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bocephus
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Finally other people that understand
« on: Nov 19th, 2004, 2:59pm » |
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Hi all. I am a new member to this site. I have suffered with cluster headaches for about 17 years. I was diagnosed at the age of 16 but I had been suffering for 3 or 4 years before that but no one took me serious enough to take me to a Dr. My headaches have evolved somewhat over the years. As a teenager I had the headaches every day, almost like clockwork. When diagnosed at 16 they called it "cronic cluster headache" because of the frequency of the attacks. As I have gotten older I now have periods of several months that I am pain free, but I still have about a 1 to 2 month period every year where I suffer severe pain.
Over the years I have tried several things to stop the pain and end the attacks. I have found no chemical release from the pain. The method that is about 90% effective for me is O2 therapy. In a pinch I use what I call hot/cold shock therapy also. This method is usually pretty reliable at making the pain go away.
My pain is much like that which most cluster sufferers describe. Sharp, unbearable, and maddening. I have up to three attacks a day when I am in a headache cycle. They range in intensity but are all above 10 on the pain threshold meter. The worst attacks cause palsy like symptoms on the left side of my body. My face goes numb, I lose control of my left eyelid, my left nostril runs, my left corner of my mouth droops and I drool, and the very worst cases cause loss of the use of my left arm and leg. All the while I feel like my left eyeball will explode into a million pieces at any time. The pain tunnel runs from the base of the left side of my skull to the back of my left eyeball, sometimes extending into my teeth and neck.
I could go an forever but I'll save some for later. I've got 17 years worth of experience with the beast to talk about, so I most likely will never be at a loss for words. Sadly, I can't remember what life is like without the beast, I have been forced to carry it with me for as long as I can remember.
If anyone is interested in hearing about my hot/cold shock therapy let me know, I'll be glad to divulge. As I said, it works real well in a pinch.
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Sisyphus
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Re: Finally other people that understand
« Reply #1 on: Nov 19th, 2004, 3:11pm » |
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Hi there, yes, I fouynd this site this week as the pain kicked in and I have just had the best conversations with people who know what I am talking about. It's great. After years alone with it AT LAST! Welcome mate, it's all here for us, enjoy the experience, I am. Regards, Jack.
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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They thought there no more dreadful punishment!
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Ruth
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Re: Finally other people that understand
« Reply #2 on: Nov 19th, 2004, 6:44pm » |
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Hi Bo,
Glad you found us, I think the hot cold has been mentioned here and O2, but feel free to share your experiences.
Most of us have tried just about everything under the sun to make the pain go away.
Now we share and help each other, sometimes we are serious, sometimes we are not.
But most of all we care
Ruth
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nani
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Re: Finally other people that understand
« Reply #3 on: Nov 19th, 2004, 11:07pm » |
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Welcome bo and I'm sorry you're here. We understand. Many people use a number of different hot/cold type abortive treatments... cold alone works a little for me. Look around, everyone here is helpful and supportive. There's lots of good info on the links to your left and on the OUCH site. PF wishes to you...
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Others may come and go, but MY power is MINE.
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BlueMeanie
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Re: Finally other people that understand
« Reply #4 on: Dec 2nd, 2004, 6:43pm » |
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Hi Bo,
Welcome to Clusterville. There are many little trickes that help somewhat to defend against the Beast. Read up all you can. There may be other options you might not have tried yet. Glad to hear you know about the 02. It sure helps lots of Cluser Headache sufferers.
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Gator
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Re: Finally other people that understand
« Reply #5 on: Dec 3rd, 2004, 2:32am » |
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Welcome to the website, bocephus. 17 years is a long time. Sucks that the damned beast gave you a reason to come looking for us, but I'm glad you found us.
As you have no doubt discovered, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, you may end up teaching whatever doctor about CH.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here is a link that tells about using O2 and shows a setup using welder's O2.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Again, welcome to CH.com. There's no better place in the world for info and support.
Gator
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bocephus
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Re: Finally other people that understand
« Reply #6 on: Dec 13th, 2004, 1:30pm » |
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Thanks to all of you for your support. I will tell you a little more about my plight. As a child I would tell my mother that I had a headache and since I told her that everyday she thought I was using it as an excuse to get get out of things that I did not like. That is until the headaches got to the point of what I refer to as temporary paralysis of my left half. Basically my whole entire left side would go numb. I would drag my leg when I walked, my arm was useless, my mouth drooped and I talked like someone who had suffered a stroke, my nostril ran, my eye watered, etc.... By that time I was taking 8 extra strength Tylenols a day and no releif in sight. I went to a headache specialist that put me on Norvasc for a year, that was 1 year of my life wasted. Then I changed Dr.'s and my new Doctor asked me what I wanted to take. I said I always felt like couldn't breathe during a headache, so maybe I could try O2 therapy. She said OK, and that was the first time I had ever been able to shake the beast without just sleeping it off.......
O2 is my old standby, but I am constanlty looking for other treatments because of the major inconvenience that O2 is. It is a blessing and a curse.
Does anyone out there take Neurontin?
Thanks for your support and I hope to hear from you again.
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Bob_Johnson
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Re: Finally other people that understand
« Reply #7 on: Dec 13th, 2004, 2:05pm » |
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Given your long & intense history you may wish to consider sharing your experience with pharmacy students. See "Medications, Therapy..." section and read the message, "Wingate Univ...."
This nasal drainage business is a wonderful sign of how our nervous system works. One side is blocked/draining while we breath through the other side. I use to joke about the intensity of an attack by reference to the number of tissues used: "Had a 17 Kleenex one today".
Look at the medication button (left) for the reported experience of folks here re. various meds.
Personally, I have shifted to this one exclusively because of its predictable effect.
1: 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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Bob Johnson
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survivor13
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Re: Finally other people that understand
« Reply #8 on: Dec 13th, 2004, 4:01pm » |
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good luck man! stay with us! i got the cocktail that works for me off this site. Dr. only neede to write the presct.. 
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