I never asked this question here- not sure why. I always ask whatever doctor I’m seeing at the moment, and it’s not like they really know much about TN in the first place. Anyway, I have always had other symptoms related to the attacks, some of them downright frightening. I’m not talking about the tics, or the stuttering and drooling that occurs because I can’t control the muscles anymore when the pain is its most severe. It’s stuff like: numbness in my limbs, debilitating dizziness, feeling like I have been lifting weights, and even losing the ability to control my hands. None of my doctors have showed concern about these things, except for one, who thinks I have carpal tunnel. It’s not carpal tunnel, I know that much.
You need a neurologist of he highest order! ASAP.
A TN doctor!
It sounds like you’ve been neglected. : (
Danielle this morning I have heaviness and numbness in the opposite limbs to my tn side. I get dreadful dizziness, nausea and today intergestion. My physio suggest trapped nerves as im suffering with my occipital nerves too. x
Kc Dancer is correct, a Neuro would probably be helpful for sure.
I also have Peripheral Neuropathy which causes terrible pain.
My hands are affected by it. When it hurts, it HURTS!!!
I hope your pain eases.
The thing is, I’ve seen 7 neurologists over my time, including the leader of the Gamma Knife dept at Penn University, and even HE wasn’t concerned. It’s hard to trust these doctors anymore. I’m glad no-one here thinks I’m crazy.
Nobody thinks you are crazy! If it were true we all are so we are in good company. I am not sure what to tell you about all the Neuro visits and no answers. My Doc didn’t sit me down and say “say you have Peripheral Neuropathy.” I found out when a RN was going through some stuff with me. Is it possible an answer is in records or something?
danielleq said:
The thing is, I've seen 7 neurologists over my time, including the leader of the Gamma Knife dept at Penn University, and even HE wasn't concerned. It's hard to trust these doctors anymore. I'm glad no-one here thinks I'm crazy.
Well, it took me several years to get the TN diagnosis… but I was a teen when it started, so the doctors doubted it. My underlying fear is MS, which some believe I have a high chance of developing (although my current doctor doesn’t think that. He said I would have developed lesions by now, which I haven’t.) I am so answers though, but I know early intervention is usually very important. I’m going to make an appt with another doctor in my practice, for another opinion.
Moxie- tell me more about your peripheral neuropathy. I just looked it up and it basically describes me, to a T. Only, I wouldn’t say it hurts so much; only tingles. But the thing about feeling like you have gloves on or thick socks- that caught my eye. I’ve been trying to describe that feeling for the past month, but couldn’t think of a better description. I kept saying my feet feel dizzy, and it takes a second to feel the steps beneath me. Which results in a LOT of stubbed toes 
Tingling or heavy sock is a good description of the neuropathy. I will sometimes feel like a string or hair is wrapped around my toes. Also, I have a brain injury from bad car accident that interprets tingling or spasms into pain. It took a really astute pain Doc to diagnose this.
Sorry about the stubbed toes. My father in law has diabetic neuropathy and gets the tingling/numbness in feet and toes. He played 9 holes of golf with a golf ball in his shoe and never knew until he took his shoe off at the end of his round.
TELL your Doc you know someone who has it (now you do) and you want to be tested for it. It may not show up as you are young I believe you said but it will alert Doc to keep a watch on it.
To make you feel better there isn’t really any set treatment for it. They might put you on Lyrica or Neurontin. My father in law obviously can’t feel his feet, has had it for decades and utilizes no treatment.
I hope today is a good day! Feel free for more questions. 
danielleq said:
Moxie- tell me more about your peripheral neuropathy. I just looked it up and it basically describes me, to a T. Only, I wouldn’t say it hurts so much; only tingles. But the thing about feeling like you have gloves on or thick socks- that caught my eye. I’ve been trying to describe that feeling for the past month, but couldn’t think of a better description. I kept saying my feet feel dizzy, and it takes a second to feel the steps beneath me. Which results in a LOT of stubbed toes
So glad you asked this question. I’ve been having crazy back pain like I lifted heavy weights or got hit by a car. Upper and lower back. I’ve also been having pains in my right leg inside up by my knee and down around my ankle. Nothing visible. Now my left hip is starting to feel cramped. i just went to the instacare today for the pain in my left side and he thought it could be nerve related and I thought oh great more nerves. Guess I should get to a neuro too. Ugh, I need insurance…
Bells and Danielle-
Yes I forgot to mention thanks to brain injury and also my recent injections have helped but I also have burning evil pain in my very low back that runs from hips to knees to ankles. I can relate about thinking you have been hit by a car or have a broken bone is what I used to think.
There is a test for it. Maybe when you have ins. you could have it done.
Sounds weird but I was relieved to know so it was one less thing scrambling my mind and one less pain to fear.
I really hope you feel better soon.
I often wake up halfway through the night with shocks or a feeling like my forearms and lower legs are in compression stockings. Recently, I have been getting pricking pain in my arm for hours, then pins and needles in my leg, then on to the other leg or a finger. Stingers.