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Topic: Prednisone..feel grt now wht happns aftr lst pill? (Read 914 times) |
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annar
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Prednisone..feel grt now wht happns aftr lst pill?
« on: Oct 30th, 2007, 7:19pm » |
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My doctor finally put me on a pednisone taper of 60 mg two days, 50 mg two day 40 mg and so on down to 10 mg one day. Im on the third day and feel great. I only have one night hit and small shadows during the day after having five hits a night for over two weeks. The only thing that would calm them down was the imitrix. NOw O2 works fine on the night hits. I've also started taking 9mg of melatonin. So, Im not sure whats actually working but something is.
My question. Does the prednisone put the cycle into remission? Calm the nerve for the rest of the cycle? Make the cycle more manageable?
Basically, I would just like to know what the outlook is like after the last pill is gone. I would hate for the hits to come back after the prednisone is gone.
Thanks again to everyone at this site. Best wishes
RRR reg 
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ski2k
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #1 on: Oct 30th, 2007, 8:39pm » |
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Well...
Hate to be the one who breaks it to ya, but... Prednisone usually won't put a ccle into remission. All it does (for most) is cause a small break in the cycle. It's usually used in conjunction with another med. which is a preventative. So when the pred wears off, the prevent will be in your system enough to help reduce the number of hits you take.
Maybe get ahold of your doc right away, and start a preventative?
Best of luck!
Adam
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annar
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #2 on: Oct 30th, 2007, 9:13pm » |
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ok. Im calling my doc first thing in the morning. Why the hell doesn't he tell me this stuff. I guess I should have asked him but in my state I just wanted anything.
The Topomax is my preventative. Looks like that could be another upcoming question (thread) of mine. How long until the Topomax starts to work and at what mg's. Im at 100mg's now.
Thanks for the info Adam
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ski2k
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #3 on: Oct 30th, 2007, 10:19pm » |
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You're welcome!
Topomax didn't work for me, but my doc wanted to get me up to 300mg/day and "see where we could go from there". It works for some, but not others. Hope it does for you!
As far as him not telling you..... He might not have known. I saw a neuro (once) that told me pred was the ONLY thing that could break a cycle. Stopped seeing him after that!
Might not be a bad idea to print off some of the medications used for treating CH, and bring them to your doc. OUCH (link in yellow at the left of this board) has some really good info, that you can discuss with him, and find something that works (If the Topomax fails).
Hope this helps too!!
Adam
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Guiseppi
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #4 on: Oct 30th, 2007, 11:32pm » |
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Afraid I'm with Adam, for me, when I go off the prednisone, if I have nothing else in my system, I get creamed worse then before. Have your oxygen ready to go, and certainly talk to your doc about ramping up a prevent. You'll hear it a number of times on the board but you will have to become your own advocate on treatment. Educate yourself and get ready to handle your treatment plan, prevents and aborts. We'll help you with info every step of the way.
Guiseppi
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annar
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #5 on: Oct 31st, 2007, 1:26am » |
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I have my list of questions and demands in hand for the doc tomorrow. If it wasnt for this site I would be in the dark.
Your right, I need to be my own advocate on my treatment because I don't think my doc has the experience with clusters. Im picking up my new O2 regulator tomorrow. He gave me a prescription for 10 lpm, finally. The reg goes up to 15 lpm  .
Thanks
RRR reg
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Bob_Johnson
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #6 on: Oct 31st, 2007, 7:44am » |
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Print a copies for your doc and one for yourself. Sounds like the doc is too rushed or unskilled to be your guide.
As a preventive I'd prefer Verapamil vs. Top. because the side effect profile is better. Too many of our folks have complained about the mental fog fromTop.
In any case, using this document should elicit your doc's attention given the author and source.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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billyjoe
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #7 on: Oct 31st, 2007, 8:12am » |
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When I was first was diagnosed with CH, the Prednisone did put my CH into remission. Haven't had that kind of luck since, but it can happen. Probably best to start the preventative. You can always get off it if you don't need it.
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echo
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #8 on: Oct 31st, 2007, 11:00am » |
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Prednisone worked when the dose was higher and the taper longer. Verap was the preventative of choice back in the day it actually worked for me.
The one thing I remember about Prednisone was that it made me puff up like a blow fish.
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CostaRicaKris
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #9 on: Nov 3rd, 2007, 6:07pm » |
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Pred worked for me too, but I did a longer taper as well (two and a half weeks) while I built up on Topamax. I can't take Verapamil because my blood pressure meds already make my pulse too low. The Prednisone worked for me, but when they tried to take me off too fast and I didn't have the Topamax built up in my system, I got slammed with a hit.
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ski2k
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #10 on: Nov 3rd, 2007, 7:01pm » |
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Hey Annar....
How'd the doctors appointment go? Did you get the O2 regulator you were gonna? Topomax helping? How many mg you taking now? What's the news?
Update us when you can, please....
Thanx,
Adam
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annar
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #11 on: Nov 8th, 2007, 7:02pm » |
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The doctors appointment went as expected. He put me on 125 mg of topomax, up from 100 mg. I have a 15 lpm regulator now but have only used it up to 10 lpm. Doc prescription is only to 10 but haven't had the need so far.He was going to look into low dos verapamil/topomax mix in case the topomax doesnt work by itself.
My last prednisone pill is tomorrow. Friday 10 mg. So i guess the real update will be this weekend.
I've been doing ok since then . Only had to use imitrex occasionally...maybe 3 times since being on pred.
last night i got hit 4 times, 02 knocked them all out but i got no sleep  . All my hits come at night.
