I have a good neurosurgeon recommended by the Facial Pain Association (Dr. Julian Wu) but I need a neurologist and/or pain manager. He does not do medical management and I only got a generic neurologist here that is “OK” not great. No one I see seems to know a good one, I’ve asked everyone for a neurologist or pain management person.
The pain management guy everyone knows does not treat TN - can you believe that???
I was hoping maybe I could see a great person virtually because I really cannot travel outside of new England. It’s almost impossible for me to leave the state, honestly.
Unfortunately, it doesn’t seem I’m a surgical candidate of any kind right now. Thanks in advance!
Yes, I can believe it.
I’ve attended a pain management clinic myself, without much joy. It seemed to me if I had a ‘known injury’ such as muscular/skeletal pain there may have been options, but because TN can be so nondescript, the cause/effect are also be nondescript. If a cause/effect can be identified then a surgical procedure could have been an option but It was explained to me that surgery could actually exacerbate the pain.
Some neurologists swear by Botox as a treatment for TN, but I’ve tried that and it wasn’t my ‘key’. In fact the neurologist who administered it got rather anti indeed when it didn’t have the desired effect, blaming me for my ongoing pain, like I choose to be in agony. I’m not sure what a ‘good’ neurologist is, in the years I’ve been on this neuro journey I’m yet to find a ‘good’ one.
The expert neurosurgeon, and my research, said that Botox was unlikely to work and nerve blocks don’t last long. So that leaves us with… medications? I need a neurologist who knows more for that, because I’m almost maxed out on carbamazepine and if I take more Lyrica, I am too drunk to function. Yesterday I had a delightful combination of too drunk in the morning and in agony at night (I take half the dose in the morning).
My wife has an excellent Neurologist; the med protocal she has her on has kept her pain free for a number of years now. I don’t know if she takes virtual patients, but you can try. Her name is Dr Farzaneh Khezri. I don’t have her contact information, you may need to do some online research. She is based in Portland, OR.
Hey Recipe,
Yea, I’ve been on that medication roundabout before. They’ve trialled me on a bit of everything. I was up, I was down and I was sideways. Like you, what works for me makes me high as a kite and I can’t function or so low I just want to sleep. And Lyrica… …just YUCK!!! I can have brain fog without adding a med to the mix.
The idea with Botox is that it will release tension in the neck, shoulders and face. But when the cause of the pain is not tension related, then what? No ones been able to answer that question for me. If you find a decent neuro, grab a hold and don’t let go. A good one can be hard to find.
I have a neurologist who is trying to help but really doesn’t know how.
One thing I really want is that ER treatment card about the Dilantin signed by one of my doctors. They don’t want to and my neurologist isn’t familiar with that treatment!
Me too, I had plenty of brain fog before! Right now, fingers crossed, I seem to be managing on 75mg Lyrica 3 times daily. I am happy I haven’t changed my carbamazepine dose in a while, since I’m so close to the max.
Good to know on the Botox. I really don’t think it’s tension related. It’s not like I did better on a muscle relaxant, on a heating pad, in the Jacuzzi…
I tried Lyrica for a month (50mg 2 x a day for a month with no relief. I was afraid to go higher because I was afraid if the side effects but am in so much pain I have no choice. I have ATN. I found relief with Nortriptyline but I had a cardiac problem in Dec. and my cardiologist said I could not take it any more. I am coming off gabapentin because it is not helping and I am going on 50mg Lyrica 3x a day to start. Praying it helps. Hope you find the help you need and something to ease your pain.
Harriet
I was bold, unusual for me, and went right to 100mg once a day. Then eventually twice a day… I got side effects there. I ended up on 75mg 3 times daily and generally am not having side effects. The pain relief is not complete, but I will take it. Gabapentin didn’t work for me, either.
I have heart problems as well. I pray you do well on your new meds or at least find something that works!
The only suggestion I can think of is to go to a large teaching hospital and find out who treats TN. I see a neurologist who is a migraine specialist at Washington University in St Louis. She was treating me for chronic intractable migraine and then I got TN2. I’ve received Botox every 11 weeks for over three years with 90% relief from all migraine symptoms AND from facial pain. Botox is a neurotransmitter blocker and may act on the the pain receptors in the tn nerves. It is given in the migraine pattern with a few additional injections near the area that TN is worst, and right side of neck for chronic stiffness.
It does wear off slightly after 8-9 weeks which is why I said 90%.
Hope you found someone who can help.
Yeah, that’s what I tried. In Boston and RI. Brown, Harvard, etc.
Good to know about Botox! I hadn’t heard anything very encouraging about it before. I also have migraines on the same side. I might just look for a migraine specialist next - thanks!