woo hoo! finally got some meds!!!!!!! - Reflex Sympathetic Dystrophy Message Board

Nakona · 10-28-2003, 01:02 PM

After fighting the hand specialist for the past 3 plus weeks over pain meds, I decided to stop. I went to my primary care doctor today and he was ticked!!!!

He gave me oxycodone at 5 mg to take 1 or 2 every four hours. And neurontin to start today. Still waiting for it to be delivered. I took 2 of the oxycodones and I feel so much better!!!! Instead of feeling like my hand is IN the fire, it feels like its just outside it, still too close to the fire but bearable. Maybe a level of 3-4 now.

Thank you Lord!!!!

And thank you all for the prayers and well wishes. I asked about the morphine, but he wants to try the oxycodone, neurontin and amitryptiline together to see if we can get it under control. Hopefully that will be the case.

Either way, I know that a lot of you have used or are still using neurontin. I'd really appreciate all the info I can get. I went to rxlist.com and it says you should use a medalert bracelet to let medical personnel know you are taking it and that you should ok ANY over the counter meds with pharmacist prior to taking them.

Why is that?

It sounds kind of spooky to me. All those warnings about it. I just want to know if there is anything else I should know. I'd rather hear it from you guys than a pharmacist's book. What side effects should I watch out for? Does it make you drowsy enough that taking the pain meds will turn me into a zombie? I got 3 kids, no time to fry my brain.

Anyway, thanks again for all your wonderful concern. Any info on neurontin or even the oxycodone would help. Especially your own experiences.

Hope this finds everyone having a good day.
I think I'm gonna take a well deserved NAP!!!!!

All the sleepless nights caught up to me long ago. Maybe I can finally get some rest now. Not sure how long this will last, but its nice even if its just for a moment. Knowing my luck, the next dose I take won't do anything. We shall see.

------------------
Life is not measured by the number of breaths we take, but by the moments that take our breath away. ---Unknown
Nakona

ejames4773 · 10-28-2003, 02:34 PM

Hi Nakona....glad to hear that you had some pain relief. David has been on Neurontin for three years now, and at first he was a little spaced out, but within a week that disappeared. He has 3,200 mgs daily which is the highest dose they seem to be giving here in the UK at the moment, although I was told by the Pain Consultant that there are trials with over 4,000 mgs.
Regarding your question about checking over the counter meds, it's important with certain drugs not to use them in conjunction with others, so I think it's very wise to be careful.
But getting back to your good news again, so pleased that life may be a little easier for you.

Hugs, Edna

brighteyes_007 · 10-28-2003, 03:26 PM

I am glad that you have found some relief!!

I was taking Neurotin 2400 mg for 8 months and I was so spacey. My speech was slurred. My word bank was so slow I thought I had Alzeihmers!.. I knew the word should be there but would take soooo long to pop out. I also was very very tired from the medication.

My last visit to the neurologist we decided to take me off the Neurotin and try just the Duragesic patches because the first time I tried them I literally layed on the couch for 10 days before I said ENOUGH>!!

The hope is that the patches will take care of the pain and I still will have enough mind left to function. If the Duragesic patches still make me totally out of it then I will go back to the Percocet(0xycodene) every 4 hours at least those I can regulate if I HAVE to drive I can get off of them quickly and handle the pain.

Hope all works for you and you have continued relief.

Hopes and prayers,

Brighteyes

sharon1030 · 10-28-2003, 07:19 PM

Hi Nakona,

Yay for you!!! I'm so glad something is finally helping your pain. About the medicalert bracelet and neurontin...this is just a thought but maybe, they tell you that because neurontin is an anti-seizure med. Maybe, they're thinking that if someone's taking neurontin, they could have a seizure disorder and they would need to wear a medicalert for that???? Just a thought. Congrats.

Sharon

AngeInBoston · 10-28-2003, 09:10 PM

Hi Nakona

Man oh man I just lost the longest reply to this because I kicked out my power cord! Now I don't have much time!

Short story...I'm glad the Percocets are helping your pain, don't be afraid to tell them if you want/need more or stronger pain meds! They usually will not offer until you tell them you need them (don't just ask!).

Joey did not tolerate Elavil (Amiltryptiline) well at all, it seems to be the consensus around here, but they always seem to try people out on it first. It made him dizzy, he almost fainted at work a few times and broke down crying at work too which was really off the wall for him. So we stopped that and started Prozac and Valium, but now no one wants him on the Valium so he's stopped, and the new Psych Dr is going to try another Anti-Depressant, maybe Zoloft...he needs one that will stimulate his appetite since he's lost over 30 lbs!

Neurontin I absolutely HATE, because it made Joey into a total Zombie....they kept raising his levels, which may have been necessary if he had the symptom of unbearable electrical zaps on the outside skin where you can't stand even wind blowing on it....but he doesn't...he only had spasms that woke him up screaming in the middle of the night, and the lowest dose helped that....

Two weeks ago they raised his Neurontin to 3200 mg/day, along with almost tripling his Duragesic Fentanyl patches to 200mg/3days (Very stron Opiate), and doubling his Dilaudid (another strong opiate) and making it 2/4hrs instead of 'as needed', and it all combined to make him practically incoherent! I was so scared, I got him off of almost everything...now he's down to 600mg of Neurontin, no Valium or Dilaudid, 50mg Duragesic, and 3 Prozacs until tomorrow, plus today he got a Clonadine Block, and a new prescription for 10/325 Percocets which are basically double what yours are without the extra Tylenol which can damage your liver. He's doing MUCH MUCH better!

I recommend you get a notebook and start recording exactly how you feel on what meds, along with every phone call and conversation....it will help you later!

Everyone needs their own 'Custom Mix' of meds and treatments, everyone has different side effects, so you just have to find what fits you well, and even then that will change.....

Good luck!

~Ange~

[This message has been edited by AngeInBoston (edited 10-28-2003).]