I was gloriously happy with my latest doctor. She seemed to understand TN (both types) and we had a solid plan for treatment. I was to start my new meds and see her in a month but mid-way through the month I began having such an attack I could not not open my mouth, eat or put my head on a pillow. The muscle spasms in my face and neck have been so intense I finally called her office today and asked if I could have something other than my Topamax so I could make it to my next appointment. I have not slept for three days. I thought maybe a little Flexeril or a Xanax or two.
While going over the symptoms with the nurse I made a HUGE error...I said the word "Bi-lateral." During this attack I have been feeling shorts zaps in the side of my face I normally do not but not at the same time as the dominant side affected (my left). My doctor advised me I must not have TN and apparently am not responding to my Topamax and my diagnosis must be Atypical Face Pain. Therefore take some Motrin, put some ice on my face and neck and come see her at my scheduled appt.
She says she will probably refer me to a Pain Management Clinic for Aypical Face Pain treatment. Oh and the MRI of my C-Spine which was planned for next month is apparently nixed. We had come to the conclusion I probably have C1 injury but that has magically disappeared because I said Bi-lateral?
I am utterally demoralized. Almost a year into this and I still have NO relief of any symptom, no compassion anywhere. I am not crazy! I finally got a TN diagnosis and she is taking it from me. I want to ball up in a corner and cry.
Wow, Coqi! This totally sucks! I HATE that you have untreated pain…take a motrin for TN…geeze, I've taken 800 mg every 4 hours (3x total for a 24 hour period) and it BARELY touched the edge of my Type 1 pain.
You are entitled to have your pain treated in the USA. I found out that it is NOT okay for a doc to let your pain go unchecked or treated. The Board of Health in our state said this to me directly when I called about such an occasion. I can see why you feel demoralized, Coqi. And, pain control is our number one priority as TN patients. I am not advocating drugs, but with this condition it is not HUMANE to leave a patient's pain untreated. Don't cry, please make some phone calls to a doc that can help you. You may ask your neuro again for a pain killer and/ or a muscle relaxer like baclofen that works on TN. Both of these in addition to a anti-seizure or anti-convulsant med like works wonders. Especially now that your pain is rising. Please call her back or call your GP. Take good care, dear.
If you message me, I will tell you the story about this happening to me about 7 years ago.
I'm soooo sorry!! I just became bilateral myself. On January 11th. I got a shot on the left side at the dentist and the pain started up on the left side. But the difference is I'd been going to my neuro since 07. I don't know why they get freaked out when we say something they don't understand... and try to ship us off to someone else. It's just plain wrong Coqi. It's may be better to see someone else that can take better care of you. You are not crazy. I hope that you can find a doctor in your area that you like!!! Sincerely, Min
The pain I have had the last few days is in new spots and has sent me into panics. My TN experience has been progressive (mostly burning) and I am only now starting to truly experience the massive shocks. To say I am scared is an understatement and I didn't expect my doctor to shuffle me away. Especially since I thought we had such a solid plan!
The rejection and insinuation that it is all in my head is awful...just awful and to tell me to put ice...ice on TN pain?? Maybe this is a good thing and I will be better off with someone who knows better. Now to find someone who knows better. Let's hope it does not take 10 more months. Yippee. =)
Send your doctor to this site to look up "bilateral". I would estimate that among our 2,000 plus members, there are at least 50 with diagnosed bilateral TN. Likewise, please inform your doctor that "atypical facial pain" is a garbage diagnosis now deemed by the TN Association Medical Advisory Board to be equivalent to "facial pain of obscure origins" -- in other words, "be darned if I know what this is". There ARE no treatments specific to atypical facial pain, though some physicians use the same course of treatment that they would with neuropathic trigeminal pain following blunt force trauma injury.
Feel free to clip and forward this note to your doctor, assuming that she bothers to have an email address and to try in spite of her mis-training, to live in the 21st Century.
I am so sorry for your situation. The same thing happened to me. I will never say "bilateral" again, even if it does come back again. My Dr. informed me it's "just" myofascial pain syndrome, a condition of the connective tissue (fascia). I had to change doctors. There is something they are taught in medical school, that if it's bilateral, it's not TN, which is false. Being referred to a pain clinic is not such a bad idea though. You might get the meds you need to survive and function. But I wonder if you can be referred by a NEW Dr. who has not heard the word "bilateral" yet. When you get a copy of your records to take to the new Dr. you can see if your old Dr. wrote the words "bilateral" in the records. Luckily, the place where my Dr. wrote it was on a page that had no pertinent information, so I took it out of the file before passing it on to the next Dr.
There are discussions that have a lot of hints you can do at home to help ease the pain some. Also some that talk about natural medicines that cut the pain a level or 2.