Author |
Topic: NO help! (Read 398 times) |
|
kimmiedawn81
CH.com Alumnus
New Board Hall of Famer
Stuck in the middle with you!
  
Gender: 
Posts: 1426
|
Well, I went to a new neurologist today, the result was very frustrating. I told him all of the prescriptions that I had taken in the past and the ones I am on now and he told me basically that I was screwed and I'm a part of a minority of cluster headache sufferers who have nothing that helps them. I'm 22 years old and he said that my clusters may get better when I go through menopause. I can't wait that long, I fear that I will commit suicide by then. If anyone has any thoughts or comments, please let me know, I'm open for any suggestions at all.
~Kim
|
|
 IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender: 
Posts: 1351
|
 |
Re: NO help!
« Reply #1 on: Jun 14th, 2004, 2:46pm » |
 Quote  Modify
|
Goto another neuro....
What are your past andd present meds?
|
|
IP Logged |
Chris
|
|
|
kimmiedawn81
CH.com Alumnus
New Board Hall of Famer
Stuck in the middle with you!
Gender:
Posts: 1426
|
|
Re: NO help!
« Reply #2 on: Jun 14th, 2004, 2:50pm » |
Quote Modify
|
Right now I'm on Verapamil, Inderal LA, and Lithium. I have taken Elavil, Neurontin, etc. As far as abortives go, I have taken Imitrex NS and pills, Zomig NS and pills, Maxalt, I tried O2, but I did not have the non breather mask. It's hard for me to take pills as abortives b/c I throw up a lot when one comes on. I'm at the end of my rope.
By the way, the doc wrote me a script for Topamax 25mg bid. Haven't picked it up yet, no insurance, kinda scared to see the price.
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: NO help!
« Reply #3 on: Jun 14th, 2004, 3:24pm » |
Quote Modify
|
You don't actually have to use a rebreather mask. You just have to flood your body with as much O2 as fast as possible. I use a welding tank and regulator with a 1/2" hose that allows me to suck as much O2 as i can possibly breathe very quickly, and I can normally knock a headache out in less than 5 minutes.
I don't have insurance either.... So the welding O2 is a much cheaper option. About $200 for the tank/regulator and hose, and $18 to refill an E tank which will kill about 20 headaches.
Did you ask about imitrex injections or are you still nervous about using them?
O2 (if you get enough of it...) and the injections are your best options for abortives.
The topomax works pretty well for some people.
PM me if you want more info on how to get O2 the easy way. I just about guarantee I can teach you how to kill headaches in a heartbeat.
|
|
IP Logged |
Chris
|
|
|
kimmiedawn81
CH.com Alumnus
New Board Hall of Famer
Stuck in the middle with you!
Gender:
Posts: 1426
|
|
Re: NO help!
« Reply #4 on: Jun 14th, 2004, 3:26pm » |
Quote Modify
|
how do I pm you?
|
|
IP Logged |
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: NO help!
« Reply #5 on: Jun 14th, 2004, 3:27pm » |
Quote Modify
|
I would try a different neurologist. If that doesn't help, then you might look at
http://www.clusterbusters.com
There have been many people that have taken this route with great success.
Gator
|
|
IP Logged |
|
|
|
Giovanni
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 764
|
|
Re: NO help!
« Reply #6 on: Jun 14th, 2004, 3:27pm » |
Quote Modify
|
Have you tried any home remedies? Some of us had success with melatonin one hour before bedtime. I believe between 3mg - 15mg for clusterheads. I've had luck at 9mg. This in combination with B-complex 50 mg X 3 a day. Perhaps some 5-HTP 50's two or three times a day. Throw in a multi-vitamin. Some green and black tea 3-5 times a day.
Please note, that I am NOT prescribing medication to you only relating what has help me in the past to some degree (as well as others). 5-HTP can not be taken along with some types of prescription medication...read warning on internet.
All of the above is readily available at GNC or other vitamin stores. I hope you have relief soon.
You can purchase a non-rebreather mask on the internet cheap:
http://www.medco-school.com/Fast/Product.asp?leaf_id=64041&Section=4 2&Subsection=299
http://www.jlenterprise.com/nrbmx.html
Regards,
John
|
|
IP Logged |
|
|
|
Lobster
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2016
|
|
Re: NO help!
« Reply #7 on: Jun 14th, 2004, 4:41pm » |
Quote Modify
|
Still not certain why everyone insists on seeing a neuro. I take my shopping list from here to the GP with excellent results. I suppose it depends on how comfortable one is with their GP.
Wrokk, with the kickass GP
|
|
IP Logged |
Rock beats Scissors.
|
|
|
Giovanni
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 764
|
|
Re: NO help!
« Reply #8 on: Jun 14th, 2004, 4:56pm » |
Quote Modify
|
Quote:Posted by: Rock_Lobster Posted on: Today at 4:41pm
Still not certain why everyone insists on seeing a neuro. I take my shopping list from here to the GP with excellent results. I suppose it depends on how comfortable one is with their GP. |
|
Me either Rock.........one more year with the mushrooms and I can fire both of them! 
