So beyond feeling frustrated with MM, now I'm frustrated with my doctor. I just had a gent injection three weeks ago. I was under the impression that if you did not get vertigo from this injection your next step was another injection, as they hadn't gotten enough in to do enough damage. His explanation this time was no, they don't do another because I DIDN'T get vertigo. I'm very disappointed that he's not going through with another injection. Maybe I have it wrong, but I feel like he's just abandoning me to physical therapy to try and hold me off. There was just a little hearing loss with this injection. I also did not get the visual problems that I had with the first round of Gent. I'm going to be changing doctors because I feel like he's done treating me. Any thoughts from the community? Am I wrong about the Gent? Anyone else have this problem? My history in a nutshell: Diagnosed 8 years ago, Endo Shunt 2011, first round of Gent 10/2015, second round of Gent 2/2017. Physical (occupational/balance) therapy followed the first round. helped a little, but never got me completely dizzy free.
Wondering--have you had vertigo at all since the shunt in 2011? I'm asking because I had mine in 2012 and 'no vertigo' since then. Never have had a gent injection either before or after surgery! However, in spite of no vertigo--I am dealing with daily feeling of head pressure, dizziness--more like one feels if they have taken a drug that causes it or drank too much. I don't drink--never have, but do know how people describe the feeling. I am pretty miserable a good deal of the time--when upright. Seems when sitting reclined or lying down the dizziness eases--but upright, I'm constantly dealing with it and sometimes the nausea goes along with it--no fun for sure. I am currently in the process of getting an appt. with a Neurologist to see if anything other than MM is going on. Good luck to you. Anxious to know if you have had any more vertigo--as my Ent says I won't have it anymore.
When doctors run out of ideas, they blow you off. Find another doctor who will try new things. What have you not yet tried?
After my shunt (12/2011), I had a few cases of rotational vertigo. I was told the shunt would only last around 5 years as they scar over or get displaced. That's what led to the Gent injections. I also have the constant pressure (fullness) and dizziness. It was off and on again with the pressure after the first Gent, i recently had (November and December) a rotational episode and an odd screeching in my affected ear for over three hours. The screeching was so loud that I couldn't hear the people around me and I was very disoriented. That's what led me back to this ENT thinking he'd have an answer. I started with steroid injections in January along with a low sodium diet. I never had very much sodium to begin with. I know everyone says that, but I do keep track of my diet. It sounds like we have similar symptoms. It's hard to explain to people the constant unsteadiness and uneasiness. I'm just tired of this constant suffering and being told that it's something you just have to deal with. Sorry to rant so long. I just feel like there's something they should be able to do. I'm ready to move on to the laby. I'm 47 and have a lot of living left to do. Even if I can only hear half of it. My current ENT won't have anything to do with a laby because of the total loss of hearing.
I have not done the JOH regimen, although I do supplement pretty heavily (extra B, C, D, E and a multi). I've had an Endo shunt, steroid injections, this is my second round of Gent. I've had minimal extra hearing loss. I'm not far from my baseline. I'm desperate to feel better for the obvious reasons, but my career depends on it as well. Constant dizziness is a no-no for me. I could lie to my employer, but that wouldn't do any of us any good. Going to see a new doctor next week. I was going to switch in January just to get a second opinion, but I had a case of rotational vertigo in November and felt that going back to the doctor that knew me would be best. Just super frustrated, as I'm sure many are. I don't feel like being told to live with the pressure and dizziness is an acceptable answer. If we can put a man on the moon, we should be able to do something about this.
Why not pursue antiherptic therapy, either with antiherpetic drugs (valicyclovir, others) and/or lysine? Piles of evidence that herpes infections of the inner ear or associated nerves are the root cause of MM symptoms. Target the root cause, not just the symptoms. --John of Ohio
They were never offered. I'm just now getting this kind of info. When the other two avenues helped for a while, I kind of kept going in that direction because they had started to help. Hopefully my new doc will have some alternate info. I was told the guy I was going to was the best in their practice. A pretty large practice in Indianapolis. Time to start something new. Unfortunately, since everyone has different reactions to treatment, it's been a long road to find the right thing. It's hard to move on when the other methods have gotten the needle to move in the right direction.
I can attest to benefiting from the JOH regimen. I went from the full time and daily dizziness and occasional nights at the toilet waiting to puke to a cyclical good month/bad month by a low sodium diet. This was the only regimen prescribed by my ENT with a positive benefit. JOH further quieted my MM flares to the point where a flare is a shift in my tinnitus from high frequency to low frequency. The flares may last for 3 days at this point but the trend is positive after 3 months of JOH. The only element I dropped is the buffered C as it causes me problems. I am currently in my second week of PT for long term upper cervical issues. My therapists are borderline sadists and are working my neck and jaw muscles over in a major way. I actually awoke the other night as my tinnitus went totally quiet. It actually woke me up and I actually heard absolute quiet briefly. I guess you can't hear quiet, but I did and it was great. In my opinion, JOH is just too easy to not give a shot. On a scale of 1-10 for evasiveness, I score it a 1. Biggest issue is keeping the schedule.
"In my opinion, JOH is just too easy to not give a shot. On a scale of 1-10 for evasiveness, I score it a 1. Biggest issue is keeping the schedule." I meant to type invasiveness rather than evasiveness.
Get on lysine immediately and the rest of JOH if you can. Then get to a doctor who will script antivirals. They work for 90% of patients and should be the first thing doctors go to.
Thanks for all of the replies. The amount of hope here is immense. I'd recommend this site for any and all sufferers of MM. Interesting note, when I call my ENT I get his nurse and PA's line. They almost always return my call by the end of the day. The PA is one of the reasons I've stuck with him. Very attentive. However, when I called to have them send me a referral to the new doctor, I've gotten zero response or call back. I haven't checked with the new doc to see if he's received the referral, I'm sure they've done it. I'll be calling tomorrow. Funny how when you ask to change direction, they begin to shun you.