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Topic: Just diagnosed (Read 1359 times) |
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ajarmstrong
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Just diagnosed
« on: May 22nd, 2008, 5:54am » |
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I was diagnosed with CH last week. I won't complain because that isn't my nature. It all started a month ago. I started waking up @ 2am every night with pain in my right eye. I'd take some Tylenol and lay back down. The pain would go away in @ 15 minutes to an hour. Then one night I woke up and thought my wife had hit me in the eye. WHAT PAIN. I was up the rest of the night pacing the floor. I ended up in my desk chair rocking like a demon.
The next day I went to the doctor. The rest is history.
Thankfully, I can work from home some. It's been two weeks now. The attacks come on like clock work. Usually one late night @ 2am, then one @ 6am, I can usually lay down then and get some sleep until @ 1pm and then @ 8pm. They usually last about 15 minutes or more. I can tell when it is about to come on when my right eye begins to twitch wildly.
I guess the hardest part of this has been letting the people at work know. They are very understanding, but I do have some pride when it comes to work. Something I'm going to have to learn to deal with. Separating myself from the pain and learning not to judge myself because of it.
Anyway, thanks for listening.
Allen
BTW: It's almost an hour from 6am and my right eye is starting to twitch. Oh JOY!!!! 
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debOUCH
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..i think to myself, it's a wonderful world..
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Re: Just diagnosed
« Reply #1 on: May 22nd, 2008, 7:06am » |
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welcome to a great place @ a bad time...sorry you have CH...  ..soon, all of the experts will be by to give u some tips................i am a newbie, 4 mths into 1st cycle, i so feel your pain...mine are also @ night, from 9pm-9am...........keeping them at bay actually with Elavil, at night, a depressant which is working for me to hold off.........i know it is working for when i attempt to go off, WHAM!!! HE IS BACK!! (yes my beast is of the male species!!!HAHA) before that it was Melatonin, have u tried that? it works for many to allow us to sleep and not get those night hits..........also Red Bull at the onset of an attack helps for many, as for me also...........read all info to the left, there is a post"letter to colleagues", which is good to print off and give to those you work with, and whomever else....................hope u feel better soon, we are here for you..........if it wasnt for me finding this site, i dont know what i would have done.............PF wishes going your way ...keep reading and keep asking questions!
deb
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ajarmstrong
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Anybody seen Mighty Manfred?
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Re: Just diagnosed
« Reply #2 on: May 22nd, 2008, 7:43am » |
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Thanks for the kind words. I'm just starting out, so I don't have a lot to go on. The doctor gave me a script for Midrin. I can take up to six in a day. He said he wanted to start out small and then work our way up if need be. The Midrin works. I start taking it as soon as my eye starts twitching. Then one an hour. It does help.
One of the things that I've noticed is that my legs feel funny when I take the Midrin. I figure that is because it is a vascular constrictor and that it is affecting the blood flow in my legs?
OH! And my wife reminds me that I should have told ya'll that I had a heart attack last year, had four heart surgeries and then just last month I had a pace maker put it. FUN!!!
I'd been having what I'll call premonitory symptoms for years. These usually lead to headaches, but the doctor always diagnosed it as sinusitis because it always started in the spring and then again in the fall. It wasn't until I started doing some research and that I finally noticed that these headaches were very cyclic in manner. Then I started keeping a diary and showed it to the doctor. BINGO!!!
I've been working from home the past two weeks. I work when I can and rest when the CH starts. When I say rest, I mean I sit in my desk chair and rock and rock and rock. That seems to help me during the highest pain cycles.
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debOUCH
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..i think to myself, it's a wonderful world..
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Re: Just diagnosed
« Reply #3 on: May 22nd, 2008, 8:20am » |
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never heard of Midrin.........if it works, that's a plus..............have u tried the melatonin for sleep if u r getting hit @ night? ugggggggggggggg all that other stuff and CH to boot! keep reading and absolutely print out that letter!
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Audre
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I love YaBB 1G - SP1!
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Re: Just diagnosed
« Reply #4 on: May 22nd, 2008, 9:12am » |
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Wow, that's a lot to go through! Seems like you're not letting it get you down though. That's one of the best things you can do - keep a healthy, peace of mind, it's much easier to fight the pesky little devil off. When I start getting down on myself, it does seem to get worse, which makes me more down...it's just a vicious cycle. So keep your head up and if you ever need a pep talk, don't hesitate to speak up on here. 
Midrin is a combination of three drugs, tylenol for the pain, something to narrow the blood vessels in your head and something else to help relax the body. Since you've had a heart attack, heart surgeries and a pace maker, make sure you're very careful about the amount you're taking and if you notice fast/irregular heartbeats, stop taking it and let your doctor know ASAP.
As for the legs feeling funny, try talking to your doctor about it and see if there's a lower dosage you could try taking and see if that still helps with the headaches.
You should also talk to your doctor about getting oxygen. A lot of people use that and it helps. Would be much better and safer for you than taking Midrin and having to worry about the side effects, feeling funny and addiction/withdrawal symptoms.
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Charlotte
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Re: Just diagnosed
« Reply #5 on: May 22nd, 2008, 9:38am » |
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maybe the heart and surgeries were why he prescribed midrin instead of imitrex. When I used it, it worked for me until I hit the high cycle.
Also, please ask your doc for o2. Mention that ch needs a higher flow, 15-25, and ask for a nonrebreather mask. Concentraters may help but they can not get a high enough flow when you really need it.
Charlotte
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| « Last Edit: May 22nd, 2008, 9:38am by Charlotte » |
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DennisM1045
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Re: Just diagnosed
« Reply #6 on: May 22nd, 2008, 10:30am » |
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+1 on the Oxygen. When I feel it coming I get on the O2 and in 10-15 minutes I'm pain free. No side effects.
With your heart condition I'd be warry of all vasoconstrictors.
Check out the info at www.ouch-us.org on O2. There are articles you should print out and bring to your Dr that will help convince him/her that O2 is the way to go.
Be careful...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Bob_Johnson
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Re: Just diagnosed
« Reply #7 on: May 22nd, 2008, 10:42am » |
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I trust you are working with a headache doc who can monitor your treatment with regard to the heart history.
Suggest you print this message and ask the doc if this would be acceptable as an abortive. Several of us have had excellent results with it.
=========
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.
------------------------------------------------------------------------ --------
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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