Saturday, September 26, 2009

CIDP ... Rocky's blog

Have been remiss about posting. Have added Imodium to my regimen ... whenever the neurontin/gabapentin starts to add its unwelcome side effect, take an Imodium with the morning's gabapentin. So far -- so good. Keeping fingers crossed.

So it's take a pill, then take another pill to ward off the side effects of the first pill.

What a melluvahess this is!

But I'm in so much better shape than so many others that I can only count myself as being very very lucky.

At this moment there is a young woman, San Francisco cop -- on medical leave, of course, whose CIDP was so bad that she should've had a bone marrow transplant. Since insurances don't pay for that sort of thing and her fellow cops and her friends and family couldn't come up with that huge amount, she and her docs decided to go for the next best thing ( also not paid for by insurance ) ... jolting her with heavy heavy chemo, then harvesting her own stem cells, more meds, then return her stem cells ... and pray.

Yes, I am lucky.

Monday, September 14, 2009

CIDP ... Rocky's blog

No, b.i.d. doesn't work. Mercy, but it certainly doesn't work! -- or works too well, however one wants to look at it. Cutting back to one gabapentin at night won't hold off the RLS. I'd try to live with the pinpricks and electric shocks and burning thighs and all if I could just have sleep ...

So I've e-mailed my neuro asking what can we do now? I didn't call. This is Monday and I'm sure there are serious problems to be addressed on a Monday.

No more gabapentin for me. I don't want Lyrica or Cymbalta as they have their own side effects.

I still have one-half of a Vicodin left over from 2 years ago when I had the reconstruction after mastectomies. Will try to 'make do' with 1 ibuprofen and 1 acetaminophen, which doesn't always work. Can I cut that 1/2 Vicodin in two? Wonder how well a one-fourth Vicodin works?

Are we having fun yet? NOoooooooooooooooooo, darnit.

Friday, September 11, 2009

CIDP ... Rocky's blog

I cut back on the gabapentin. Instead of 300 mg. t.i.d., just one capsule at bedtime. I'd hoped that would hold the RLS at bay.

It didn't.

3 hours into the night, squirming and thrashing about, I got up and took my "fix" regimen of 1 acetaminophen and 1 ibuprofen. Also chewed one fiber tablet, which is something someone on the GBS/CIDP forum had suggested. Seemed strange, but -- what the heck -- might as well give it a try, too.

It wasn't just the RLS. The "burn" of my thighs was back in full force rather than subdued as it had been with the higher dose gabapentin.

So now it's one 300 mg. capsule twice a day. And a fiber tablet twice a day.

What is it Jamie Lee Curtis hawks on TV? ... oh yes, Activia ... ; )

I hate this disease!

Tuesday, September 8, 2009

neurontin/gabapentin side effects?

Okay, so the gabapentin has lessened the pinpricks and electrical shocks. I can live with that if need be, I hope. It has also removed the overwhelming fatigue that set in every day mid-afternoon. And that was so welcome! The med, does, however, carry side effects. Constipation/diarrhea would be one of the many.

Since I've been on an "eat more fiber" kick for more years than I care to remember, the side effect I experienced was decidedly not unwelcome. You get the idea, I'm sure. ;)

But now the side effects have caught up with me. I'm going to have to do away with the gabapentin, I suspect. Maybe just a dose at night to relieve the RLS? And help me get to sleep?

Anything else anyone has tried that's alleviated the pinpricks, electric shocks, RLS and fatigue?

Other than IVIg,I suppose, since I'd have to travel about 300 miles round-trip each day of IVIg treatment. And then there's the matter of ... is M/C going to pay? Gee whiz! Are we having fun yet?

Saturday, September 5, 2009

CIDP ... Rocky's blog

Have I settled into a "plateau"?

I like that term. Stole it from another CIDP person. : )

I'm not seeming to get any worse. If anything, the neurontin/gabapentin is holding some of the pinpricks and cattle prod electricity at bay. Numbness is the same.

So I'd consider this a plateau ... and I'm going to enjoy it fully for however long it lasts! Yes indeed.