Re: Neurontin and pain medications

[Guest guest]

Dear group,

 

My medication experience for what it's worth...

 

Neurontin does seem to help some with chronic pain but it was devastating for me

and doctors are generally 'not' aware of long-term effects. It killed me three

times, literally, before they found out what was causing respiratory and heart

failure. I was in hopital 3 months the last time, half that time in ICU. I'd

lost everything but worse what they call " core memory " -- what allows us to sit

upright, etc. It took a year to get that back. So much damage it was

unbelievable to us. They sent me home to die but I didn't.

 

And the 100 pounds I'd gained (mostly edema) -- just went away -- mostly into my

cath. I dropped 40-50 there in the hospital. That was from the Neurontin as

well. It really did help for awhile but I paid a high price. Financially as

well. If your hands swell for months and won't go away, there's trouble. IF only

I'd known. If only " he'd " known...

 

Under the care of a pain-management specialist, I'd taken it for 8 years at

2400-3600 mgs per day. (Sometimes a lot less because we could not afford it!) It

left me with permanent brain damage -- my memory is like shattered china -- and

oddly, additional neurological deficits. Just what we need, right? The

neurologist that finally caught it told me it, the effects in the body were

cumulative and it was used too often by phyicians afraid of managing opoids due

to state medical boards and the DEA. (I was on hydrocodone at the time as well

though. And antidepressants. Shrug...)

 

After the incidents, I found a new pain-management practice. I'm now on a

fentynyl patch, the hydrocodone for breakthrough still, and Effexor. I can have

muscle relaxers/relaxants as needed. Things are much better and I'm much less

" drugged " than before. There are good doctors out there who will provide help as

necessary but they are hard to find sometimes. I wish everyone could find

quality/humane medical treatment. I've known so many people with serious damage

in such a state of...suffering. And undertreated, not just with meds but any

real support with the exhaustion and other physical anomalies that crop up with

some cases of CMT. It's good to have places to share information, such as

this...

 

I hope any of this is helpful! Not to frighten anyone but to encourage to ask

the right questions...

 

Best wishes,

Shayla