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Topic: I need help and/or advice - please! (Read 466 times) |
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Linda T
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I need help and/or advice - please!
« on: Mar 28th, 2002, 2:07pm » |
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Need some help, here goes:
I've been in cycle since November. Went through pred and elavil - didn't work. Now I'm on 500mg depakote daily, together with 1000mg naproxen daily. I also take 50mg imitrex tab and 1mg amerge tab at bedtime to keep away the nitetime attacks.
Well, I've gotten sleep these past three nights (which is a good thing since I was going on major sleep deprevation). However, now my attacks are coming in the middle of the day (or morning). About 8-9 on the kip. I don't take the imitrex during the day because I want to save it for the nitetime because I need the sleep.
I've been on depakote for 1 month now and as far as I can tell it hasn't done anything. I have only been taking naproxin for about 5 days. I feel that my attacks are generally getting worse. I can't work, etc., etc., You all know the score.
My neuro doesn't want to give up on the depakote. I think I should. My questions is this: do I press the neuro into some other course of treatment or does any one out there think he's right and I should give it some more time?
I'm afraid that I have not been thinking too clearly lately between the ch's and the meds. I can hardly make a decision on my own any more and that's why I need your help.
Any one with any opinions? I'd like to hear!
PFDAN always, Linda T.
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MarkHW
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Re: I need help and/or advice - please!
« Reply #1 on: Mar 28th, 2002, 2:34pm » |
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I don't know about anyone elses experience with depakote, but it didn't work for me, in fact, I had an increase in headache.
Unless there is some clinical reason that depakote needs a long time to work, I would say have him switch you.... You need to feel like something is being done to help.
I'm not a dr. and he may have reasons, but I would ask again and tell him you just don't feel like it's helping.
Mark
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The clusterhead formerly known as williamsmh.
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chjohn
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Re: I need help and/or advice - please!
« Reply #2 on: Mar 28th, 2002, 8:24pm » |
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Check out the side bars, The medication survey has the results of what has worked for other C.H. sufferers. Imitrex injections, followed by Oxygen scored the highest for possitive results as an abortive, (stopping the pain).
John
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rick
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Re: I need help and/or advice - please!
« Reply #3 on: Mar 28th, 2002, 8:26pm » |
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Linda, I have to agree with William, Depakote only made my condition worse. My headaches were still there, full blown, and I found myself dealing with every side effect listed in the literature that came with it, with the exception of vomiting. I guess I had that to be thankful for. I stopped taking it last Friday, and I should note that I was also on Doxepin at the time, which I have also discontinued. My advice to you is this: it's your body, tell your neuro that it's time to move in a different direction.
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nancyc
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Re: I need help and/or advice - please!
« Reply #4 on: Mar 28th, 2002, 8:35pm » |
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LInda, i have to agree...after a month, maybe it is time to push him to move on...I am on depakote and will start the doxepin soon...everyone's body is different so I am not going to get alarmed that it does not work for everyone .I just started it yesterday....trying to keep the faith here and at this point, i will try anything...Sorry for your pain...
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| « Last Edit: Mar 28th, 2002, 8:36pm by nancyc » |
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Jamiegrrll
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Re: I need help and/or advice - please!
« Reply #5 on: Mar 31st, 2002, 1:55am » |
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Linda,
I completely agree with what everyone else has had to say. You've tried the medicine for a month and it's done nothing for you-you have every right to ask to be switched. I think sometimes its difficult because Doctors look at their patients and medicine from a research perspective as opposed to a more sympathetic/empathetic perspective. Although studies may have proven that with time it worked for others, you need to stop them NOW because you're obviously having a really hard time living a normal life. Good luck and don't forget that we all understand how much pain you're going through and hope you will get this under control ASAP.
Wishing you PFDAN!
Jamie
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jtp
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Re: I need help and/or advice - please!
« Reply #6 on: Mar 31st, 2002, 4:37am » |
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Linda:
Cant speak for the depakote, but I am very suspicious of the amerge. My experiance was similar to yours, in that after about 5 days of amerge at night (which really helped initially) I started to get very bad rebound ha next day about noon - which then required more amerge. Literature usage is confusing on Amerge - some referances imply its harmless/or at least has low potential for rebound. This wasn't the case for me. I solved problem by stopping amerge and switched to 1 mg wigraine at night. I found that I continued to have minor rebounds for about following 3 days, then was ok. Good luck. jtp
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pebbles
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Re: I need help and/or advice - please!
« Reply #7 on: Apr 3rd, 2002, 12:33pm » |
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[I also tried the depakote with devastating results. I have had every possible reaction to this medication. I was only on it for about 3 weeks. It also kept me fatigued. I had no problem with my neuro changing the medication.
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NotH20
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Re: I need help and/or advice - please!
« Reply #8 on: Apr 3rd, 2002, 12:43pm » |
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Linda - As with the others that have posted - Depakote was most definitely NOT the drug of choice for me. It helped for the first few days (I believe it was from all the prayers I said  ) but then it did nothing. I gained an extreme amount of weight too. You need to really push your doc - you know your body better than anyone else. Bring in as much literature as you can regarding that drug from this site.......
