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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Opinions on depakote?

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Opinions on depakote? (Read 4920 times)

birdman

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Opinions on depakote?
Jun 22^nd, 2010 at 10:26pm

I am unable to take the normal meds due to other ailments or side effcts. Verapamil sent my heart into arythmia(sp?), I have kidney stones so no lithium, and crohns disease so no indomethacin. Doc wants to try depakote at 500mg a night for a week and then twice a day.
Was using alternatives but a med was interfering so I need to taper off that. I am an 02 and red bull fanatic but can't seem to get ahead of this cycle. Came on fast, and has switched sides on me after my first alternative busting attempt.
Looking for any and all advice on depakote. Didnt see much after doing a search.
Thanks!

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melissa76767

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Re: Opinions on depakote?
Reply #1 - Jun 22^nd, 2010 at 11:15pm

Your story sounds just like mine!
My ch doctor just prescribed that for me today. I am currently on a round of steroids 60mg to start, Depakote 500mg once a day for a week and then 2x a day after that, imitrex injections and of course oxygen. I hope to hear some encouraging comments. I have been in my cycle since early Jan and I can't stand them any longer!! I have about 6 ch's a day with at least 4 of them in the middle of the night. The side affects of Depakote really scare me, but I am to the point of trying anything if it makes this beast go away.
I am so glad that there is a place where others understand what we are going through.

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wimsey1

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Re: Opinions on depakote?
Reply #2 - Jun 23^rd, 2010 at 8:24am

DeDepakote is used to treat various types of seizure disorders. It is sometimes used together with other seizure medications. It is also used to treat the manic phase of bipolar disorders (manic-depressive illness), and to prevent migraine headaches. It had no effect on my CHs, nor did any of the usual antiepileptic meds which have been successful with migraines. Hope it helps. Blessings! lance

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pakote, or divalproex sodium,

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birdman CH.com Old Timer Offline Will try anything once! Posts: 426 x0\|staten island\|USA\|\|0\|0\|NY,New_York Gender:	Re: Opinions on depakote? Reply #3 - Jun 23^rd, 2010 at 8:51am I appreciate the comments Wimsey though am discouraged by its failures in helping you. Melissa, sounds like we are traveling the same road. If you find a good exit, let me know.
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lennycohen

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Re: Opinions on depakote?
Reply #4 - Jun 23^rd, 2010 at 9:26pm

I used depakote 500mg (pink) three times a day, for a few years - brought my twice/three times a year episoddes down to one - For thee past two years, I've started up right around Memorial Day. I have also used IV Depakote (Depacon) to break a cycle - 1000mg dripped over a 60 minute IV - one treatment every three days for 3 total treatments. I quit the Depakote because I drive a lot for my job, and I couldn't keep my eyes open - so I'm trying some different options right now. In my current cycle - which started about May 24th - I had been off the daily depakote for about 6 months, but we tried the IV's anyway, without the oral. The IV's didn't work to break my cycle. Went to steroids, 40mg dexamethasone daily for 4 days, no taper, with an occipital nerve block on my headache side. Finished the steroids Friday, only two 7+k's since then (before, was getting 4-5 7+k per day). I also have a relatively constant 2-3k ache all day long, but ambien cr gets me thru the night.

Sorry to go tangent. Back to the Depakote.

It seems that your dose may be light, but docs using Depakote usually do a valproic acid blood level to check dose after 4-5 days on the oral drug. I'm not sure what the therapeutic range for cluster is supposed to be, but 1500 mgs a day dose was a good spot for me.

Also, the pink (faster release) did better than the gray (slower release) for me.

Good luck.

Lenny

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Lettucehead

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Re: Opinions on depakote?
Reply #5 - Jun 23^rd, 2010 at 10:02pm

I'm just wondering, but with the concern over indomethacin - do you have clusters or do you have hemicrania continua or one of the similar trigeminal-autonomic cephalgias? I'm just wondering 'cause usually indomethacin isn't used for CH but is found to be very very helpful for some of these other very similar conditions...

In any case, depakote (divalproex sodium) is FDA approved and is mainly used for seizures of different types, bipolar disorder, and headache prophylaxis.
It can be a nasty med, no doubt about it. That being said, I know lots of people on it for various issues and they are doing just fine. Yes, it has risks - liver/pancreas toxicity and it is a teratogen - it may also have less serious effects such as upset stomach, sleepiness, mood changes.

BUT, 1) the dose used for headache issues is lower than that used with seizure or bipolar disease and therefore much much less likely to have serious side effects and 2) with a physician monitoring regularly with appts and lab work at the start of treatment and with dose change, the likelihood of having significant problems with some of the more serious side effects are low.