I'll fill in the rest this weekend
rrr
Im still taking the 9mg melatonin.
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #13 on: Nov 12th, 2007, 11:14am » |
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a little update
I made it through the weekend pretty good. I had one hit a night. Probably kip 5-7 that O2 put away rather easily. Red bulls during the days kept the shadows (and dull aching) at bay.
One thing that has changed. I did get a minor hit in the evening on Saturday and Sunday which is unusual. I haven't had day hits since the very beginning of my cycle. Maybe this means my cycle is ramping down? I haven't taking prednisone since friday. Im still on 125 topomax. It seems to be working. .
wishing everyone pf days
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puppylove41
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #14 on: Nov 12th, 2007, 6:02pm » |
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My husband did Prednisone for 21 days 12 for 3 days 10 for 3 days 8 got 3 days and so on this was to let the calin start to work (if I spelled that right) but calin was 120mg when he was going down on Prednisone the Dr. put it back up a few more days and up the calin to 240mg and said maybe going to 360. It is not helping him. He said calin was used before Topomax which we tried. But because of BP trouble they use Top. now. He is a Headache specialist in PA. Don't know what we will do now, guess wait and see.
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annar
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #15 on: Nov 12th, 2007, 6:43pm » |
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How many mg's of prednisone was your husband on? How any mg's of topomax did your husband take? The topomax leaves me feeling real cloudy during the day but its better than having all the hits at night which would make me a walking zombie from lack of sleep.
I hope your husband finds the right mix.
reg
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #16 on: Nov 15th, 2007, 10:18pm » |
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another update.
well the prednisone wore off and the hits have not come back like before. I still get the nightly hit which the O2 takes out.
Im still on the 9mg melatonin and the 125 topomax. Im not sure which one is doing the trick but one of them is keeping the big hits at bay (knock on wood).
New...I have been getting more shadows during the day and my neck is KILLING me, on my left side.
I wake up about five times during the night to go to the bathroom and deal with my hit (i drink a lot of water). I work a full time job during the day and am probably only getting 6-7 hours sleep a night (sometimes less) because of ch. So I think the neck pain is from lack of sleep but it's just recently been a problem. Maybe its a cumulative effect. All these nightly hits are catching up to me.
 So tomorrow Im calling in sick and sleeping in. Im going to try and get as much rest as I can this weekend.
BTW...Prednisone side effects...adult acne...sucks!!!
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cart7
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #17 on: Nov 16th, 2007, 3:01am » |
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Pred worked for me for the first week. Then the 2nd week weening process and .... uh oh.
Dr. put me back on the 60mg. worked a couple nights. Not so good now.
I'm still waiting for my Dec. 5th neurologist appt. 
I've decided to try Melatonin. Reading on it it can be effective for episodic sufferers who have primarily night hits. That's basically me. I've also had issues with SDI over the years at this time of year. I'm starting to wonder if there's a connection there. At only $5 a bottle, what the heck.
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Patrick_A
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #18 on: Nov 16th, 2007, 7:41pm » |
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My last cycle was immediately halted by a 60mg Prednisone Taper along side of 960mgs of Verapamil.
I hated the side-effects of the prednisone though. Because I am episodic and have a tendency to get hit right about the time I get to sleep, I am going to ask to try the melatonin. If that dont work, then I guess I'll have to go back to the Pred/Verapamil taper.
Pat
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paulyboy
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #19 on: Nov 16th, 2007, 11:19pm » |
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Yeah, Im loading up on the verapamil, and both neuros have warned me over doses past 320... New studies are finding heart problems over that. But I know a lot of other info pushes those doses until it works, even up to a grm.
I am trying a antidepressant before I go to sleep, as its a common migraine helper. There is not much info on this site about it, and you use it in such low doses so the anti depressant characteristic isnt really present. Its called imipramine. old drug and cheap. I dont have a lot of night hits, but Ill let you know the effects as I load in the dose. Sure makes me sleep hard and nice... but still wake up with shadows.
Good luck.
oh yeah, adult acne and blowing up like a blowfish... love the roids.
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stgeorge1
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #20 on: Nov 21st, 2007, 2:55am » |
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Had'nt heard of prednizone for CH but I use it for my ITP in varying doses. I have been using propanalol for the past few years and it seemed to have put my CH into remission. Every once and a while I'd run out for a few days and then first migranes and then mild (kip 05-06) CH's until I got more. However, about two weeks ago I ran out for 4 days and the 3rd day I was hit with the worst CH ever (kip 12+) which totally took me by surprize. I was too wacked out to even take my imitrex so my wife, who'd never even seen the injector before figured out how to load and within 10 min. of the injection it was all gone. Totally blown away. However, they came back in full force. I tanked up on imitrex but can't take it each time so I play chicken with the CH's and hold off on the injections for the worst ones but still I'm now at my limit of 2 per day. I'm going to try the " imitrex tip" of splitting up the doses but I have to do it before things get too bad or I won't be able to even see to try and split out the doses. Any other meds, ideas, etc.??
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annar
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Re: Prednisone..feel grt now wht happns aftr lst p
« Reply #21 on: Nov 21st, 2007, 3:54pm » |
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Oxygen first. It's been working for me. Im also on the topamax and at night i've ben taking 9mg og melatonin. Im doing good so far. Havent had a hit above a kip 7 for some time. the O2 knocks them out before they get there. I hope it stays that way. I have been getting more daytime hits though which worries me.
The energy drinks are doing a good job for the day hits along with the O2.
Yous ahopuls really see your doc. I would ask about topamax or verapamil and definitely O2!
reg
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