When I started with trigeminal neuralgia I had the electric shock pains in the right side of my face. Thankfully once the tegretol kicked in these disappeared. I'm now left with mild earache and since last wednesday numbness in my face. I'm Ok when I get up then it slowly creeps down from my eye socket to my lip. Its a very strange sensation. I've also noticed that my sense of taste has changed. Anyone else experienced this?
Vonny, the medical description for the combination of numbness and achyness in your face MIGHT be "parasthesia". It is a fairly common symptom of Atypical Trigeminal Neuralgia. I've also heard of a few other patients who reported changes in their sense of taste, either due to spasms in the face, or possibly side effects of drugs they took to manage pain.
If this is a "new" symptom, it's worth discussing with the physician who prescribed your Tegretol.
Hi Vonny, I don't have the change in taste you mention but I do have the numbish feeling in my face. It is a strange sensation. I have the symptoms of ATN but found out through an EMG & nerve conduction study (NCV) that I have trigeminal neuropathy. I also have some muscle weakness on the affected side (left) as well. I think my Dr. ordered those specific test mainly because of the numbish feeling I have. I have not come across many others with trigeminal neuropathy but my symptoms go along with ATN for the most part. I suppose the neuropathy caused the ATN or vice versa....who knows....not my docs....LOL. It is so confusing. I hope you find some answers soon.
I also had the numbness in my face, but I believe mine to be a symptom of Pre-TN, because when it began happening was years before any of my pain took place and at the time the Doctors were checking me for MS amongst other things. I agree with you though, it is a very strange feeling!
I’ve had numbness ever since the gamma knife and lately, the mvd. It beats the pain but is annoying.
Still have terrible pressure in head and numbness in side of face and chin. Neurosurgeon tells me this is trigeminal nerve damage from the gamma knife I had years ago. There is no help for this, meds don't help, either TN meds or anti-depressants. Sometimes feel like I'm just waiting to die. Sorry, don't like self pity either. I was in the 3% who had this side-effect from the GK, lucky I guess.
Mark ~ This is very discouraging, because I have the same symptoms. I had my THIRD GK in March and have had these symptoms since about two weeks after the procedure.
I'm sorry to hear that, I hope your symptoms aren't as severe as mine. We are all different, maybe yours can be treated.
Back again, still have same issues. Kind of given up hope of ever feeling well. Have tinnitus now and pressure in eyes and ears has gotten worse. Balance has gotten very tenuous. Brain fog is so bad I am missing work so as to not have to interact with co-workers. Pressure in head is creating severe social anxiety, meds don't help.
Had big blood pressure issues a while back, am now on 3 meds to control it, seem to be working. Had 244/128 pressure readings during stress test. Lucky I didn't have a stroke. Sick of living like this. :( Mark