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gadman
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Apr 14th, 2011 at 6:27pm
 
Hi
  My name is Bill and I'm new to this site.  I guess I've had cluster headaches for about three years now  My neurologist says I fit the criteria for CH with a few exceptions.
       First - I'm 71 years old and that does not fit for age at an onset.
       Second - sometimes my headaches last much longer than 2 hrs.  (I just had one that lasted 23 hrs)  They are not at a peak level of pain all that times but up and down like a sine wave.  I wonder if this could be several headaches, one3 after another?  (My theory, not my doctors)
        Third - when it gets too bad I lie down.  I just don't have the energy at that point to remain vertical.
        Other than that my symptoms fit like a glove.
    I have been working with my neurologist for about a year now.  He tried several things like changing my high blood pressure meads.  Nothing worked until my last visit when he gave me two sample pills of Relpax.  These seamed to stop my next incident in its tracks.  One problem.  Relpax is $195 for six pills and my insurance doe's not cover any of it.  Being on a limited income (retired) and since I can have as many two or three clusters with up to six to eight headaches per cluster per month - well you do the math.
    I guess we will try something else now.  He did mention O2 and I don't know why we didn't try it.  Maybe now we will.  It looks like it works well for others.
    I just found your site and already it has helped a lot.  Hope to hear more from all of you soon.

Bill Smiley
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Mike NZ
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Oxygen rocks! D3 too!


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Auckland, New Zealand
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Re: New to this site
Reply #1 - Apr 15th, 2011 at 4:33am
 
Hi Bill

For the diagnosis of CH this is something that you need a neurologist for, hopefully one who specializes in headaches, especially with your slightly unusual background. Whilst being 71 is a lot older than most people for starting CHs it doesn't mean that they can't be CHs.

From what you've said about changing blood pressure mediciation, are you using verapamil? This is a very effective preventive, with people typically needing 360-480mg a day for an effective dose, however some people need to go as high as 1000mg.

There are other preventives, like lithium and topomax that can also be effective.

For aborting your CHs, pills are not normally the most effective route as they have to be digested before they can start working.

Oxygen can be used to abort a CH in a matter of minutes using a high flow rate (15lpm or higher) and a non-rebreather mask. Read up about it using the oxygen link on the left. I can kill off my CHs in an average of 6 minutes.

Imitrex injections are another way to abort CHs, although they can be expensive unless covered by insurance and they can have side effects too.

Also look at the post "123 days pf" and you'll see how people are getting good results from vitamin D and fish oil (read the posts).

Keep reading and you'll learn a lot more about CHs.
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Bob Johnson
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Reply #2 - Apr 16th, 2011 at 11:04am
 
Late age onset (I can say that to you because I'm 75!) can signal more serious issues than simple cluster.

Suggest you print out this group of reports and give to you doc.


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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Bob Johnson
 
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QnHeartMM
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Reply #3 - Apr 16th, 2011 at 12:53pm
 
Here's a link to what Bob just mentioned:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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boat
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Reply #4 - Apr 20th, 2011 at 10:53pm
 
I'm Boat. 58. Had CH from the age of 18 to 43, then they just went away.  When they started, Doctors had no clue what was going on.  One of them thought I had premature aging and had Temporal Arteritis - he gave me prednisone and that medicine stopped about 80% of the headaches.

Over time I found out that I really had cluster headaches, not temporal arteritis.  Even though it has been 15 years,  I remember the horror of those times.

A few thoughts from my experience.  Get plenty of rest, even if you anger your boss by not putting in those long days.  Don't drink or smoke - ever again.  Drinking and smoking between clusters seemed to bring them on much faster.  Doing it during the attack cycle was simply suicide.

Tell people you live and work with. They will help you as much as you can.  One look at you with your drooping eye and they will do most anything to help.

Doctors still know very little about our problem.  The best thing to do is learn, over time, what helps you and stick with it. Talk to people like me and others to get ideas about what might work.  Oxygen never helped me but I know it helps others.  Prednisone was the only thing that kept them away at all. 

Enough for now.  I hope I can help someone out there.

Boat
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Bob Johnson
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Reply #5 - Apr 22nd, 2011 at 4:50am
 
IF your doc is confident that you have Cluster, print out this abstract for him. This med has been quite useful for some of us and, its main benefit for you, is the per dose cost--much less than what he has given you now.
==
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

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


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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
===
===
Is he talking about starting a preventive med? The abortive kills an attack quickly but the preventive reduces frequency/severity of attacks for the long haul.
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Bob Johnson
 
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