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        New Message Board Archives >> 2003 Posts >> New to this site.HELLo!
        
(Message started by: rollo on Jun 28^th, 2003, 8:29pm)

Title: New to this site.HELLo!
Post by rollo on Jun 28^th, 2003, 8:29pm

Hello to all.My name is Rollo and I found this site last nigt as I was onthe down side on a attack where I could see and think straight.I was extremely happy to find that there are other people such as myself who suffer this kind of unspeakeable pain.For years I`ve tried to explain myself for suffering and could never understand why I should bother. "Yeah,I get bad headaches too. Did you try"... or "Maybe it`s your diet"... or "I know this MD that can help with headaches"... I`ve heard them all as I`m sure all of you have. But when they come from your MD, that`s what kills me."Maybe it`s stress", "Maybe it`s ONLY a heat headache"??? "Are you sure it`s a cluster?"It`s all BULLSHIT! Why can`t they just do a little research to find out themselves instead of asking me why do ya` think it hurts.I`m at the end of my rope and the only saving grace is that my family understands. I have a wife of 14years and 11&8 year old girls who hate to see me go through this.The meds sometimes help but the cost hurts more than the headache and I find myself going to work to afford to buy the latest in the series of clusters. Thanks to all who are in this with me.Hope I can help you and you can help me. Peace, Rollo. One other thing. Can anyone tell me why you can only take 2 shots of Imitrex in a 24 hour period,why not 3 ???

Title: Re: New to this site.HELLo!
Post by FrankF on Jun 28^th, 2003, 8:38pm

Hi Rollo! Sorry you have to be here.

Why can you only have two shots of Imitrex in 24 hours? Because Glaxo Smith Kline says so. Means about as much as the government saying that there are WMDs in Iraq.

Title: Re: New to this site.HELLo!
Post by Jackie on Jun 28^th, 2003, 8:42pm

Welcome, Rollo....sorry you have the need to be here but glad you found us. Just knowing you're not alone and people understand can be a comfort in itself.

There is a multitude of good information here and on the OUCH site. Study up on the information when you feel able enough. There may be something there that could help you.

As to the Imitrex....check out the "imitrex tip" (button on the left.....could help you stretch your med.

Good Luck,
Jacks 8)

Title: Re: New to this site.HELLo!
Post by Big_Dan on Jun 29^th, 2003, 2:34am

... Sorry about you're situation Rollo... stick around here, everyone can help you in some way...

... as for WMD's... I'm not going there...

-Big Dan

Title: Re: New to this site.HELLo!
Post by cbolony on Jun 29^th, 2003, 6:44am

rollo Welcome Aboard

Quote:

As to the Imitrex....check out the "imitrex tip" (button on the left.....could help you stretch your med.

Do what jackie said helps a lot of us. The insurance companys are not going to give you a lot of imitrex shots.And then go to medications button on the left side and look at some prevent meds which most of us all take

Title: Re: New to this site.HELLo!
Post by SommelierCH on Jun 29^th, 2003, 7:03am

Welcome Rollo,

Doesn’t it feel good to find this place? You get the latest Cluster developments from the trained monitors scattered throughout the world, tons of medical info (including the OUCH site, free to join) and years of archived Clusterhead experiences.

Short on money? Might as well search the archives and the OUCH site, for less expensive solutions. Everything you could think of, has already been tried, doesn’t mean it will work for you (I did not get relief from the hot showers or the bag of frozen peas, and not even from the female orgasm). But, we all have to save our (only 2 times a day) meds for the big ones, the Kip 5-8’s have to be dealt with another way.

For most of us that other way, is 100% oxygen. Check out this groovy link for pages of O2 info. Even if you are already using O2, check it out, you might be able to increase it’s effectiveness.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

About the Dr.s and questioning us: I got fed up with that too. The final 4 new Dr.s I saw last cycle, who asked “So, what brings you in here today?” (while holding my frigging chart in their hands) were greeted, by me, (smiling) with, “Do you want to know what I have, or do you want to hear the symptoms first?”. Seemed pretty good at cutting out the “Are you sure that’s what you have?” questions. The neurologist (last, in the cycle), not only agreed that I had Clusters, but told me that I am right-handed and that I would do really well on a sobriety test. Practice, practice, practice.

Hang tough,

David J.

Title: Re: New to this site.HELLo!
Post by Bob_Johnson on Jun 29^th, 2003, 8:03am

There is a run of messages this week on using more than 2-3 doses of Imitrex a day--look for them. The medical literature I've seen indicates that multiple dosing is NOT causing problems--except for cost.

I've found excellent results using the med in the following report. Other folks have reported mixed success/failure with it but, compared to Imitrex's cost,it's worth a trial. I had consistently good response in 20-minutes.
------
1: 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.

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

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Title: Re: New to this site.HELLo!
Post by Charlie on Jun 29^th, 2003, 4:48pm

Hi Rollo and welcome to our world. Sorry you have to deal with this horror. It's great when you can meet others who actually know what you're saying. Here are two things that should be helpful; one a link to Simon's letter that you can copy and show to everyone. It does a great job explaining what this thing is like.

http://www.ouch-uk.org/ch/note_colleagues.cfm

This is my old neurologist's little trick that sounds daffy but has helped me and others:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: New to this site.HELLo!
Post by Live4Fun on Jun 29^th, 2003, 6:24pm

Welcome to the crazy train Rollo. Sorry you had to find us, but glad you did. Keep fighting the good fight.

Bryan

Title: Re: New to this site.HELLo!
Post by cootie on Jun 29^th, 2003, 10:01pm

Welcome rollo.....sorry you have a WMD goin on in your head......you'll learn a few things on here and maybe a few good tips.....good luck to ya. Pam that is a WMD at home ;)

Title: Re: New to this site.HELLo!
Post by kellya408 on Jun 30^th, 2003, 8:47pm

Rolo (and all other ch sufferers):
I also just found this site this weekend. I've been going through one of the worst cycles ever, and the depression finally started to try and creep in - but I'm trying to keep it out.
I feel so much better knowing that I don't just have an abnormally low pain tolerance or something! Any advice you can offer is appreciated.
Also, what is the convention I've noticed misc. postings for????
Kelly

Title: Re: New to this site.HELLo!
Post by BobG on Jun 30^th, 2003, 8:57pm

Welcome to the board rollo and Kelly

Kelly click on the blue line

http://www.clusterheadaches.org/conventions/2003/2003.htm

Title: Re: New to this site.HELLo!
Post by kellya408 on Jun 30^th, 2003, 9:13pm

Thanks BobG.
I wish I would've found the site sooner! (Unfortunately, my last final exam is the night before it starts.)
Are there any local or regional (Michigan) conventions?
Thanks again

Title: Re: New to this site.HELLo!
Post by BobG on Jun 30^th, 2003, 9:18pm

Don't know about gatherings in Michigan. Maybe someone from your area will see this and reply.

Of course you could be the one to organize a get-to-gether. ;)

Title: Re: New to this site.HELLo!
Post by Ree on Jun 30^th, 2003, 9:21pm

Welcome Rollo and KellyA........... sorry you are here but glad you found us.......... Here's to cozy pain free nights for you and yours.......... keep us posted on your progress Ree

Title: Re: New to this site.HELLo!
Post by Opus on Jun 30^th, 2003, 9:42pm

Rollo and Kelly,
Sorry you have to be here, but anyway,

http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif

Opus/Paul