just saw the PM for the first time
 

Hi all,
Just got back from the first PM meeting. He has put me on Neurotin 300 mg, 1 a nite for the first week, then 2 at bedtime after that. He also put me on amitriptyline 25 mg, percocet 2 times a day, and a special cream I had to have compounded at a special phar. don't know what it is but it starts with a K. They will mail it to me tomorrow as I couldn't wait for it. He wants to know when the symptoms started, but I don't know as in the last 3 years I have had 8 surgeries. I'll check with my surgeon to see when he thinks it started. If it's under 2 years he said he can do nerve blocks, if it's over, then we would think about a spinal stimulator ????...don't know what that is. I go back to see him in 4 weeks. how bad are these meds going to make me feel. I've gained so much weight over the last 3 years because of being bed ridden or in a wheelchair. How much should I expect? anything I can do to avoid it? any suggestions. I just can't believe how this is going. I though he would tell me just to stay on the percocet. it doesn't stop the pain at all, but at least I can rest with it. Oh well...any advice??
Mary

The medications differ on side effects as far as each person...

The neurontin has helped me with burning pain/ allodynia. Only side effect I had was dizziness at first (many do say they have problems with weight gain, fogginess, irritability, etc).
The amitriptyline helped me sleep. It also helps with depression.
The percocet made me very sleepy, disoriented and foggy. But did help with the pain!

I know that the doses on the neurontin and amitriptyline are quite low, so if you see no relief from them, they can still be increased a bit (though some people do well/ better with lower doses- you only know by trying)! I am currently on 2700 mg of neurontin (I believe the highest the Drs. will use is 3600 mg), and 125 mg of amitriptyline (which is still quite a low dose).

As far as the spinal cord stimulator you can go to google and look up "spinal cord stimulator". Or visit these sites:
http://www.medtronic.com/neuro/paint...imulation.html
http://www.controlyourpain.com/index.cfm?langid=1
https://www.ans-medical.com/patient/.../questions.cfm
http://www.spineuniverse.com/display...ticle1980.html

I would suggest asking other RSDers about their SCS/ how it helped them.

I hope I helped you in some way! Sending many gentle hugs :hug: :hug:

Hi Mary!
I am on 100 mg. of neurotin in the afternoon and 100 mg. at bedtime.(from my P.D.) I also am on Vicodin ES and percocetts as needed.(from the surgeon who did my CT surgery)I take Welbutrin 75 mg. in the morning, xanax(0.5 mg) I am having my 3rd. ganglion neck block done tomorrow. If this doesn't help, my surgeon and pain Dr. may send me to Clevelan clinic?? I am hoping my P.D. will up my dosage of Neurotin?? It does help with the burning, stabbing pain.(only for a short while, that is why I want it upped, so far the jerk. LOL.. will NOT up it!! I started having trouble with RSD after I had Carpal tunnal surgery on Jan 9th.2007. I wish you the best, Mary! Love, Desi:hug:

thank you both for you information. I hope the lower amts of meds will help. i think that even tho I knew the docs thought I had RSD, in the back of my mind I thought that this doc would say "no, that's not what you have"" Just knowing that I have it makes me sad, but I'm only allowing that for a few minutes. then it will be back on track with doing what I have to. well,hubby is home so I will let him know what happened today.
take care and again thank you and any other info you think will help please let me know.
Mary
:grouphug:

Mary.. I said 100 mg. at bedtime.. I am sorry.. I am on 200 mg. at bedtime.. I'll blamb the pain for this mistake!LOL:winky: Love, Desi

Desi,
No problem, My mind is like a bucket with holes in it. Nothing seems to stay around a long time.. lol.. do you take it with food? do you get sleepy right after taking all the meds?
Mary

Hi Mary,

I have been on gabapentin - 3600mg that was started as an inpatient in hospital. It never made that large a difference to me - but some people have great results, I struggled with the weight gain I experienced (BUT, I had gone from being a very active 16 year old hockey player and athlete to nothing at the same time)... so it could have been that. It does suck that the PM dr agrees you have RSD - but it might hopefully mean that you can get better control of your pain!!

Love

Frogga xxxxxxxxxxxx

Mary, when I take it(Neurotin) on a full stomache.. this seems to knock me out at night!! LOL:D

ok...i took everything at 8.00 and it is now 9.30 and I'm wide awake. Oh well, nothing is normal for me.
Frogga, I know what you mean about being active. I used to show horses in both jumping and dressage. Haven't ridden in over 3 years. at least I can still kinda take care of them. they are in my back yard..actually behind my back yard. from my door to the barn is about 20 steps. they are my reason for getting out of bed every day. Kids are married, one is at the university getting a BS in Biology, and the other is getting her masters. she is getting a MFA. Hubby can do for himself, the ones that need me are my 3 doxis, 3 cats, and 3 horses.
mary

Please keep in mind that these are very low doses, though! :hug: