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Topic: ? re verapamil & prednisone (Read 504 times) |
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emilysmommy
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? re verapamil & prednisone
« on: Oct 21st, 2002, 11:04am » |
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Had my neuro appt. this morning & left there feeling very frustrated & angry. I'm usually pretty agressive and push for answers, but I just didn't have it in me this morning. The neuro spent a WHOLE 10 minutes with me! I had a list of things I wanted to go over with him, but he was in a big hurry and obviously didn't care to listen. Anyways, he gave me a script for prednisone (12 day course) & verapamil 180mg once a day. First of all, I'm thinking that my cycle may be near an end because I have only had 2 ch's in the last 3 days & they've been about kip 5. I had been having kip 10 for 6 weeks. This is my 1st bout with ch's so I've got no clue how long this will last. Basically, my question is this: do you normally take the verapamil & prednisone when you are at the beginning of a cycle? Do you take it t/o the entire cycle & then continue on the verapamil even after the ha's are gone? I don't want to medicate myself if unnecessary. I'm just wondering if I should take the verapamil as preventative even if the ch's are gone for now?? I'm just confused. The neuro gave me no information. Everyone here has been so helpful. Thanks.
Michelle
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SteveY
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Re: ? re verapamil & prednisone
« Reply #1 on: Oct 21st, 2002, 12:09pm » |
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I am not an eposodic, but you are usually given steroids to switch off the CH initially while the verapamil kicks in.
If you're coming to the end of a cycle, I can't see the point in taking them.
I'd give it a week or so without anything, just take your abortives if you need them.
At least you'll have the prednisone ready for your next bout, whenever that may be.
Steve
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sueellen83
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Re: ? re verapamil & prednisone
« Reply #2 on: Oct 21st, 2002, 2:06pm » |
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I usually don't have to take anything when I'm not in cycle. My neuro. started me on Verapamil for the 1st time this cycle and it has helped keep the beast at bay.
Dr. told me to continue taking the Verapamil for 2 months after the last signs of CH (shodows, break through pain) were gone.
Hope this helps a little.
Good luck,
Sue Ellen
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fordf150
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Re: ? re verapamil & prednisone
« Reply #3 on: Oct 21st, 2002, 6:09pm » |
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Emilysmommy: In answer to an earlier post I am getting
good results from the Neurontin. It has a high safety profile and a wide range of dosing. Of course it is difficult
to tell sometimes what is working...my CH seem to roam around at their own will. I would definitely get a stash of
prednisone or medrol together(4mg medrol=5mg pred).
Steroids have a proven track record in this disease. Try just taking 5-10 mg. and see how it works. I have found that for myself high dose pulsing is not necessary and sometimes a few days of low dosing will turn the tide.
This disease will force you to develope a treatment program for yourself. I am lucky in that I have been going to "Headache Care Center" here in my home town. I have a neuro that only treats HA and I see her periodically even when I am symptom free. I think these centers have a website. Don't expect too much from your physician, as someone who has been in healthcare for 26 yrs. I can tell you that spending time with patients was the first thing thrown out the window with managed care. Don't get discouraged these things will pass, I wish I had this site 3 1/2 yrs ago.
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emilysmommy
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Re: ? re verapamil & prednisone
« Reply #4 on: Oct 21st, 2002, 6:56pm » |
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Thanks for all the replies.
I've decided that I'll go ahead & get the scripts filled & wait it out for a few days. Hopefully I'm near the end of a cycle & I can stock up & be better armed next time around! As I said, I'm very new to all of this. I'm 24 & this is really the 1st time I've had a cycle of cluster headaches. I appreciate all the support & information I've been given from the people on this board! Thanks  .
Michelle
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tomshead
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Re: ? re verapamil & prednisone
« Reply #5 on: Oct 22nd, 2002, 1:52am » |
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I found a HA clinic at the end of a cycle last summer and they gave me a ten day prednisone burst. I was miserable from the side effects and frustrated by the Idea that they were making things worse.
Beware, this may happen to you too.
There will probably be two sets of side effects to the pred.-- those from taking it and those from coming off it. Its my understanding that the Pred. is an anti-inflammitory agent (opps, see- I cant tell you exactly what it does, therefore I haven't done the research I should have done) The pred at the end of last summer's cycle seemed to make the HA spread out down my neck and through the shoulders, all my body was cramping, and hot flashes galore. Then coming off it came with acne on my shoulders, back, chest. Surely these people didn't know WTF they were doing.
and then came this year's cycle...
while making the first appointment I asked for a different doctor and damn if he didn't put me on the pred again and added this verapamil (4 x 2 at 80mg) and some depakote... whatever... I was so ...depressed...no angry...F'in high horse clinic, dont know what causes this and takes some attitude about handing out this guinea pig bull.....But it worked... The second day on the pred--no HA., and this time no cramps, instead there was a whole lota shakin goin on and other weirdness(your symptoms definitely will vary), but this was better than the pain. Maybe the cramping and spread out HA's last summer were from taking it at the end of the cycle instead of the beginning, I wouldn't know. comming off the pred there was the same skin thing, and some minor shadows for about a week and ... look-it ! all gone...or so it seemed. Having at first dismissed the prescriptions I really hadn't kept up on taking the verapamil and the depakote, and I blamed them for alot of the weirdness while taking the pred. So I just stopped taking them and ya know what, the day before my return visit to the Dr. (time elapse was 4 weeks) I woke up in the morning with this little HA...naw couldn't be...must have slept wrong, catching a cold, blah blah, blah..."All gone you think?" asks the Dr. "Yup" I say and they give me a schedule for weaning off the verap and depakote and away I go a-whistlin' a happy tune, not even tellin them I'd already done with those useless things...and within two weeks I'm back at death's door, counting out those precious little white prednisone pills with none of the abortives working at all, they never did, and I've taken them all, up the ladder to morphine--20mg up the butt left me wide awake and wondrin WTF, I was at least lookin' forward to the buzz.
