My Facebook posts the last 4 days... a chronicle of my living nightmare

[guitarist58]

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My Facebook posts since what seems like my descent into hell started so long ago. But it has only been its worst a week and a half or so--and this only covers the last 4 days. I didn't start documenting much until then. My main posts are bold type--To read in order, start at the bottom and then read down inside each "group", then go up to the next bold type post. Most recent was around 1am--just about an hour ago. Last names have been replaced with "..". Yes, my ear is still spasming as I'm posting this. (I'm Rocky)


#6 - Rocky .. ‎2nd night on new meds. Feel like a limp noodle.. head swimmy... but no help. Slept from 10pm to 12:44am when my left ear went off. Motorboat city (rapid thumping/pulsing/vibrating) impossible to sleep. Absolute torture. Why is this happening? I don't want anything in life... other than to have that tendon in my left ear severed. No one could live like this and not go insane.
8 minutes ago* · Comment · Like



Rocky .. Sleep deprivation is torture. I don't think anyone other than my friend Beatrice .. (who also has these ear muscle spasms) can really, truly understand what kind of torment--what living hell this is.3 minutes ago · Like · 


#5 - Rocky .. I guess my friends can see what my other friends post even if they're not friends with each other. Always concerned me that if they all found out about what friends I have would they all wanna kill each other and de-friend me?
14 hours ago* · Comment · Like



Beatrice .. Huh? I was rather thinking that we should set up a PayPal account for you and all contribute towards your surgery! Kind of an online benefit concert for Rocky.12 hours ago · Like · 



Alex .. That's not a bad idea ! 12 hours ago · Like · 



Beatrice .. Thinking of you and anxiously awaiting news of your doctor visit...
Monday at 9:28am · Comment · Like



Rocky .. Hi Bea! Well, kind of anticlimactic... he thinks we should try more meds first. Gave me something to take at bedtime to relax. Hopefully that will help alleviate the disturbed sleep anyway. I'll keep you posted!Monday at 7:53pm · Like · 


#4 - Rocky .. ‎10 HOURS NON-STOP now. Rapid thumping/pulsing in my left ear is still going. It's hot and it hurts deep inside the middle of my ear. I'm typing this so there will be a record of events.
Sunday at 10:48am* · Comment · Like



John .. That's terrible, Rocky - so sorry to hear about your constant pain. Is there any kind of painkiller or tranquilizer that would relieve it? Perhaps the doctor at an emergency room could prescribe something to give you relief? Sunday at 11:50am · Like · 



Rocky .. Hi John! The worst part is the spasms driving me crazy--not really the pain which builds over time with spasms. It's like a rapid thumping/pulsing/flutterin
g that is so fast it's almost like a motor running. Doug over on TSB mentioned Botox injections and linked to a forum discussion (he posted in yesterday's daily thread). I'm going to ask the Dr. at the House Ear Clinic tomorrow about that too.Sunday at 11:54am · Like · 



John .. It sounds like sheer torture, Rocky. It must take a heroic effort to deal with it. I really hope the doctor you see tomorrow knows a way for you to get some temporary relief. Please keep me posted and know that lots of people are rooting for you. Sunday at 1:16pm · Like · 



Rocky .. It is torture John. But thankfully it doesn't go all day long as well as night. I'm fighting the sleep deprivation as much as I can. My focus is on being able to make it to the Dr. tomorrow!Sunday at 6:50pm · Like · 


#3 - Rocky .. The insanity starts again. No muscle spasms all afternoon and evening. As soon as I lay down to go to sleep it starts. Left ear is rapid pulsing/thumping so fast it's just like a motor. It hurts. it's torture. Dozens of people praying for YEARS is obviously WORTHLESS. A JOKE. If it keeps up like this I doubt I can last more than a few weeks. House Ear Clinic--Monday appt. they HAVE to do something.
Sunday at 2:06am* · Comment · Like



Merk .. maybe go holistic?Sunday at 2:12am · Like · 



Debbie .. I sure hope they can help you, I'm so sorry you have to sufffer so much.Sunday at 2:31am · Like · 



Patricia .. Rocky, I can only imagine the desperation you are feeling. Make sure they DO something. If they don't offer any help, just park yourself there and don't move. You know how doctors can be (not all, but some). Make a scene if you must, be sure that everyone who sees you gets the message that you can't deal with this any longer. I'm surprised you've managed to remain sane. BIG BIG HUGS.Sunday at 4:38am · Like · 