John
|
|
IP Logged |
|
|
|
thomas
Guest
|
on Jun 14th, 2004, 4:41pm, Rock_Lobster wrote:Still not certain why everyone insists on seeing a neuro. I take my shopping list from here to the GP with excellent results. I suppose it depends on how comfortable one is with their GP.
Wrokk, with the kickass GP
|
|
Because I have to have a nuero write my scripts for zomig, since I require more than the alloted amount.
|
|
IP Logged |
|
|
|
Prense
CH.com Alumnus
New Board Hall of Famer
Kerry is an idiot!
Gender:
Posts: 1607
|
|
Re: NO help!
« Reply #10 on: Jun 14th, 2004, 6:27pm » |
Quote Modify
|
on Jun 14th, 2004, 5:08pm, thomas wrote:
Because I have to have a nuero write my scripts for zomig, since I require more than the alloted amount. |
|
Additionally, it would be foolish and dangerous to treat CH if you don't actually have it. Neuros are not necessarily great at diagnosing CH, but they look out for other indicators.
Also, an E tank provides enough O2 for 5 hits for me. The fifth hit is a little short at 15 lpm for 13 minutes. Even at that flow and duration, my success rate with it is only 30% at best.
YMMV
Chris
|
|
IP Logged |
Where does the white go in a snowman when the snow melts?
|
|
|
thomas
Guest
|
on Jun 14th, 2004, 6:27pm, Prense wrote:
Additionally, it would be foolish and dangerous to treat CH if you don't actually have it. |
|
WHAMMMO!!!!!!!! Well said, brother. That is the truth.
|
|
IP Logged |
|
|
|
jonny
Guest
|
on Jun 14th, 2004, 6:27pm, Prense wrote:| Additionally, it would be foolish and dangerous to treat CH if you don't actually have it. |
|
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: NO help!
« Reply #13 on: Jun 14th, 2004, 7:21pm » |
Quote Modify
|
You might try getting some help at Barnes jewish Hospital next to George Washington University. My mom had brain surgery there and they have an excellent neuro dept. That's one of the finest hospitals in the world and I know they MUST have a good cluster doc there...
|
|
IP Logged |
Chris
|
|
|
Ueli
Guest
|
Kim, run, don't walk!!!
A doctor who prescribes at the same time calcium channel blockers (Verapamil) and beta blockers (Propranolol(Inderal)) is playing with your life!
From the Drug Interaction Checker at Drugs.com:
propranolol and verapamil (major Drug-Drug)
Description:
MONITOR CLOSELY: Additive reductions in heart rate, cardiac conduction, and cardiac contractility may occur when calcium channel blockers, especially verapamil and diltiazem, are used concomitantly with beta blockers. While this combination may be useful and effective in some situations, potentially serious cardiovascular adverse effects such as congestive heart failure, severe hypotension, and/or exacerbation of angina may occur....
Get another doctor ASAP.
PFNADs
Ueli 
|
|
IP Logged |
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: NO help!
« Reply #15 on: Jun 14th, 2004, 9:44pm » |
Quote Modify
|
on Jun 14th, 2004, 5:08pm, thomas wrote:
Because I have to have a nuero write my scripts for zomig, since I require more than the alloted amount. |
|
Amen brother. With my insurance a GP can only write for 6 Zomig NS per month. A neuro can give me as many as I want. I now get 30. The insurance companies are out to screw everyone else over, it's kind of nice to use their own rules against them for a change.
Gator
|
|
IP Logged |
|
|
|
justin
New Board Veteran
what it is...
Gender:
Posts: 211
|
|
Re: NO help!
« Reply #16 on: Jun 21st, 2004, 5:37pm » |
Quote Modify
|
yeah first thing, new doc. then i would ask about verapamil instead of the inderal. imitrex injections have probably saved my life. nothing aborts an attack like those injections, but they are expensive. insurance will cover anywhere from 8-12 injections a month. not always enough so my neuro gives me plenty of samples when i come by and will always get me more if i need. also the O2 is good for the weak ones since you can only take two imitrexes in a day anyway. and i think you said you never tried depakote, right? it's had a lot of success for people.
|
|
IP Logged |
if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
|
|
|
miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
Gender:
Posts: 676
|
|
Re: NO help!
« Reply #17 on: Jun 29th, 2004, 10:24pm » |
Quote Modify
|
o2 o2 o2
As for the depakote . . I'm always amazed at the use of this drug. Depakote works on the frontal lobe . . .and since the hypothalmus isn't located in the frontal lobe, I don't see how it works?
*positive light and energy*
miapet
eidt: as for the no insurance part . . .your doc should have forms (or can ask the drug rep for some) that he/she fills out with you, and sends in to the drug company . . .sometimes the drug company will supply meds for you . . .not always, but it's worth a try.
*pl&e*
miapet
|
| « Last Edit: Jun 29th, 2004, 10:25pm by miapet » |
IP Logged |
Clusterbusters Rock
www.clusterbusters.com
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss