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Old 09-23-2007, 12:25 PM   #1
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Join Date: Feb 2005
Location: Pittsburgh, PA
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gloria2936 HB User
For Lib - Middle-ear myoclonus

Hi Lib,

I'm familar with you posting regarding Middle-ear myoclonus and was hoping you could answer some questions for me.

I was put on klonopin for a year and took another 1/2 year to come off it. It was prescribed to help with my headaches and inner ear issues which turn out to be a brain injury I had back in Dec. 2004 as the result of an allergic reaction to an antibiotic. Jan. 31 of this year I took the last doseage of klonopin and am still recovering from some withdraw effects. I am telling you this as it leads to my following question.

Shortly after that on occasions and really only when I lay down at night, I started noticing a very faint pulsating tinnitus on top of my normal buzzing tinnitus. I only experienced it on occasions.

I had a follow up MRI in May which was clear.

A few weeks ago I had a bad cold and during that cold and now after the cold is cleared up, I am noticing a mild pulsating (feeling) or maybe a spasm in my left ear that seems mostly to happen when I turn my head, swallow, yawn, etc. Could I be developing middle-ear myoclonus? I've read about this on the internet, but am not sure if this is what I am experiencing. It is not all the time but it is disturbing that I developed a new symtpoms almost 3 years into this whole ordeal (have recovered some).

Can a cold spark this? Could it be nerve related and maybe induced by the use of klonopin (read this in my searches on middle-ear myoclonus)?

Also, I am always under constant stress from my condition. I have tight neck muscles and tension in my back. I also read from a chiropractor that stress/tension can cause this.

It seems as if you've done so much research and have experience with this so I thought maybe you could give me your input. I also have read this can be a symptoms of MS which of course, freaks me out. I don't know why since my problems started after that antibiotic incident and my MRIs/Scans have all been clear.

I've also read that this can go away on its own. Have you met others who have had it resolve itself. I just simply can't deal with any other problems on top of the ones I already have.

Thanks for your input.
Gloria

 
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Old 09-24-2007, 09:26 AM   #2
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jbbrocky HB User
Re: For Lib - Middle-ear myoclonus

Hi Gloria- I hope your doing well, just wanted to check in and see whats up with you and see if you have been feeling good.

speak soon

JB

 
Old 09-24-2007, 10:58 AM   #3
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Join Date: Feb 2005
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gloria2936 HB User
Re: For Lib - Middle-ear myoclonus

Wow....Hi JB. It is wonderful to hear from you. I'm up and down then up again. Still problems but the one thing I noticed this year was the head pressure and headaches are so much less and even the really bad headache days are nothing like they were even back in January. I have to say that most of my problems seem to be in my ears still. Lots of weird funky feelings, some fullness and the tinnitus. I was given a prognosis of 2 - 5 years so hopefully I will keep improving. A lot of it is just dealing with the emotional side of just not feeling good even on my good days. Just wears on you. I use to be able to let things roll off my shoulders, but now the littlest things bother me. My neuro says it is my CNS still out of wack and that will improve with time as long as I keep working at desensitizing my CNS. Excercise, eating healthy, staying hydrated and lots of relaxation things to promote healing. I'm still taking magnesium. Are you?

How are you doing? Still doing well? How's the squash; still keeping up with it with no problems? I think it is time for me to try and step up my excercise; walking 2 miles a day just isn't cutting it.

I talk to Howie on occasions and he seems to be doing quite well this year.

Thanks for stopping by to say hello. It was really nice hearing from you and I'm still holding you to that squash challenge when I kick this thing. (Or maybe just a squash lesson (lol)).

Gloria

 
Old 09-24-2007, 02:22 PM   #4
lib lib is offline
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Re: For Lib - Middle-ear myoclonus

Quote:
Originally Posted by gloria2936 View Post
Hi Lib,

I'm familar with you posting regarding Middle-ear myoclonus and was hoping you could answer some questions for me.

I was put on klonopin for a year and took another 1/2 year to come off it. It was prescribed to help with my headaches and inner ear issues which turn out to be a brain injury I had back in Dec. 2004 as the result of an allergic reaction to an antibiotic. Jan. 31 of this year I took the last doseage of klonopin and am still recovering from some withdraw effects. I am telling you this as it leads to my following question.