"the problem you see," says the Doc to me "Is that we cut back too soon, before your system was saturated enough to keep the headaches managable except for the ocasional breakthrough headache. The Prednisone is only a temporary fix to allow time for the verapamil and depakote to build up, and we cant keep giving you the prednisone because of the long term side effects, and the abortives aren't going to work until the severity of the headaches are moderated by the preventatives"
Now...everybody's case is different; these drugs are of no help at all to some. And this cycle is the longest I've ever had-- goin on week 16 vs. the usual 6 to 8. I could have made it last this long by f'n around with the meds, but its more likely the return was just the pred draining out of my body. And then again I've read other peoples complaint that meds seem to keep the cycle running longer--this I tend to believe, but (and finally I come to a conclusion) the pain level is less severe. Looking back to last summer, I would have to say that though there were other discomforts, the cycle did end with the pred., and that it may have continued if I hadn't taken it. I'll never know but If I had to do it again I would take it, and they probably didn't prescribe verap because I said I was at the end of the cycle, but I wish they had. Two months ago I was winning about taking meds, now I'll do what I'm told, for as long as I'm told to do it.
go to a headache specialist
follow their prescriptions and never mind that they don't explain-- its not their job to evaluate your IQ, and it is likely that your questions are impertinent to a qualified neuro, especially in this field--do your own research--this site is the gateway, the entire web is at your disposal.
if at first they don't succeed, tell them and try again. your only alternative is dispair. Lord willin', you'll find a way to live with this and a medication regime that will work for you.
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| « Last Edit: Oct 22nd, 2002, 3:28am by tomshead » |
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emilysmommy
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Re: ? re verapamil & prednisone
« Reply #6 on: Oct 22nd, 2002, 2:10pm » |
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Tomshead,
Thanks for the response. I have to say I disagree with you on at least one thing. Don't see where my IQ fits in here anywhere, but I do believe it is the neurologists responsibility to explain to you how long to take the medications he/she prescribed & so on. Do you think we pay doctors to just give a diagnosis & prescribe a medication? That's not what I pay my doctor to do. I do my own research, but believe a qualified neuro is essential. I don't expect a diagnosis from the internet. I like to get some information from a live, breathing person, face to face. This website is wonderful, but there is a lot of information. Some factual & some not.
Thank God, I do believe this cycle is over. If it is, I have no intention of taking the meds he prescribed until my next bout.
Michelle
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NotH20
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Re: ? re verapamil & prednisone
« Reply #7 on: Oct 23rd, 2002, 3:31pm » |
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Michelle,
I've been away from this MB for a while so I'm not sure if you are any abortives or not. If you are - a word of advice - REFILL YOUR ABORTIVES EVEN IF YOU ARE OUT OF CYCLE!!!! I've learned over the last 22 years that not having abortives during a cycle due to insurance limitations is more stressful than the CH's.
I agree with Steve, it usually takes a little bit of time for the Verap to get into your system and that's probably why they gave you an Rx for the Prednisone. The dosage that they gave you is low for CH's so in the event you need that medicine, you will probably have to have that dosage increased.
Hope this info helps you,
NotH20
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emilysmommy
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Re: ? re verapamil & prednisone
« Reply #8 on: Oct 23rd, 2002, 5:24pm » |
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Hi NotH20.
Thanks for writing. My insurance has only agreed to cover 6 boxes a month for a year & I am definitely going to get them filled each month regardless! I have no idea how this horrid beast is going to behave. This is my first every bout so I will just await the dreaded day when it returns.
Michelle
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NotH20
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Re: ? re verapamil & prednisone
« Reply #9 on: Oct 24th, 2002, 8:02am » |
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Michelle - six boxes a month doesn't sound all that bad - I can only get three boxes every 28 days! 
You need to have your doc's office deal with your insurance company. There are times when you can have some rules bent in order to get some meds. Now I'm not saying that you can have free access to as many injections as you need (which would be wonderful), but there are ways around some of their rules.
Check with your insurance company again regarding refills. In my instance, if my doc writes the Rx for THREE I get 6 injections for my copay.....if he writes the Rx for ONE I get only 2 injections for the same copay. Just something else to ponder in this massive web!!!!
Keep the faith - hopefully your at your end and you can stock pile as many as needed for the next round.
Mia
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Mark C
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Onward through the fog.
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Re: ? re verapamil & prednisone
« Reply #10 on: Oct 27th, 2002, 8:37pm » |
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You go Michelle,
I am a firm believer in a well stocked medicine chest ;D
Write your concerns about your office visit in a nice, but firm and clear letter. Express what you did here, better instructions, etc. There is something about the written word on a page that seems to get white collar folks attention.
Then send it to him. Take a copy of it on your next visit after prepping the nurse to make sure he has read your letter before your OV time. Try it.
You go girl!
Mark
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