I had a very successful MVD surgery four years ago and now the TN1 has came back into my lower left jaw. There is another complication I am also having. I began having vertigo about a year ago. Not all the time, I have had about 4 or 5 episodes. I have also noticed when I lean my head backward the TN pain almost goes away, but, when I place my head back on a pillow the dizzy, vertigo episodes start to began. The Dentist checked my teeth and she could not find anything wrong but she noticed tilting me back I was OK, but when she went to lean me back ward to look at my teeth I almost had to sit upward. She is wondering if I have a pitched nerve are maybe scare tissue from the MVD, and if maybe something is putting pressure on the trigeminal nerve on the right side. I cannot take any pressure being applied to the back of my neck also. Has anyone that has had MVD experienced this?
I also might had I have noticed the pass six months a ringing in my ears, she said I did not have TMJ and my face was in line perfect. I would be interested in any comments.
I have ringing in my ears and its pretty common with GN. Which I have.But I had ringing in my ears way before I ever had TN, too. Its just more prevalent with me now. I am sorry you are having pain again after 4 years of being pain free. :(
I think you are right Kc, She did tell me to do that though. My problem is I am in the state of TX and there are no neurosurgeons who will treat you with this insurance that I took. My husband recently went on total disability for heart related problems and so due to finances I went to the market place for insurance. I had a lady to help me and the Insurance she put me on was an HMO, bad, very bad mistake, and they wouldn't let me change it. I have begged and pleaded my case with them 3 times now and they will not let me change it unless I am going on hospice. This new insurance program is really bad. Plus, all the Dr.s enrolled will ask first for your ins, and then when you give them the first three letters on your card they say know, and when I tell them they are on the list to except it, they say, we are not excepting any new patients, I mean at least 40 have told me this, and the neurosurgeons will come straight out and say NO, all the way to Dr. Janetta in PA. It is bad. I cannot wait until the new enrollment period gets here and hopefully we can get out of it.
Very strange as I had MVD Surgery 4 years ago and the pain has returned along with vertigo I did not have first time. Curiou who may have vertigo associated with type I TN
Just wanted to add, it might not be TN related, might help to see an ENT and a vestibular physiotherapist to eliminate other possibilities in regards to the Vertigo and ringing of the ears. Have you seen your family doctor yet? They could help facilitate further investigation or maybe direct you to neurologists or neurosurgeons who will help.
Mimi
Hi Mimi, Well, he first suggested an ENT, then with the TN strikes I am having he thought I might has well go back to my neurologist and then probably back to the neurosurgeon. I am not getting a lot of relief from the TN strikes and I am not eating very good because of it now. Talking is getting very difficult as well. I tried wearing a guard in my mouth for the teeth grinding but that did not seem to make any difference. Thanks for your reply though, I had not heard of a vestibular physiotherapist, I will mention this to my neurologist.
I just noticed your reply Jillian, that is so strange that you also had MVD surgery 4 years ago and the pain as returned along with vertigo as well. Do you mind if I ask where and who did your surgery. I also have a very difficult time laying flat on my back. I am so dreading an MRI because of this. I know I will have the vertigo any time I try this. This is very interesting though.
Lindaa
Jillian said:
Very strange as I had MVD Surgery 4 years ago and the pain has returned along with vertigo I did not have first time. Curiou who may have vertigo associated with type I TN
Linda have you been on any meds throughout the 4 years until now?
I ask, only because in my situation pre-MVD I was working on 800mg Tegretol for almost 2 years when out of the blue I started experiencing dizziness and then within weeks full on Vertigo. It was disabling, I ended up sitting in a chair in my living room for almost 2 months unable to function.
I was sent to both specialists I listed above, tried on medications, given every test and exercise that exists and within a few weeks of onset I also developed hyperacusis (an extreme sensitivity to certain everyday noises) .
In the end due to process of elimination it was determined to be a side effect of the Tegretol and it did subside drastically within months, the hyperacusis went away all together.
