What do you do in that situation? I had a terrible experience with the physician assistant at the pain specialist a few weeks ago, then she wrote in my notes that I had developed a dependency for opiates, so now the neurologist(who referred me for MVD last year) who was giving them to me said no more after reading her notes.
Then he said he'd never come across anyone in my situation before in all his experience (pain with no cause), and he wasn't comfortable treating me anymore, and said that's why he referred me to the pain clinic.
So my falling out with the PA really set me backward, I can't believe it. I don't have a future follow up with the pain clinic or my neurologist. I'm going to try Swedish but I'm wondering what happens if I run into the same thing......now it's in my record.
Can you get your general practioner involved? Bring a referral from him?
I feel your frustration. Please consider the source this individual is not an expert in addiction medicine,neurology ,or pain management. Next time, just be prepared to educate,and advocate for yourself. This takes education and some extra energy. I know this feedback dose not provide comfort but it gives some context to your next visit
Can you get to the neurosurgeon or someone else at the university who did your surgery last year? Surely it can not be said that you have unexplained pain. Really? It can be said that you have a failed MVD and the pain continues or is increasing.
Did the PA have all your information?
Hey bellarke, I've tracked down the 2 threads I've posted here that pretty much explain my entire experience.
This is what I posted after my initial appointment with the assistant, before I knew she wrote in my notes I'm a druggy.
This is from Jan 2 2014 after my first appointment with the pain clinic: http://www.livingwithtn.org/forum/topics/pain-specialist?commentId=...
Too frustrating for words. The PA is conducting tough love on you for pain management without knowing what the source of your pain is. This is unacceptable. I think you need to write a letter and send with your paperwork.
I looked up a paragraph from page 44 in a text book I bought that came out 2011 by Peter J. Jannetta title Trigeminal Neuralgia:
“…if the constant severe pain of TN has caused a breakdown in the patient’s normal coping mechanisms…It is important…to clarify with family the premorbid status of the individual before pain caused ego decompensation. No matter how strong a person’s ego, it ultimately begins to crumble, partly, I fear, because everyone in her environment begins to suspect she is “crazy”. The fact that many of these patients have only a modest response to the usual anti-TN drugs but are relieved somewhat by narcotics is only further reason for failure of emotional well- being.”
What he is saying here is that obviously those who are the experts know that something like oxy works for some people with TN. He is also saying that you need to get personal reports from people about what you were like before you got struck (and stuck, dammit) with this vicious disease. Also he is saying that it is the course of things that people to crumble under this.
I take tramadol every day at about 12:30. It gives me a kind of strength to go on working through the afternoon. No tramadol, I just cave. It doesn’t work any other time. I’m not sure it even works on the pain so much as it gives my system a boost, and it boosts the gabapentin for the afternoon. Late in the day I am a lost cause but at least I got something done.
I also strongly recommend you try to see Dr. Burchiel in Oregon. Write to him personally with your files.
I don’t know what you do in the meantime except go back to your neurologist with the reference I gave you in the Jannetta book. (Note: this is not the Strike Back book, it is a recent medical text book published by the Oxford University press).
I’m so sorry you’re going through all this. We get this disease and then we have to become medical sleuths and bureaucrats. It’s such hard work.
Thanks Bellalarke, right now I'm taking 150mg nortriptyline, 150mg effexor and 150mg wellbutrin to stop smoking, which I'm going to go back to cymbalta in place of welbutrin when that's done.
I was taking 120mg cymbalta, then switched to 300mg effexor, but it made me way too tired and it seems like the cymbalta gave me energy that counteracted the ones making me tired.
I called Dr Gwinn from Swedish who did TL's PNS unit and they said it can take up to a month to my records from UW and my neurologist, then 2-3 weeks to get in with the doctor for a consultation.
If that doesn't go anywhere then I really dunno what to do.
Do you have enough oxy to last until you can possibly get in to Dr. Gwinn?
All of the meds work so different with all of our own brain chemistries. I can’t take cymbalta, too much serotonin for me.
I’m still taking 3,600 mg of gabapentin daily. I’ve tried to add some baclofen but it just makes me feel too leaden and like my brain is carbonated. It took so long before I adjusted to the gabapentin. I don’t want to go through that again. I live alone and need to drive.
Did you give up on gabapentin ?
