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Topic: so much for the prednisone... (Read 228 times) |
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Lizzie2
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so much for the prednisone...
« on: Apr 19th, 2004, 10:05pm » |
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Well I finish my 2 week pred taper in 3 days. I did 80mg for a week, and then every day after that I have gone down by 10mg. For the first few days, I just had some shadows, and of course the ever present NDPH that won't leave no matter what I feed it. But then once I started to taper down, the clusters have come back full blast. Not having as many as I was, but still at least a couple a day.  This is discouraging... 
Sorry...just needed to vent.
Lizzie
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Opus
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Re: so much for the prednisone...
« Reply #1 on: Apr 19th, 2004, 10:58pm » |
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that happens to most, it seems, I don't know why they don't keep CH'ers on the full dose longer, they do for asthma, but that was a few years ago.
Opus/Paul
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Kevin_M
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Re: so much for the prednisone...
« Reply #2 on: Apr 19th, 2004, 11:08pm » |
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Lizzie dear,
I'm sending vibes that you will still continue to fight. You need a prevent to depend on now with this taper ending. Aborts will be important it seems.
This is one of a couple attempts with prednisone you've depended upon. I wish the clusters will have some mercy on you, but that is a tall wish. There is a solution out there, a doctor who can help.
I know you are a trooper but you must troop on.
Thinking of you and here for these times.
Kevin M
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Lizzie2
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Re: so much for the prednisone...
« Reply #3 on: Apr 19th, 2004, 11:20pm » |
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Thanks Paul and Kevin,
I had tried a short term (6 day) pred taper back in November with no luck there either. I'm on 480mg of verapamil a day, but it doesn't seem to be doing the trick. I'm thinking about checking into the verap/lithium combo to see if that would work for me. Last night I went through amerge (takes too long to abort a CH), oxygen, and ice with nothing stopping the bastard...
My only other prevent is a tricyclic antidepressant called Norpramin, but it makes me too tired so I can't even get to a helpful dose.
I'm going back to Jefferson headache center on May 10, despite the problems I had before! I just feel they have the resources that I need there. I have a page long list of things to discuss with my neuro there to hopefully prevent the problems I had before from happening again!
Not gonna give up hope yet...just get discouraged sometimes....
Piano recital is this Saturday, though. 
Lizzie
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Kevin_M
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Re: so much for the prednisone...
« Reply #4 on: Apr 19th, 2004, 11:33pm » |
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That's my girl Lizzie. Inquire and find the answers. There are more combinations. The verap/lith hopefully can be of help. Ask questions and get and answers and then get some results!!! You game plan is and motivation is exemplary.
Focus on them ivories too. Do the job with them you know how to do. This accomplishment despite what you are going through is truly an inspiring feat. Stay in tune girl!!! These cluster sour notes need to be worked out and I know you know what it will take. Desire.
Pulling with you. 
Kevin M
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UN_SOLVED
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Re: so much for the prednisone...
« Reply #5 on: Apr 20th, 2004, 12:04am » |
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Lizzie
Sorry it didn't work to break your cycle. It never works for me either. It's just a short break from the beast. You can't stay on that for long anyways ... it will kill you. At least you got a little break, right ?
Unsolved
PS...Did you ever try DHE IV to break your cycle ?
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Lizzie2
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Re: so much for the prednisone...
« Reply #6 on: Apr 20th, 2004, 2:24am » |
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It's true unsolved....every now and then I do seem to get a few days reprieve. I guess I should be thankful enough for that! Although the NDPH never leaves...grr.. I have been hospitalized for DHE and other things 7 times, but only once since developing clusters. I did get a shot of DHE and phenergan at the ER a couple weeks ago, and I was cluster free for 3 days after that.
No time for hospitalizations, now, though! I graduate very soon and then start right into a very intense 12 month nursing program. I'll fight this thing some way or another...
Take care,
Lizzie
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pubgirl
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Re: so much for the prednisone...
« Reply #7 on: Apr 20th, 2004, 2:38am » |
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Lizzie
Sorry the Pred effects didn't last for longer. Has your neuro suggested upping your Verap dosage at all? You are still quite well below the so-called maximum dose, and some people do need to take quite a lot for it to work properly. If you have no heart or circulation isseus, you should be able to be prescribed more. I also know quite a few people who have been on quite high dosages for a long time with no ill effects (although a "holiday" from the Verap is recommended every few years or so)
There is always the Verap/Lithium combo mentioned as well, but I think most doctors here try increasing Verap alone before trying the combination.
I'm sure your neuro will have some ideas for you though
Fingers crossed for you
Wendy
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Lizzie2
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Re: so much for the prednisone...
« Reply #8 on: Apr 20th, 2004, 2:48am » |
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Hey Wendy,
When I first got diagnosed with CH, my neuro upped my verap to 720mg of the extended release. Then after a couple of weeks of still no relief, he upped it to 960mg. I wound up in the ER with extremely low blood pressure. Then I had another blood pressure attack with bradycardia and vomiting, so they lowered it to 720mg again...and after 2 weeks of that, I had another attack with BP 60/40 and heart rate in the 40s and nonstop vomiting. So, that's why I'm only on 480 now. And it's not the extended release anymore. Now I take 120mg 4 times a day. It's strange because before all this, my blood pressure was always very high since getting NDPH...many times 150/100. Right now it is running on the lower side, but not too low like before. So I definately need to play around with SOMETHING...although I don't think I want the effects of that high verap again! I had some scary experiences!
Take care,
Lizzie
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ShariRae
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Re: so much for the prednisone...
« Reply #9 on: Apr 20th, 2004, 10:07am » |
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I know you have tried many things Lizzie..just try & hang in there till you find something...you deserve a break
Huggs
Shari
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