Hey folks!

I haven't been to this site in over a year! I tried logging in and it didn't recognize me?? I've been with this site for 7 years!! Wth? My old username was cdismus.

ANYWAY, I'm in my cycle. This is my fourth week into it.

Here's a list of my cluster meds that I take to help me barrell through...

a.) Prednisone taper starting at 80mg
b.) Imitrex/Sumatriptan Injections

I also have have a list of DAILY meds prescribed NOT for clusters, but other health issues..

a.)Paxil ER
b.)Alprazolam
c.)Remeron (sleeping pill)
d.)Norco

I started my ch cycle 4 weeks ago. I called the doc and he started me on my usual pred taper with my trex to abort.
All was working as usual and the ha's were almost gone and on my 2nd to last day of tapering, I got a cold :(
As the cold went away, my ha's came back!

The doctor won't prescribe anymore pred for me and I got scared because I have to REALLY make my trex last!!

My back kinda went out on me yesterday, so I took a Norco. Two hours after taking it, I got slammed with a headache.

Has anyone ever had an issue with Norco actually TRIGGERING a cluster? I am afraid to take that now! Or do you think that I'm overeacting a bit?

I'm a smoker so I do not use oxygen.
I have a love/hate relationship with triptans
(The shot works in 5 minutes! I love that. The hate is the seratonin syndrome that can arise because I take Paxil which is an SSRI.)

I've never had an issue with my norco for the past 5 years during my cycle.

Any thoughts, advise, experience is welcomed.

This has been one crappy holiday season!!!!!!! :-[

I can't answer your questions, mate, but thought I'd jump in anyway to say G'day so you know you're back among friends.

There's many knowledgeable people here ever willing to help.

Welcome home.

One more thing that I wanted to add to my post earlier...

My son, who is 17 now started developing headaches two years ago...(episodic also)

With him, he has his on his right side. It literally KILLS me to see him suffering that same pain! Weird thing with him is he only has them for like two days. I wonder if he may be just migraine, but them sometimes I wonder if/when he'll start adding days as he progresses throughout life?

My 19 year old daughter was recently diagnosed with Multiple Sclerosis this past April, so I apologize for not having been engaged in the ch site for some time.

I've been researching to no avail about any possible trigger between the norco actually causing a flare, but I get zilch.
For now, I'll cut out the norco. I'll take my herniated disks all day, everyday over a cluster!!

I'm glad to be back again. I'll be catching up on posts in the message boards

Took a Norco at the start of an attack once.  All it did was mask the start of the attack so I didn't get on the O2 early enough.  Had one of the worst attacks of my life, down on all fours, dripping sweat from head to toe, wondering if my heart could stand the strain! 

Since then I save the norco for recreational use.

cdismus

Sorry you are back!

"I'm a smoker so I do not use oxygen."

I too am a smoker but have used O2 for years...it is a life saver and will abort your CH in minutes if you catch it early.

As long as you don't smoke while using O2 (duh) and after using go to another room to light up..it is safe and a lot healthier than taking a bunch of pills.

Cdismus,

You're a smoker so you don't use oxygen......why?

I was a smoker for years and use oxygen for almost every attack. By the way,  I gave up in September and it has made no difference to my CH.

Have you looked at the D3 regimen? It has done wonders for lots of us and can't hurt your general health.

Your son needs to get a proper diagnosis for his headaches, from a Headache Specialist, not just a Neurologist.

Read all you can here on D3 and ask questions. Then try it.

Best wishes,

Peter.

My neuro, who is a headache specialist won't prescribe me the oxygen to me for two reasons....

She won't prescribe high enough lpm to effectively abort, and she's on my ass about the smoking....

I do extremely well with the imitrex shots anyway. It's just a pain in the rear that I have to jailbreak my shots out of that epi pen that it comes in to make them into 4 shots instead of one.

Ya know, on Bob's reply, when he mentioned that he had the worst one and broke down on all fours, drenching in sweat, he reminded me of the one I had last night. Mainly when he mentioned drenching in sweat. I thought I was the only one who did that ( being female? Idk)

That's always bothered me that I have always thought it was just me who would ramp up to feeling like I was 200 degrees and within minutes, I'd be ice cold.

I'm SO glad I can log back in and post again. I was starting to feel isolated. I was craving a sounding board  :-X

Is your doc using a long acting preventive, such as Verapamil, after a short run of the Pred? If not why not?

Does she know how your cutting the Imatrex dose? I'm a bit surprised that you getting relief.

Ask her if see would consider the following. I had 100% relief with it: fast acting; low per dose cost; for some, it stops the Cluster totally. (Print this and give to her.)
=========
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

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% in four of five 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.

PMID 11576207 PubMed

---------------------------------------------------------------

IMHO..you need a new Neuro or you need to push this one to prescribe O2.

My Neuro knows I smoke and just gave me the usual warnings however she had no problem prescribing O2..8 - 10 LPM (no problem there, the regulator goes up to 15LPM) and it will kill my hits without using drugs.

I wake up sweating with my hits and at times have ended them with shivering for awhile, sometimes shaking like a leaf. I sometimes think it's a release of adrenalin from "the battle".

Glad you are here and don't ever feel alone.
Judy