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Topic: Thanks for the support! (Read 360 times) |
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Sweet_Landings
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Beware of the Dumb side of the Force!
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Thanks for the support!
« on: Apr 30th, 2002, 8:58pm » |
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Thank you all for the support. Today has been better. just a few CH and only kip 4 or 5 and relatively short (didn't time them).
As for the TN:
I have tried Dilantin, Neurontin and Baclofen with no results at all. Carbamazepine works for a while at whatever dose I am at, presently 600mg in 3 divided doses daily, and then after a while it stops and we raise the dosage again. I think that surgery is going to be my best bet if I am a cadidate for it. I have read most of what is out there about the TN and at this point hope that I can have the surgery.
As for the CH:
I only use the Hydrocodone when I am at wits end. Have tried the Ocxycontin once and did not like the side effects, will not use that again. I hesitate to use the Migranol except as a last resort due to the expense and no insurance. But after last night I will take it at the first sign of anything that I think is going to be hellish. I feel like I have one coming on now and am dreading it.
The only time I have pain around my eye is with a CH. On occassion I have had TN attacks that have incorporated all three branches at once, but only before I started Carbamazepine. Since then it has stayed in the lower two branches. I do have TN bi-laterally, so sometimes I have both TN and CH attacks on the same side (Right), but not that often thank goodness.
I know that some of you may doubt my dx of TN due to age factors and such. I however do have it and it is most likely a result of severe head trauma sustained in two separate car accidents in the past. I have had three opinions to validate that yes it is TN and yes I have CH.
It seemed for a while that the carbamazepine and verapamil were making some headway, but the last week things have gotten worse again. The low doses that they have me on are probably not enough. This was the case a few months ago and when they raised the dosage I had some rellief from both disorders.
Again, I appreciate all your support and may you all have PFD soon.
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Sweet_Landings
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oringkid
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Re: Thanks for the support!
« Reply #1 on: Apr 30th, 2002, 11:16pm » |
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PFDAN's to you too Sweet!
Here's hoping you find the right combo soon!!
Sherry
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Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
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Re: Thanks for the support!
« Reply #2 on: May 1st, 2002, 12:32am » |
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Glad you're feeling better.
You did not mention Oxygen in your post.
If you're worried about insurance and a perscription, you can get a bottle of welders oxygen and you can find the right kind of regulator on ebay. Ask Jonny for more info on this, I'm sure he has something he can "paste" to you 
Also, cluster sufferers have been known to get up to 900mg's of verapamil. Don't know what mg you are on now, but might consider an increase.
Good luck!
Mast
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Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Sweet_Landings
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Beware of the Dumb side of the Force!
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Posts: 118
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Re: Thanks for the support!
« Reply #3 on: May 1st, 2002, 9:14am » |
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I get my meds thru the VA but some like Migranol and O2 and Imitrex shots and meds like that I can only get thru the neuro. My first appt. with the neuro is not until June 12th.
I have been printing lots of information from this site and OUCH and others so that when I do go in I am as informed as possible. I am going to ask him about the Imitrex shots and O2. I am also going to ask him to increase my Verapamil, they have me at 200mg right now.
Last night I had one nasty one ranging around kip8, I used the Migranol spray and it relieved it enough that I could get some sleep.
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Sweet_Landings
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Greg_A
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Re: Thanks for the support!
« Reply #4 on: May 1st, 2002, 10:06am » |
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Hi Sweet-- I went through the same thing with the VA. I had to wait to see the neuro to get the o2, well she made the suggestion, then my GP prescribed it. To get o2 you will most likely have to go see a pulmonary doc which is who i go see this friday. But they delivered the o2 2 weeks ago. Guess he just wants to check me out.
As far as imitrex, i belive the VA GP can prescribe that. Mine first gave me the nasel spray, then the neuro wrote a script for the injections.
Verap: i had them change mine to regular from SR and since then have had nothing but good results. I'm on 720mg a day along with lithium at 350.
If you do lithium they will set you up with some lab work a couple months out to make sure your tolerating it ok... i went yesterday to have that done.
Good luck, just thought i would let you know what i went through with the VA.
Greg
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