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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> I spoke too soon... what a coincidence!
        
(Message started by: Sonnie_Parker on Dec 9^th, 2005, 1:56pm)

Title: I spoke too soon... what a coincidence!
Post by Sonnie_Parker on Dec 9^th, 2005, 1:56pm

It was only a couple of weeks ago that I came back to this forum and was sharing my experiences of not having ch's for 5 years as a result of taking Depakote 500mg ER.

Low and behold a couple of days later out of nowhere I started getting that sensation of "I think this is going to be a ch." A few days later... THEY ARE BACK!

UNBELIEVABLE!

I'm not superstitious but it is totally amazing how I went 5 years and all of the sudden they are back. Fortunately they were the milder 4-6 pain, still not fun by any means.

I thought for a while maybe I had gotten a bad batch of Depakote and it has wore off.

Anyway... after about 4-5 days of realizing they were really back I immediately got with my doctor. He stated that it was not unusual for someone with seizures taking Depakote to go 5 years with no seizures and then suddenly start having them again. The body gets accustomed to the Depakote levels and it no longer has the same effect.

We decided to try the steroid dose-pack to see if it might break the cycle as it did in the beginnings many years ago. Worked like a charm for the first 7 days then last night.... WHAM! At 12 midnight I'm sitting at the computer and the mother of all ch's hits me... a full 10 within 15 minutes.

Of course I'm thinkin' it will be gone in 35-45 minutes... racing with the clock. No go... it lasted a full 2 hours and 10 minutes... the longest I can ever remember.

So off to my doc this morning I go... we are increasing the Depakote to 1000mg per day since my actual blood levels are running super low. Also got Imitrex injections along with the good ole oxygen tank/mask and a oxygen concetrator (compliments of my mother-in-law who works at a medical supply company).

The foot fits well into my mouth on this one. I certainly spoke too soon!

Title: Re: I spoke too soon... what a coincidence!
Post by Karla on Dec 9^th, 2005, 3:20pm

So sorry to hear that they have returned. When I would get hit It was always 1 1/2 hrs long 8x/day. So for 16 hours I was basically useless. I am on meds now that have kept me pain free for over 2 years. I have been blessed considering I was chronic for over 6 years.

I don't know if raising the depakote is going to help but the oxygen should be a godsend to you along with the imitrix. Start the oxygen when you are at a low kip level like 3 or 4. Don't wait for it to rage before you start the o2. Good luck!! Ill be praying for you for relief. If you get hit at night you may also want to look into taking meletonin5-10mg over the counter. It allows most get get in more sleep and keeps some hits away. Do a search on it and you will see how many this has helped.

Title: Re: I spoke too soon... what a coincidence!
Post by Sonnie_Parker on Dec 9^th, 2005, 3:32pm

Thanks Karla...

o2 worked beautifully last time before I was on Depakote.

I'll check out the meletonin.

Title: Re: I spoke too soon... what a coincidence!
Post by zanychef on Dec 9^th, 2005, 4:46pm

might i suggest hitting the o2 as soon as you notice it coming on ,dont wait for it to get to k3-4
you will use less o2 and achieve results quicker
Ian

Title: Re: I spoke too soon... what a coincidence!
Post by Jonny on Dec 9^th, 2005, 9:49pm

on 12/09/05 at 16:46:16, zanychef wrote:

might i suggest hitting the o2 as soon as you notice it coming on ,dont wait for it to get to k3-4
you will use less o2 and achieve results quicker
Ian

BINGO!!