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(Message started by: patinpain on Jul 14^th, 2005, 9:55pm)

Title: new member
Post by patinpain on Jul 14^th, 2005, 9:55pm

Hi! I'm new to this site. I have been getting CH for 35 years. I have episodes not chronic. I am just beginning a cycle. Last episode was the winter of 2001 I THOUGHT THEY WERE GONE FOR GOOD. I am going through menopause and for some strange reason I always figured that would somehow put an end to the episodes. They usually last about 3 months. The older I get I often wonder if I will have the strength to endure another episode. I start tomorrow on 50mg of Predisone a day for 10 days and also verampamil. I picked up my oxygen today. Hopefully this will not be a long episode.

Title: Re: new member
Post by burnt-toast on Jul 14^th, 2005, 10:04pm

Looks like you're gathering some good troops for the battle. Lets hope its a short battle and the final one.

Best wishes - and welcome abord.

Tom

Title: Re: new member
Post by RichardN on Jul 15^th, 2005, 12:49am

Welcome Pat

. . . . and hope this is a short cycle for you.

Thirty five years . . . damn! Mine started in 1/01, I believe as the result of a head injury . . . was a basket case when my dear wife found this site 2/02.

How long have you been using 02 to abort? It often seems difficult to get doctors to prescribe (I had to get loud and DEMAND it . . . with printed material from this site in hand)

Be Safe, PFDANs

Richard

Title: Re: new member
Post by Topical on Jul 15^th, 2005, 4:59am

Welcome to the boards patinpain.I am sorry to hear about the relapse after 3 years.

I hate to see them come around. The pain comes back and it is instantly recognizable. "Not again!" I hope it goes easy for you this time and is the last time you will have to go through it. Take care.

Title: Re: new member
Post by patinpain on Jul 15^th, 2005, 7:22am

Thank all of you for your kind words. I am glad I found this site. It helps to know that there are other people that know what you are dealing with. Prior to this I have never spoken with anyone that had CH. Does anyone know if there is any research that has gone into a cause or cure?

Title: Re: new member
Post by marlinsfan on Jul 15^th, 2005, 8:31am

Hi Pat, welcome. It looks like you're well informed on meds and treatments, so all we can say is we hope the cycle is the shortest ever. The only thing I didn't see on your list was the trex. I carry it around in case I get hit during the day when I have no O2 with me.

I too had my last episode in winter 2001, and went three years pain free. My current cycle startedin April, I'm in the 11th week....

PFDANs to you.
Jose

Title: Re: new member
Post by patinpain on Jul 15^th, 2005, 5:00pm

Jose-when you say trex is that imitrex? And if so what dosage do you take and does it give you any relief? That is always a concern of mine, during my episodes is going out and not being near my 02.

Title: Re: new member
Post by burnt-toast on Jul 15^th, 2005, 5:37pm

on 07/15/05 at 07:22:58, patinpain wrote:

Does anyone know if there is any research that has gone into a cause or cure?

As less than 1% of the population reportedly suffers from this condition. Causes and cures seem to be receiving little attention. Some research seems to indicate that our hypothalamus' - located deep in the brain are involved.

Quote:

[/quote]Abnormal function of the hypothalamus
Cluster attacks typically occur with clock-like regularity during a 24-hour day. The cycle of cluster periods often follow the seasons of the year. These patterns suggest that the body's biological clock is involved. In humans, the biological clock is located in the hypothalamus, which lies deep in the center of the brain. Among the many functions of the hypothalamus is control of the sleep-wake cycle and other internal rhythms.

Abnormalities of the hypothalamus may explain the timing and cyclical nature of cluster headache. Studies have detected increased activity in the hypothalamus during the course of a cluster headache. This activity isn't seen in people with other headaches such as migraine.

Studies also indicate that people have abnormal levels of certain hormones, including melatonin and testosterone, during cluster periods. These hormonal changes are believed to be due to a problem with the hypothalamus. Other studies reveal that participants with cluster headache have a larger hypothalamus, compared with that of participants who don't have this headache. But it remains unknown what causes these abnormalities in the first place. [quote]

I've included a few links for you to obtain additional information.

http://health.allrefer.com/health/cluster-headaches-hypothalamus.html

http://www.cnn.com/HEALTH/library/DS/00487.html

http://adam.about.com/reports/000099_2.htm

Meds. currently being prescribed (preventative and abortive) were primarily developed to treat other conditions. They appear to work for some but not for all and may even work once during a cycle but not during the next cycle - Med. adjustments are an on-going task and they do provide relief for most sufferers.

Surgical solutions have not been proven effective.
In Europe they have been moving forward with Clinical Trails for surgical solutions. Deep brain implants and various nerve blocking surgeries. - most are so new that final clinical results have not been published yet.

In the U.S. there is very little that I can find being done to address this condition via surgeries. There doesn't appear to be enough money in it. Nerve blocking surgeries have been performed in the U.S. but these have been somewhat failure prone and also appear to lacking solid long-term success rates.

I still have a lot of research to do on potential surgical solutions.

There is also a variety of alternative treatments and meds. and you can find a lot of good information regarding these on the site.

Hope some of this helps - obviously there's a long way to go before causes, treatments and cures become more specific to this condition.

Tom

Title: Re: new member
Post by pattik on Jul 15^th, 2005, 6:02pm

Hi Pat, We are probably in the same age range, and I have found that my episodes are showing up a little farther apart now. They showed up like clockwork-same time every year for at least 20 years, but my last three episodes have been every other year. So maybe there is some hope that at least the frequency will decrease. But even with more time in between, there is no problem recognizing the beast as soon as he reappears. :(

Patti