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Topic: Newly Diagnosised (Read 253 times) |
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Jbrigham77
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Newly Diagnosised
« on: Apr 19th, 2006, 2:12pm » |
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I got my diagnosis with CH yesterday. I have had 3 episodes in the past 3 yrs. This one I am having now is the worst yet. I went from Fioricet to imitrex pills to intranasal and now to injections. I actually got to sleep last night. I think I am coming out of the cycle. I have been in for the past 4 wks now. The last 2 lasted about 5 wks then poof, I felt "normal" again.
I saw the neurologist for the 1st time yesterday, after 3 ER visits, CT scan and tons of blood work. He asked me a few questions, like what time I get the HA, how I feel during them( if I wanted to bang my head against the wall kinda pain or not) I actually slept all night last night, but can feel in my head that another is coming tonight. I am starting to feel the icepick men(thats my name for the feeling I get when I get a CH. feels like a thousand icepicks being driven into my head)
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| « Last Edit: Apr 19th, 2006, 2:12pm by Jbrigham77 » |
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Bob_Johnson
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Re: Newly Diagnosised
« Reply #1 on: Apr 19th, 2006, 2:58pm » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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Jbrigham77
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Re: Newly Diagnosised
« Reply #2 on: Apr 19th, 2006, 7:09pm » |
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Thanks for the info. I know another attack is coming tonight. I can feel it in my skull. I slept through the night last night, meaning I am close to the end for this episode. A wk of every other night, then a wk or 2 of every couple days then it stops for another 1.5 yrs. So my Dr said that we would just treat them as they come, if they start to come more often, then we will talk about preventative measures, but right now, since they are every yr or so, it wouldnt do much good. I can't take the steriods they use, I am allergic to them, and know enough about Ergot that I will not take it. I know that my attacks are not involved in my cycle. Due to my other health conditions, I technically don't have a cycle right now. I take straight birth control to stop it. And this episode started 4 wks ago, and is starting to lessen in frequency. But will be sure to check out those books the first chance I can get.
I have read some posts about Kudzu? what is that exactly? I am going to try the www treatment for the end of this episode and see if it helps any.
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RichardN
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Re: Newly Diagnosised
« Reply #3 on: Apr 20th, 2006, 1:06am » |
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Copy the link that Bob posted above . . . take it to your doc and get a script for 02 . . . works for 60-70% of us to abort. I can't take Imitrex (arterie blockage and high cholesterol) . . . so 02 is my only abortive. If it works for you, you can save the Imitrex for the attacks the 02 doesn't reach.
I am another firm believer in the water X3 treatment . . . go fer it . . . can't hurt.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Jbrigham77
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Re: Newly Diagnosised
« Reply #4 on: Apr 20th, 2006, 7:59am » |
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I started the water treatment yesterday. I knew an attack was coming all day,I got 2 during the night.. the times are changing, slightly.. so hopefully soon, I'll be done for a while. I hate needles but did stick myself 2 times last night.. I dont get them generally during the day.. and can take tylenol to get rid of the shadows today. I have plenty of water with me today and starting taking my vitamins again. Trying to find Kudzu but cant find it anywhere around here yet..,
Hopefully today is a PFD>
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Garys_Girl
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Re: Newly Diagnosised
« Reply #5 on: Apr 20th, 2006, 11:26am » |
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For a lot of us, Kudzu has to be purchased online. I used www.iherb.com.
If you want to find it locally, the best thing to do is to grab the yellow pages, look up "Health Food Stores," and start dialing. If they say they have "Kudzu Recovery" by Planetary Herbals/Planetary Formulas, that works well, too, even though it does have other ingredients.
You do NOT want Kudzu Starch or "Kuzu starch"!
Also, have you tried Melatonin? Melatonin helps regulate sleep cycles, and it comes in 3mg and 5mg supplements. Most take 9mg - 12mg. Hubby takes 10mg. It helps many suffering from CH make it through REM sleep.
Good luck!
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____________________________________
Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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Charlie
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Re: Newly Diagnosised
« Reply #6 on: Apr 20th, 2006, 1:49pm » |
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Welcome to the madhouse but I'm sorry it has to be because of this horror. It sounds like you found a good doctor. Lots of good advice here and something that worked for me:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Jbrigham77
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I'm Me, nothing more, nothing less.
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Re: Newly Diagnosised
« Reply #7 on: Apr 20th, 2006, 3:50pm » |
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Charlie, it might just be as simple as mind over matter. I have learned to do breathing exercises to relieve the severe abdominal pains I get and it works at least on the minor attacks. or helps me get through until the meds can start to work. I had a minor one today at work, but we have a room that is quiet and dark that people can use for injections and so on. I was in there an hour, but am able to function. The day attacks always seem to be not as bad but I am wondering if it could have been those rebound HA I have read about after using Trex?
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