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Topic: Back again (Read 206 times) |
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Moni74
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Hi everyone.
I was here a couple of years back after my first cluster attack (of 5 nights, which by comparison now seems ridiculous). I never suffered a second one until four weeks ago. When I woke up and felt the strange sensation in the right side of my head, it was instant recognition - and dread. The eye, the nose, the excruciating pain... same spiel all over again. The attacks are much more vicious now and they haven't let up three weeks in a row.
A new doc prescribed Prednison to break the cluster and it did work for almost a week. Until this morning. Now that I was about to go off and had the dosage back to one pill of 20mg, it came back.
The doc wants me to take another week of Prednison and then, if the same occured again, continue on with Verapamin. I want to do anything to get rid of that pain, but my family is giving me sh*t about taking cortisone and other "bad" medicine, including high-dosage of painkillers all the time (which usually don't help much anyway).
I have an appointment at a homeopath's this coming Monday to appease my Mom and to search for a different kind of solution.
Thing is, after three weeks of attacks with only a short break, I'm drained, I'm beat, I'm just at my wits' end. I want this pain to be gone and I don't want it to come ever again. I'm in denial that I might have to live with this for the rest of my life.
Has anyone here take been taking Prednison for a longer period of time? Or Verapamin? Any thoughts, comments?
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karma
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Re: Back again
« Reply #1 on: Feb 25th, 2005, 9:19am » |
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Moni,
The pred is usually prescribed WITH Verapamil.
The pred is used to limit the hits while the verap is used as a prevent and needs a week or so to build up in your system. The reasoning is that when the pred becomes inaffective the verap has kicked in. Verap is commonly used at 480 mg per day or higher. Lower doses seem to be inaffective for most. Many people take verap for years, some for CH and more for high blood pressure. Long term pred use will have serious consequences.
Quit the pain killers. They may be making things worse (rebounds)
Look into oxygen and read the Kudzu thread.
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Moni74
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Re: Back again
« Reply #2 on: Feb 25th, 2005, 11:11am » |
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Thanks for the info, Karma. 
Looks like there's much more information and people to talk to about this in the US. Here in Germany, many doctors get a blank look when they hear about cluster headaches. In fact, I had to tell mine that I think this is what it is...
The medication I mentioned was prescribed by a neuro specialist I went to and even he had to look things up in a book. Didn't give me much confidence about his expertise. Thanks also for correcting me on the name of the drugs. I'm a newbie to this trade. And how I wish I wouldn't have to know the correct ones.
The O2 thing intrigued me right away. I'd love to have some form of relief that isn't pharmaceutical. Will talk to the doc about it next time. I'll look into it.
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floridian
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on Feb 25th, 2005, 11:11am, Moni74 wrote:Thanks for the info, Karma.
Looks like there's much more information and people to talk to about this in the US. Here in Germany, many doctors get a blank look when they hear about cluster headaches. In fact, I had to tell mine that I think this is what it is...
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Many doctors are not familiar with clusters - in the US, in Europe, and in all other countries. Because it is a 'rare' condition, we need to educate ourselves and (when they will go along) educate some of the doctors.
Sorry you had to return here.
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Bob_Johnson
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Re: Back again
« Reply #4 on: Feb 25th, 2005, 11:39am » |
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Prednisone is a reasonably safe med when used under the care of a good doc. It's not uncommon to have to go through more than one round to get relief because the dose has to be increased. The range of the starting dose runs from 10 to 100 mg with 60mg being common.
Suggest you print out this document and use it as a way of talking to your doc about various meds.
http://www.headachedrugs.com/pdf/HA2005.pdf
Finally, do your best to follow your own judgment about how you will care for yourself. Attempts to meet other people's expectations and pressures will only add to your burden. If you don't do exactly what they want, their pressure will likely continue.
You will find some useful information here:
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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| « Last Edit: Feb 25th, 2005, 11:40am by Bob_Johnson » |
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Bob Johnson
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Moni74
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Re: Back again
« Reply #5 on: Feb 27th, 2005, 4:26pm » |
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Thanks for all the info, guys.
Well, FWIW, I'm back on 80 mg Pred and will try to dose down again this coming week. No attack today or yesterday. So far so good.
Or not. Honestly? This thing scares the sh*t out of me. I wish my ct would have revealed something they could cut out and treat instead of suffering from something most people just don't "get".
Headaches? Sure, we all had headaches. When we've been out drinking too long *wink, wink*. NO!! You have NOT been there and I don't wish this on my worst enemy.
My husband is alternately scared (like when I wimper and cry and rock back and forth and tell him to prepare to get me to the emergency room) or unnerved, when every day things start to not go the way they used to go because of my just being "out" due to repeated nightly visits of "the beast".
Sigh. Sorry for rambling. I don't know what to make of this yet. Have to come to terms with it first. Somehow.
Thanks again.
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