Don't apologise about posting onthis site. we all need to talk about how we feel. You have come to the right place. Read as much information as you can about facial pain - be it TN or not. I'm sorry about your neurologist, I can't help you there as I'm in the UK but I'm sure somebody will see this post and give you some advise.
Wishing you healing thoughts. Clare
First off, I am so sorry you haven't found anyone to listen to you fully. Sometimes I think it is best not to forward your previous medical charts. This of course can be impossible in some situations, but it is your health record and it can be worth a try with a new neurologist, so that you have a clean slate.
Secondly, I am so sorry for your frustrating pain, and trying to seek answers. The neck pain doesn't sound familiar to me, however the rest of it certainly does! Burning pain and intense shooting pain - you betcha, those are words you will find all over this forum. You are not alone!!!!!!!!!!!!!!!!
Lyrica helped me in the past. Currently I am on gabapentin and baclofen, although I am having some breakthrough pain. A lot of people on here take tegretol, although some people cannot tolerate the side effects. There are many medication options out there!! There is also serious surgery option, which many people swear by, but I cannot speak to, as I am only currently considering speaking to a neurosurgeon.
I hope this helps some! Everyone on here is full of different experiences and information, and I find this site super helpful. I'm glad you found it. Very cute picture!
I'd suggest seeing a neuro who specializes in TN as there are two types - typical & atypical. I get the sharp shooting pain, plus deep throbbing zaps, horrible headaches, my neck will hurt and I'll get a huge swollen gland all on the left side where my TN is.
Also, even if the doc diagnosed atypical facial pain, did he not consider meds that could help?
Glad you decided to ask your questions...the people here are very helpful and supportive!
Take care, Pam
Glad you joined this site. I too had the jaw pain. Mine is on the left side. It always starts out in the molars, sometimes the bottom and sometimes the top. It radiates into my jaw and cheek and sometimes into my ear. I would usually be pain free in the morning. It would start to come on in the afternoon and by evening I was in agony. I have Type II TN with the constant, boaring, vibrating pain. It would travel around, always in a similar pattern. I don't get neck pain, though.
I am pain free now. I take 40mgs of Amitriptyline and it is working great for me. It took a good month and half to work the dosage up and for it to start eliminating the pain.
There are people on here who have this type of pain start after a dental procedure. I'm sure they will chime in.
You are not alone in having trouble with receiving the proper medical care. I am in Canada but a lot of people on here are in the US and I am sure they can recommend a neurologist or specialist.
Don't feel hopeless, either. There are other medications to try. TN is debilitating. It gave me very intense anxiety. I was either in terrible pain or waiting for the pain to return. You are not crazy!!! It is difficult for people to understand something that is invisible and rare. Everyone on this site understands completely, though, and have gone through what you are going through right now.
Welcome to the site, It's great for talking about your experience as sadly to say many have had similar experiences. There is a great book called striking back which most use as their bible. It is a terrible illness because you get no outward symptoms that others can relate to except fellow sufferers. I thought I was crazy too as my pain moves between all 3 areas affected by nerve, so thought no-one would believe me about the pain I was suffering. Luckily I have good neurologist and general doctor who seem to know quite a bit about the condition. Currently trying additional med to see if it will help, Keep seeing the docs as they will have to do something to help. If they don't fire them and get someone who will take it seriously. Hope this helps.
hi there! many here do use their primary doc for med management..... when you are ready to think about an MVD surgery, then get the BEST neurologist and the BEST neurosurgeon....sometimes the best one for you can be on the list above, sometimes you have to travel further. We are mostly in the same treatment whether you have TN or Atypical Face Pain
(Before I forget - call a doctor tomorrow and get a prescription called in for Lidocaine Patches - for your face) !! can be 12 hours of relief!
This might help:
Google Images: Trigeminal Neuralgia
Google Images: Atypical Face Pain
But treatment either way is about the same.
If this has started after having a dental chair procedure - that is about 75% of us. No cure. Progressive
Read the book "Striking Back" by Dr. Ken Casey.
If I had only ONE sentence of TN - if you ever think you want to have MVD - 2 days in hospital - can be less or no pain for months or years after this -- DO NOT have a Gamma or Cyber Knife done first.
I could NOT live on those meds - so within a year, after doing research on THIS website
WAS The TN association - but changed it to Facial Pain Association because we are all related.
SPOON THEORY...... read it to your family or print it off - it will help everybody.
ALSO - here is for your grieving and pain: print off or read to your family:
Start a Microsoft word document and copy and paste discussions, research, etc from here or the other website.......
Ask, Read, Learn, Repeat..... the best outlook will be if YOU and/or your loved ones can help you learn ALLLLLL you can! Learn what to try, what to avoid and vent here !!!! Day and night!
I had MVD 2 years ago, and no pain now. Most who go on to have no pain, don't come here anymore - they are out living life! I happen to feel so grateful to these people, I just pay it forward , as in the helping field during the day, I just come here and use an extension of that.
I had two compressions and flew to Michigan to the man of the author of the book, because he has more experience than anyone on the planet.....literally. BUT it was not found on an MRI - hardly ever is - unless you get a fiesta MRI
But the old pros just know that you have compressions, because they don't need to see it, they know by your stories of how it feels and what your face does when you get triggers.
Sorry, too much info all at once...... take a breath - it can get better!