After I have a round with the TN the pain may be some bttr but the 'hurt' is still there. I am so tired of this pain. And really nothing can b done. I see a neurosurgeon in about a wk. I expect them to tell me also that I have MS due to some of the symptoms I am also having. Weakness in muscles. My hands will jerk unvoluntarily when in certain positions. My balance is terrible. Anyone have these? And is it due to the TN or more? What is done for MS?
I have been trying different meds. Now am on Tegretol and Baclofen. I feel wiped out tho all the time. How do you all deal w this? Some have said they think the weather has a lot to do w it. I do not think it is a trigger for me. It just seems to go and come on its own no matter what I do.
I can't sleep anymore. Maybe 4/5 hrs at a time if that. And the qualtity of that sleep is awful. I have not brought this up w neurologist as I am seeing the neurosurgeon soon. Drs! I have been running in circles w al my Drs. I had seen an ENT and even had sinus surgery that was totally unnecessary. Hasn't made one bit of difference and may have even caused this TN to b worse now.
I have decided no more Drs except this neurosurgeon. For high blood pressure my Dr won't even prescribe the meds. Have to go to a heart Dr. Same with any other medical issues. They always just send me to another Dr. I have had it w DRS. NO more. No more.
Can anyone tell me how they get along when the pain is really bad? These Drs aren't really doing anything for me much at this time.
The whole processes is amazingly frustrating. I wish I could help, but at least I can tell you that you are not alone. I have ATN, and I have not been pain free for 10 months, even with all the meds I have tried (they alleviate but don't eliminate). I totally know how draining the 4-5 hours of crappy sleep and constant aching can be. I try to do as little as possible when the pain is bad. I have found that an ice pack behind my ear will sometimes give me some relief. I have heard others use hot pads the same way, but heat makes me worse. The other thing I do is provide as much distraction and other sensations as my tired mind will allow. I watch TV, Listen to music, or audio books when my tired eyes hurt. I have a soft blanket that I stroke with my hands, I light a candle to add smells, get a shoulder rub from a family member or friend. ANYTHING that adds something else for my brain to focus on. It is not great but it keeps me clinging to the edge of my personal pain pit of despair.
As far as doctors go, I have no advice but to keep trying, and don't be afraid to see different doctors in the same specialty until you find one that you can work with. I have had very few successes, but if I stop trying I will really never get help.
Good luck, and I wish you better days and helpful doctors!
Hi Moose, sorry to hear you are getting on the merry-go-round of doctors and referrals. I was lucky when I went to Enterologist thinking it was a sinus problem, he said no it’s not I have neuralgia. My dentist said definitely not my teeth, so many people have had unnecessary procedures, greedy uncaring dentists and surgeons about!
Some of your symptoms like weak muscles and balance might be due to tegretol, so try not to dwell on MS too much until tests done. Thoughts and prayers with you.
Thanks. I do think the Tegretol has not agreed w me. You can't get a Dr to retrn calls for 2 or 3 days so I jst started taking less of a dose. I felt a lot btrr yesterday but more pain. So I guess its just not agreeing w me. NOr the Trileptal. I am so frustrated. Went to see Dr AGAIN the other day for pain and no sleep. Still got nothing. Have to see a mental health dr omg. Every time I go they want to send me somewhere else. I kind of let loose on the Dr too about that. Can't get blood pressure meds unless I see heart Dr. Pain/sleep see a mental health dr. Im getting no where and fast. STill trying to deal w pain and no sleep. How do you get relief? Are all Drs like this? Will the university hosp Dr do much? I just am so tired and the sleep depravation is awful. Just feel like I am running in cirlcles. Thanks for your reply.
Thanks. I do think the Tegretol has not agreed w me. You can't get a Dr to retrn calls for 2 or 3 days so I jst started taking less of a dose. I felt a lot btrr yesterday but more pain. So I guess its just not agreeing w me. NOr the Trileptal. I am so frustrated. Went to see Dr AGAIN the other day for pain and no sleep. Still got nothing. Have to see a mental health dr omg. Every time I go they want to send me somewhere else. I kind of let loose on the Dr too about that. Can't get blood pressure meds unless I see heart Dr. Pain/sleep see a mental health dr. Im getting no where and fast. STill trying to deal w pain and no sleep. How do you get relief? Are all Drs like this? Will the university hosp Dr do much? I just am so tired and the sleep depravation is awful. Just feel like I am running in cirlcles. Thanks for your reply. I would like to add too that my ENT had NO problem getting in a sinus surgery bfore he sent me to neuro. Sometimes I think these Drs take advantage of not only patients but the insurance co too.
Hi Moose, sorry to hear you are getting on the merry-go-round of doctors and referrals. I was lucky when I went to Enterologist thinking it was a sinus problem, he said no it's not I have neuralgia. My dentist said definitely not my teeth, so many people have had unnecessary procedures, greedy uncaring dentists and surgeons about! Some of your symptoms like weak muscles and balance might be due to tegretol, so try not to dwell on MS too much until tests done. Thoughts and prayers with you. Is an enterologist the same as ENT?
