Hi everyone it’s been so long since I’ve posted on here. I saw my last neurologist at the end of January. He was my “second opinion” neurologist and considered one of the best in my city. I had a breaking point after that visit because I asked about disability to this doctor and he was quite irritated that I even asked. I left his office in tears, not because he said TN isn’t a disability, but because he told me that I need to, “get going with my life”. For almost a year I drained our savings, tried over a dozen medications, been to two neurologists and one neurosurgeon. The other neurologist I was seeing refused to treat me anymore because I didn’t want to do the gamma knife. He said there wasn’t anything else he could do for me.
So…, now I’m back with my GP to treat my TN (for now). Luckily Feb-May wasn’t horrible for attacks, but when it started happening more it was worse. I assumed I found the right combo of medication thus the “remission”.
I go see my GP tomorrow. He had me add lamictal 25mg then bumped up to 50mg after two weeks. Not feeling any relief from it. I still take neurontin 800mg 4x a day and baclofen 10mg 3x a day.
Does anyone take Dilantin and how does it work for you? Does it make you groggy?
I have also tried: tegretol (had a pretty awful reaction), trileptal, trazadone, imitrex (pills and injections), klonopin, a host of antidepressants and tramadol. This is all I can remember for now.
Asking for lidocaine cream tomorrow (not sure why I forgot about this one before).
Just trying to prepare for my visit tomorrow. My GP is willing to work with me on trying new medications.
Why r these people so ignorant? You guys have tried a lot more drug combos than me. Kismet I am wearing my lidocaine patch right now. We all seem to have a similar story. Horrible. Have u tried a nerve block yet? Helen x
I for one would not leave treatment of my TN in the hands of a GP....nothing against GP's but they do not have the experience needed to treat this disease. If you have taken dozens of medications and they are not working then maybe your second neuroligist is right in stating there is nothing else medicine wise that he can do to help you. In most cases, as was with my case, the meds become ineffective after awhile. There are other options to explore besides medication and there could be answers out there for you .In my case,. I did MVD 30 yrs ago and it changed my life. Retired a few years ago from a 35 yr high stress job never having to go on disability. Dont give in that you have to go on disability and accept this as your way of life. Find yourself a top line neurosurgeon and get all of your options. There are many many success stories
If I want to do the nerve block I’ll have to travel 3 hrs away. I was told no one does nerve blocks for TN here.
The last neurologist (the one who’s the best here) caused against MVD saying that gamma knife was the way to go. I know he’s ignorant. Alas, I can’t afford either surgery right now. Still the same crappy insurance with high deductibles/out of pocket maxium.
My other issue is it costs $60 per specialist visit vs $30 for a GP visit. The better neurologists are 2-3 hrs away. I’m trying to deal with pain better, but all the patience and optimism in the world can’t contend with TN pain sometimes.
Kismet...I hear you about the pain and its very hard to maintain optimism during those episodes, but keep battling it dont let TN define you. If you do any invasive surgery, blocks or MVD, please make sure you have it done by someone with extensive experience. They can do more damage then good . Hope that tomorrow is pain free for you . Good luck..ED
Although a neurologist “should” know more about TN, that isn’t always the case…
I’ve met a few neuros throughout my TN journey who were arrogant, uncaring, outdated and un-knowledgable in regards to TN.
So as long as your GP is willing to read up on his TN and support you as you struggle to find pain relief, that’s ok.
I’m lucky in that I have a great neuro whom I see every 3 months ( sooner if need be) but its my GP whom I see the most. Both of them work together in my care.
Don’t give up Kismet…there’s always hope, hard to see it, feel it or believe it when we’re in such pain, but it’s there…
I was on Dilantin and would try it again, no adverse side effects…I’m off of it since MVD, still on tegretol but in my case my TN was med resistant so I can’t comment on it otherwise.
Worth a try though.
I pray relief is headed your way soon one way or another!
Thinking of you Kismet, I missed you
Many folk here are saying good stuff about the patches. If my TN pain becomes unmanaged again I will definately ask for them.
Listen young lady…:), from this old guy who’s clients were docs and attorneys for almost 30 years…this is my generic statement for you… but do not, even for a moment take his rudeness personally. Easy to say right…but many are just clinical from the operating room to patient consulting.
I wanted to bolster you ( a bit late) but still share about who they are and the unkindly things they sometimes say, without even understand what they have said.
It is just one of those character building moments that we all learn from…good or bad, right?!
I appreciate everyone’s encouraging words and that’s why I am happy we all have livingwithtn.org. This site has seen me through some of my darkest hours.
I tend to deal with my pain better now than when I was first diagnosed. I know what to expect, but just the intensity sometimes is beyond any comprehension.
Sadly I know most of us have experienced ignorant, arrogant and uncompassionate medical professionals; even friends/family/spouses. Something that isn’t tangible is hard to understand as “painful”.
Since my insurance doesn’t cover mental health, besides addiction, I’ve signed up to be seen at our local university by graduate students. I’m wait listed, but have already done all my assessments including one for chronic pain. I apparently have a “lower than average” tolerance for pain, but a “higher than average” outlook on my life as someone who has a chronic pain condition.
I often check for trials for TN and pray for advancements in our condition.
