Thank you all for ur support you guys deserve alot more respect from me than what I have given it’s nice to know I’m not alone even though it feels like that because most people can actually function but yes thank you all I’m not gunna beat this without ur guy’s help and if its not to much trouble can you guys suggest some questions or treatments i can ask my pain doc about I got appt on the 26th ?
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First have they ever seen or heard of (from a colleague or professor) a patient with your symptoms. Remember that they might never have.
Second try to think outside the box, if you have a diagnosis is it correct? Please do some research before you go. I recommend
https://www.ncbi.nlm.nih.gov/pubmed/
Do multiple searches, change the wording for your symptoms (pain/pressure), do all your symptoms together, do them one by one. Look up other conditions on Mayo or WebMD and look at the wording they use that describes what you are experiencing AND not experiencing.
Suggestion have you looked into Hemicranial Continua? I’ve recently received this diagnosis after visiting Mayo - Jacksonville. It’s treatable by Indomethicain.
I also learned that there is a new, non-drug treatment for various conditions (not all listed on their website) called GammaCore. It has been approved for use in the USA since my visit to Mayo a year ago.
https://gammacore.com
Good luck and don’t hesitate to try someone or somewhere else if you need to.
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All pain management centers are not created equal. There are three kinds:
Pill Mills: They try to manage pain with various medications essentially they are worthless
Treatment Centers: Usually operated by Anesthesiologists The move from “procedure to Procedure” usually various nerve blocks. This also rarely works. Fewer and Fewer nerve blocks are being covered by insurance as they simply don’t work and their effect is usually temporary/placebo. The risks of permanent damage and pain is high.
Comprhensive Multi-Disciplinary Teams: Oregon State has one of the best ones. These centers use minimal medications, occasional “procedures” but concentrate on the “brain” and training you to use your brain and your body to manage pain. Pain rehab is succesful over 80% of the time and as they add new technology (such as Gamma core, implanted stimulators etc) their success is growing. This method is only successsful when one is willing to accept there is not an “instant cure” (pill block surgery etc) because there isn’t. If there were support sites would be gone. The effect of long term pain is that it effects how the brain works. While the pain is real, the cause is NOT mechanical. Fixing how the brain perceives and reacts to stimulus is the only thing that works. In the simplest terms YOU take control rather than sitting on you hind-quarters feeling sorry for yourself and waiting for a miracle or Brilliant Physician to fix something.
In terms of support, the only way to benefit in a support group is to give support to others first. No one here has been “cured” or they wouldn’t be here. Statement like "if so and so would just find time… will get you ignored.
FWIW Seenie told you I was involved with a serious family situation. I am. my daughter in law had an intestinal embolism. because of the Gangrene, her entire small intestine and most of her large intestine was removed. Her pain is intractable, and our goal is to get her home for hospice so she can die with family, pets and the things she is familiar with.
So heres my advice to you. Don’t waste your time asking these folks what “cure” to ask your doc to do. Instead spend some time reading the various threads (you haven’t) learning how others have learned to cope. There are hundreds of ideas and strategies. Spend some time making friends here. They way you that is by understanding that these members suffer what you do, perhaps even worse. You have spent enough time sitting on the Pity Pot. I don’t mean to sound cruel, but either you have TN or TN has you. You fight or you can cower. But if look around here, you will find several THOUSAND folk who have a full and fulfilling life despite their medical condition BECAUSE they choose to and because they have Chosen to fight.
TJ
Ya well you know what ur basically saying is get used to it because it’s never going away and it’s never gunna get any better next time please try to actually help me I’m not interested in coping or making friends I only care about getting rid of the pain behind my right eye so if you don’t want to help me I mean actually helping physical problems that I’ve be waiting years and years for I’ll find it somewhere else thanks for nothing try to actually awnser the question for a change
Nope I am not saying that Its sorta like my best budy growing up. He got polio (thats how old I am) He recovered no longer has polio but now 60 years later he still can’t fully use his left arm, although it has gotten much better. Just because the cause is gone, the effects are still there.
Chronic pain creates new neuro pathways that make the pain worse and consistent/ The physical cause of your pain is lost in the noise of those new pathways.) The only way to overcome that situation is by creating new/better neuropathways which takes a lot of work and is NOT accomplished by a "procedure/med alone. OHSU is the best in the country right now except for perhaps Cleveland Clinc pain Rehab Boot Camp. UW also close to you has a good pain rehab program as does St Lukes in Spokane. The solution is out there just not what you expect it to be.
You know what though alot of other people actually have been blessed to get a diagnosis unlike urs truly and it makes me want to just tear my hair out when people say get therapy help ya that will make the physical pain go away i don’t even know if I have tn but I have stabbing pain behind my right eye and I was hoping you could not tell me the cure but give at least one helpful suggestion to get rid of the physical forget the mental but real physical problem so really I’m going to the pain doctor for nothing then is pretty the case because that’s what it’s sounding like they said you’d be the guy that could atleast try to tell me how to get rid of my pain but you haven’t and don’t tell me nothing about having a pitty party I’m just telling people how it is i haven’t been diagnosed probably never will get any better you are not in my shoes unlike me nothing helps me I already get enough of just be a man from my dad so If that’s all you got for me just don’t even bother
Justus, this is the third or fourth conversational topic you have started. Every time you’re told to do your research, don’t look for a “cure” but a way to manage, to not focus on invasive surgical options when you haven’t explored non-invasive, and to give serious consideration to stress and how it impacts your body you abandon that conversation and start a new one asking again for some sort of surgical cure for TN, which you may or may not have.
Pleas stop.
You’ve been given excellent advice from people who have been dealing with various forms of facial pain for decades. If you don’t want to listen, that’s fine. If you don’t want to learn, that’s fine. If you want spend your time in surgery, that’s fine.
What’s not fine is constant re-posting of the same question phrased differently. Please stop wasting our time with repeated posts that disregard and/or scoff and/or argue with responses.
You’ve been told repeatedly to do your research, try doing some of that before you post again.
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This is a great group but join another too. If you are on Facebook ask to join the group Trigeminal Neuralgia Warriors. They are super fast at supporting, stopping really lonely days and helping you not give up. Best wishes, J
I have trigeminal neuralgia and after years on meds that needed constant increasing whenever I broke through, I finally found Low Level Laser Therapy (LLLT) worked for me. Unfortunately it is not covered by medical insurance. Good luck, Pal…