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        New Message Board Archives >> 2002 Posts >> Hello, I'm back and glad to see ya'll still here
        
(Message started by: DuckFlorida1 on Nov 15^th, 2002, 9:07pm)

Title: Hello, I'm back and glad to see ya'll still here
Post by DuckFlorida1 on Nov 15^th, 2002, 9:07pm

Well let's see I think the last time I posted was back in March or April, well boy oh boy has sh*t hit hit the fan since then, but at least I'm glad to see that the group here is growing and hopefully making some headway.

For those of you that don't know me, I have been chronic for 5 yrs but only diaginosed ( ya I know I can't spell ) 2 yrs ago and that was by a freak accident that I got a neuro that had just read an artical in a medical journal about cluster headaches the day before and when I described my problem he pulled out the mag and then looked it up in the PDR and made the call, kinda really freaked me out that I had lived with this type of pain and this little smart ass doc was having a great laught cause he got to make a quick call without working, but anyway, so we started the preventatives, well, I guess there aren't too many left to try before my luck is gonna run out, cause I've been thru the med-cocktails morning, noon, and night, using about 6 hrs of O2 a day @ 15LPM and still not able to get a little break the cycle this time, usually I can get at least a few days and even a week or so that are just like lite ( under 6's on the Kip ) but as of late or for the last 2 months its been like hell, even with the cocktail ( 240 Verap, 300 Topamax, 500 Depakote, 200 Indomethacin) x 2 per day. I get hit on average of 6 to 8 times a day and they last between 35 min to 2 1/2 hrs, the worst ones are the midnighters though wish I could get them to go they always are hard 10's, but that's my life, so just thought I would say hi and let ya'll know I'm bbbbbaaaaaaaacccccckkkkkkkk.

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by Ueli on Nov 15^th, 2002, 10:18pm

Hi Duck,

Show your neuro another article, by Prof Peter Goadsby and Dr Manjit Matharu:

http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature

where they say: "Up the verapamil until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved."

PFNADs
Ueli

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by Peppermint on Nov 16^th, 2002, 6:12pm

Ueli...
Thank you for that link.. it was something I've beem looking for sporadically but haven't really had time.
A fellow clusterhead of mine will certainly appreciate it....his neuro's given him a hard time with upping the verapamil - this might help.
Crossing fingers...
Peppermint

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by Jackie on Nov 16^th, 2002, 6:32pm

on 11/16/02 at 18:12:53, Peppermint wrote:

A fellow clusterhead of mine will certainly appreciate it....

ummm...didn't realize you had clusters... ??? ;)

Jacks 8)

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by Peppermint on Nov 16^th, 2002, 7:21pm

NOPE... I do NOT.. that's cute Jackie 8)

FYI... I'm not perfect.. though I REEEEALLY TRY - ;).. and I chat online with people while I visit here...

so I fucked up in typing my message - its been pretty clear on this mb that I am not a clusterhead - this is nothing new...

To satisfy your curiosity.. and for no other reason but that...
I was typing "a fellow clusterhead of yours" and then got an MSN invite to chat... and when I came back to finish my message... I was thinking "clusterhead of mine" and never edited it properly.

Hope that's good enough - and if its not....
Que sera, sera..
;)
MINT

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by Jackie on Nov 16^th, 2002, 7:44pm

on 11/16/02 at 19:21:40, Peppermint wrote:

.. that's cute Jackie 8)

Well....thank you, Peppermint ;D

Jacks 8)

Title: Re: Hello, I'm back and glad to see ya'll still he
Post by DuckFlorida1 on Nov 18^th, 2002, 10:51pm

Sorry for the delay, don't have a lot of time on the computer these days with a 8 yo neice in the house!

My neuro up'd the verap to 240mg today ggain ang we are gonna try it for a while, last time I had major problems with the higher dosages and had to be taken off all meds except the O2 for 3 months then re-started the cocktails, so its been a lot of fun. don't want to go that route again, but it looks like its coming. well catch ya'll later, it's time to get ready for the "cast iron skillet in the head" later