Unfortunately, I don't have a very good relationship with my Primary Care doctor, who also is in charge of my Pain Management. She's not abusive, and she seems to want to help in her own way. Unfortunately, her way involves me dropping all pain medication in exchange for physical exercise, which will somehow release enough endorphines to relieve pain all day, every day. I know that physical activity helps to relieve pain, but I have to be very careful with what I do & how much I do, otherwise I end up experiencing intense pain for at least an hour, or even the rest of the day.

Thankfully, I know I'm not the only one who thinks I'm not being treated correctly. When told of my treatment history up here, the doctors down in Seattle were shocked & couldn't understand why the Alaska doctors were basically shooting in the dark with their treatment plan. At least I know I'm not just crazy.

If anyone has suggestions on how to talk to your doctors when they aren't inclined to listen to you, I'd appreciate any tips. Would also appreciate any tips on what a person can do to relieve pain when it happens.

Maybe another doctor would be more helpful. I do know one does not get to pick and choose doctors at will and its more who is covered or in net work on your insurance ...if you are luck to have some or you are left with the one thats nearest etc. I found for me that Writing things down on paper and bringing them to doc apts and giving to the doctor was very helpful . it is the best way to have things on record and in your file with each of your doctors. I would write my questions why isnt exercise helping lessen the pain as your doc suggests... my "wonders" I wonder if this med would help more... My worries . i would sometimes go to my appointments with 4 or 5 pages of stuff . a copy for me and one to give my doc . the doc should put this in your file they have . it will give more time for the Doctor to read over and take in things . you can also print things off your comp or web sites to show your doctor. I did this with another issue unrelated to t.n. and the gastro doc took out his phone went to the website and promptly started me on the med suggested and I am doing good. Yes be careful with exercise because it changes the blood flow and that messes with the pain monster. I am gonna read some posts and respond to the pain relief question after . hope your having a relaxing night. Peace
BMW

Hi Itzagi,

I agree with BMW, write everything down and give your Dr a copy. But I would suggest keeping it to short, snappy, to the point Bullet Marks. That way you can run through your concerns together efficiently and your own words are set down in your Notes.

However, this doesn't always work. I did exactly this with my last idiot Neuro and got nothing answered - not even the most basic 'what is causing my compressed spinal cord, as shown on my MRI?' There is no getting around ignorant, but few Drs are SO bad that they will not work with you to your benefit.

Dave.

No steroids thank goodness. I don't do well on those. I've been taking Advil instead, but only when really necessary.

My pain started after a root canal. I had zapping pains in my lower teeth and horrific jaw pain. Nobody could figure out what was wrong. I saw my dentist who did a repeat root canal, an endodontist who said the root canal went great, and two general physicians. The second doctor finally gave the TN diagnosis.

I had never heard of it before either. As a nurse myself I finally started researching it.

I had the pains for 14 months before surgery....ugh!! That whole time I was on Norco for pain. Luckily I'm off of it with zero problems. I was scared about withdrawal symptoms.

I'm feeling pretty good 6 weeks post op. This site has helped tremendously as well

I'll keep posting as my progress (hopefully) continues to go well!!

Thank you so much for your kind words and encouragement! I'm taking it one day at a time and hope to continue to heal. I will keep you posted for sure!!

I'm happy to report yesterday was my last dose of Baclofen. I'm keeping my fingers crossed that I won't need it anymore. Next step is to get off my gabapentin and trileptal. I have decided however to wait to try to decrease any more meds until after my daughter's wedding shower. I don't want to possibly be in pain that day.

I seem to be doing pretty well. Other than the jaw issue. My husband made hamburgers on the grill the other night and it was very difficult to eat. Face numbness continues and I have realized I have paresthesia. I finally figured out what the "pins and needles" feeling was. Occasional teeth twinges, but nothing bad.

I'm still keeping the faith that the numbness will go away in time. My doc has said that when I see him at my 3 month follow up I will be amazed how much better I feel, but I'm putting up in the big guy upstairs hands. I have finally come to the realization that whatever will be will be and I can't keep worrying about it. I'm basically pain free after 7 weeks and I shouldn't be complaining.

To all my fellow TN sufferers I wish you pain free days and the hope that somewhere down the line you will feel as good as I do!! God bless

Hi Tracy,

So glad you are doing well, although Paresthesia sucks. I have it with Neuropathic Facial Pain and TN, so I know what you are going through.

I was going to have a mesh sheath put between my Trigeminal Nerve and the Arterial Knot causing all the problems, but I had a heart attack in '08 which made me unsuitable for anaesthetics. The Topiramate I take for Cluster Headaches, Lidocaine Infusions and Ketamine are the meds I rely on.

I do hope your improvement continues.

Dave.

Tracy your game plan sounds good. I would not all at once stop all meds either. a little bit at a time . and try to eat easy chew food when your jaw is sore. Agree that yes somethings you just have no control over so its in the Universes / God hands . pstt your not complaining when your have t.n. you live on the edge on the ready for the next pain flare up/attack . I am not so sure that really ever goes away even if one becomes pain free. sending many blessings and like English Dave I too wish for your improvement to keep a smooth and steady pace to pain free and med free happy ending.
PEACE
BMW

Hi Tracy, I hope things are continuing to go well for you. I'm so glad that you're feeling better in time for your daughter's shower. Have you been able to go back to work yet? Is your jaw starting to feel better?

I went to a headache specialist last week to talk about the new headache type I developed after my surgery. He spent an hour and a half talking to me and was very interested in my TN. His theory is that I never really had TN. He thinks I have occipital neuralgia that was triggered by a fall I took a few weeks before the pain started. He used the word inflammation a lot. He put me on boswellia serrata (natural anti-inflammatory) and asked me to try a gluten-free diet because I've been having mysterious stomach issues.

My son has terrible teeth and has had a lot of dental work lately. Since learning about TN and hearing so many people say that theirs started with dental work, I worry every time he goes to the dentist.

I have another question for you. Did your vascular loops show up on an MRI before you had surgery?

I hope your days age getting better and better. Take care, Cheryl

Hi Cheryl, I'm feeling somewhat better. Still having the same old numbness and paresthesia. I've been wondering if this is from decreasing my medications. It seems every time my meds go down the numbness moves on my face. Almost like withdrawal symptoms.

I'm wondering if anybody else found this to be true as well.

My veins did not show up on my MRI before my surgery, but because of my symptoms my neurosurgeon said I had typical TN.

I had to go in for a teeth cleaning and I was petrified. I understand your fear as well for your son. Make sure you see a reputable dentist. If work is needed that a specialist should do, go to a specialist not a general dentist!!

Believe it or not I'm a stay at home Mom. I currently don't work out of the house. I have a 24 year old daughter and a 5 year old daughter, but I am a registered nurse. Hopefully some day I'll get back to it!!

My jaw is still sore but I'm doing massage and exercises that seem to help. Plus I've been taking 15 minute "me" breaks to sit out in the sun. Relaxing really does help.

I hope your headaches resolve soon with the new medication. Keep me posted!!