I was diagnosed with TN 20 years ago. It’s been so tough but thanks to my family/friends and great doctors I’ve been through all the treatments and meds and managed ok - my life has been good.
But in the past few years, I’ve been sent to new specialists who cut my meds down to almost nothing. I don’t agree with the changes. My work is falling apart, friends are disappearing. I have so many appointments. I am usually pretty positive … but I feel like just refusing to go anymore.
Praying things get better for you real soon !
Hey mac,
I’m in Australia, but the U.S. opiate crisis has had an impact on many of us, even here in Oz.
Opiates here are already heavily regulated and our Pharmaceutical Benefits Scheme keeps all medications and the users well monitored, so the ‘fear campaign’ that has erupted here is more a case of “Well, look at the U.S., We’ll put a stop to that before it begins”.
Now, admittedly, medication misuse is a genuine issue and if there is an option to use non-opiate based medications, it’s highly recommended BUT when many of us have been through the processes of trial and error to find suitable treatments and have founds these meds to be our only option, then what? They take it away?? That’s inhumane. Medicos take an oath “To do no harm”. You say you’ve been sent to new specialists, can you return to your former specialists? Could they help?
My PCP has questioned my use of meds, but my specialists have told me ‘You use whatever works for you’ and that’s exactly what I do. I have a few ‘tools’ in my kit. Some low dose, some ‘knock you off your feet’ type and depending on my needs on that day, at that time, that’s what I use. I’ve told the medicos if they have another ‘tool’ I can use, that works, I’ll genuinely trial it, but if it doesn’t work for me, I’ll revert back to what does work.
That ‘Pain Monster’ isn’t managed the same way for everybody and I wish the medical fraternity would wake up to this fact. Presently, here they encourage/recommend a varied dose of tricyclic antidepressants and for some they work great, but for others, not so great. I’m in the “not so great” team, so to then restrict my only management tool is just cruel.
Just know, you’re not the only one trying to deal with and manage all of this. We live it too.
Merl from the Modsupport Team
It has been almost 15 years for me now with TN The pain in my eye is excruciating the burning the pain is running down the side of my face, and the fact that I can hardly eat anything at all because my jaw and my teeth are so sore. I have gone to a doctor for my eye and he has tried many many things. They have tried this new drug called Octivate It is a medication you put in your eye every two hours six times a day I have gone through the first box of activate
I would like to share with you my experience with this drug. I never give up. Hope, I never stop trying. It’s very hard but you must keep trying. If anything helps me. I promise I will share. Good luck. Everyone try to stay well.
Thanks very much for the reply - this sums up some of my problems. I was doing well on my previous regimen. The doctor’s office insisted on a review by pain management and since then I have been continually switched to new meds, in so much pain, sleeping to avoid pain, missing family events, out of medications, dealing with insurance issues. It all seems totally irresponsible by the standards my previous doctors maintained, but I have moved for work so they can provide pretty limited assistance.
Additionally, a new neurologist I was sent to raised a concern that opioids may be worsening my pain - I cannot see it, no info was provided, no discussion… seems like they made up their mind before meeting me. I am willing to discuss to make a plan to try other options and to explore if that’s the case, but no one is speaking to me. Patients don’t really have a voice in their care anymore.
I’m not sure how I can keep going if this comes to pass - I have a job, a family, hobbies and with the changes I’m losing my grip on all of it. I’m tough, but pretty scared about the future.
Sounds promising - hope this new drug helps you. Sounds like you’re tough and I am too. We are survivors - hoping for the best for you.
I too was sent to the ‘Pain Clinic’ and I went through all of their suggested management tools without success. I was trialled on all sorts of medications. It was a bit of a joke ‘I take so many meds I rattle like a pill bottle’ I was up, I was down, I was sideways and some of those meds just mess with the mind. If a dr recommended a treatment option, I trialled it and I documented it all. I found that if I rejected an option the medicos would often hold it against me, listing me as ‘A non-compliant patient’. “Well, you rejected treatment ‘X’ and that could be your key…” so I trialled them all. They could no longer say I wasn’t participating or was non-compliant. Through all of this it was deemed that I do need opiates to manage.
Ahh, now I understand.
