New CH.com Forum
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> Reintroducing myself, been off forum for awhile
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1357107973

Message started by BSBAQE12 on Jan 2nd, 2013 at 1:26am

Title: Reintroducing myself, been off forum for awhile
Post by BSBAQE12 on Jan 2nd, 2013 at 1:26am
Hello all forum members,

I took some time away from the forum in an attempt to get these headaches under control--we all know what's that like. Before introducing myself, I would like to thank all that have taken the time to produce the information found on this site; I can not imagine how many of you went years without proper care or treatment, my first nasty headache had me in a neurologists office the next day.

If you prefer labels, I am diagnosed chronic cluster headache 1+ year with a diagnosis and current 2+ years of intractable migraines. The pain, obviously, is entirely different. My migraines develop from stress, lack of sleep, pressure to complete multiple assignments and certain foods. I have found away to reduce those--forget reduction of the clusters. With the clusters, I have what I call stages "high and low," when the seasons change I get nailed with 4-6 clusters per day, time .5-3hrs long. When the seasons return to normal I return to what I call a low stage, I might get 1 cluster per day 2 at most with time of 15minutes-1hour, sometimes I get a day or two w/o pain. I am sure this could change at any time.

Adding to this mess, I have degenerative disc disease, half my neck is fused as well as my entire lower section of spine (surgeries are pending). Basically, all my remaining discs are herniated, dried, or in poor shape.

I see a Hopkins neurologist that specializes in strokes and has familiarity with cluster headaches. Soon, I will visit the Johns Hopkins Headache Clinic for further evaluations/treatment.

Medications, well we would be here awhile, Lithium, Zonegran, Topemax, to name a few didn't work. Depakote at 1000mg helps, as does the Verapamil at 480mg. I have Imitrex injections, but respond poorly to them (if they work at all). I finally have an Rx for O2 and am supposed to get the bottle and gear tomorrow (will see). 

Additionally, I had Botox done this past week, according to the neurologist it can take a few weeks for the effects to "kick in." It has not done much for the clusters; however, my migraines are gone. I will not scream it is a miracle drug, still to much speculation and it takes more than one shot. Not to mention the expense, with insurance coverage and the pharma company picking up the neuro's bill I still will spend several hundred just on one dose.

I have seen the info for the inflammation supplementation and plan to start in a few weeks; allowing myself enough time to see if the Botox is worth another dosage/shot.

Anything else you want to know then just ask.

Title: Re: Reintroducing myself, been off forum for awhile
Post by wimsey1 on Jan 2nd, 2013 at 8:19am
Hey there friend, and welcome back, although I am sorry you are still in pain. That is the one thing we all have in common: pain and suffering. It sounds like you have a pretty good handle on things, especially with the O2 coming your way. I too am chronic (for more years than I care to admit) and I have found O2 to be the best and most effective abortive. I use a nonrebreather mask attached to a demand flow valve which can deliver up to 60lpm. Aborts in about 3 minutes. It is especially useful when combined with a double Monster chugged at the first hint of an attack. Good luck with yours. You might check out the D3 threads. For some, it has been nothing short of miraculous. Take care, and God bless. lance

Title: Re: Reintroducing myself, been off forum for awhile
Post by Guiseppi on Jan 2nd, 2013 at 9:12am
Welcome back to the board. Take a second and review this link as HOW you use the 02 is critical to it's speed of abort and overall effectiveness. The critical points are high flow 02, at least 15 LPM, preferably 25 or better, pure oxygen to the lungs, no outside air no exhaled air, at a rate to support hyper ventilation. I abort in about 6-8 minutes huffing 02.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Do check out the anti inflammatory regimen, well over 70% are showing positive responses from it.

Joe

Title: Re: Reintroducing myself, been off forum for awhile
Post by Bob Johnson on Jan 2nd, 2013 at 9:42am
Question for you: given the sophisticated folks you are seeking at Johns Hopkins, curious whether they mentioned, or tried, Olanzapine as an abortive for the Cluster?

Title: Re: Reintroducing myself, been off forum for awhile
Post by BSBAQE12 on Jan 2nd, 2013 at 4:25pm
Thanks guys,

@Bob, I have heard the mention of Zyprexa (Olanzapine) but am afraid I can offer no help, I had a serious medical reaction to it about a decade ago. It is safe for most, just not me. What I have heard is that can assist with what you mentioned, if I can find more info from them I will let you know.

@Wimsey @Guiseppi, just tried my first attempt with O2 and whoa, I am having an orgasm right now. Holy @#$% much faster and effective than Imitrex. It works incredible, hope it stays this way. I cannot chug the monster energy drinks; however, I always keep a few starbucks energy drinks in the car, they help in an emergency. My first tank of 02 is small (E tank, will burn through that in no time), it has a non rebreath and flow rate to 15 doctor is running a trial, I have a funny feeling he will have to rewrite for a bigger tank, man I am serious Imitrex never worked like this. Why they must torture us first is beyond me.

Here is something pertaining to Olanzapine Bob From Robbins Headache Clinic START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Objective: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial.

Background: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs.

Methods: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg., and the dose was increased to 10 mg. if there was no pain relief. The dosage was decreased to 2.5 mg. if the 5 mg. dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose.

Results: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80 percent in 4 of 5 patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple-treated attacks. The only adverse event was sleepiness.

Conclusions: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

New CH.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.