Click this link to read a post I like on the clusterheadaches.com message board...

Sep 29^th, 2024 at 6:24pm

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Skipped last year....The Beast is back.

(Moderators: DJ, Mrs Deej)

‹ Previous Topic | Next Topic ›

Pages: 1

Skipped last year....The Beast is back. (Read 1127 times)

godsjoy777

CH.com Veteran

Offline

HIS name is above clusters

Posts: 182
x0|Grand Prairie, TX|USA||0|0|
Gender: female

Skipped last year....The Beast is back.
Jul 29^th, 2011 at 8:41am

Today I am exactly 4 weeks in to a "usual" 12-16 week cycle. I was taking fish oil already but have ramped it to 3000 and about to go up to 4000. I get a very good form of it at the Dr's office where I work. I also have increased my vitamin D from 5000IUs to 15000-20000 daily. I had been only getting hit once per night or so but it ramped up to 5 hits last night....bummer. I take care of these with my O2....Thank you Batch for the info on the higher regulator etc....My Neuro is a firm believer in Sansert as a prevent and although I haven't used it before I want to avoid an ER trip this time. Tried Varapamil a long time ago but the fact that I already have low blood pressure it only lowered my BP waaay too low and I had a 9 month cycle...The sadest part here is that Sansert not only is not available in the US anymore, Canada has discontinued it as well....I guess Cluster sufferers are not money for Big Pharma....How I wish I could get through on the O2 alone.....I finally ordered my Sansert and sent the RX to them yesterday....I should be coming from the UK and will probably take 3 more weeks....YIKES! Any suggestions?????
Love to you all!
Karen

IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Skipped last year....The Beast is back.
Reply #1 - Jul 29^th, 2011 at 8:58am

Sorry to hear the beast hasn't forgotten where you live. Cry

For the night time hits, have you tried melatonin yet? Start with 10 mg about 30 minutes before bed time. May have to adjust the dosing up or down, give it a few days to see if it's effective. There are several different "types" of melatonin out there, read the label carefully, this is the formula we've seen the best results from:

n-Acetyl-5-Methoxytryptamine.

Some people take a combo of both the immediate release (to get to sleep right away) and the time-release (to stay asleep).

I drink a sugar free Red Bull as I abort with oxygen. It seems to speed the abort and more importantly acts as a bit of a prevent and pushes back the come backer attack.

The only other suggestion is Lithium as a prevent. Been my prevent of choice forever, still blocks 60-70% of my attacks on cycle. Wishing you a short cycle this go round.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

IP Logged

godsjoy777

CH.com Veteran

Offline

HIS name is above clusters

Posts: 182
x0|Grand Prairie, TX|USA||0|0|
Gender: female

Re: Skipped last year....The Beast is back.
Reply #2 - Jul 29^th, 2011 at 12:42pm

Thanks Joe,
I do take Melatonin. In cycle I take anywhere from 15 to 21 mgs. per night. Right now I am at 15mg....My Neuro gave me a 3 samples of TrexaMet that I can take along with O2 and I can get a whole night's sleep, but I am trying to save them for later in cycle. I won't take them back to back because of possible rebounds. My Insurance won't cover them either and they run about $27 per pill.
Insurance won't cover my O2 either but I won't give that up. It is definately worth every penny. I guess I will go up on my Melatonin for now and see what happens and then wait for the Sansert. I appreciate any suggestions....I am just glad for the fellowship!

Blessings!
Karen

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Skipped last year....The Beast is back.
Reply #3 - Jul 29^th, 2011 at 2:53pm

Hey Karen,

Don't forget the calcium citrate tablets. Try washing them down with a big glass of lemonade just before the evening meal. Calcium citrate and the citric acid from the lemonade combine in the stomach to form a buffer that should elevate your arterial pH to the upper end of the normal range. This will help stimulate vasoconstriction and that should help make the CH triggering mechanism less effective.

I've also kept a running tally of reports from CH'ers using the ant-inflammatory regimen. What is becoming clear is the time required to reach a therapeutic response with symptomatic relief after starting this regimen appears to be directly related to 25(OH)D levels, the serum level vitamin D3 metabolite.

The lower the 25(OH)D level, the longer it takes for a significant reduction in CH frequency/severity and three weeks to a month for this to happen is not uncommon.

Dr. Peter Lewis, MD, an Integrative physician in Australia treats patients deficient in vitamin D3. He indicated from his experience, it can take up to three months at a daily dose of 10,000 I.U. vitamin D3 to elevate 25(OH)D levels from 50 nmol/L (deficient) to 150 nmol/L (middle of the normal range).

Hope this helps. Hang in there and please keep us posted.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Skipped last year....The Beast is back. Reply #4 - Jul 29^th, 2011 at 9:28pm Sorry it's back. It'll pass as you know. I'm a firm believer in melatonin as well! I hate trex but had to use it quite a bit during chemo because I couldn't risk any potential bacteria from tubing of O2. This was first time it didn't affect me adversely. Thank g-d ! Hugs to you and may it be quick! Eric
Back to top	I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again. IP Logged

godsjoy777 CH.com Veteran Offline HIS name is above clusters Posts: 182 x0\|Grand Prairie, TX\|USA\|\|0\|0\| Gender:	Re: Skipped last year....The Beast is back. Reply #5 - Jul 31^st, 2011 at 6:54pm Hi Eric, Thanks for the well wishes.....so sorry to hear you had to have chemo....I didn't know....I am saving my samples of TrexaMet for when I really need a good night's sleep... Blessings my friend, Karen
Back to top	IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!