Like the name!
My story started with MS like Symptoms and patterns of relapsing & remitting, hand tremors, leg tightness foot drop, leg and arm spasms, and some odd sensory sensations. ( to name a few)
I was 27yrs old…otherwise healthy …had a gazillion tests, saw a handful of specialists and no diagnosis, they ruled out many neurological conditions based on exam, mris, blood work, lumbar puncture, cat scans etc.
The symptoms were visible to all and it did impact my quality of life for a time… No one could tell me why , they were all puzzled. It was frustrating.
I experienced a lightening bolt of electrical pain right under my eye out of the blue, I was folding laundry and actually cried out in pain, and dropped what I had in my hand.
Back then there was no google.
Throughout the day /evening into the next day it happened a few more times.
Saw my family doctor and lucky for me he recognized it as TN and suggested maybe it was, based on my description. I had never heard of it.
I was given Tegretol and responded well to it immediately …we had to adjust the dose a few times over the first 4-6 weeks as the painful attacks crept in, and my only trigger was wind/breeze.
Within a few weeks I started experiencing more of a constant burning pain on the opposite side of my face, mouth (my left side) never at the same time as my right side.
On my right I just had the shock like pain shooting right under my eye, so I had no idea what was going on, but I felt like I was falling apart.
The Neuro I saw at that time, dismissed me because;
- I was 29
- no MS diagnosis or lesions, nor anything amiss in my spinal fluid.
- bilateral is Rare, and ONLY presents with MS
Ok, so why do I have bilateral face pain?
No answer and I was dismissed.
I was very fortunate to have a GP willing to continue treating my face pain with Tegretol and a little gabapentin and Baclofen eventually.
After 6 weeks with my pain controlled by meds we started weaning down of the meds successfully. (approximately 9 months after initial diagnosis)
Most of my neurological symptoms stayed away, except the hand tremors, and occasional leg weakness.
I experienced an 8 year remission on my right side and 10 year remission on my left side
I didn’t know TN could come back, there wasn’t a lot of information back then.
I am now 43 yrs old, my right side classic TN1 is fairly managed by the meds I take. I was able to work on a low dose med be active, and not Be impacted .
My left side became progressive ( now both TN2 and TN1) and resistant to meds, the meds only work to a certain extent…I have mid to high levels of pain everyday. I had MVD in April 2013, 3 compressions were successfully removed, 3 compressions that were NEVER seen on multiple mris.
I came out of that Pain free but NOT TN free, reduced my meds from 3-1 and had 4 -5 months of relief while I recovered from surgery.
Then it started progressively getting worse again…
Btw, I still have hand tremors, leg weakness / spasms on occasion.
To this day I do not have MS or any other neurological condition other than
Bilateral Trigeminal Neuralgia.
My life has changed completely, no driving, no working ( I loved my job) and despite trying all sorts of medications, procedures , diets, holistic and alternative treatments, nothing has been able to tame my left side TN.
Except the occasional oral nerve block which gives me 5-7 hours of relief.
ALL this to say, the field of Neurology is vast, and sometimes ( like in my case) you can have serious life changing symptoms with NO diagnosis, NO answers. I was very lucky to have a GP who treated the symptoms as they came and went and I found alternative treatments.
The TN though, amongst the many TNers I’ve met online and in person, I can tell you this…we all share similarities but I have yet to meet Two people with the same case history…
Too much is still unknown about TN, luckily there are organizations finally doing active research and hopefully in our lifetime we’ll know more.
If you’ve made it this far…lol ( sorry I’m long winded)
Develop a good relationship with your doctor and perhaps instead of finding a cause ( which may be elusive) treat the symptoms with the aim at improving quality of life …
I’m really glad to read you like your doctor, that’s fabulous and great that he is open minded
I DO hope you find answers and I hope you’re feeling better soon! Keep us up to date on how you’re doing with the muscle therapy!