Rocky .. Thank you all very much. My ear is still spasming/fluttering/pulsin
g/thumping almost 10 hours non-stop now.Sunday at 10:41am · Like · 



Rocky .. Merk, I've tried acupuncture, herbal remedies, relaxation techniques... for over a decade now. They've just got to do that surgery and sever the tendons as soon as possible or I'll go out of my mind.Sunday at 10:55am · Like · 


#2 - Rocky .. ‎6am. Left ear muscle spasms woke me again--this time running nonstop just like a motor. I feel like I'm going to go out of my mind. I can not live like this much longer.
August 28 at 6:39am* · Comment · Like



Rocky .. ‎8:30 now - Left ear spasms non-stop for 2-1/2 hours. My ear is starting to hurt... usually have an earache for 24 hours or so after this kind of occurrence.August 28 at 8:31am · Like · 



Rocky .. My chest is starting to hurt, too. Only had 4-5 hours sleep so it's probably stress.August 28 at 8:32am · Like · 



Brian S .. Ear muscle spasms?August 28 at 8:54am · Like · 



Rocky .. Yes. Stapedia/Tensor Tympani. I've had it for 16 years in my right ear, 2-3 in my left. It has gotten insanely worse the last few months. It used to be only people talking "on the wrong side of me" triggered my right ear. Now the spasms are spontaneous. I've had countless examinations (ENTs, audiologists, neurologists... CAT scans, nerve tests, etc.). I have an appointment with the House Ear Clinic in Orange county Monday. Saw them a year ago about surgery. Sever the tendon so it can't vibrate the ear drum anymore. Doesn't solve the nerve condition but would (*should*) get rid of the thumping sound and feeling. $10,000 for one ear. I'm going to ask to see if I could have the surgery in both ears at the same time to save money. Still don't have the money, though, and am practically destitute. Right now my left ear is still going non-stop. 3-1/2 hours so far. BTW, I'm on a new med, Lyrica. Obviously doesn't seem to be working at least at this point...
August 28 at 9:27am · Like · 



Beatrice .. I hope they can do both ears for you. You're in my prayers.August 28 at 9:51am · Like · 



Sandra .. Oh Rocky, that sucks. Dave is contemplating leaving his band as his tinnutius is so bad right now. I just can't imagine what you both are going through, although different ailments they both are causing havoc in your life it seems.August 28 at 10:27am · Like · 



Rocky .. ‎@Bea - Thank you my dear friend ♥ that means so much to me!

@Sandra - I'm so sorry Dave is in that situation and it's so advanced he has to consider giving up playing. I think I know the difference having the "ringing" type myself as well, and it's no fun either. I can't do anything with music anymore--even listening to it can be difficult and at times I just have to turn it off.
August 28 at 1:56pm · Like · 



Brian S .. I've heard of this (no pun intended) but you are the first person I've met with it formally diagnosed. I'll pray you find a good solution. As for lyrica, it seems to be one of those pain medications used frequently for atypical pain syndromes... Mostly neuropathic pain such as diabetic neuropathy, fibromyalgia, etc... I'm not even sure anyone really knows how it works, but I do know it seems to take a few weeks to make a difference. Have you tried noise canceling earphones to prevent stimulation of the muscle?Sunday at 9:45am · Like · 



Rocky .. Unfortunately, Brian, this has escalated to the point the rapid thumping/pulsing spasms are not in response to stimulus. My left ear has gone for 10 hours non-stop now. My only hope is the surgery--I don't have time to try anything else I would go insane. Here's a relevant link--the last sentence sums it up:

http://www.ncbi.nlm.nih.gov/pubmed/8035114
Sunday at 10:53am · Like · 



Rocky .. Brian I forgot to mention--I think my Doctor's idea with the Lyrica was to test the anti-seizure aspect of it. To try to prevent the spasms. There's not really pain involved unless the ear spasm have been going for a long time.Sunday at 11:49am · Like · 


#1 - Rocky .. ‎1am. Muscle spasms in my left ear are back--no sleep for me. Rapid thumping sounds in my left ear. It's torture and torment. I'm going to see the Dr. at the House Ear Clinic next Monday. Will cost me $100 I can't afford to spend, but I'll be able to ask if he can do the surgery on both ears at the same time.
August 28 at 1:06am* · Comment · Like



Rocky .. Still won't have the money but if they'll do it, it should be less than the $20,000 it would be doing each ear separately.August 28 at 1:06am · Like · 

Write a comment...


