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Topic: New to the list but not to CH (Read 230 times) |
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TGom
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New to the list but not to CH
« on: Jul 5th, 2006, 4:53pm » |
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Hi
I'm Tom from Colorado. I've been having Clusters for about 35 years and can only wish there had been a place like this back then. Thanks to all that have posted with information that helps those with the headaches. Now If I could get as much help from the doctors as I do from this list, I would be happy (and my head wouldn't hurt).
Thanks again
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Redd
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Re: New to the list but not to CH
« Reply #1 on: Jul 5th, 2006, 6:20pm » |
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Welcome Tom,
You want better care from your Doc...print this out and take it to him/her. Demand a referal to a headache spesialist in the neurology deptartment and have a second copy for him/her for when you go.
http://www.brightok.net/~mnjday/chtherapy.pdf
Best all in one reference you'll get for this to get the Doc on the right path for you.
Get an MRI if you haven't already to rule out other possible issues as well.
Keep us posted.
Redd
edit cuz my fingers are faster than my brain.. 
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| « Last Edit: Jul 5th, 2006, 6:21pm by Redd » |
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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LeLimey
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Re: New to the list but not to CH
« Reply #2 on: Jul 5th, 2006, 6:52pm » |
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Hello Tom and welcome,
pull up a pew and tell us a bit more about you, what meds you use, how long your hits/cycles last and let's see if there isn't something we can do to help you!
Looking forward to hearing more from you
Helen
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George_J
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Re: New to the list but not to CH
« Reply #3 on: Jul 5th, 2006, 7:42pm » |
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Hi Tom,
Good to hear from another long-termer. Remember that you can certainly learn a lot from this site, but you can also contribute a great deal--your experience fighting the monster for so many years is extraordinarily valuable.
Remember all those years ago when you first started? How frightening it was? There are many, many people here who are just starting out with these things and don't know how to handle them.
I look forward to your contributions.
Best regards,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Richr8
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Re: New to the list but not to CH
« Reply #4 on: Jul 5th, 2006, 8:04pm » |
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Hi tom,
Welcome! Let us know what does and does not work for you. It's all about sharing experiences and sipporting our family here. If you are not using Oxygen, I would stongly suggest that you read the panel on the left side. "oxygen inf." It works small miracles for many of us.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Charlotte
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Re: New to the list but not to CH
« Reply #5 on: Jul 5th, 2006, 8:13pm » |
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Welcome aboard. Welcome to the family.
Charlotte
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TGom
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Re: New to the list but not to CH
« Reply #6 on: Jul 5th, 2006, 10:10pm » |
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Hi all
I realy didn't expect so many replies from my intro but they are all appreiated.
My family doctor is who is writting the scripts for the headaches but he was out of the office today. When I call the neurologists, I get some damn ribbon clerk that knows nothing about Clusters and insists that the only opening she has is 4 weeks away. I have given up on them and will deal with the family doctor. He does seem willing to write the prednasone script but it's only been about 8 weeks since he did it the last time, not sure if he will do it again so soon.
My headaches started, like I said, about 35 years ago and at the time, no one knew a thing about them. All I could do was put up with the pain and wait until they came to an end. The second time was a few years later and it was the same thing. I saw every kind of doctor known to man and they wanted to do things like surgery to see what was inside my head. I told them nothing was there and I guess they believed me. About that time, my sister, a nurse, asked a friend , who is a neurologist, to give me a look. This guy knew everything about Clusters, talked to me about 2 minutes in the hospital and said I would be on my way in no time. He was right, when I woke up 3 days later, the headaches were gone, I had pills to take and lots of information on Clusters.
Since then, the doctor moved, I moved, and it seems like everytime I start to hurt, I have to find a doctor and explain to them what Clusters are all about. I think it actually puts them off to have dumb ol me tell them what they should already know.
For the record, I do use the air while I'm waiting for the pills and the prednesone works every time, almost within minutes of taking it.
It really is good that there is a group like this to talk to, it does help.
Later
Tom
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LeLimey
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Re: New to the list but not to CH
« Reply #7 on: Jul 6th, 2006, 6:46am » |
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Tom I see you had pred two months ago - did your doctor not put you on any prophylactic meds such as verapamil at the same time.
Verapamil is front line defence against CH but it can take a couple of weeks to kick in hence usually combined with a pred taper which covers you during that interim period.
If you just have the pred without anything else then once you stop it there is every risk the cycle will come straight back.
You should also be looking at abortive meds such as triptans for when you do get hit.
This time ask your doctor for verapamil as well. You do need to have an ECG on verap as it is actually a BP med and you should get the ordinary version of it and not the SR or sustained release as the SR has been proven to be less effective for the majority of CH sufferers.
Read the link on CH Therapy given above, its about the best resource you can have and refer your doc to it too
Let us know how you are getting on okay?
Helen
PS in the interim high energy drinks containing caffeine and red bull have been very effective at aborting hits for a lot of us, you might want to try that 
Melatonin is another supplement which alot of CH sufferers swear by for getting them through the night.
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Bob_Johnson
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Re: New to the list but not to CH
« Reply #8 on: Jul 6th, 2006, 7:15am » |
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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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