed, welcome.
The docs can be a pain in the ass for sure. I think a lot of the reason is they just have no idea about CH. When you go see this doc, you need to be prepared to teach. If this doc HAS CH, you can probably be a big help to both of you, but he has to write the scripts.
Have you tried a triptan abortive? like Imitrex injections?
Have you tried Oxygen at 15 litres per minute?
Have you tried any other preventatives?

Back when you had that neuro years ago, what was it that you did then to get relief?
Good luck with getting relief. That appt sounds like a long way off, any way to get it sooner than that?
PF wishes
BMonee

Title: Re: Doctor pushing you off on someone else
Post by llreed on Dec 27^th, 2005, 7:35pm

BMonee,
Neuro in 1993 dia- me with CH
Was put on Amptriptalyn - didn't spell that right
Obortive was - suppository Eforgot - can't spell worth a shit. ( this did help ) DON'T DRINK****
Neuro - retired 6 months later - >:(
Had about 6 different Dr. after him - just keep upping my amptriptalyn / obortives midrin, caffergot, lots of trips to the emergancy room: about $25,000 worth. Finally a family practice Dr. gave my first Imetrix shot in 1998 - still kept me on the amptriptalyn. Now I had a couple of Neuro's take me off everything to detox, so trusting them I lived in my closet for 3 months - wishing someone would just kill me because I'm too much of a P*@sy to do it myself.. Been to Denists, and Chiropractors, Even got my tubes tied because one doctor thought it was hormonal. About 3 years ago gave up on all the specialist in the neuro field and went back to family practice - she took me off the amptrip- and put me on proprananol and let me have my Imetrix for obortive, 3 months later I was good and actually did great for an additional 2 years PF. 2 Beutiful years - But Hello it's back with a passion like none before. Same Dr. from 3 years ago - now I have Tegretol, Topamax, and Midrin for obortive - She won't perscribe any shots said they would cause rebounds, but she did give me Vicoden (which from what I hear is a NO NO!!) I did take her some of my own research about different treatments - she said none of them were right for me, I should had been a shit about the O2 but I just looked at her dumb founded. My bad - Anyway - got the new doctor lined up and I hope to God he is for real. Did you like the history lesson? Sorry about that I ramble when I get upset about my treatment over the years and how I really let alot happen to me by not taking charge. That will teach you to ask questions. :-*
Your too Cool - Talk to later - llreed

Title: Re: Doctor pushing you off on someone else
Post by BMoneeTheMoneeMan on Dec 27^th, 2005, 8:00pm

Im glad you know what works.....now getting it is vital.
We all know where you are coming from with this damn CH, try to stay strong just a little longer til you get some relief.
You said you took Propranolol for the clusters? This isnt a popular med for clusterheadaches, but verapimil which is very similar is very popular as a preventative. Im sure you have read about it here, its worth trying.
GL and stay strong
Where are you at? Maybe someone here knows a doc in your area.
PF wishes
BMonee

Title: Re: Doctor pushing you off on someone else
Post by Opus on Jan 1^st, 2006, 2:20pm

on 12/27/05 at 19:35:07, llreed wrote:

let me have my Imetrix for obortive, 3 months later I was good and actually did great for an additional 2 years PF. 2 Beutiful years - But Hello it's back with a passion like none before. Same Dr. from 3 years ago - now I have Tegretol, Topamax, and Midrin for obortive - She won't perscribe any shots said they would cause rebounds,

A lot of us get rebounds ha's from the full 6 mg shots. For a lot 1/2 or 1/3 shots work just as well. See the Imitrex button to the left. Doing that was a pain for me so I asked my Doc for vials and syringes. They are cheaper and they put a little extra meds in the vials. I can get 3-20 unit shots out of each vial. Make up the shots before hand, and keep them in a hard eyeglass case. I found the 1/2 cc, 29 gauge shots are the best for me. If you find that 1 ,1/3 shot doesn't work occasionally you can still take 2 more shots and still be safe.

Opus/Paul

Title: Re: Doctor pushing you off on someone else
Post by llreed on Jan 1^st, 2006, 8:10pm

Hi Paul,
Great PF New Year Morning... Thanks for the advice.. I am currently down sizing my shots - I read the tip. I know I have been taking to much.
Stay Cool - All the best. PF wishes ;)
llreed