Good luck - we are all here for you....
NotH20
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Linda T
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Re: I need help and/or advice - please!
« Reply #9 on: Apr 3rd, 2002, 4:03pm » |
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Thanks for the input! On Monday my neuro increased my depakote to 1000mg daily. Quit the naproxen. Of course, didn't get to talk to the neuro directly only the secy/recep or who ever. Asked how long I should try the 1000mg daily. She says, ever so matter-of-factly, "give it 2 weeks". 2 weeks! Is she nuts!
Last night up for 4 hours with the beast. Started at 12:15a and kept going until around 4a. 2 weeks of this shit? On top of the 17 weeks I've just gone through. Holy hell!
My next course of action is to fax over some literature from this site (with the meds page, drug survey, etc.) to the neuro and tell him to move his butt. I've started holding off on the amerge and imitrex because they just delay my attacks to the daytime. Don't know which is worse - nite or day - they both suck.
Thanks again and wishing you all PFDAN Linda T.
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kim
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Re: I need help and/or advice - please!
« Reply #10 on: Apr 3rd, 2002, 5:15pm » |
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Hi Linda,
I'm sorry to read you are having such a long and painful cycle. I also have episodic cycles with ch. Two years ago i called a neurologist while in the throws of agonizing ch attack. he put me on depakote along with imitrex and midrin. I did not have any relief at all from any of the above medication. i believe that this is because I started the medication too late into the cycle. Hang in there! I am now in a cycle but I went to the neuro RIGHT AWAY and am taking neurontin (300mg/day) and maxalt. Neurontin is similar to depkote in that it is a seizure medication. Maxalt is similar to imitrex. It is a dissolving pill. Youput it on your tongue and let it dissolve and swallow it. It has helped stop an attack for me. Keep communicating with neuro and best wishes to you!
Smiles, Kim
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Mattso
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Re: I need help and/or advice - please!
« Reply #11 on: Apr 4th, 2002, 1:51am » |
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Linda,
Are you using Imitrex injections? If so, have you tried the Imitrex tip (in the side bar to the left?) I wonder if that would help you to have enough doses to combat the beast day and night? As far as I can tell, there's no guarantee that you won't get more rebounds when using the 1/2 doses, but maybe it's worth a shot.... Sorry, bad pun 
Personally , I've been known to go way into debt purchasing Imitrex, and have made sure to find mail order access to it without need for prescription. Money seems so irrevelant when faced with a kip 8-9.
That said, my Imitrex rebounds were getting way out of control lately, and Lithium, Naproxen, Prednisone weren't working, so I've been trying Neurontin 300mg 3x day instead for the past 2 days, and so far it's working. Now Imitrex is only needed at night, not every 4 hours(?) or so.
I REALLY hope and pray you get some relief.
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rodolfo
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Re: I need help and/or advice - please!
« Reply #12 on: Apr 4th, 2002, 8:02am » |
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If I were you I would try Aricept:I fully agree with Mattso on the injections of Imitrex.
I would like to add that Aricept seems to grant a shield to the rebound effects of triptans (such as sumatriptan/Imitrex)
For instructions and hints, please give a look at my latest post on Aricept.
A very strong hug
rodolfo
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Linda T
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Re: I need help and/or advice - please!
« Reply #13 on: Apr 4th, 2002, 4:42pm » |
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You guys are great. Thanks so much for the advice.
I'm saying this in a whisper because I am extremely supersticious (SP) and don't want to say this out loud:
I'm actually feeling alot better. I was pf 2 days. My daytime attacks have stopped. I get 1 attack at night. Kip 4-5. Lasts only 20 minutes. Get right back to sleep. Are meds working? Lower whisper: can this be the end?
Hope I'm not jinxed!
Rudolpho: I am going to talk to the neuro about aricept because I did read your post and researched aricpet when you first posted. Big hug right back at ya!
I'm not on im. injections yet, but I think that's the next step if necessary.
PFDAN always, Linda T.
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erik
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Re: I need help and/or advice - please!
« Reply #14 on: Apr 4th, 2002, 6:12pm » |
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linda sorry you are having such a hard time Depakote never did anything for me .but just like some of the others the imitrex injections seem to work the best.
I also take 25mg of amitriptyline 1 hr before bed that is if I dare to go to bed. print out the survey report and take it to your neuro it should give him a good idea of the drugs that have proven to work best for CH.
good luck and PF DAYS . ERIK.
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marcko00
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Re: I need help and/or advice - please!
« Reply #15 on: Apr 5th, 2002, 9:13am » |
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Hi Linda,
These headaches are new to me (about 4 weeks now)
But, I found Depakote to do absoloutely nothing.
The Dr. raised me from 250mg to 500, and thats when I started getting them about every 4 hrs for 1 1/2 days!!
Now he put me on Pred and V...
Plus... I got my oxygen bottle today!!
Can't wait to try it (yeah right)
Good Luck,
Mark
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