Home Menu

Site Navigation



NeuroTalk Support Groups > > >

Research Study...if anyone is feeling altruistic

Reply
 
Thread Tools Display Modes
Old 08-19-2015, 11:10 AM #1
janieg's Avatar
janieg janieg is offline
Member
  
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
Default Research Study...if anyone is feeling altruistic
I have no interest, but thought I'd post it. There are 14 participating centers in the U.S.

https://www.foundationforpn.org/docu...nouncement.pdf

____________
janieg is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Patrick Winter (08-19-2015)
Old 08-19-2015, 08:57 PM #2
Patrick Winter Patrick Winter is offline
Member
  
Join Date: Jul 2015
Posts: 269
8 yr Member
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Default
Quote:
Originally Posted by janieg View Post
I have no interest, but thought I'd post it. There are 14 participating centers in the U.S.

https://www.foundationforpn.org/docu...nouncement.pdf

____________
Mexiletine can kill you. Cymbalta made me wanna kill myself, Lyrica turned me into an absolute zombie. Never tried Pamelor. This isn't for me either though.
Patrick Winter is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Enna70 (08-24-2015), janieg (08-19-2015)
Old 08-19-2015, 10:29 PM #3
janieg's Avatar
janieg janieg is offline
Member
  
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
Default
Gabapentin was the only thing I tried. Felt very spacey for about week. Was only taking 300 mg at night, and I'm not sure it was doing anything.
janieg is offline   Reply With QuoteReply With Quote
Old 08-23-2015, 11:45 AM #4
Patrick Winter Patrick Winter is offline
Member
  
Join Date: Jul 2015
Posts: 269
8 yr Member
Patrick Winter Patrick Winter is offline
Member
 
Join Date: Jul 2015
Posts: 269
8 yr Member
Default
Quote:
Originally Posted by janieg View Post
Gabapentin was the only thing I tried. Felt very spacey for about week. Was only taking 300 mg at night, and I'm not sure it was doing anything.
They all scramble up the brain signals. I have gone from a max 3600mg dose of Gabapentin down to 600. I would like to get off it completely soon. I find I can deal with the the daytime pain. When the nighttime burning kicks in I need help.
__________________
Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily
Patrick Winter is offline   Reply With QuoteReply With Quote
Old 08-23-2015, 12:55 PM #5
janieg's Avatar
janieg janieg is offline
Member
  
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 793
10 yr Member
Default
Quote:
Originally Posted by Patrick Winter View Post
They all scramble up the brain signals. I have gone from a max 3600mg dose of Gabapentin down to 600. I would like to get off it completely soon. I find I can deal with the the daytime pain. When the nighttime burning kicks in I need help.
That's pretty much where I was. I just wanted "as needed" help with pain.

I know this is a long-shot, but are you involved with genetic genealogy? I was looking at my cousin's DNA matches the other day, and came across a "Patrick Winter" he matched.
janieg is offline   Reply With QuoteReply With Quote
Old 08-24-2015, 03:24 AM #6
Neuroproblem Neuroproblem is offline
Member
  
Join Date: Feb 2015
Posts: 355
10 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
10 yr Member
Default
how odd, only the 4 most common drugs for treatment i would expect some new drugs, not the old ones. It could be a marketing ploy by the pharm companies.
Neuroproblem is offline   Reply With QuoteReply With Quote
Old 08-24-2015, 06:56 AM #7
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
  
Join Date: Jul 2014
Location: Midwest
Posts: 584
10 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
10 yr Member
Default
Quote:
Originally Posted by Neuroproblem View Post
how odd, only the 4 most common drugs for treatment i would expect some new drugs, not the old ones. It could be a marketing ploy by the pharm companies.
Nope. It's funded through Patient Centered Outcomes-Research Institute. They are trying to figure out which drug is best for the patient. This kind of data is very helpful for the end user.

http://www.pcori.org/funding-opportu...at-who-we-fund

Pharma generally doesn't care much about stuff like this. Now things like the recent changing of cholesterol guidelines..... Pharma gets all worked up because it significantly impacts their market share.
madisongrrl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
janieg (08-24-2015)
Reply

« Previous Thread | Next Thread »

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 08:34 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home