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Topic: New Cluster Head Story (Read 594 times) |
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dougrwhite
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New Cluster Head Story
« on: Feb 18th, 2004, 2:22pm » |
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I'm 47 years old, and have had cluster headaches since I was 21 - 22.
I have never attempted contacting anyone with cluster headaches, until now.
My story is somewhat long (26 years worth), but please stay with me.
In the late seventies, I had my first experience with cluster headaches. They were fairly chronic. Typically they would last about an hour every day for months at a time. Sometimes I'd get a week break here and there. I didn't seek treatment for the first few years, thinking it was my "bad habits" that were giving me trouble. After settling down in my mid-twenties, I realized that I could behave like a saint, and still not escape the wrath of "the demon".
I didn't know what I had. My wife was/is a nurse, and suggested that I see an ENT. I went to the ENT. He looked up my nose, said a few things about my nose being broken, and the possibilty that my ducts weren't working properly. He prescribed an antihistamine, Polaramine. I figured there was no way in the world this was going to work. Afterall, I'd used antihistamines before, without any success. Still, it was a start. I picked up my prescription and started taking it as directed. Within a few days I noticed a change in the severity of my headaches. After two weeks, they were gone, and they didn't come back until five (5) year later in 1987. After 3 years of suffering, I was free.
My remissions have lasted between 2-5 years. When they returned I'd have my two weeks on Polaramine, and was good to go.
Fast forward to January 2004. After being in remission since December 1998, they're back. My family doctor had diagnosed my problem as cluster headaches during a previous attack, but I really didn't care what they were called. I just had her write a prescription for Polaramine.
Unfortunately, she couldn't write a prescription this time. "Polaramine is no longer on the market." It was as if a judge had condemned me to a lfe of torture.
Logic told me that other cluster sufferers were probably looking for a substitute for Polaramine, so I took to the internet and found this site. Surprisingly, there was no mention of it anywhere. In fact, it appears that antihistamines as a group are completely ignored as being a possible treatment.
Polaramine was taken off the market, because one of its active ingredients was found to be lethal in combination with other medications. (Seems like a minor risk to a cluster sufferer). However, the main ingredient, chlorpheniramine is still available in an over the counter medication called Chlortrimeton.
After taking the medication for two weeks, I took my final dose last Saturday, 2/14/04 and haven't had an episode since.
I know there will be some of you who think I'm just a sinus headache sufferer, but I've lived the descriptions of unbearable pain that are posted all over this web-site, so I don't think that's the case.
I have a theory! (Completely unprofessional). It seems to me that the cluster headache is a series of events that culminates in excruciating pain.
What if one of those events involves histamines and sinuses?
What if you take away that particular event?
Maybe you interrupt the sequence in the series, and the whole thing stops before it gets going full speed.
Maybe after two weeks of being interrupted, the whole process becomes so messed up, that you go into remission.
I don't know.......but I have nothing to gain by sharing this story with you. Chlortrimeton is available OTC at your local Kroger for about $11.00.
I hope that you will all give it a try. If it helps 1 person out there, it's been more than worth my time to post this message.
Doug
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floridian
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Re: New Cluster Head Story
« Reply #1 on: Feb 18th, 2004, 3:39pm » |
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Doug,
glad you found us. There has been talk about antihistamines here - some people report some relief, others get no relief. Histamine is definitely involved in the end stage of the disease (pain and inflammation), but its not the only thing, and there are other problems that I think need treating. But pain relief is a good thing, and if chlorpheniramine works for you, its good to hear. Its definitely possible that an antihistamine pushes your body chemistry in a positive direction. Some people here believe that antihistamines also change our sleep for the better if we are having clusters (less REM).
The sinus link has also been discussed. Not everyone believes in it, but there is some evidence. I think that sinuses and other infections can make a cycle worse (even months after an infection, due to changes in the immune system). It may also explain why some years, no headaches, other years, bam! I don't think it is the only factor, as some people claim to have perfect sinuses, but still get cluster headaches.
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| « Last Edit: Feb 18th, 2004, 3:45pm by floridian » |
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dougrwhite
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Re: New Cluster Head Story
« Reply #2 on: Feb 18th, 2004, 4:02pm » |
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I had no idea that so many people were suffering. Its' such an awful, lonely affliction.
I guess I'm one of the lucky ones.