I wish you the best with quitting smoking. I was a very light smoker in my twenties and early thirties off and on. Then about eight years ago I started having one or two at night outside under the stars and just loved that little habit- but I gave that up as well about 18 months ago when I realized that it was only making my pain worse. Miss it though, especially now that the warm weather is back. So, I understand how hard it is. One day at a time.
I think it doesn’t help so much to wonder what will happen if you don’t get in to Dr. Gwinn. Let that be the thing that keeps you going for now. I don’t know if it would hurry things along to show up in Emergency. It seems sometimes that can do the trick.
(unless you move to Canada! Good treatment in Vancouver but it also takes forever)
I stopped taking the oxy cold turkey yesterday...I don't think 2x 20mg/day is that much. I've just felt tired and weak/fatigued but made it through the work day.
Cymbalta is much worse to come off of, it was miserable the few times I've run out cold turkey.
Gabapentin was terrible for me.....it only worked for 3 days then petered out. It also made me a vegetable, just no initiative to do anything. I went up to 2700mg/day
Oxcarbazapine didn't do much either. Only ones that seem to work are the anti depressants.
I'd quit smoking for 3 years before the TN started, I started smoking after I had TN.
I think its a good idea to bring someone with you to your appointments, too. They can stick up for you… how you used to be and how you are now. Just like Bellalarke said. Good luck Shindig. Crying always worked for me and of course saying what am I supposed to do??? Live with this pain??? Got a call from the doctor after that---- wasn’t quite the same situation as yours…but it got results. :-/
Wow… Keep us posted… You’ve had a tough road here… I know you’ve tried so many things!
Take a deep breath and put your boxing gloves on for another round
Of fighting the system!
I was mistaken about oxycontin being easier than cymbalta to get off. The past two nights after stopping I've been unable to sleep and completely soaking wet like never before, drenched in sweat. This morning I got up at 5am to take a half a percocet because I had the worst headache that wouldn't let up.
My gf has been coming with me to the first visit for each new doctor, but not the ones after that. She's better at reading the doctors than I am, she knew right away that my first neuro was a piece of shit.
Oh boy, didn’t think it was going to be fun when it caught up to you. Another 36 hours or so and it might be better but I guess the Percocet will interfere with the process. Keep trying.
Can your gf keep coming to all your appointments? Sometimes there is a shift in tone, even from the good ones, when they know the jig is up and a certain therapy or procedure is no longer going to work or will be an option. It helps when the other person witnesses this and you just don’t leave later wondering if you imagined or missed something. ( I didn’t take a friend my first few visits with the neurologist because I was trying to protect people from hearing how badly I was suffering.) But I know you gf has been there with you through all this, surgery, etc. still, what it comes down to is we always need someone there.
Have you thought about joining a meditation group?
Not necessarily meditation but I'm considering an upper cervical chiropractor. I have 1 meditation I know of that I did a lot as a kid.Even if I stayed up 2 hours late doing it on a school night I felt energetic and refreshed the next morning. In 2nd grade we had some lady come in and taught us one meditation, and it always stuck with me.
Yeah my gf can come to my appointments. She's way sharper/better than me at just about everything. So can fill in what I miss.
Well certainly give the upper cervical chiropractor a shot.
The thing about the meditation you know is that it is entirely under your control and so the outcome is all yours. These kinds of practices make a difference in my life. Not the difference between heaven and hell, but it’s like some of the hell backs off- and that is energizing. Let me know if you give it a shot.
Don't let this jokers who call themselves doctors break u. Our actions are justified, we did not ask to be sick, so, what I usually do, I lie lie and lie again. Manipulate if u need to. Bend them to ur will.
Marina - I don’t think that attitude is helpful. Those who lie, lie, lie and manipulate make it all the harder for those who do not.
Don’t let this jokers who call themselves doctors break u. Our actions are justified, we did not ask to be sick, so, what I usually do, I lie lie and lie again. Manipulate if u need to. Bend them to ur will.
Well, I am sorry to tell u this, but this is the only attitude that may help. I saw a neurologist the other day, so this idiot has good recommendations and all, so he is listening my heart and says it sounds good, and I know it does not. I have heart problems, so that kind of peace of shit doctors we dealing with. Doctors who do not care about us, we are lucky if we have families and friends but that is it. Life is not fare and doctors do lie, insurance companies lie, so u wanna be honest and do everything by the rule, well good luck.