Shortly after that on occasions and really only when I lay down at night, I started noticing a very faint pulsating tinnitus on top of my normal buzzing tinnitus. I only experienced it on occasions.

I had a follow up MRI in May which was clear.

A few weeks ago I had a bad cold and during that cold and now after the cold is cleared up, I am noticing a mild pulsating (feeling) or maybe a spasm in my left ear that seems mostly to happen when I turn my head, swallow, yawn, etc. Could I be developing middle-ear myoclonus? I've read about this on the internet, but am not sure if this is what I am experiencing. It is not all the time but it is disturbing that I developed a new symtpoms almost 3 years into this whole ordeal (have recovered some).

Can a cold spark this? Could it be nerve related and maybe induced by the use of klonopin (read this in my searches on middle-ear myoclonus)?

Also, I am always under constant stress from my condition. I have tight neck muscles and tension in my back. I also read from a chiropractor that stress/tension can cause this.

It seems as if you've done so much research and have experience with this so I thought maybe you could give me your input. I also have read this can be a symptoms of MS which of course, freaks me out. I don't know why since my problems started after that antibiotic incident and my MRIs/Scans have all been clear.

I've also read that this can go away on its own. Have you met others who have had it resolve itself. I just simply can't deal with any other problems on top of the ones I already have.

Thanks for your input.
Gloria
hi gloria,
try not to even think ms, your mris are normal and go with that. i think its too early to say if it could be myoclonus, i have heard of it going away for people. it could just be left over congestion from the cold. i have heard that coming off klonopin and other drugs can trigger movement disorders. they think mine was triggered by a virus. they just dont know enough about this type of myoclonus to say what causes it, in fact most drs have no idea what it is and are unable to diagnose it. i wonder if the antibiotic could be the culprit, i was on z pack and was hit with suspected VN, although they were never sure, and the myoclonus develpoed. i have been told that nerves can heal and if they do it can take 5-6 years, they think i have nerve damage from a virus......now, i will never know for sure, thats the best we could come up with. give this a little time, it could simply pass. if it seems to change or progress, then you have options.
take care,
lib

 
Old 09-24-2007, 07:46 PM   #5
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Join Date: Feb 2005
Location: Pittsburgh, PA
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gloria2936 HB User
Re: For Lib - Middle-ear myoclonus

Hi Lib,

Thanks so much for your input. I value your opinion. I know you've been on the board for awhile and have read a lot of your posts even though I didn't have this problem until recently.


How long after the VN did you develop the myoclonus? How many years has it been now all together for you?

Thanks again for the reassurance and information. It was better today; it really freaked me out yesterday as it was happening throughout the whole day which it has never done. I'm hoping you are right and it is just probably some leftover congestion from the cold I had a few weeks ago. It is such an uncomfortable feeling.

Take care,
Gloria

 
Old 09-25-2007, 05:32 AM   #6
lib lib is offline
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lib HB Userlib HB User
Re: For Lib - Middle-ear myoclonus

Quote:
Originally Posted by gloria2936 View Post
Hi Lib,

Thanks so much for your input. I value your opinion. I know you've been on the board for awhile and have read a lot of your posts even though I didn't have this problem until recently.


How long after the VN did you develop the myoclonus? How many years has it been now all together for you?

Thanks again for the reassurance and information. It was better today; it really freaked me out yesterday as it was happening throughout the whole day which it has never done. I'm hoping you are right and it is just probably some leftover congestion from the cold I had a few weeks ago. It is such an uncomfortable feeling.

Take care,
Gloria
hi gloria,
for me it all seemed to start together, the vn and annoying ear popping, then over a period of months it developed into the myoclonus, at first it was thought to be p e t......but in time we figured out otherwise. to this day i am not positive i had vn, i very well could have, or was it just the myoclonus develpoing causing all the symptoms. somethings i guess i will never know.
the good thing here is, in the event you do have myoclonus, i can point you in the right direction. take one day at a time for now, it is rare and chances are with the cold it has to do with that.
hang in there,
lib

 
Old 09-25-2007, 08:46 AM   #7
Senior Veteran
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Join Date: Feb 2005
Location: Pittsburgh, PA
Posts: 1,147
gloria2936 HB User
Re: For Lib - Middle-ear myoclonus

Hi Lib,

Thanks for taking the time to share your experience and information with me. If it continues, I will definitely give you a shout out.

Take care and best of luck to you.

Gloria

 
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