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Pinkfloyd
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Re: New Cluster Head Story
« Reply #3 on: Feb 18th, 2004, 7:00pm » |
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Anti-histamines (and histamines) have LONG been associated with clusters. Many people end up on massive doses of OTC anti-histamines to treat their clusters for long periods of time before even being diagnosed with clusters.
The Diamond Headache Clinic still uses a histamine drip procedure to treat the most refractive cases. This to desensitize the blood vessels to histamine that is naturally produced. Many clinics have discounted the extensiveness of this relationship and have moved on to other treatments, but it's still a successful treatment for many people. Long costly stay in a hospital but it is still effective for many.
Glad it works for you
PF
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Giovanni
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Re: New Cluster Head Story
« Reply #4 on: Feb 18th, 2004, 7:24pm » |
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Hey Doug,
I'm really delighted that you found something that works for you. I guess we're a weird group in what helps one person may not help another. A lot of us here are seeking the silver bullet. Maybe you have found yours.
Best Wishes pf
John
ps-stay around!
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justasound
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Re: New Cluster Head Story
« Reply #5 on: Feb 18th, 2004, 8:59pm » |
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Quote:However, the main ingredient, chlorpheniramine is still available in an over the counter medication called Chlortrimeton.
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I guess I'll be buying that... As one with no insurance, and March (hell month) just arround the corner, I'm stockpiling ammo... Curious to see which of all the cheap fixes will work best..... I sure hope at least 1 does...
lee
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dougrwhite
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Re: New Cluster Head Story
« Reply #6 on: Feb 19th, 2004, 12:33pm » |
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Lee,
It's worth a try. I bought the 12 hour, and took it twice a day religiously for roughly 10 days (even though I had no sinus problems). The length and severity of the attacks changed in about three days.
The attacks didn't stop altogether until I stopped taking it. Sounds strange, but that's how it has always worked for me.
Good luck.
Doug
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floridian
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Re: New Cluster Head Story
« Reply #7 on: Feb 19th, 2004, 1:11pm » |
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The first year I had clusters, I went to the doctor after a day or two - sinusitis was the diagnosis, antibiotics the prescription. The headaches stopped within a day or two of starting the antibiotics. Don't know if the antibiotics had any role in shortening the cycle (didn't even know what a cycle was at the time).
Lee - are you considering things like magnesium, melatonin, and B-vitamins? I up my magnesium well before the beast hits (July/August for me), and start on melatonin as soon as my sleep gets weird (as it always does right before a cycle). Other innexpensive things to consider - 5htp, turmeric, and tea (black or green, decaf or regular).
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ave
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Re: New Cluster Head Story
« Reply #8 on: Feb 19th, 2004, 3:23pm » |
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Just a side issue - the sinus.
My sinuses, always a weak point for me, cleared up wonderfully after Menopause (mucous layer atrophies more or less when the oestrogen falls).
And that was when I started to get clusters.
Furthermore, I could feel the top of the nose on my right side (cluster side) pinching itself shut. It was not clogged, for I could get O2 into it.
Read a piece by a Dutch doctor explaining that it is the trigemenal nerve that triggers the closure of the nasal passage, not the snot caused by tears. Interesting.
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pokemom
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Re: New Cluster Head Story
« Reply #9 on: Feb 25th, 2004, 9:35am » |
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[I remember having this type of pain in 1991 when I was preg. with my second child. I had a sinus attack around (spring) May. Oh how this pain in my head hurt. Just like this pain I have now. CH. Back then my Ob/Gyn gave me Histalet forte. Forte cus I was pregnant and could not take the regular histalet which is a histmine like chloratrimaton. I have taken both in my lifetime. I just remember the pain I had and it hurt so bad all I could do was cry. That seem to help until it reached its peak. I was treated with antibiotics and Histalet forte and within a couple of days all was gone and I felt so much better. So yes I think the histmine has something to do with putting you in remission. I did not get these dang headaches CH until I started on the ABC drugs for Multiple Sclerosis in 1999. That is Avonex, Bataseron and Copaxone. (ABC)  So now I have the beast along with the MS monster.  . I have had ms for 23 years and I am 44 right now. Hope my rambling helps you and I also wish you miles of smiles.
Robin 
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| « Last Edit: Feb 25th, 2004, 9:39am by pokemom » |
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Killroy 2.0
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Re: New Cluster Head Story
« Reply #10 on: Feb 25th, 2004, 2:58pm » |
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I used Clartin -D for a long time. (24 hr)
It no longer works for me, but give it a try
just remember the D is the important part
Gena
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