Changing Dr’s is NEVER a straight forward process. Many of them want you to ‘re-invent the wheel’ and go through all of the same processes to arrive at the same destination you are already at. I’ve been put on that merry-go-round many times before. I’d get referred to a differing specialist, who would request all the same scans repeated, all the same blood tests repeated, obtaining the exact same results. So, here’s what I do:
I get copies of EVERYTHING, every scan, every test, every report. I want a copy and I have 2 files, one digital and one hardcopy of everything. Then when Dr ‘X’ recommends a repeat scan I explain that I’ve had that scan previously and here’s the report. This has helped in 2 ways, it has reduced the duplication (and cost) of tests and scans, but it also shows the medicos that I’m being proactive in my own care. If the ‘new’ specialist can justify why a repeat may be needed, then OK, but it needs to be justified. And I do not just take their ‘justification’ or reasoning as being gospel either. I take that information, their reasoning and investigate it. Why is that needed? What is the benefit/outcomes? What are the negatives?
When my journey started I played along with the ‘The Dr is always right’ paradigm, but they proved that they weren’t always right and some of their assessments were outright judgemental rather than professional. Now, I have become a strong self-advocate and I am firm in my approach. I don’t go to dr’s because I like them. I’ve seen enough of medicos to last me 3 lifetimes. If I’m seeing them, I have a genuine need and I will NOT be dismissed out of hand. It lights my fuse 
everytime when they try to minimise my symptoms, my tongue can turn into a lethal weapon 
We’re not in this position by choice and they get that message loud and clear. I’m not here to play their power games and I won’t. This is about my health, not their egos.
Merl from the Modsupport Team
Mac, you’ve gotten some good input from Mod Support. Sometimes…other options like surgical procedures work; sometimes they don’t. My TN too started over 20 years agon in 1998. I was given Tegritol. It worked very well but over time I had to up the dosage…and that I read and was told is typical. I could see that over time where this was headed. Fortunately a year later I moved from the small town I was in to the Birmingham, AL area. I got under a neurologist here and she recommended the Gamma Knife. I went for it. It worked very well for me. Others it does not work. I was totally pain free for 9 years with no meds. Then TN came back with a vengeance. My neurosurgeon immediately recommended the new version called Cyber Knife. I took it. The effects were not immediate. My neurologist had me on Trileptal, Amitriptylene, Lyrica and 1 other I cant recall. Over time I began to have less confidence in my neurologist but I still had a lot of faith in the neuro surgeon. I decided to go to another neurologist and get a 2nd opinion. She sat square in front of me and listened intently to my story from beginning to end. She said I want to try to get you off some of these meds. I was terrified to do that but I went with what she said. Over several months I slowly decreased the dosage of one med. To my surprise I did not feel any increase in pain. Then I was off that one. Then I did the same with one of the other meds. Same result, no increase in pain. Eventually, I was down to just the Lyrica…3 capsules/day. On my own I have reduced that to 2 Lyrica / day. The Cyber Knife did wonders for me. Its now 14 years since the Cyber Knife treatment. I still get a little twinge occasionally, but no big deal. No more of that lightning like stabbing pain that consumed my life. Thats gone. What little I have left is mostly controlled by the Lyrica (I think). The Lyrica has no negative affect on me; but it can some people. I had a friend put on it and he had suicidal thoughts till he got off of it. Thats one side affect that “can” happen. It didn’t with me. The Cyber Knife , to me, was a big game changer. To some, its not. One thing though that I can highly recommend. I don’t know where you live but if you are in the US get under the care of a neuro in the bigger cities. They have a better grasp on TN and in my opinion are much better qualified. Bigger cities; bigger medical centers. Research a neurologist’s ratings. The more glowing ratings, the better. You can do this through online ratings websites. Blue Cross offers that, and healthgrades.com , and ratemds.com. For you the important thing is how much experience they’ve had with TN. That is very important. Same goes with neurologists. Some go for the surgical procedure MVD , micro vascular decompression. Some don’t . My neurosurgeon did not recommend it for me. He was emphatic about that because the Gamma Kife and Cyber Knife are not an invasive treatment — no incision. No brain surgery. It worked for me and he was right. Others have good results with the MVD. And, as you can read on here; some don’t. If you can get a med treatment that works you won’t need surgery. In my case, I was so terrified of it getting worse I went with what the neurosurgeon recommended. If I died, so be it. That was my feelings at the time. But here I am at 77, 26 years after diagnosis, and functioning just like nothing ever happened. Summary: Neurologist and Neurosurgeons in the bigger medical centers with lots of years experience with TN. Between those two make a sound judgment with much prayer and reasoning it out.
Thanks, this is good advice. I’ve had some really good, research university docs in the past, and I followed their advice. Now I’m just having trouble finding that after some location/insurance changes - still trying. I also take Lyrica, it’s been very good for me, too. Had trouble with many other things. Thanks for sharing your experience.