Hello all. Have not been herefor awhile. Gamma in March, down to 500 mg of Tegretol. I cannot seem to get lower, and this frightens me. I also have some strange numbness around the right side of my mouth. It kind of feels more like a spider web. Ugh…so annoyed. I sooooo…want to be free. I am still lacing up my shoes and hitting the road. Some weird ear pain, high pitched noise in the left ear accompanied by feeling like I am swimming under water. Hearing will also go out and it feels like I have blown a speaker. Not unremittant pain though? Which is a blessing. Has anyone else experienced similar? Oh here’s a scary thing. Feel fragmented in my thought process. Going to see the neurosurgeon this Friday.
Yes, that is where my numbness started about 2 months after my second CK Now it has spread throughout my entire left side of face and scalp and inside of mouth. I really hope that doesn’t happen to you. It is miserable. Good luck and keep us informed.
It is creeping. It is now across my chin. What can you do about it? Is it permanent? Does anything make it better? Thank you so much for responding. Should have said that first. But the little chicken inside me immediately started running around inside my head screaming “The sky is falling, oh no the sky is falling”
I have the ear thing, like all of a sudden my right ear will cut out. Weird.But then it kicks back on. And the ear ringing, high pitch, squealing. Whatever you want to call it. ANNOYING!!!! The spider webb thing I have had on and off, thank goodness not all the time....cuz that WOULD drive me nuts, the ear itching is nutty enuf...inside and now outside... If I'm not careful I'm going to scratch it raw... :( I wonder if Ice would work-----
I feel the itching is getting worse and worse along with the numbness. I feel a needle is in my eye. I also thought about the ice. I’m scared to try it. If anyone has tried that, please let me know. Thanks so much everyone!!!
Since the first time I got TN I had the numbness and even though is bilateral I only get it on my right side (mouth, chin) is awful.
Are you an MVD candidate?
Put Gamma in the search box and see what you find of others postings....!
It sounds scary!
Tats85, I have numbness too, and it's on the side I started with and from the TN. I got tongue numbness however, from the Gamma procedure and they told me that is pretty common with it. But, yeh like you I have numbess just from the TN. The neurosurgeon diagnosed it the 7th and 8th nerves. Then after I had the procedure the instense pain went away, so I was then able to notice it. I did not realize it until then because I was so totally focused on the burning pain.It was off the charts...and I was willing to do anything to get rid of it...:( I wasn't totally free from the pain tho, I still had dull aching pain and I could not sleep on my right side my ear was very sensitive to touch and then I eventually lost the taste on the right side of my tongue as well. You are the first person I've heard say they had numbness just from the TN. So I had to respond.... :) Min
Came back from Philly today. I had my 3 month follow-up with the neurosurgeon concerning Gamma procedure. I can chew and bite down on food now, that horrible tooth pain is gone and the pressure in my face is gone. Good news right? Yes. New things: numbness and tingling on right chin and traveling to the left side of face. Intense right ear pain that lasts for minutes at a time. Honestly, really?? He stated, the numbness might get worse before it gets better. My prognosis is improved but needs to be closely monitored. So I am a work in process. This is where patience really gets to be something prayed for not inherently possessed.
On the inferior alveolar nerve the answer is I am not sure. I researched it myself I think that the Gamma could be responsible for a myriad of new symptoms. What a crap shoot.
What kind of weird ear pain? Can you describe it.
I was told during my consult after Gamma, that the numbness might get much worse before it gets better. Nerve damage. The numbness has now creeped to the left side and the ear pain is on the outside of the ear, right next to the ear opening. Sometimes it feels like a bad earache. Really bad earache. I feel bad about what is happening now. I was so hopeful.
Well after I had Gamma I got some weird numbness on the whole outside of my ear. Mostly the top and middle and I couldn't sleep on it. It kinda felt like somebody boxed my ears. Only it was there all the time. .. I am sorry it didn't work out so well. Mine only lasted for 3 years and I was only free from the bad burning mouth pain I had. It came back and I have it controlled with Effexor now. I also have inner ear pain that I take Trileptal for. That came last year after I had a tooth done. The trileptal works pretty good. :) I am so sorry. :( I know how you feel. I got real sad when it came back. That's why they put me on Effexor and then we found out it worked for the pain. Been on it since. 2011. Stll working. The outer ear pain did eventually get better tho and go away now it's just numb. So hang in there. Things CAN change. That was my original point in writing you, I just got off track a bit. lol
Thank you Min. Needed to hear that the situation can improve. I also had an abscess in a tooth and then 3 consecutive root canals done 2 in one sitting and one the following week. After the second one the right side of my face was literally twitching uncontrollably. It was after that I began to have burning and boring pain in the teeth and cheek that never got better. The Gamma took away that pain. So it’s just a wait and see I guess. Thanks gain.