Gary's up to 1000mg of Depakote now.  He's forging ahead despite the fact that about 3 days after even starting the depakote (at 500mg) his cluster activity levels increased.  This past weekend, he had to redefine the peak of K10 pain.  The depakote's not making him sick this time (but he feels so sick all the time because of the fevers it's hard to tell, but he's keeping it down this time) - but is this just a coincidence and he's in some kind of upswing cycle - or can the depakote make it worse?

Thanks if anyone has experience or thoughts on the matter,

Laurie

Well, being that different people react to different things, it's always a possible it could be making it worse. Hopefully it's just be a little upswing, or the beast trying to fight the meds.

Just make sure he's not sleeping a lot more than normal after starting this. If he starts to, get him to the doctor, and ask for a liver function test to be done on him.

At this stage, this and related meds are experimental treatments and so much is yet to be learned.

So, yes, it may not be good for him. Clearlly an issue to thrown back to the doctor to resolve. Personally, I think there are other meds with a longer track record of effectiveness and safety which I'd prefer that someone start with.

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Yes, it can be making it worse. Lithium made me SO much worse, but works great for some. The same with a regular dose of Imitrex.

The only way to find out is to experiment with it. When he skips a dose does he feel better?

i could not handle depakote at all and i was nowhere near that dosage. i could barely move no energy whatsoever. and it caused massive ringing in my ears. it is an antiseizure drug. if it is helping that at least is good news. my docs got me off depakote and put me on topamax. which is also an antiseizure drug and that one turned out to be my silver bullet.....once i got to 100mg a day (after a few weeks). and its true this stuff affects us all differently. topamax is not without side FX... it got rid of 90% of my constant pain and lessened attacks to a merely annoying level.....but...ears ring all the time (i dont notice it unless its quite tho) but with a 3 year old in the house well its rarely quite enough for me to notice. lol. the oddest part is the spatial distortions.. @ my cluster times when i would have an attack i get light sensitive and for about an hour the walls seem like they r a million miles away my head and hands will feel huge. trippy kinda stuff. then it passess. ill take that over the depakote side fx or a cluster attack any day.. hope this helps..
MKD

MkeithD wrote on Jan 31^st, 2009 at 3:29pm:

lol. the oddest part is the spatial distortions.. @ my cluster times when i would have an attack i get light sensitive and for about an hour the walls seem like they r a million miles away my head and hands will feel huge. trippy kinda stuff. MKD

 Are you sure those are not mushroom capsules ;D.  
 But the Depakote made me feel like crap and worsened my ch,  I tried it twice for about three weeks each time with the same results both times.
  Phil

LOL. quite sure. mushrooms are much cheaper than topamax :p
so far as i can tell i am the only one that experiences this particular side effect from topamax....but its the only thing that has helped me up to this point so even tho it cost 325$ a month and trips me out on a daily basis *shrugs* whats a guy 2 do.

know where i can get some 'shrooms in philly? lol

MKD

It was 15 years ago when I took Depakote for a couple of weeks. It made me very ill and I remember some very bad attacks and the oxygen not working for me then.

At that dose I really fear it is a failure to control Gary's CH. It bothers me, how slow things happen sometimes. When you suffer CH, minutes become hours and hours become days. Damn.

Don

During my last cycle my neuro gave me depakote, and I slowly felt myself sinking into a state of depression and immobility. I don't remember it ever making my CHs worse, but it didn't help... and that was at 500mg a day.

My daughter Lisa was like Kim. When her doctor has tried everything and can't get the hard cycles to stop, they do IV depekote. Once she is discharged she is on 1000 to 2000. It is awful! She is lethargic, narcoleptic, can't sleep at night, can't stay awake in the day, gains weight and her hair falls out. She hasn't used any in over 17 months and all of this isn't an issue anymore. It did break the cycle but the side effects aren't worth it. She has found a much better alternative. :) My niece and one of my students both use it for epilepsy without any of these side effects. I guess everyone is different and possibly the reasons it's used makes it different too.

Charlotte

Laurie...I'm interested. Why is Gary trying depakote again if it didn't help him before?

Wouldn't it be better to try out new meds instead of old ineffective ones?

- Best regards and PFDAN,
Rosa

MkeithD wrote on Jan 31^st, 2009 at 7:53pm:

LOL. quite sure. mushrooms are much cheaper than topamax :p so far as i can tell i am the only one that experiences this particular side effect from topamax....but its the only thing that has helped me up to this point so even tho it cost 325$ a month and trips me out on a daily basis *shrugs* whats a guy 2 do. know where i can get some 'shrooms in philly? lol MKD

Before I had my anaphylactic reaction to topamax, it did that to me.

My cousins had great fun putting my hands in front of my face and watching me stare blankly, or start laughing hysterically, until someone would come in and make them stop.

ETA: Rosa, my bet? Being he's med resistant, he may have gone through the other 'new' options already. I'm at that point in my treatment. They have nothing that they can give me, due to my allergies, and problems with certain classes of drugs.

Ungweliante wrote on Feb 3^rd, 2009 at 3:20am:

Laurie...I'm interested. Why is Gary trying depakote again if it didn't help him before? Wouldn't it be better to try out new meds instead of old ineffective ones? - Best regards and PFDAN, Rosa

Actually this neuro is starting with the meds he thinks are the "best" treatments - and he's trying meds that Gary WAS on before, because he believes Gary was not necessarily ever on doses that were therapeutic for him.  For instance, verapamil.  Gary was on 480mg - but apparently some people (if they can tolerate it) have to take as much as 1200mg.  So now he's got Gary bumping his number up by 40mg a week and seeing a cardiologist every week.  

And he was on 500mg of Depakote with the old neuro.  But this guy thought that might not have been high enough.

Now, of course, we've seen him, and Gary told him what happened on the 1000mg of Depakote, and he says, "Oh yes, that can happen.  It's unusual, but it definitely happens."

Well, from this thread, it doesn't look like it's that unusual to me!   >:(

Now he gave Gary scrips for Frova and Topomax.  Again - Gary's tried a number of triptans (not Frova specifically) - none of them have worked.  And he's been on Topomax before - but, apparently, potentially not a therapeutic level.  Gary told him he didn't want ANY of that shit - he wants to try lithium - one of the few traditional treatments he HASN'T tried yet.  The neuro wants to wait until after his MRA, which got screwed up because of some insurance issue.

We are both getting really sick of this guy - we may just have to hoof it down to Philly.  What a pain in the ass.

What this neuro needs to do is co-ordinate with the infectious disease doc there, check him into the hospital for a few days, and figure out what is causing these friggin' fevers.  He had FOUR fever events from Friday night - Monday morning, each one peaked around 105.  If that doesn't merit getting him checked into a hospital to figure it out, I don't know what does.

We played phone tag with him today, but we did get one of Gary's other Docs to call him and discuss it, so at least we know he wants to pursue it.  Thank God.

Laurie

Hi Laurie,

Is it possible that Gary has Serotonin Syndrome. That can certainly push up temperature.

Ellick.

That was our first thought and it's been ruled out.

STILL playing phone tag with the neuro!  Gary's other Doc said it was impossible for him to get through as well.   ::)

BUT.... the cardio said he'll call the top infectious disease doc here in northern NJ and see if he can't get him to fit Gary in ASAP.   [smiley=thumb.gif]  We'd so much rather go that route than the hospital... but he'll do whatever needs to be done.

Laurie