Don't discount the med because of what MIGHT happen - your severe headaches ARE happening and need to be treated... give it a go and let us know how you're doing...

Good luck!

Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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birdman CH.com Old Timer Offline Will try anything once! Posts: 426 x0\|staten island\|USA\|\|0\|0\|NY,New_York Gender:	Re: Opinions on depakote? Reply #6 - Jun 23^rd, 2010 at 10:25pm Thanks for the input folks. In my last cycle the nuero thought I might have developed some sort of hemacrania but the indo wrecked my stomach before we could see if it helped. She is uping the dose after one week from 500mg once a day to 500mg twice a day. We will see what if anything happens
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Lettucehead

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Re: Opinions on depakote?
Reply #7 - Jun 24^th, 2010 at 1:03am

Just a thought and you may have already tried it, but could you do something like a proton pump inhibitor i.e. protonix, prilosec, nexium and/or a med like carafate (sucralfate) which is a stomach mucosa protector when you take the indomethacin? Or was the problem less your stomach mucosa and more an issue with increased bleeding and or a worsening course of your crohns?

that's one of those very difficult issues - trying to balance the risks and benefits of various medications with your various co-morbidities and contraindications.

Again, good luck and god bless and please keep in touch about how you're doing...

Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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birdman CH.com Old Timer Offline Will try anything once! Posts: 426 x0\|staten island\|USA\|\|0\|0\|NY,New_York Gender:	Re: Opinions on depakote? Reply #8 - Jun 24^th, 2010 at 8:30am I was on nexium at the time and the Crohn's still flared up.
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Trooper

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Re: Opinions on depakote?
Reply #9 - Jun 24^th, 2010 at 10:34am

I had great success with Depakote for 2 years before it became ineffective. Last time I saw a Neuro she said we could try again with a higher dose. I was on the same dose you are currently taking. The Neuro told me that it was pretty common for people to take up to 3000 mg. for relief.

I have not taken her up on the offer being as we wanted to conceive and now I am currently pregnant. It is something I am keeping in my arsenal of options for the future though. I hope you find success with it too.

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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: Opinions on depakote? Reply #10 - Jun 24^th, 2010 at 11:23am birdman wrote on Jun 24^th, 2010 at 8:30am: I was on nexium at the time and the Crohn's still flared up. Yeah, nonsteroidal antiinflammatories can do that to Crohns...
Back to top	Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH IP Logged

Batch

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Re: Opinions on depakote?
Reply #11 - Jun 24^th, 2010 at 11:43am

Hey Birdman,

Here are a couple figures to consider... The CH.com cluster headache survey of over 12,000 cluster headache sufferers at the left lists only 1% of the participants that thought depakote was effective. Data from the 1134 cluster headache sufferers who participated in survey we took in 2008 indicate 92 out of the 1134 participants had tried depakote (valporic acid) and 12% rated it effective. Another 65 participants tried Divalproex (timed release depakote) and 10% of them rated it effective.

I stopped taking preventatives over 5 years ago... The risk reward ratio just wasn't worth it... The preventatives I took were too invasive with too many side effects for the minimal decrease in the frequency and intensity of my attacks.

Instead, I use oxygen therapy at flow rates that support hyperventilation.

Yes, I still have CH attacks, but I spend most of the time in a low cycle of 3 to 4 hits a week and these are low Kip-level hits that abort in 2 to 3 minutes at flow rates that support hyperventilation.

I also take calcium citrate tablets with vitamin D, magnesium and zinc washed down with homemade lemonade as my preventative regimen when I go into a high cycle of 3 to 4 attacks a day.

The mineral supplements and lemonade elevate my arterial pH and this appear to be responsible for the reduction in the frequency and intensity of my CH. It usually knocks me back into a low cycle in 24 to 48 hours. I also cut back on red meat and eat more alkaline forming foods like salmon and lots of green veggies. The following link lists the food types that work best to elevate arterial pH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Hope this helps.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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melissa76767

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Re: Opinions on depakote?
Reply #12 - Jun 27^th, 2010 at 5:33pm

I am on day 5 of the Depakote and so far so good. I have slept through the night 3 days in a row and only had to use my imitrex injections one of the mornings when I woke up. I am having some side effects, but I think they are mostly from the steroids. I am getting a cold, I am retaining a lot of fluids and having very vivid dreams......but thats nothing compared to the pain I have been having!! I have to keep thinking positivly...These have to be over soon.

