TN symptoms in other body areas

I have had a very bad last week or so. TN2 breaking through the drugs is constant this week combined with intermittent TN1 strikes multiple times per day. Seems to have been triggered by me going out in the sun for a few hours one day (direct sun trigger) a week ago and going for a boat ride a few days later (wind trigger). I figured it was bad already, so I might as well enjoy a boat ride that I would normally run away from. It was almost worth it!

Now the last two days I am getting completely numb in my arm, same side as the TN attacks. Numbness started in the fingertips and has been working its way up my arm over the last two days. Its reached my bicep now. My hand is bad enough that I am having a hard time gripping anything with weight. I don't dare hold a coffee mug and its taking me forever to type out this message because my left hand keeps hitting the wrong keys. I had a hard time holding my utensils to cut food at lunch today.

This numbness is how my TN symptoms started 10 years ago (in my face). At the same time I did have numbness in my arms and thighs. I know Red has given me the term for this numbness but I can't think of it right now. When I started on the TN drugs the body numbness disappeared for the most part. It has never re-appeared like this. Doc has never commented on the body numbness and I tested neg for MS.

Anyone else experience similar symptoms? Anything specific I should mention to my Neuro? I am thinking of making an ER visit because this is very troublesome but I have no idea what expectations I should have or if this something that I should even be immediately worried about.

Thanks, Elaine

I would see a dr today not only is this troublesome physically but the worry must be eating at you. This is a new symptom and I would recommend having it checked out. In oz we would see a Gp or the ER as it is free . Best wishes that it subsides .

Our ER is free as well. It has subsided somewhat this evening but it seems to be worse in the morning.

Also check the side effect of your meds. But it does sound disturbing.

Hi Elaine, your symptoms do sound worrying and you should probably see a dr. about them. I've experienced pain in my left hand (same side as my facial pain) for over a month now and am definitely going to mention it to my neuro as it started only with one knuckle - not a big deal - but it has been moving upwards and now I struggle to open bottles etc. At the top of hand half way between your thumb and index finger is a spot that my acupuncturist used for TN treatment that's why I thought there may be connection to the neuralgic facial pain.

Saw the Doctor tonight. Problem highly localized so drug problem is not likely. Neuropathy problem is suspected. Strongly advised to discuss with my Doctor as this is a Neuropathic symptom and TN is also Neuro related. Could be an indicator that there is more going on than just TN.

Since I am also having so much problems lately, prescribed immediate increase to Gabapentin dosage which is relatively low right now. Gabapentin should solve both problems since it is a Neuropathic drug.

Worth the visit I guess, since I can't get into my Doctor until the end of August.

Keep my updated on your visit Oldriska. Its very interesting that we both have something similar. Definately mention it to your Doctor.


If your arm remains numb take extra care with it . Things like gardening and handling warm or hot things are very risky as you won’t feel damage . If it became worse and you went to the E R could they order an MRI from there or would you still have to wait to see your Neuro.