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big guy
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morning..notice I didn't say good
« on: Jul 27th, 2006, 5:48am » |
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I just found this site. wow. Sitting here at 5 in the morning because I am afraid to try to go back to sleep. have had two maybe 8's and one about a 6. been up all nite. To introduce myself, I am a long time sufferer from age about 13 to 34 then the CH just vanished. Well the Dr's said I might out grow them. Well, after 19 years , Their Back!! I am 2 weeks in to the cycle. My previous neurologist is no longer practicing, my family Dr is very willing to prescribe anything I think will help, but I don't think he has treated clusters before. Seems everything I used in the past is either no longer made or fallen out of favor (cafergot pb, Sansert, lithium, two many useless pain pills to count, and some I can't remember.
I will read some more about current thinking on treatment so I don't ask questions allready asked
Later
big guy
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chewy
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Re: morning..notice I didn't say good
« Reply #1 on: Jul 27th, 2006, 6:15am » |
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This is my med regimen. Might help ya.
480mg of verapamil per day
prednisone taper
imitrex injections to abort
melatonin for sleep.
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big guy
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Re: morning..notice I didn't say good
« Reply #2 on: Jul 27th, 2006, 6:34am » |
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thanks
My Dr has started me on prednisone (my suggestion) and indomethacin (his idea). I wanted ergotamine inhaler or nasal spray but have been unable to locate them yet.
big guy
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LeLimey
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Re: morning..notice I didn't say good
« Reply #3 on: Jul 27th, 2006, 6:42am » |
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Indomethacin is used for Paroxysmal Hemicrania with great success but with very few instances of it doing anything for anyone with CH.
Get yourself back to the doctor and switch to verap asap before you run out of pred taper.
One thing I'd really like to thank you for is your mentioning your huge great 19 year remission. I've got a son with CH too, I've been sat here this morning feeling as miserable as sin about him and his upcoming cycle and you're post just kicked my arse into touch! I feel much better now so thank you. You've reminded me to think positive 
Helen
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chewy
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Re: morning..notice I didn't say good
« Reply #4 on: Jul 27th, 2006, 6:44am » |
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Indomethacin probably wont help you. There are better CH drugs out there.
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big guy
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Re: morning..notice I didn't say good
« Reply #5 on: Jul 27th, 2006, 7:02am » |
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I found out last nite that the indomethacine was not helping. I will be calling the Dr today. Right now the only thing that seems to help is a scalding hot shower. I am starting to feel like a lobster.
Glad to hear my 19 year remission is encouraging.  I am trying to keep telling myself how lucky I am, but now that they are back the pain seems all too familiar
Got to go try to get ready for work. My boss is not at all understanding. I will be back tonight
big guy
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Brew
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Re: morning..notice I didn't say good
« Reply #8 on: Jul 27th, 2006, 7:59am » |
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Also, try to locate a compounding pharmacy (sometimes called a formulary). Methysergide maleate (also called Sansert) can be made by a compounding pharmacy. It's not illegal, it's just not manufactured by Sandoz anymore for distrubution in the USA.
You could also get it over the internet from Canada.
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TxBasslady
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Re: morning..notice I didn't say good
« Reply #9 on: Jul 27th, 2006, 1:28pm » |
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Welcome to the board.
Looks like you've received good info from the previous posters...
Good Luck,
Jean
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big guy
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Re: morning..notice I didn't say good
« Reply #10 on: Jul 27th, 2006, 10:27pm » |
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Thanks for the welcomes and the good links and advice. Got back with my Dr today. I am now on prednisone 40 mg a day and verapamil. I also got dihydroergotamine nasal spray to try for acute attacks. I have not used it yet. At the price it is I think i wil save it for a seven or above. I am going to pass on the Sansert If at all posible. I took it years ago, and while I didn't mind the 2 or 3 days of Hallucinations too much then, thats not really my cup of tea now.
It's good to finally know I am not alone in this, although I wouldn't wish this on my worst enemy. I am going to try to sleep tonight
Talk to you later
Big Guy
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Barak
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Re: morning..notice I didn't say good
« Reply #11 on: Jul 27th, 2006, 11:20pm » |
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sorry im a little late getting here but i just wanted to wish you welcome to the board. i dont have any advice that hasnt alrady been given. i had a long remission as well and i know the feeling of getting smacked in the face all of a sudden. just keep your chin up and ask if you have any questions or just want to talk. i wish you and your family the best
Barak
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chewy
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Re: morning..notice I didn't say good
« Reply #12 on: Jul 28th, 2006, 6:10am » |
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What is your veramil dosage and is the prednisone daily? For how long?
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big guy
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Re: morning..notice I didn't say good
« Reply #13 on: Jul 28th, 2006, 11:33pm » |
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Well, things are changing. This morning my wife witnessed her first 10. Even I had forgotten. The Dihydroergotamin nasal spray my Dr prescribed seemed to give only a little temporary help. I did 2 vials, Almost $100.00 worth. After 2 hours of watching me go mad she said come on we are going to the hospital. The intern (at my request) put me on oxygen but I think things had been going on too long to get relief. She then gave me a shot of Dilaudid, which I didn't really want but by this time I would have taken battery acid if someone said it would help. When she returned to find me still in pain she sent the Attending in to see me. He seemed really knowledgeable about clusters. said my dose of 40 mg of prednisone was to small, so he gave me a shot of prednisone, a shot of something for the nausea I got from the car ride, a shot of something else that I swear I can't remember the name of. Relief came quickly. He sent me home with prescriptions for 80mg a day prednison, Reglan if the nausea returns, and Axert (almotriptan). I am also on 180 mg verapamil which he thought I should double. He also wrote me oxycodon if I need it for that lingering after pain. Sorry to be so long winded but in the almost 40 years I have known this Devil I have never been able to talk to anyone that could truly understand, although my wife is really trying. Thank you so very much for listening. May God bless you all and give you many pain free nights.
