Is Middle Ear Myoclonus (MEM) a Form of Pulsatile Tinnitus?

Hello everyone. I have long suffered from high pitched siren like sound which I think is classic tinnitus. The ringing in the ears. It started when I was in high school and going to rock concerts. The sound is just like the ringing you get after a loud concert. With me, I went to one concert and the ringing just never totally went away.

I am 51 years old and would say this started back when I was about 18 in 1988. I have learned to live with it, so its not so bad. When I was 38 years old in 2008 I had a bad heart attack caused by a blood clot. So now I am taking Bisoprolol (beta blocker) and Lisinopril (ACE inhibitor) along with quite a few other meds.

About 2 weeks ago I was asked to increase my beta blocker dose. Two days after that I developed a pulsing sound in my ear. This is a NEW symptom I just developed for the first time ever. I can actually feel a small vibration inside my ear. It goes BUMP BUMP BUMP to a rhythm. It is NOT in sync with my heartbeat. The speed of the rhythm is quite a bit faster than my heart rate and can vary speed. Sometimes when it just starts up it will only bump maybe 10 times in a minute and be really faint. Sometimes it seems to be going 200 BPM or more, really fast. It is a bass sound, low frequency, as compared to the high frequency of the tinnitus I am used to having the past 32 years.

I went to an ENT and asked him if he thought it was Middle Ear Myoclonus and he said yes, since it's not going along with my heartbeat. So it is a muscle in the middle ear bones twitching out of control. My ear of course had stopped the sound and wasn't doing it when I had the office visit. He didn't have much to offer me for help, just sent me on my way and told me to contact him again if it continues to a point where it really bothers me I guess. It is driving me mad. This I cannot stand. I dropped my dosage of Bisoprolol, the beta blocker, back to 10 mg from 15 mg. About 3 days later the sound was gone!! I was so glad.

Fast forward now about 1 week after having it go away, it is back again. It seems to get worse around 5 pm and then goes until I get to bed. When I wake up it's there, but after a while or especially after exercise it goes away. Two days ago I increased my Lisinopril dosage. Maybe that brought it on? Both drugs seem to be unlikely the cause though since I have taken doses that large for a period in the past with no issues. Now that my dose of beta blocker is back down to the usual dose the vibrating is still there.

I've tried taking pseudoephedrine decongestant and sometimes it seems to help and make it go away, but its not an every time thing. Sometimes it goes away, sometimes it does not. I'm not suffering from any pain or bad congestion in my head. The ENT looked in my mouth and ears and said everything looks normal.

Anyone have any ideas what might be causing my problem? Wondering if anyone here has the same problem - the pulsing vibration in the ear that does not coincide at all with heartbeat. It is independent.

 

Well, I can say that being cardioverted doesn't affect stapedial myoclonus. At least not within the first 6 hours after. My tinnitus in the left ear, where I have had the myoclonus, is a little bit worse.

Once again I had to go to the ER and get defibrillated to get my heart back in rhythm. I was stuck in ventricular tachycardia. Heart rate was around 125 bpm. Luckily it worked well. I've had it done about 6 times now, I lost track.

I will most probably have ventricular ablation done again early next year. I need to talk to the surgeon now and get his opinion. It's always a risk vs reward analysis. The surgery has a chance of making things worse or even death. Chance of death I think is about 1 or 2%.

I had ablation done about 4 years ago and it didn't affect my tinnitus. Thought it might be good to let others with similar heart problems know this.

It's a New Year now as I write this. I pray this year will be much better than last, for all of us.

 

My dad had ablation surgery three times for his arrhythmia (it's a family issue, his mother had it as well). First two times the arrhythmia came back eventually, the third time he switched doctors and it worked (the new one was one of the top doctors for ablation surgery in the country). He didn't have any problems, even though he had it done at the venous side, where risks are higher.

 

That's good. I'm going to guess his was in the atrium? Mine is down in the ventricle and the result of a heart attack. The ventricle is tough because its so much larger then the atrium and its harder to zap all of the offending area. My first surgery lasted 5 hours. The surgeon said some can go longer! Crazy.

So I'm under full sedation that whole time, and they have to trigger arrhythmias over and over to see if it has worked. I think the first surgery made mine worse. It is a scary surgery. Even my surgeon is not chomping at the bit to do another one. He gave the first surgery a 30% chance of success. Not sure of my chances are better or worse 2nd time around.

What I'm looking at long term is a heart transplant. I don't need one yet, but my heart gets a little worse each year. I can feel myself dying slowly each year. Its been 12 years since the heart attack. I'm 51 years old now. I started out a bodybuilder and now doing exercise is a risk for me. Its been a long terrible road. My ejection fraction is about 20%.

Do you know if your father's ablation was atrial or ventricular? Atrial is nice because its rarely lethal. Ventricular can be deadly, but I've got an implanted defibrillator to save my ass. During the surgery they have to turn it off, so that scares me. The patient can go into V fib and flatline, heart stops.

 

I assume his was atrial then. His mother treated it with medication only (blood thinner and beta blocker if my memory serves me well) and lived with it for 20-30 years. My dad had it on and off over a 5 year period and used medication as well before surgery and told me that it would be possible to live with his condition (so obviously it can't be something like ventricular arrhythmia that is fatal). He however didn't like the reduction in his fitness that came with the condition and medication, he often went hiking and biking, so that's why he did the surgery. He was lucky because our neighbour back then was a cardiologist, which made management a lot easier.

I wish you a lot of luck.

 

I'm considering rolling the dice again and do another surgery. If I keep getting stuck in ventricular tachycardia then I will do it. It's just scary knowing I could go in to surgery and not come out alive.

Early death after the procedure around 5%.

https://cardiacrhythmnews.com/rate-...entricular-tachycardia-ablation-as-high-as-5/

 

It is a very difficult situation and you have my feelings. It would be better if death occured during the surgery since you're sedated (if you're among the 5%). But if it occurs afterwards...

 

True, I'd rather die on the table. I'm not ready to die yet though. I've got too many things to see and do! For now I think I'm just going to try my higher dose of Mexiletine, see if that works ok. It helps to calm my fears knowing I have my implanted defibrillator. It's like having my own private EMT squad with me 24/7! Everytime it goes off I know that I probably would have died if not for the device. It's saved my life about 10 times now. I've got more lives than a cat!

 

Is it possible the implanted defibrillator might fail to work sometime when it needs to? So you still die? It's a sobering thought.

 

No, not really. At least not without a warning. It has an audible alarm that goes off if something is really wrong, like a broken lead. My old one went off as a warning that it only had about 6 months time on the battery. That was freaky! It sounded like a truck was backing up in my bedroom! Beep, beep, beep. When the battery runs out the whole thing has to be replaced. Just the defibrillator box is about $50,000.

 

No I didn't mean that.

I meant is it possible the defibrillator recognizes you have a heart issue, and fires off successfully, but it won't help you and you die regardless.

 

Oh, I suppose so but that would be if my heart is much weaker than it is now. Being young has saved my life. If I had been 70 years old with the heart attack I suffered, I would have died the day I had it. I was only 38.

If I get near to that point I will be on the transplant list.

The biggest contributer to the heart attack I found afterwards is a blood clot disorder I have. We didn't know it is in the family.