man. i get fred flintstone type feet! do you guys get them? I am at full throttle right now, can't function at all except to sit down for these few mins to type this mess.  What to do about being so cold and my feet being so huge?  I am trying dopeymax this time around, been doin this for 25 years now, imitrex inj is the only for sure thing and that tip from the webmaster is a lifesaver!! :(

Is the edema in your feet a new thing?  If so, have you discussed this with your doctor?

If not, you ought to.  It ain't right.  Maybe it's the Topomax, (I don't know) but it isn't the CH.  I'm not a doctor--I don't even play one on TV.  But I'd sure as heck talk to a doctor about it.

All the best,

George

i didnt find any fluid retention but a slight weight gain from the prednisone tapers, and now from the elavil....................how is your blood pressure? salt intake?

Are you taking Verapamil?

That is a side effect.

well lando goshen I figured it wuz sumpn most all of you got cauz I have always got it with my ch periods for the better part of these 25 years I have been experienceing the crummy things.  The only (semi) rational thing I can think of that I tend to sleep in a sitting position during the active period and that fluid goes down by gravity.  Hope I don't have CHF or anything like that!!  Thanks for the responses guys..... you are a great bunch

wrote on May 28^th, 2008 at 7:51pm:

Are you taking Verapamil? That is a side effect.

Jonny's right on that one.  I get some slight swelling in my ankles and feet from the 400mg of Verapamil I'm taking right now.  So long as it doesn't get out of hand it's all good.

On the other hand, if you don't know a reason for the swelling,

Run, don't walk to your Dr and find out what the answer is!

Good luck and let us know how you make out.

-Dennis-

I get periods of swelling like that (I'm chronic), but my doc or neuro didn't seem too worried. Gave me some lasix if I need it (don't remember when I got it filled last time). I usually just take some B6 (about 2000 mg) for a couple of days and it goes away.

Best to have it checked out tho. Better safe than sorry. I take topamax (have been since '97) and can't lay it on that since it's only periodic.

Hugs BD

I agree about what don't kill ya, etc etc.  No I don't take Verapamil. I just take Topamax and Imitrex Injections.  I do, however, take mobic for neuropathy pain, as i am a diabetic.  I, as I have said before, have always gotten this symptom with my cluster episodes and am quite surprised to learn that none of you have the same experience.  I feel it is probably from sleeping in the sitting position, but will follow up with the doc once again and thanks for the input, gang!!

oh yeah, I forgot to mention that I did take some of my wifes' lasix and it helped a little, but I didn't wanna self-medicate too much and dehydrate or worsen my cluster problem through lack of electrolytes ya know :-/

Ok, this may sound a little weird, but.... drink LOTS of "distilled" water - and I mean LOTS. Like about 1/2 gallon a day and see if that won't make you GO!

Take some Goldenseal Root caps along with the DISTILLED water. Don't make any plans to go anywhere for the day... but try this and see if it won't help get off the fluid. But make sure it's DISTILLED water - NOT tap water. Don't know why, but that stuff works.

Hugs BD

hmmmmmmmmm..... okay, too sick to go anywhere anyway.  Thanks

BarbaraD wrote on May 30^th, 2008 at 7:24am:

Ok, this may sound a little weird, but.... drink LOTS of "distilled" water - and I mean LOTS. Like about 1/2 gallon a day and see if that won't make you GO! Take some Goldenseal Root caps along with the DISTILLED water. Don't make any plans to go anywhere for the day... but try this and see if it won't help get off the fluid. But make sure it's DISTILLED water - NOT tap water. Don't know why, but that stuff works. Hugs BD

I'm going to do this for the water issue.  But why distilled?  I'm super curious about this right now.

This really sounds like something you should discuss with your general doctor.  Even if you usually notice it with your CH cycles, it could still be something that needs addressing.  Because swelling of the feet can mean some pretty serious things, it's best to at least talk with the doctor to rule out those things.  Be careful trying your wife's lasix - you've already noted it can drop your electrolytes - and it's especially worrisome if the potassium gets too low.

Anyway - I just think this warrants a call to your physician...

Take care,
Carrie :)

thanks carrie, thanks everyone (whadda caring community) I am going to see the old GP soon and will certainly go over it with him.  My Bp is, of course, a little elevated (always is during the bout), taking toprolXL for that. Anyway, I'll get back to you guys after I see the doc. Thanks!!!