Note: No information on the pages of this Web Site should be taken as medical opinion. Always check with your doctor before trying any treatment/medication...

Allen's Personal PN Story Line

I have had PN for 6+ years and learned early in my jouney that you have to speak up for yourself--it is called advocating. I am a recovering addict (opiates) just recently clean after 12 years of clean and sober.

My PN is idiopathic poly, so needless to say, I cannot take pain meds in safety. I have had 2 back sugeries and headed for a third soon. No causes for my PN are determined but I know I must stay sober.

I go to the New England medical center in Boston for their pain clinic.I feel like it is a factory at Beth Israel and Mass general. Every surgery I have had, my neuropathy gets worse-- hmm, how strange. I use a tens unit on my feet as a last resort--(try it on your ankles if you are going to go where you cannot lie down for a treatment--it worked OK at Disney world.

I also use a specially prepared compound that is made from ketamine (you won't find it in your pill book because it is not something from your local drug store. My pain mgmt doc at NEMC prefers to put stuff on you, not in you. It works in about 30 mins as it soaks in and is good enough to break the pain cycle--but, you have to force yourself out of bed and get active. That takes my mind off of the PN. Ketamine is commonly used as an animal anesthetic. This is made up by a compounding pharmacist. A prescription is needed.

My care team is great and they all know my 12 step recovery struggles. Oxycontin kicked my butt big time. I also take neurontin. I got my dosage increased as the opiates stopped working--and was up to 3600mg/day. Oh my goodness--side affects galore. I called it my stupid drug cause it made me search for words. I had memory loss and major vision changes.

I asked my nueroligist to let me wean off of Nuerontin to find where my new pain threshold was. Igot down to 900mg/day. I noticed major changes in vision. I had gotten new glasses in May 2001. But now, everything was blurry. I happened to pick up an old pair of glasses and I could see better and they were 2 years old. I pulled out 5 Year Old glasses and I could see perfectly!!!! My frequent lense changes were due to the Neurontin!!! I NEVER knew that vision was a side-effect till I re-read my pill book. I missed that one when I first went on it. The fatigue was also overwhelming.

So now, I am (with my PCP and Neurologist) adjusting my own levels. How do you say "advocating for one's self"). I am 54 years old and in perfect health except for a little old heart condition. The drugs which were used to control my V Tack are probably the cause of my PN. I have to decide how much pain I can live with, notwithstanding side effects.

Boy am I long winded.