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New here - 23 years with CH's (Read 816 times)
C J
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New here - 23 years with CH's
Jan 16th, 2012 at 6:51pm
 
Hello everyone,

I have been to the site a few times in the past. I finally decided to join the conversation with the hope that my words and experiences could provide some comfort to those who are wandering, scared out other minds... My puns are typically deliberate

I don't give "them" the credit of getting a nickname. I will refer to "them" simply that way - they aren't allowed to steal any emotion from me, they control nothing in me; they are simply -"them" - they are them because they come in groups. I am headache free for 6 days now after a typical month long, well documented bout of 62. I ranked them before I was aware of a ranking system.

Almost always the same -1:42am (ish) the first one, wake up and say hello, my friend - we're back. I lie there considering if it could be - My last cycle ended in July of 2010 so it had been 16 months -almost made it to my previous record of 24 months. I am 45 and every time they go away, I think positively - that they are gone for good. So I am laying there and it (singular) starts doing what it and they do. I go to my office and get the 100mg imitrex from my desk.

First week 1 per day up to 6 on the scale - wobbling to get up to speed
Week 2 - 2 per day and escalating - not wobbling - very accurate
Week 3 - every 8 hours - hammering, brutal
Week 4 - every 10 hours - wobbling, losing consistently.
Day 31 - gone

My family knows them as well as I do - they will never tell me they understand because they have had migraines
My friends know - not good to tell me it's a good thing that they are short lived.

I just go away when I need to. Here is what I use:
Crushed ice - use on my neck - right side sufferer
Imitrex 100 mg
1 Aleve

When my doctor prescribes the Imitrex, I specify 27 count as the amount and that he offers 2 refills. My insurance covers 27 the same as they do 9. Be sure to insist that they specify 27 count. Generic doesn't help me - don't know why, don't ask anymore. I get refills even when I don't need them. I carry an imitrex in my wallet even if has been a year since one of them. I have at least 54 100mg imitrex tablets in stock at all times!

I understand that the majority of doctors and specialist are somewhere around the 1500’s in their understanding of them. You are as likely to be prescribed a good bleeding as you are to get imitrex. My doctor told me that, " I have never heard of oxygen as a treatment for headaches." I told him, they aren't headaches...

It takes me until week 3 to start considering options - the imitrex isn't as effective, "they" are at a peak in intensity and frequency and I am toast... Getting on oxygen sounds great but I am now in remission and I tell myself they are gone for good - getting on oxygen sounds like a huge pain in the ass. My neighbors see me carrying in a tank, masks etc - the next knock on my door is ATF!

A few things about this cycle:
I wasn't feeling like my love life was everything it could be - so, I did what every 45 year old man who watches tv does - I talked to my doctor about it and he was happy to give samples of little blue pills that, let me tell you, WORK. My doctor also wanted to make sure there wasn't other things at work so he ran some blood work and we found out that I HAVE LOW T!
More tv commercials....

I am 80% convinced that the vasodialator drugs (VIVA VIAGRA) started my cycle

The cycle ended last Wednesday - much more abruptly than "usual" - Thursday I started feeling sick - by Friday, I had 103 fever and I spent the last 3 days in bed with the flu.

The flu seemed to have halted them - although it feels like unfinished business

So hello everyone - I chewed Tylenol in the 80's and found a miracle called imitrex sometime in the mid-90's

C J
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Bob Johnson
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Re: New here - 23 years with CH's
Reply #1 - Jan 16th, 2012 at 7:38pm
 
NOW you see why we ask for some history of your Cluster expeience/treatments!

Print this out and drop on your doc. May give you double relief!
====
Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 
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Bob Johnson
 
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Potter
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Re: New here - 23 years with CH's
Reply #2 - Jan 16th, 2012 at 7:58pm
 
Great first post.  Have you tried Oxygen? 

             Potter
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C J
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Re: New here - 23 years with CH's
Reply #3 - Jan 16th, 2012 at 8:04pm
 
Thanks Bob,

I came across this same information a few weeks ago when I was trying to figure out if the possible trigger was vasodilator medication or the testosterone gel my doctor prescribed. As you would probably know, I didn't want to continue with new medications during a cycle so I will begin the testosterone replacement Andro Gel tomorrow. If 5 is a normal T level, I am at 1.7... Very low. I am assuming that the gel will fall short and I will need monthly injections the get back to a "normal" testosterone level.

I would say cheers but - it has only been 6 days since the last one - I wouldn't dare try a sip of my favorite Cabernet yet.

Say something nice about "them"
OK, if I must... When I was 25, They forced me to quit smoking!
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C J
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Re: New here - 23 years with CH's
Reply #4 - Jan 16th, 2012 at 8:17pm
 
Hey Potter,

Greetings

I am in a bit of a weird spot on oxygen - I want to try it but,
I just ended a cycle so, it should be 6 to 18 months until the next. Or, God willing, they are gone forever.
My doctor is clueless about oxygen - will I need to see a specialist for a prescription? Or, do I use welding supply? That scares me - I am not well versed on that - feel like I may suck in some bad stuff from those tanks!

Where to start with oxygen?

CJ
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Potter
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Re: New here - 23 years with CH's
Reply #5 - Jan 16th, 2012 at 9:49pm
 
Insist on a script for Oxygen at 25lpm.+ with a non-rebreather mask.

       Potter

Welders is a pure as medical,  just way cheaper.
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« Last Edit: Jan 17th, 2012 at 9:13am by Potter »  
 
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