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jayhedges

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Re: Opinions on depakote?
Reply #13 - Jun 27^th, 2010 at 8:04pm

Melissa, is your cold sinus like or in your chest? I'm really new here...just 17 days into my first cycle and I thought this thing was a sinus infection 2 weeks ago. Pressure in my right side sinus and mild drainage along with watering in just the right eye. You have been at this a while so I'm sure you know the difference between a cold and CH symtoms, but just asking for my edification.

Hang in there...this place has been my only outlet where people understand and don't try to tell me what I have or don't have. It's reassuring even when the Beast is dancin on my head. Jay from Baltimore.

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melissa76767 CH.com Newbie Offline I Love CH.com! Posts: 11	Re: Opinions on depakote? Reply #14 - Jun 27^th, 2010 at 9:35pm Definetly a cold, but thanks for asking!
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danielpeterson

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Re: Opinions on depakote?
Reply #15 - Jun 30^th, 2010 at 10:00am

I tried depakote a couple of months ago but it didn't work for me. I then finally got in to see the only neurologist in the hundred mile region around here and he tried another anti-seizure medicine, which didn't work.

I must admit that my headaches have morphed quite a bit since I was first diagnosed with CH in 2006 by a small town doc. (It probably wasn't a real good guess in the first place.) Anyway, the neurologist now has me on an anticonvulsant called carbatrol and it is working.

Praise GOD!!!

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melissa76767

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Re: Opinions on depakote?
Reply #16 - Jul 1^st, 2010 at 7:50pm

Update of the depakote....had to stop using it. Bad bad side effects. I got major flu symptoms and It caused me to get very depressed. I was in a very bad place. I have now stopped the depakote and now I am on gabapentin. I think it is starting to help me. I wake up once a night with a ch, I take an imitrex shot and go back to bed until morning.
The only thing I don't understand is I have a major pain where my shoulder meets my neck. It is localized in one area and the only way I know how to explain it is it feels like an abscessed tooth pain in my neck. It feels like there is pressure in there that needs to be released. Tomorrow I am going to a pain center to get a shot there, I hope it works. Also my oxygen is not working for me anymore. I have a re breather mask and I am using it at 15?

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Guiseppi

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Re: Opinions on depakote?
Reply #17 - Jul 1^st, 2010 at 8:26pm

Hoping you mis printed but you need a NON re breather mask. The key to oxygen is 100% 02 to the lungs, no outside air, no exhaled air. Some have to crank the flow rate up to 25 LPM to effectively hyper-ventilate.

Also, when 02 stopped working this cycle I went on Batch's arterial PH diet. For me that was taking Magnesium, Calcium with Vitamin D, and Zinc. Chased down with lemon juice. It alters your PH making you less suceptible to CH attacks. Worked for me 02 started working again. Worth a shot?

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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melissa76767 CH.com Newbie Offline I Love CH.com! Posts: 11	Re: Opinions on depakote? Reply #18 - Jul 1^st, 2010 at 9:12pm Yes it was a miss key and I just started the ph diet also...I will try anything that may help.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Opinions on depakote? Reply #19 - Jul 2^nd, 2010 at 9:35am Hoping it helps you as much as it did me. Joe
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melissa76767

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Re: Opinions on depakote?
Reply #20 - Jul 2^nd, 2010 at 11:32pm

OK I am going to give up on preventative medicines. I just had to call through my doc's exchange. I am swelling BIG time. My legs and hands are huge. The Gabapentin is the culprit. I am going to stick with oxygen & imitrex injections for a little while to clear out my system.
The good news I had some trigger point injections in my neck today and I am currently feeling relief from my neck pain!!!

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AgentOrange Ex Member	Re: Opinions on depakote? Reply #21 - Jul 10^th, 2010 at 9:26pm just to add, my neighbor is 22, he has siezures and is on depakote for a little over a year and a bone scan showed bone loss thought to be contributed to by depakote, so be preventaive and talk to your doc about bone desity tests whille using depakote AO
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Neal

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Re: Opinions on depakote?
Reply #22 - Jul 12^th, 2010 at 11:32pm

I took Depakote about ten years ago for about a month or so and all it really did was dope me up. But everyone's body is different and what didn't work for me might work for you. I know it has helped some of the people here. You might want to at least give it a try - if it works for you, GREAT! You've found something useful. If it doesn't, then you know it doesn't work for you and maybe there's something else you can try. I know that there are TONS of medicaines that are used to treat CH. In any event, good luck, God Bless, and my prayers are with you!

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