Author |
Topic: Advice (Read 321 times) |
|
reinholdt2
New Board Newbie
Posts: 3
|
My husband suffers CH, seems to be in the middle of one of the longest cycles he has ever had. And the worst yet. He used to get them every couple of years, seems like they will now hit every year.
Starts off with nasal spray imitrex, works his way into injections and they work but you can only take 2 a day besides the insurance will not cover them and they run 180.00 for 4 shots.
Yesterday even 2 shots an hour apart would not take it away. So we went to the ER, he received 2 shots of demeral (sp) 2 oxycodone and tramadol. this mad cocktail only took the pain down from a 12 to a 5-6 not alot of relief for so many drugs. And the pain was back in full force 3 hours later at which time he could take nothing since they had already maxed him out.
Today the DR started topamax what I am seeing on here about it does not really sound to positive but he needs to break the cycle so I guess we try it.
If this does not work by friday we are to see a nerosurgeon. Anyone have deep experience with them?
I am wondering if they are true CH the cycle sounds right but his can last HOURS at a time. I am thinking migraines anyone tried botox for these demons? I have read real positive things on botox treatments for migraines. Do not have a real clear idea on the differences.
any advice... sorry if I sound stupid just getting my feet wet here.
|
|
 IP Logged |
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender: 
Posts: 4556
|
 |
Re: Advice
« Reply #1 on: Jan 25th, 2005, 2:13am » |
 Quote  Modify
|
Say What? Your doc is giving Topamax only 5 days to work before he sends you to a neurosurgeon? It takes 6 weeks for Topamax to reach therapeutic levels, although you should start seeing some effect sooner.
If you have not already done so, read everything in the links on the left and on the OUCH website. The best way to help yourself is to be informed.
Here is a link to a paper that tells about Preventative, Abortive, Transitional and Surgical treatments. Read through this and maybe print it out and take it to his doctor.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
A lot of people here have had tried the surgical techniques. Most of them failed to relieve the CH.
Here is a link to stories of people who have tried surgical treatment for their CH.
http://www.chhelp.org/treatments.html
I don't know what all has been tried, but there are a lot of treatment options available before considering surgery. It's ultimately his decision, but you need to study and know the pros AND cons.
Good luck,
Gator
|
| « Last Edit: Jan 25th, 2005, 2:20am by Gator » |
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: Advice
« Reply #2 on: Jan 25th, 2005, 4:46am » |
Quote Modify
|
Quote:| I am wondering if they are true CH the cycle sounds right but his can last HOURS at a time. |
|
IMHO 'HOURS at a time' does not sound like cluster headaches. I suppose it could happen but most really long ones are only a couple hours at the most. Usually they will last 20 to 60 minutes.
Quote:| sorry if I sound stupid just getting my feet wet here |
|
Please don't ever think that asking questions is stupid. The more you ask the more educated you'll be to find the correct diagnose.
Welcome to the board.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
JJA
New Board Old Timer
Gender:
Posts: 279
|
|
Re: Advice
« Reply #3 on: Jan 25th, 2005, 8:19am » |
Quote Modify
|
Wait, wait wait.... A neurosurgeon or a neurologist?
You said he used to get them every few years, but now he gets them every year, implying there're episodic? (go into remission for months at a time) No neuosurgeon will touch an episodic cluster sufferer, especially before trying all medical routes first. If I'm wrong, RUN out of that neurosurgeon's office!
Jesse
|
|
IP Logged |
Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: Advice
« Reply #4 on: Jan 25th, 2005, 8:48am » |
Quote Modify
|
Good point Jesse. I missed that 'surgeon' part on the end of 'neuro'.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender: 
Posts: 3757
|
|
Re: Advice
« Reply #5 on: Jan 25th, 2005, 10:32am » |
Quote Modify
|
Hi Reinholdt
First of all....you don't sound stupid at all. Good for you for taking the step to research your husband's pain. THAT's the best thing you can do for him.
OK...you can't cut these headaches out....so, uh,
bag the neurosurgeon idea.
When you say these are lasting hours and hours, how many hours are we talking here? It could be that the meds are causing rebounds and those narcs they gave him aren't going to do diddly for cluster. Also, doing that much imitrex can cause more attacks to happen. Have you taken the cluster quiz on the left here for him? It's a good diagnostic tool. And read the Cluster Traits, that might help you differentiate between cluster and migraine.
What about oxygen, can you look into getting him some? Button to the left here has the best information you'll ever find on oxygen therapy.
Next, look into some preventative meds such as verapamil and lithium.
Keep talking - we're here to help.
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
reinholdt2
New Board Newbie
Posts: 3
|
|
Re: Advice
« Reply #6 on: Jan 25th, 2005, 10:48am » |
Quote Modify
|
The nerosurgeon was just to look at other options, not for surgery. Maybe a scan is what the primary said.
He has tried oxygen (come to find out, from here) it was given to him wrong. So cant say if it would have worked or not.
The verapamil did nothing, thats why the topamax doctor said 5 days should be decreasing how often the come, and how bad they are. Sounds like that is not the case either.
I am so glad I found this board. Thanks to everyone.
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Advice
« Reply #7 on: Jan 25th, 2005, 11:01am » |
Quote Modify
|
OK, good - glad to hear the surgeon isn't considering surgery. There's a gamma knife surgery out there that really hasn't had much success but there still are some surgeons who do it.
What dose of verapamil was he on? A lot of doctors won't let their patients go very high on it but there have been a lot of folks here who need to. My hubby didn't find relief from verap until he reached 720mgs a day. You have to ramp up to that high a dose and it does take a couple of weeks for it to get fully into your system. Same with topomax. The side effects are much less with verapamil though, (except for a little binding effect which magnesium supplement helps immensely.)
So, how long are his attacks lasting? And where in his head is the pain?
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss