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Kevin_M
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Have to see what they have to say
« on: Jan 2nd, 2004, 8:02pm » |
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A new headache clinic has opened up in my county, an extension of a large hospital. I'm going in for a visit and do some talking myself, but am eager to hear what they have to say. I'm enlisting, looking for a better way to cope. No high hopes but I have to do what I can. Scanning our medical survey, not too many are eager to recommend but this website has educated me to options. I'm sceptical, anyone been schooled to a higher knowledge than what they already know from this websight? Currently I'm burning through a lot of nasal imitrex, fiorcet, and pamalor with very recurrent visits daily and nightly. Maybe oxygen next. I gotta hear what is going to be said there, give it a try. Don't take this as dishopeful, just very familiar with the beast. 
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KarenT
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Re: Have to see what they have to say
« Reply #1 on: Jan 2nd, 2004, 8:18pm » |
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Kevin,
I'm not the sufferer, my husband is but we suffer TOGETHER. That said, I can understand your apprehension about the medical community. I'm a member of said community and I didn't know a darn thing about CH til I got here.
All I can offer is : go prepared with your info from this site, hope for the best and as Jonny once told me, "Never take no for an answer."
Good luck and let us know how everything goes.
Karen
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Kevin_M
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Re: Have to see what they have to say
« Reply #2 on: Jan 2nd, 2004, 8:30pm » |
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To offer a "no" would display ignorance. I am expecting knowledgeable banter, but feel the medical community is reaching in the dark. I feel there is not a big enough market to put research money into CH, it being uncommon. However, they must understand the empathy keep trying. I will provide feedback for them though. I didn't catch this one in time, I gotta go.
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Kevin_M
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Re: Have to see what they have to say
« Reply #3 on: Jan 2nd, 2004, 8:31pm » |
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To offer a "no" would display ignorance. I am expecting knowledgeable banter, but feel the medical community is reaching in the dark. I feel there is not a big enough market to put research money into CH, it being uncommon. However, they must understand the empathy keep trying. I will provide feedback for them though. I didn't catch this one in time, I gotta go.
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Patrick_A
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Re: Have to see what they have to say
« Reply #4 on: Jan 2nd, 2004, 9:24pm » |
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Have ya tried Prednisone and Verapamil. That combo stopped mine in its tracks!
PF since August!
Patrick 
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Kevin_M
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Re: Have to see what they have to say
« Reply #5 on: Jan 2nd, 2004, 9:26pm » |
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KarenT,
Sorry, I did not acknowledge your response that, though not a sufferer, you do suffer with someone. You do have an understanding and have experienced the helplessness. You have quite a skill. Quite a human skill, tolerant and accepting, exceptional.
And perhaps curious too. What do you think of this:
Two researchers in Milan have discovered on chromosome 1 (ATP1A2) a malfunction of the pump which shifts sodium and potassium through the cell causing cells to swell. They are pursuing this as a related cause. Just an interest. I would be interested in how to find this research.
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Kevin_M
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Re: Have to see what they have to say
« Reply #6 on: Jan 2nd, 2004, 9:56pm » |
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Have ya tried Prednisone and Verapamil. That combo stopped mine in its tracks!
PF since August!
Patrick
Patrick, a person I talked with here years ago had certain results with verapmil, a calcium channel blocker which prevents calcium from entering certain cells in the brain and muscles. It hasn't been recommended by my doctor yet, but he's reaching, having been handed me back again by a neurologist who didn't seem to want to deal with the problem when Depakote was unresultful.
A couple side effects, it affects intestinal muscles, can make lethargic and some water retention, but I have heard fair responses.
Prednisone, a steroid should be tapered gradually lower for a 2 to 3 week period. Extended use of any steroid has many side effects. My CH's last longer than that.
The first is a consideration I will discuss with them.
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Rick_K
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Re: Have to see what they have to say
« Reply #7 on: Jan 2nd, 2004, 10:32pm » |
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on Jan 2nd, 2004, 8:30pm, Kevin_M wrote:
I feel there is not a big enough market to put research money into CH, |
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No shit, three fuckin cheers for the drug companies.
Check out the link to the left on oxygen and get yourself some O2. It does not work for everybody but does help a lot of us.
Good luck on your appointment.
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Charlie
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Re: Have to see what they have to say
« Reply #8 on: Jan 2nd, 2004, 11:20pm » |
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What ever do you mean? Those wonderful drug companies have told us that they have to make drugs that support important research so they can produce drugs that do the most good......like Viagra. 
Charlie
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Kevin_M
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Re: Have to see what they have to say
« Reply #9 on: Jan 2nd, 2004, 11:57pm » |
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Check out the link to the left on oxygen and get yourself some O2. It does not work for everybody but does help a lot of us.
Thanks Rick,
I can see using the O2 at home, but not at work. Using it in conjuction with "other" helpful remedies though would definitely aid in not using too much Imitrex. I'm like every 3 hrs for the last two months. Gonna see about adding that in. May need to refine some tips about using it though. Have picked up some pointers from O2 users here. Hope it will work, I can't get prescrioptions enough to cover how many times I get the visit. My doctor can only go to the limit of 3 Imitrex a day and 6 fiorcet. My pharmacist says he's been audited twice for dispensing that much Imitrex, besides the fact I use more than that most days. This seems way too dangerous, besides sickening. I supplement by off the shelf bottles of headache junk to help also, going through quite a lot. This is ridiculous. O2 would help I think.
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Rick_K
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Re: Have to see what they have to say
« Reply #10 on: Jan 3rd, 2004, 12:14am » |
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Kevin, O2 is a beautiful thing...
There are small tanks that you can carry around and keep a large one at home or you can just say fuckem and keep your tank with you all the time. I know it is tough to have the O2 at work but.........why not. It's cheap and will not hurt you and hopefully will help cut back on imitrex, hell man it's just oxygen and who cares what other people think. It's all about you feeling better and getting some relief. The O2 will help kick the beast in the ass and as you know we need all the help we can get. Give it a try........
"Have you hugged you O2 tank today?"
Rick
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| « Last Edit: Jan 3rd, 2004, 12:18am by Rick_K » |
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Cerberus
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Re: Have to see what they have to say
« Reply #11 on: Jan 3rd, 2004, 12:19am » |
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Well, I reckon ifn ya Must do it, then, best of luck to ya.
I ain't got more n that.
Ramon
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Renee
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Re: Have to see what they have to say
« Reply #12 on: Jan 3rd, 2004, 12:30am » |
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Get o2.
I have a tank at home, a tank at work and a small tank that goes in a shoulder strap to carry with you in vehicle, sports events, etc.
My o2 has become my constant companion and it aborts most but not all. Must hit the o2 at first sign of pain.
good luck
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Kevin_M
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Re: Have to see what they have to say
« Reply #13 on: Jan 3rd, 2004, 12:36am » |
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Rick,
I've pretty much concluded it's neccessity. I'm logging off to sleep watching Apollo 13 with three icepacks in the freezer also to alternate through the night. They help until meds can catch up to it. Just routine.
'preciate the ways of getting by, by the survivors. It's been a long visit this time around, like last time. Doing what we can is what it's all about.
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Rick_K
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Re: Have to see what they have to say
« Reply #14 on: Jan 3rd, 2004, 6:01pm » |
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Good luck Kevin........
Good thoughts and PF vibes are coming your way.
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