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Topic: Finally got a diagnosis... (Read 698 times) |
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Tami
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Finally got a diagnosis...
« on: Dec 11th, 2005, 10:12pm » |
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David, n4xft, finally got a diagnosis. New doctor says it is definitely clusters. Though we are not happy about that, we are happy that we now have a doctor that is familiar with CH.
He gave Dave a prescription for oxygen, though we already have it set up. (Thanks Randy and Ben!)
He also gave Dave a prescription for Toradol, with instructions to take it only if he is out and can't get to the oxygen, and no more than five times a week. It is a NSAID analgesic. The only info I have found on it scares the heck out of me. http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/tor1453.shtml
Unless we can find more info, we are not going to fill it since it would be better to live with the pain than die with the meds!
Has anyone else been prescribed Toradol or heard of it?
On a happier note, we think Dave may be cycling out, but since this is our first time, we don’t know for sure. He is down from 6 to 8 headaches a day to one midnight hit, and the oxygen takes care of that one.
Tami
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gobby
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I wish I had Migrains instead!
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Re: Finally got a diagnosis...
« Reply #1 on: Dec 12th, 2005, 12:37am » |
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Yikes!!!!!!!!! I've never tried that stuff, and I don't think I ever will after reading that info.  I find it ironic that one of the side effects may be "headaches". I am certainly no expert here,but my gut feeling is that if he's down from 6-8 attacks a day to 1 and the O2 is working, stick with the O2 because it does sound like the cycle is comming to a close.,and you always have the precription if it becomes absolutely nessary. It just sounds like a strange thing for a doctor who seems to know what he is doing to prescribe. I would have expected something like Verapamil.
Glad to hear his attacks are falling off though. Hopefully he'll be pain free soon!! 
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Barry_T_Coles
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Re: Finally got a diagnosis...
« Reply #2 on: Dec 12th, 2005, 2:26am » |
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Hi Tami
I gotta agree with gobby, I looked at a few med sites and they dont give Toradol a good wrap.
Stick with the o2 if it's working.
Hope things get better soon.
Kind Regards
Barry
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lionsound
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Re: Finally got a diagnosis...
« Reply #3 on: Dec 12th, 2005, 5:43am » |
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Be careful.....NSAIDS can cause rebound HA.
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chewy
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Re: Finally got a diagnosis...
« Reply #4 on: Dec 12th, 2005, 7:43am » |
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Quote:| a prescription for Toradol |
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Quote:we are happy that we now have a doctor that is familiar with CH.
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I wouldn't be to sure about that.
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Tami
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Re: Finally got a diagnosis...
« Reply #5 on: Dec 12th, 2005, 8:07am » |
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on Dec 12th, 2005, 12:37am, gobby wrote:| It just sounds like a strange thing for a doctor who seems to know what he is doing to prescribe. I would have expected something like Verapamil. |
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Guess I should have qualified David's new doctor being "familiar with CH". One of his patients came to him about 2 years ago with CH and he didn't know what they were. After the patient showed up at his office every 3 days for a couple of weeks, he realized she wasn't doctor shopping and did his homework.
From the beginning, we just wanted a diagnosis. David has always been healthy and never had to take medicine for anything. He doesn't want to start now if he can find an alternative. We have tried Kudzu and one other alternative. The Kudzu worked great and may have been responsible for getting him down to one hit a day. He stopped taking it when we got the O2 since we are not sure of the long-term effects.
He is now experimenting with the RC seeds. He has dosed twice now, and each time he is PF the night of the dose, but the midnight hit comes back the next night. We are going to continue experimenting until we find the right dose. We're up to 25 seeds right now.
Thanks for the advice. I think we will stay away from the Toradol...
Tami
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Bob_Johnson
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Re: Finally got a diagnosis...
« Reply #6 on: Dec 12th, 2005, 8:56am » |
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Unless the standard abortives have failed, the use of pain meds as a first response is not appropriate and is not the standard of practice to treat clusters.
Toradol is a wonderfully effective med for use after, e.g., surgery, but it's not something to be used as frequently as would be necessary in your situation. Just too toxic for use more than a few days.
If you are going to have to stay with your present doc, you need to educate him in current therapies. Suggest you print this one out and give to him. It's written by one of the better headache docs in the U.S.
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
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Also,
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 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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| « Last Edit: Dec 12th, 2005, 8:58am by Bob_Johnson » |
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Bob Johnson
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burnt-toast
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Re: Finally got a diagnosis...
« Reply #7 on: Dec 13th, 2005, 4:36am » |
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Unfortuantely, no matter how experienced with CH the Neurologist I'm seeing is, we have constant battles over meds.
The Doc. always seem to want to prescribe the latest/greatest/stronger/more dangerous meds. while I push for meds. that are known to be effective but have side effects that are more acceptable to me.
You need to do some research - this cycle may be coming to and end but most likely a new one will eventually start. You want to be prepared with med. options that you find acceptable if/when that occurrs.
Good Luck - most of the meds. prescribed for CH were really developed to treat other conditions. It can make researching some options a little difficult.
Tom
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Orion
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Re: Finally got a diagnosis...
« Reply #8 on: Dec 15th, 2005, 3:44pm » |
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<from Bob Johnson posting> 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
Thank you Bob, that article had me saying Amen all through. Today I met with a new neurologist and he suggested the occidital (sp?) nerve blockade. Well I knew what it was because I had the article and said OK. I'll be looking for the book you recommended. 
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Karla
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Re: Finally got a diagnosis...
« Reply #9 on: Dec 15th, 2005, 3:53pm » |
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Ask to try imitrix or zomig or axert or frova or amerge. They all have the potential to abort the ch. I personally use imitrix nasal spray. I have been given injections of torodol with demerol for migraines and it works where the demerol alone won't work but with the toradol added I find relief. It does nothing for my ch. Won't touch it. I read your posting on the meds and it says not to use with lithium. Well they did with me, loosers. I experieinced no side effects with it. But wouldn't recomend it for ch.
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Karla
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