[Hwoltage]

That's awful. What a bizarre issue to not be able to fix after this long... I don't know what to say other than what you have probably heard a jillion times: Hang in there.. Jeez..

What's frightning is my ear does the same thing sometimes... Like a bug is in there thump thump thump... Crap.

[guitarist58]

I'm actually surprised at this point at how many people do experience it at one time or another! I only learned a couple of weeks ago that my friend Bea--a college buddy from 30 years ago who I just last year reunited with on facebook--suffers from the same thing (only hers is still just triggered by loud sounds and not spontaneous). BTW - left ear is still going right this second... about 180 bpm I'd guess.

[Hwoltage]

There was a time a while back when it did it rather frequently. I thought it was a bug and wanted to dig the damn thing out!

[Hwoltage]

Is it the function of the ear that opens and closes to protect your eardrums from loud bursts of sound?

[guitarist58]

Yeah, it's certainly akin to a bug in your ear--and I've got one in both ears! Right ear started 16 years ago (triggered mainly by just voices), left one 2 or 3 years ago, but only got really bad the last few months.

[guitarist58]

Originally Posted by Hwoltage

Is it the function of the ear that opens and closes to protect your eardrums from loud bursts of sound?

Yes, that's the normal function of the tensor tympani/stapedia mechanism in the middle ear. The surgery goes into the middle ear and severs (actually sections) the tendon that connects the system to the nerve that tells it to work. Having the surgery would defeat the ear's ability to protect itself from loud (actually mainly sustained) sounds, but it would be a welcome trade-off IMO!

[Hwoltage]

I say this very lightly as I know you have been suffering for many years and have probably heard it all but,

I have actually trained myself to control that function to some extent. I practiced in front of a stereo and have total control now over the function. I can block loud sounds at will and them open it back up. I don't know if that is a normal ability but since I started doing this I haven't had an issue with the spasming. Can you wiggle your ears? The function is very close in sensation to that.

[Hwoltage]

Or being able to control it is very close in sensation to that.

[guitarist58]

Wow! And I thought I envied some of the guys on here with hot wives and vintage tube amps!

Actually I can wiggle my ears, and I can tense them making a "rushing sound", but have had zero luck with controlling the spasms. Maybe I will try some more and see if I can come up with variations in the way I'm doing it... So far (right now) my ear is hell bent on doing what it wants and ignoring my muscle activities...

[Hwoltage]

After time though perhaps you can build up the strength and fight it off a little bit!!!

[guitarist58]

It's certainly worth a try!

So sleepy... going to turn on my fan for white noise and try to go to sleep. I actually sometimes can fall asleep with the spasms still going. They apparently continue throughout sleep--if I wake up a little like when turning over they're still going, and sometimes even are still going when I wake up hours later

[Hwoltage]

Good luck man. I hope you find a way!!!

[Midnight Lady]

Rocky, I just saw your facebook post so came here. I'm glad you have hwoltage to talk to about this. It helps knowing you're not alone.

Someone asked me a day or so ago about you and wondered if you qualify for Medicaid??? I know it's available in California, but being a Canuck I know little else.

Here's the site I found: http://www.dhcs.ca.gov/services/medi...s/default.aspx

See if you qualify ok? And please let me know. It covers people who are not otherwise insured, but I know that there are certain other criteria that must be met.

I sense your desperation. Wish I could be there with you so you wouldn't be alone. Please please hang in there.

[guitarist58]

Originally Posted by Midnight Lady

Rocky, I just saw your facebook post so came here. I'm glad you have hwoltage to talk to about this. It helps knowing you're not alone.

Someone asked me a day or so ago about you and wondered if you qualify for Medicaid??? I know it's available in California, but being a Canuck I know little else.

Here's the site I found: http://www.dhcs.ca.gov/services/medi...s/default.aspx

See if you qualify ok? And please let me know. It covers people who are not otherwise insured, but I know that there are certain other criteria that must be met.

I sense your desperation. Wish I could be there with you so you wouldn't be alone. Please please hang in there.

Medicaid not accepted at either my family doctor's medical clinic or the House Ear Clinic. I've checked out just about every possibility, but the web site Sandy linked to about Pre-Existing Condition Insurance Plan (PCIP)/High Risk Pool sounds like a real possibility!

Getting REALLY sleepy now... ear still going about 180bpm... ugh.