Ah...so much information that my head is spinning...

I have my attorney working towards getting work comp to approve me seeing Timothy Lubenow at Rush. My fingers are crossed, and I am praying that he is successful, but only time will tell. I really sense that my current doctors are just way out of their comfort zones when it comes to CRPS and seeing someone more specialized with it will be a giant relief. Last visit my current pain doctor even said that she just didn't know what to do and was just percribing stuff for generalized pain.

The nurse from my doctor's office called back (finally) and told be to stop taking the Cymbalta. Not sure what the doctor wants me to do beyond just stopping the Cymbalta.

I think my body may be going through some shock with just coming off the Tramadol suddenly...possibly the Lyrica too since that didn't get tapered off either and I was just told to stop taking it and take the Cymbalta instead. At this point I almost wonder if I should just go off everything and start from scratch since I am just not getting any sort of decent relief from any of it. Even the Lyrica which used to help when I was first put on it (last year) barely was making a dent now (though it DID make a difference that I could notice even if it wasn't much).

Guess I'll find out soon enough and in the mean time...well...I'll survive...

Too strange that it takes an attorney to get an appointment with a doctor. But then the whole CRPS experience is strange as well. (You too can have an illness at the cutting edge of neuroscience and immunology.) And if you'll excuse a digression on strangeness, you might appreciate the video and/or reading an article that appeared in the NY Times a few days ago, "Venezuela's Prison Paradise: On the outside, the San Antonio prison on Margarita Island looks like any other Venezuelan penitentiary. But venture inside and you'll see how far the rabbit hole goes. . . ." Video: http://video.nytimes.com/video/2011/...l?ref=americas Article: http://www.nytimes.com/2011/06/04/wo...s/04venez.html

Silliness aside, I would strongly suggest that you NOT go off Lyrica without talking to your doctor(s) first, however inept s/he/they may be.

Once upon a time, I had been taking Trileptal (Oxcarbazepine, an anticonvulsant that works by decreasing abnormal electrical activity in the brain). It was a great drug but it can have a nasty side-effect of causing serum sodium levels to plummet without warning, leading to irreversible nerve damage. So after 18 months and frequent if uneventful blood tests, just before I was going into the hospital in Philadelphia for a week-long Lidocaine infusion - so it could fail on the record and my insurance company would then let me move onto ketamine - I was being worked up for an apparently unrelated blood condition at the Mayo Clinic, which Dr. Schwartzman wanted done before I went into his hospital. Out of nowhere, my neurologist called me from LA: the blood work drawn a week earlier was back, sodium levels had dropped 50% in 6 weeks, and I was to discontinued Trileptal at once. Except that no one ramped me up on a replacement med where I was moving about on the fly. By the time I was being wheeled onto the plane to Philadelphia, a week or so later, I was having scalp cramps!

I used to say that someone hadn't lived until they tried scalp cramps, but I'm not sure it's your thing.

Mike

Yeah...no thanks. If that's what it takes to 'live' then count me out...lol!

But seriously...it was the doctor who took me off the Lyrica in favor of the Cymbalta (which clearly didn't work out). I don't have any more refills on the Lyrica either so it's not like I can go back on it now. Which may be causing some of the other problems, increase in pain, etc. But things are so bad these days that I don't know what are symptoms of what's wrong with me, what are side effects from medications, what are side effects from withdrawal from the medications...it's so confused now that I'm not really shocked that the doctors can't sort it out either. I just wish someone would really take the reins and hopefully that will come soon.

And...yeah...I hate that I even have to have an attorney to be an advocate for me when it comes to work comp...I wish they would just do what they are supposed to and not play games...but then again there are a lot of things I wish that just aren't a reality and I have to deal with that is rather than what isn't.

In more positive news, my primary care doctor ordered at home physical therapy and for the first time I am feeling optimistic about a treatment. I'm still worried about how far I can push with the pain as bad as it is...but then again it's so bad already that what's a little more in a good cause (the good cause being working towards getting me walking again...even a little). So I am pumped about that. Would feel better if we were able to get the pain even moderately under control...but I need to just keep working on that as a seperate issue and focus on what I can control. And what I can control is going at this physical therapy with a focused and determined attitude, do my exercises every day, and maybe it will even help with the pain a little. You know...trying to get out of the cycle of not using it, the pain gets worse, I use it less, so the pain gets even worse...I'm thinking long term and that the pain I feel now after doing the physical therapy is going to get me in a better place in the future.

Wow... sudden d/c of Trileptal? That can cause seizures!

There is a poster here who was suddenly d/c'd from Tegretol (similar drug).

You might want to look at his experience:
http://neurotalk.psychcentral.com/thread112178.html

Hyponatremia, can be additive with opiates too. Taking both together may be an issue for some. Even SSRI's are now known to cause hyponatremia in some patients.

Interesting but odd thread there.

From what I understand, in light of the results of my blood work, gradually discontinuing Trileptal would have put me at greater actual risk than going cold turkey. I only regret that my local neurologist didn't suggested at the time that one of my Mayo Clinic doctors write me script for Neurontin by way of replacement, even if it had to be phased in gradually.

Mike