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madaline
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DepaKote
« on: Mar 7th, 2008, 8:15pm »
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Hi, I have been a chronic clusterhead for 10 years now, but have not logged in here for a few months. I just moved to Md. and have a new neuro. I have been on verapamil for 4 years now - they really helped my daytime attacks but did nothing for my night attacks. I've tried it all and nothing really works. (O2, Lithium at low doses, Indocine, and everything in between). I have used caffeine as an abortive for the last two years (it plays havoc with my heart and when the pain goes away I cannot go back to sleep anyway)  and Zomig when I get my week long attacks. I am now trying Depakote and my doctor wants me to up it to 750mg. tonight. I am always so tired and this does not help but....Has anyone had any experience with this? At what dosage? Please reply asap and tell me all the pros and cons.  Thanks loads. Madaline
« Last Edit: Mar 7th, 2008, 9:15pm by madaline » IP Logged
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Re: DepaKote and Verapamil
« Reply #1 on: Mar 7th, 2008, 9:02pm »
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I am currently taking 500 mg. depakote for the past 4 weeks along with 150 mgs topamax for the past 6 weeks.  The exhaustion and dizziness has not let up.  I am even  beginning to wonder if I am developing narcolepsy.  Everytime I think the ch are improving I get hit again.  But to be honest there has been an inprovement.  I am just looking for a miracle.  Good luck!
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Re: DepaKote
« Reply #2 on: Mar 7th, 2008, 10:27pm »
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no luck with it as a preventative.
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Re: DepaKote
« Reply #3 on: Mar 8th, 2008, 9:42pm »
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I've been on verapamil and depakote together for a few months now.  The depakote really helped with shadows and low level headaches.  I haven't been tired at all from it, but I'm also a bit ADHD.
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Re: DepaKote
« Reply #4 on: Mar 8th, 2008, 10:17pm »
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My daughter is 22 and has been put on depekote several times in the past 2 years. It does stop the CH but the side effects are hard on her. Weight gain, hair loss, and that narcoleptic feeling. She was falling asleep anywhere. It usually started as an iv dose when she was inpatient. Once discharged she was on as high as 2000mg a day and as low as 500. She could never tolerate it more than a month and got off it as soon as she could. It's going to be reserved for the absolutely worse times now and only short term!
 
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madaline
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Re: DepaKote
« Reply #5 on: Mar 8th, 2008, 10:33pm »
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Thank you for the responses. I am still deciding what to do. I have not slept one night for more than two hours at a time in years. I am exhausted and the 500mg. Depakote does not help with the tired feeling. I am supposed to try 750mg. tonight.  I'll keep you all posted; so far on the 500mg. I get about 4 hrs. uninterrupted sleep, but this is not consistent. I, too, am on Verapamil also.  Please keep the info. coming. Madaline
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Re: DepaKote
« Reply #6 on: Mar 9th, 2008, 4:26am »
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Well, here it is, 3;20AM, and even with 750mg. of Depakote, I awoke after about 2 1/2 hours sleep, with THE PAIN.  I think I am finished trying these heavy duty meds. The Verapamil, caffeine, and Zomig will be it and I will resign myself to no sleep forever!! I hope the neuro. agrees to just keep prescribing the Ver. for me.  Thanks for listening.  Madaline.
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Re: DepaKote
« Reply #7 on: Mar 9th, 2008, 9:54am »
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How much verapamil are you on? Lisa takes the bulk of her dose to help with night time. Also she does great with topomax although many have said that isn't too good for them. She uses 80mg verapamil in am and 240mg at bed; 100 mg topomax in am and bedtime. She has also added 1000mg of taurine at night. Many have suggested melatonin at night as well. Both taurine and melatonin can be purchased at health food stores or vitamin sections in the drug store.
 
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Re: DepaKote
« Reply #8 on: Mar 9th, 2008, 10:05am »
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on Mar 9th, 2008, 4:26am, madaline wrote:
Well, here it is, 3;20AM, and even with 750mg. of Depakote, I awoke after about 2 1/2 hours sleep, with THE PAIN.  I think I am finished trying these heavy duty meds. The Verapamil, caffeine, and Zomig will be it and I will resign myself to no sleep forever!! I hope the neuro. agrees to just keep prescribing the Ver. for me.  Thanks for listening.  Madaline.

You might want to talk to your neuro about combining the verapamil with lithium. Verapamil alone does little for me, but the combo is a beast killer.
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Re: DepaKote
« Reply #9 on: Mar 9th, 2008, 1:16pm »
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Madaline,
 
What flow rate are you using for your O2 therapy? 10 to 12 liters/min can be totally ineffective for a lot of us.  15 liters/min usually brings results if the pain is not too high on the Kip pain scale.
 
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Re: DepaKote
« Reply #10 on: Mar 9th, 2008, 9:20pm »
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In response to all you nice people, I have taken 15 liters of O2 with that special mask, and it did nothing for me. I was up to 480mg. Ver., but I try to hang around 360mg. each night. I did take 18mg. of melatonin at night, but all that did was make me so drowsy that I could not awaken until I was at a Kip 10. I know about the combo. of lithium and Verap. My NY neuro was going to try that then I moved to Md. and the neuro here said to try the Depakote so I figured I would; I thought the Dep. was like Lithium. I will try the 750 mg. of Dep for about a week and then make a decision as to its effectiveness. I'll keep you all posted. Thank you again for the advice and for listening - it really helps.  Madaline.
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Re: DepaKote
« Reply #11 on: Mar 10th, 2008, 1:33pm »
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Maybe you should ask your doc about increasing the dose before you give up on it. I had really great success with Depakote for 2 years. I had a real nasty episode in 2005 that lasted almost 3 mos. I went to see a nuero and she started me on Depakote at 500 mg. at night for the first five days then increasing to 1000 mg. (500 in the morning and 500 at bedtime.) It seemed to break my episode. I also used it in 2006 with great results. My episode only lasted about 2 weeks with only about 3 major headaches. (K8-9).  The Depakote did make it a little hard to get up in the morning but that seemed a small price to pay for PFDs.  
 
Just to let you know, my CH is episodic with about 98% being noctournal, maybe if our traits are simialr you may get similar revery *friendly* persons? Also want to point out I was on Topomax when I went to see the nuero and she took me off of it. The Topomax seemed to make my headaches worse and it made me extreemly drousy and completely loopy. I could not imagine being on Topamax and Depakote together!  
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