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Title: depakote update Post by justin on Jun 3rd, 2002, 11:53am hey all, just wanted to update you all on my depakote treatment. currently on 1000mg depakote, 480mg diltriate? (not sure of spelling cause i just started it, but it's the same thing as verapamil suppossedly) so two weeks ago i raised my depakote from 500 to 750mg. i had a few days of anxiety attacks and subsequent depression, confusion, and mentally slower, moody, and detached from people during conversation. about 5 days later felt better and normal. but the ch's came back another day or so later. it felt as if my body was just getting used to the level of meds and then when it did the ch's returned last friday, raised from 750 to 1000mg depakote and same symptoms are back but with out full blown anxiety attacks . i think this is just because i understand what's going on with my body. no ch yesterday but a weak one today so it hasn't kicked in yet. we'll see... right now the plan is to ween off the blood pressure stuff and then off the depakote in july. august has always been a pain free month for me and i've been medicated straight for two years. need a break. so hopefully they will go away and when and if they come back in september i will just bring back the depakote and see if that does anything. interesting side note. when i suggested neurontin to my neuro he flat out dismissed it and said it didn't work for clusters. oh well. i've seen so much positive responses on this site to it and it seems to have fewer side effects. and finally pfizer has a new migrain medecine coming out. some rumors have said it could work for clusters but it hasn't been tested. don't know much, but i know someone at pfizer so i am going to ask them about it next weekend. lata jd |
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Title: Re: depakote update Post by kristi on Jun 3rd, 2002, 6:41pm Hi Justin! Sorry you are having a hard time of it. The nuerontin has helped my husband. If you are interested, I would go to the archives and print out everything you can to take to your nuero - you can show him that it has been prescribed for CH by other nueros and that it has worked for some. Good luck and PFDAN! Kristi |
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Title: Re: depakote update Post by kim on Jun 4th, 2002, 5:09pm Hey Justin, Keep plugging away. I'm glad that you are not as worried about the anxiety and other stuff as you were a couple weeks back. Justin, about 4 years ago during a cycle my neuro put me on depakote, midrin and imitrex nasal spray. The cycle wound on as usual with no positive results. This past cycle that same neuro put me on the neurontin and the maxalt mlt. This cycle was shorter... Justin, my neuro is also in Manhattan. Just out of curiosity, has your neuro ever treated other cluster sufferers? When I try and talk to my neuro about it he really doesn't encourage conversation about the subject....for all I know I could be the only one he has ever treated. The point i'm trying to make is: This neuro (supposedly familiar with clusters) says "black", while "that" neuro says "blue". We are all still just bouncing around like ping pong balls in a sound proof room....................... |
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Title: Re: depakote update Post by justin on Jun 6th, 2002, 1:10pm depakote not working . miserable. hit four times last 24 hours. hole time schedule of hits is off. no sleep. called doc. nothing left to do right away so i'm back on prednisone, 40-30-20-10. ugh..hate it so much. everytime i do it i think, oh it won't be that bad, and it is. he mentioned the DHE ergotomine drip. wants me in the hospital for 2-3 days. montifiore in the bronx. jd |
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Title: Re: depakote update Post by kim on Jun 6th, 2002, 1:37pm sorry meds not working.............. never tried the dhe drip but have read posts here about folks who have. i've read that it has stopped the ch dead in tracks and the only side effect i remember reading was groggy for couple days. i hope someone posts to this for you. good luck jd. hang in. |
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Title: Re: depakote update Post by rick on Jun 6th, 2002, 7:02pm Justin, Get a doctor who will give you what you need. It's your body and your life and you are the one who is suffering. Good luck, kid. -Rick |
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Title: Re: depakote update Post by Linda T on Jun 7th, 2002, 6:51pm Dear Justin: I too was on 1000mg depakote. Only for about 2 weeks. I was on 500mg daily for 5 weeks previous to that. I had absolutely no luck with it. In fact my CH got worse. Maybe it would have without the depakote. No way to tell. But it definately did not work. My doc was so insistant that depakote would work he wanted to keep raising the dosage. I finally had to tell him I wasn't going to go thru this anymore and if he didn't taper me I would do it myself. He then prescribed Inderal LA. I started at 60mg daily and am now to 120mg daily. After a few weeks, the ch starts to breakthough, as you say, I think when your body starts to adjust to the med. So far at 120 I'm feeling good. Not too many people have had luck with Inderal so maybe I'm just lucky. I think if you've been on depakote for several weeks and you still don't feel good it might be time to move on. Good luck. Linda T |
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Title: Re: depakote update Post by simpson1974 on Jun 7th, 2002, 7:15pm Has anyone here had good luck with depakote? I was recently put on it. I'm on prednisone, too, and getting ready to go off of it. I'm kind of concerned the headaches are going to get worse. The depakote/prednisone hasn't gotten rid of them completely, but it has softened their effect and cut down the number of h/a per day. I'm afraid it may just be the prednisone, though. |
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Title: Re: depakote update Post by nancyc on Jun 7th, 2002, 7:44pm I responded pretty good to a low dose of depakote along with verap 480mg...but i got a rash and started swelling really bad...had a toxic reaction...my body loves to fight these ch drugs it seems...Good luck...and remember what does not work for one clusterhead, may work for another....dont give up. |
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