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Topic: Closet Sufferer, but not here....... (Read 648 times) |
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ClosetCHer
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Closet Sufferer, but not here.......
« on: Oct 6th, 2007, 3:24pm » |
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To all on the CH message board:
First, I am thankful to God that this site exists and that there are people out there who share the same problem as I do. Now that I am a member of this site, a lot of stress has been taken off of my back. I can now speak openly to other "ClusterHeads" instead of keeping everything inside like I have for the past years.
My CHs started when I was 17 years old. They were properly diagnosed when I was 21 years old while attending college. In those 4 years prior to my diagnosis, I had many doctors tell me all of the crap that I have read others list on here. I am now 25 years old, going on my 8th year of dealing with the devil. I am episodic, usually lasting 4-7 months between Feb and Dec of each year. I typically get 1 CH per day 4-5 days a week during my episodic period. For the last month of the episodic cycle I start to get two CHs a day, 7 days a week. Usually a combination of a 3-4(15-30 mins) and a 8-10(1-5 hours), using the Kip scale ends my cycle. The cycle I am currently in is now close to being in it's 8th month, way too long. I am hoping I have not gone chronic.
Obviously, by reading my name, you have gathered by now that I do not share this with many people. My parents and a few select friends know about the Devil and his ways. I was first afraid of being looked at as being weak, and still am, because people just do not understand. Two, my job does not allow me to have headaches. Bottomline: if my employer knew that I suffer from CH, I would be put to a desk job or most likely fired. I spent a lot of time training for this job and can't let that happen. So far, with some luck, no one has ever even noticed that I suffer from CH or headaches at all. If I have gone chronic, then the time is coming soon to seperate from my job and choose a better path that help me with this beast. Only time will tell.
When I was diagnosed (in college, a few months after being hired for my job), the doctor gave me six samples of Imitrex nasal spray. The sprays worked to abort CHs that went beyond what I could fight alone. Since then, due to my job, I have not used any type of prescription medication. I have experimented with Kudzu thanks to posts on this site and I'm having successes here and there. Overall, in the past 8 years, I have fought the beast alone. If I look back, I think I have grown to cope with the attacks better each time they come around. Although, the 9s and 10s still leave me bruised and battered.
I'll stop the rambling for now. I'm extremely excited to be a member of a group of people that I know are very strong in every way. I have only met one other ClusterHead in my 8 years and that's going to change really soon. I'm looking forward to meeting many more through this site. I hope to get to know each and every one of you better. Thanks for the support and especially for this site.
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DennisM1045
New Board Hall of Famer
One wave at a time!
  
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Re: Closet Sufferer, but not here.......
« Reply #1 on: Oct 6th, 2007, 3:36pm » |
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Welcome out of the closet and into your new home! It's about time you found us  Hopefully we can help you find appropriate weapons for your battle.
Make sure you go through all the info on OUCH-US too. It's a great resource. But it sounds like you have already been doing a lot of reading. Don't be shy about asking questions. There are a lot of very helpful folks around here.
You aren't alone in the dark any more 
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Ray
CH.com Alumnus
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Ray and Shade
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Re: Closet Sufferer, but not here.......
« Reply #2 on: Oct 6th, 2007, 5:10pm » |
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Welcome to clusterville.
I'm sorry that you've had to hide something that is not your fault. Having clusters does not make you a bad person, or an undependable employee. In fact, having to work through the pain and the job makes you one heck of an employee.
I can only imagine the type of work that you do, but you deserve credit, not discredit for the work you do!
I, for one, am proud of you,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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Bob_Johnson
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Re: Closet Sufferer, but not here.......
« Reply #3 on: Oct 7th, 2007, 7:37pm » |
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A number of us have had good experience with this med. It works to abort within 20-minutes and, being a pill, offers you a source of relief without anyone on the job knowing it. You can get a sample from your doc and, within 1-2 doses, you will know whether it works for you.
I assume that you are also using a preventive med. If not, absolutely essential given your situation.
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Headache 2001 Sep;41( :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.
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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.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
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Re: Closet Sufferer, but not here.......
« Reply #4 on: Oct 7th, 2007, 8:47pm » |
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Come out of the closet sir. You are no longer alone.
Quote:| Two, my job does not allow me to have headaches. Bottomline: if my employer knew that I suffer from CH, I would be put to a desk job or most likely fired. I spent a lot of time training for this job and can't let that happen. |
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Just a guess here from me, but are you a Police officer or in a job that is similar? We have several officers here if I am reading between the lines correctly who can give you advice. just a thought.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Closet Sufferer, but not here.......
« Reply #5 on: Oct 8th, 2007, 5:13am » |
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Welcome! 
I'm so sorry that you have suffered alone for so long. It's great that you've found your way here. You'll always find people who understand what you're going through right here.
Best wishes & PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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