Big Guy
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| « Last Edit: Jul 28th, 2006, 11:36pm by big guy » |
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Jonny
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Re: morning..notice I didn't say good
« Reply #14 on: Jul 28th, 2006, 11:43pm » |
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You be as long winded as you want, Big Dude...thats why we are here!
Your home now!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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chewy
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Re: morning..notice I didn't say good
« Reply #15 on: Jul 29th, 2006, 7:52am » |
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Quote:| I am also on 180 mg verapamil which he thought I should double |
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Maybe 3 x 180.
Is that 80 MG of pred a day a taper?
Sounds like a fairly knowledgable Doc. we are getting there!
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E-Double
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Re: morning..notice I didn't say good
« Reply #16 on: Jul 29th, 2006, 9:25am » |
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 get relief!
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I can't believe that I have to bang my
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But the blows they have just a little more
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kcopelin
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Re: morning..notice I didn't say good
« Reply #17 on: Jul 29th, 2006, 11:24am » |
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Right on...sounds like you're on the right track...now about oxygen? and melatonin (maybe with benadryl) for those night time hits? what an incredible break-19 years! Man, it sucks that they came back but you have found a place where people definitely understand what you are going through, so welcome home.
PFDAN y'all,
kathy
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big guy
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Re: morning..notice I didn't say good
« Reply #18 on: Jul 30th, 2006, 9:56pm » |
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Hi,
Just a quick update. Meds seem to be taking hold. Yesterdays attacks were very mild. Today only that dull ache and sore skin around my temple. Actually was able to get some work done The 80 mg or prednisone has me pretty wired. Yes chewy that is a taper. Now take 360 verapamil. The doc that wrote for 180 is out of town for a week. I will work that out with him when he returns. Also will try to get 02. I feel comfortable here now so I think I will branch out to the rest of the board
Good night
Big Guy
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| « Last Edit: Jul 30th, 2006, 9:56pm by big guy » |
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TxBasslady
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Re: morning..notice I didn't say good
« Reply #19 on: Jul 30th, 2006, 10:06pm » |
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Thanks for the update.
Good to hear that things are better.
Stay in touch....let us know what the doc says.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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skorpio1104
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Re: morning..notice I didn't say good
« Reply #20 on: Aug 11th, 2006, 7:37am » |
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Hi Big Guy,
Is 19 a magic number? Mine returned after exactly 19 years too. More vicious than ever. I thought then, that was bad. I couldn't be more wrong; those were only up to 7or 8. This time I had at least 4 on level 10, and ended up in the ER too. You were lucky for getting someone who understands CH...I wasn't...anyway, I am now in remission after about 7-8 weeks; slowly, but seems surely.
So don't be hopeless...seems we are some of the lucky ones for being able to be "safe" for so many years.
Good luck!
Skorp
My best friends are coffee and magnesiums...
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big guy
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Re: morning..notice I didn't say good
« Reply #21 on: Aug 11th, 2006, 11:06pm » |
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Hi Skorp,
I saw somewhere else on this board that you were also coming off a 19 year remission. Strange. My cycle this time is not as bad as some I had in the past, but it's not over yet. Sorry to hear you are having such a rough time. Did you find that as soon as the pain started it was as if it had never left?
Wishing you PF days and nights
Big Guy
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skorpio1104
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Re: morning..notice I didn't say good
« Reply #22 on: Aug 12th, 2006, 5:57am » |
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[quote author=big_guy link=board=knowya;num=1153993727;start=0#21 date=08/11/06 at 23:06:54]Hi Skorp,
Sorry to hear you are having such a rough time. Did you find that as soon as the pain started it was as if it had never left?
Wishing you PF days and nights
Thanks Big Guy, I wish you the same!! I'm not sure I was feeling as if the pain had never left, actualy I was surprised rather.  I didn't know what I had 19 years ago, no one told me, and thought it was gone forever. Now I know a lot more, thanks to this site and the internet. Of course now I won't be surprised about another onset, knowing it could come at anytime doesn't make me a happy camper...but at least I will be able to deal with it better.
Again, all the best!
Skorp
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skorpio1104
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Re: morning..notice I didn't say good
« Reply #23 on: Aug 12th, 2006, 6:00am » |
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 Darn, my quote isn't as it should be...quess it's another thing to learn!!
By the way, I had a few shadowy episodes 7 years ago, but was short and not too bad.
Skorp
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big guy
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Re: morning..notice I didn't say good
« Reply #24 on: Aug 12th, 2006, 6:37am » |
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Looking back I may have had a few shadows in those 19 years Too and just written them off to hangovers or after effects of something I had injested. But when the real thing hit a few weeks ago it was as if they had never left.
PF Days and nights
Big Guy
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