It was explained to me that you can develop side effects to certain meds even if you’ve been on them for a length of time.
I don’t know if it was the Tegretol…who really knows?
I remain on Tegretol and have not experienced it since…although after my MVD a year ago I did have a few bouts of vertigo which also went away with time.
Who knows…I can’t begin to understand the whys and what’s, but best to get every possible angle covered.
So sorry you’re having to go through this.
Mimi
I've had sensivity to sound every since I started with TN pretty much... it gets better and gets worse...but always there on some level. I have had custom ear protection made. They were not too much fun to be made... but they have helped me alot as they are easy to put in, at a moments notice. I hope you feel better soon. But just know the hearing thing can come and go. It might, not everyone is the same I know, then again, it might go away.... and never return. Let's hope so anyway!!!!
I also have experienced a lot of vertigo in the past with TN.I was always told it was a sinus infection.Antibiotics did seem to help,but i wonder if it was the Tegretol now.I've been off meds over a year and no vertigo.At least severe.So sorry your pain has returned.) :
Thanks Mimi, for your reply. Before my MVD I took carbamazapene for about a year and a half, I was taking 1000mg a day to 1200mg a day. Sometimes the pain would be so intense ( like it is getting to be now) that I would crush a half a pill and put it under my tongue to get relief. I was wondering, did you take tegretol are the generic carbamazapene.
Bless your heart, I did not have vertigo that bad, I can only imagine how horrible that must to have been. I did not have any dizziness are vertigo before surgery it only began actually last year about 2 1/2 years from my surgery. I am also having the noise in my ear problem. The constant ringing and other noises. I told my husband the best way I could describe it was like a telegraph years ago, are two little aliens talking,:) My husband and I are beginning to think it is something in the carbamazapene. It does not seem to be doing anything for me. I tried the brand epitol before and that did not work at all and I am so curious has to the fact did the same pharmaceutical company make this brand as well. I know what you mean this is a horrible condition and it doesn't help that people can not see it either.
Sometimes I will get a sensation of sound shutting off in one ear...My right ear usually..and then that is when the high pitched squeal will start (or ringing) then it goes away. Hope this is helpful.. to make you feel not so alone.... :-/
All I know is my ears do some pretty crazy things too.. the worst part is with sound sensitivity,,where it physically hurts with a loud noise....That is the worst part of it for me. People describe the noise as ringing, but to me, it can be, but mostly I get high pitched squealing tones. I guess if both of your ears are doing it simultaneously...it could be why you think two aliens are talking???
Linda I was on a Tegretol CR ( Sandoz-Carbamazepine) and still am…at the time of vertigo was only on 800mg/day at my worst I was at 1600mg pre MVD with no vertigo, currently on 1400mg.
Oh, my, you have had to take a lot of Tegretol. My neurologist told me I could not go over 1200mg a day of tegretol even if it were the generic carbamazapene. I took the Tegretol CR and it gave me headaches so he told me to go back to carbamazapene. You know I am beginning to think like Don on here. I wonder if the tegretol is not what is causing the vertigo episodes. Even after my MVD I had finally weaned myself down to 100mg a day of the generic but that did mean I had been taking it for about 5 1/2 years, it still was in my system, it also makes me wonder if the ringing in the ears is not also a side affect of the medication.
I was on zero meds. Now I’m on gabupentin 2400mg a day. I can not tolerate Tegratol or other similar drugs. The TN returned 8 weeks ago, vertigo 4 weeks ago.
Regarding the ears… I was at a Oregon Ducks football game this week (season tickets) and last year the insane crowd noise didn’t bother me. This time, since TN has returned, I couldn’t handle it. It was like a speaker getting blown out. High pitched noise and it was painful and activated TN attack. Next game. Earplugs. Also, I lost hearing in the ear. I’d say 30% loss and the feeling of fluid or plugged up happened to me too. Lasted about a month but like everything else got better and better.