Intractable pain Survivors Manual

[bridgie]

FYI: got to wondering what the term "Intractable Pain" meant. Googled it. found a wonderful manual called "Intractable Pain Survivors Handbookl" written by Forrest Tennet, MD in 2007. Its excellent. Now I know I have Intractable Pain. This has helped both my husband and I. Look it up!

http://pain-topics.org/pdf/IntractablePainSurvival.pdf

[JTomes]

I can't thank you enough for this WONDERFUL resource. I plan to take a copy to my doctor next week! GOD BLESS!
Jo Ann

[dally1932]

I would also like to thank you for bringing this "handbook" on Intractable Pain to my attention. I am 6 + years from my surgery and have pain on the AN side every day. This has led to disability after 26 years with the same company. I visited my doctor yesterday and gave him a copy of the handbook. I told him I was not trying to diagnose myself, but the information in the book was so much like mine that it was interesting to read. I told him if he has time at some point I would like him to read it, or at least browse some of the areas I highlighted. He indicate he had a couple of patients with Intractable pain. I did ask him for a prescription for Soma/Carispadol to see if it would help me relax, as I feel like tense like a tight rubber band ready to snap most of the time. It was also interesting from the article how much stress and anger has to do with triggering episodes of pain. I thank you so much for the link for this article.
Chuck

[bridgie]

I'm so happy for you! I also sent my doctor a copy and gave my therapist a copy as well. After reading the manual, I really appreciated the direction my physician was going with my pain management. Prior to reading this manual, I was worried about all the medication I'm using. I felt guilty. My doctor has me on long acting morphine. Now I know how important it is to stay on top of the pain. I'm doing a lot better on the MS Contin. My doctor had felt I was under treating the pain. More recently the pain pattern changed (for the worse). While I'm trying to figure that out, at least I'm able to function.

[Captain Deb]

Wowie, I wish I'd had this manual to pass out to all my docs at about 6 months post op when they were all standing around with their you-know-whats in their hands trying to figger out what to do with me!  I was so under-medicated and in so much pain 24/7 it was just ungodly for 3 years. Reading this man's pamphlet makes me feel alot less guilty when I reach fer the happy pills now! I'm running to Staples tomorrow for printer ink!  Thanks!

Capt Deb

[Soundy]

Deb ..did you have some spare paper?? I have three ink cartridges and no paper  ... going to get some
paper and  print a couple copies and attack them with a highlighter to point put bits that are relevant to me...

[Syl]

Bridgie,

Thanks so much for sharing your discovery with us. I have shared it with others under a differnt topic, and thank you on their behalf.
I find it interesting and believe it will be helpful.

Thanks again,
Syl

[bridgie]

Well, its been awhile since I've read the manual myself! I've been on MS Contin now since this past June. This manual made me understand where my physician was coming from. Otherwise I was reluctant to try stuff and for sure I was undermedicated. But now, I'm in a different situation. I'm trying to get off the MS contin which is a long acting form of morphine. I've lost my appetite and now that I've gone to a headache specialist that has me trying Topamax the two together have me in a crisis w/ weight loss! I am weighing just barely over 100 lbs and I'm 5'5". Now my doc is getting ready to "pull the plug" on the topamax....he's worried about me and having me come to his office every week to weigh in etc. I'm now drinking ensure. Pretty weird. I don't know what I'll do next for this frick'in pain problem. Your damned if you do and damned if your don't!

[Captain Deb]

I'm so sorry to hear that one, Bridgie.  The Topamax sure has been a wonder drug for me--I don't know where I'd be without it. I think the weight loss levels out a bit over time--I lost a lot of weight at first and my appetite was really off at first, but after being on it for 6 months or so it really levelled off and I'm at a pretty healthy weight now and my appetite is pretty good.  I titrated up really slowly--12 mgs to start with--it took months to get me up to 100 mgs.  Topamax is one of those drugs that has pretty severe side effects at first, but that go away as your body gets used to the drug--I hope you can hang in there with it as it really does work well on our type of post craniotomy migraine.

 Topamax is a pretty powerful diuretic, so staying hydrated helps, too. I've always got something to drink handy, and no it's not rum! I drink a lot of decaf green tea, gallons of it in fact. Hot in the winter and iced in the summer.

Thinking of you----

Hugs,

Capt Deb