Author |
Topic: SHHH no CH since Sat. (Read 358 times) |
|
sekaufm
New Board Newbie
Gender: 
Posts: 7
|
 |
SHHH no CH since Sat.
« on: Sep 6th, 2006, 9:22pm » |
 Quote  Modify
|
Hey guys I think I am finally at the end of my cluster! I haven't had an attack since Sat. 
It has been over 2 months for this cluster phase! I have been on Pred., Verapamil, oxygen, and now I'm on Lithium and Verapamil. I e-mailed the doc to see how much longer he wants me on these preventatives.
Thanks to everyone for all your answers and support you gys are truly my other family 
Hope this is it,
smooches,
Sylvia
|
|
 IP Logged |
|
|
|
Chonas
New Board Junior
Can I buy you a drink?
Gender: 
Posts: 95
|
|
Re: SHHH no CH since Sat.
« Reply #1 on: Sep 6th, 2006, 9:27pm » |
Quote Modify
|
Great news...!, but pay attention and try to avoid all kind of possible triggers for a reasonable amount of time... let's say one month.
Take care and I wish you 1*10**75 PFDAN. 
|
|
IP Logged |
Here we go again...
|
|
|
bothofus
New Board Veteran
It's got to get better !
Gender:
Posts: 177
|
|
Re: SHHH no CH since Sat.
« Reply #2 on: Sep 8th, 2006, 4:36am » |
Quote Modify
|
The 2 month cycle sounds familiar.
How long have they lasted in the past?
Always good to hear if even a little relief has come!
Carl
|
|
IP Logged |
|
|
|
LadyC
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 9
|
|
Re: SHHH no CH since Sat.
« Reply #3 on: Sep 8th, 2006, 3:49pm » |
Quote Modify
|
SHHH, I also have not had a CH since the weekend. This would end a 27 week cycle. Let's keep our fingers crossed!
|
|
IP Logged |
|
|
|
bothofus
New Board Veteran
It's got to get better !
Gender:
Posts: 177
|
|
Re: SHHH no CH since Sat.
« Reply #4 on: Sep 8th, 2006, 7:00pm » |
Quote Modify
|
27 week cycle, oh my!!!!!!!!!
I am whispering in case you didn't notice.
PF wishes
Carl
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: SHHH no CH since Sat.
« Reply #5 on: Sep 8th, 2006, 7:39pm » |
Quote Modify
|
Wow, your doc lets you e-mail? That is so cool. I thought they stayed away from that so there wasn't any record of advice given based on incomplete data (i.e., an e-mail from a patient). You know - it's a legal thing.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
Charlotte
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1932
|
|
Re: SHHH no CH since Sat.
« Reply #6 on: Sep 8th, 2006, 9:08pm » |
Quote Modify
|
Sylvia, I hope it's over.
brewcrew, the emails from my doc say they are part of the legal record. My new doc has been great, & very helpful, mostly by email. The neuro has not been helpful.
|
| « Last Edit: Sep 8th, 2006, 9:09pm by Charlotte » |
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: SHHH no CH since Sat.
« Reply #7 on: Sep 8th, 2006, 9:12pm » |
Quote Modify
|
on Sep 8th, 2006, 9:08pm, Charlotte wrote:Sylvia, I hope it's over.
brewcrew, the emails from my doc say they are part of the legal record. My new doc has been great, & very helpful, mostly by email. The neuro has not been helpful.
|
|
I must look into this e-mail connection thing with the doc (neuro). I'm on the phone with his nurse about 2-3 x /week.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: SHHH no CH since Sat.
« Reply #8 on: Sep 8th, 2006, 9:15pm » |
Quote Modify
|
on Sep 6th, 2006, 9:22pm, sekaufm wrote:| now I'm on Lithium and Verapamil. |
|
That cocktail saved my life!!
I hope it works for you as long as it worked for me!
(Dont forget the blood work )
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: SHHH no CH since Sat.
« Reply #9 on: Sep 8th, 2006, 9:29pm » |
Quote Modify
|
Verapamil + Lithium = my magic cocktail as well, although it had become less effective recently. We added methysergide to the mix - Bingo! Headache free since Aug. 21.
If your hands start shaking, get that blood checked right away. It means you're approaching toxic levels. But keep in mind that the level needed for us is less than half what is needed for bi-polar patients.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
wam
New Board Newbie
A mercyful fate is all I ask......
Gender:
Posts: 31
|
|
Re: SHHH no CH since Sat.
« Reply #10 on: Sep 10th, 2006, 12:49am » |
Quote Modify
|
God bless. 
|
|
IP Logged |
|
|
|
big guy
New Board Junior
Gender:
Posts: 99
|
|
Re: SHHH no CH since Sat.
« Reply #11 on: Sep 10th, 2006, 4:41am » |
Quote Modify
|
Brew Crew. Good Luck with the methysergide. I took that years ago and had good luck with it. I didn't think it was still available. I had quite vivid hallucinations for the first few days. Have you experienced that?
Methysergide may fit in with clusterbusters ideas on treatment of CH.
Following quote is from Wikipedia
"Methysergide, UML-491, or 1-methyl-d-lysergic acid butanolamide, is a prescription drug closely related to LSD, and is used to treat migraine headaches. It is sold under the names of Sansert and Deseril in 2mg dosages. Like LSD, methysergide also produces psychedelic and hallucinogenic effects. The threshold dosage for psychedelic effects is 4.3mg. Full effects are felt with dosages of 8-20mg."
Best Wishes
Big Guy
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss