please please help me

[lib]

hi,
please help me!!! i am sitting here in complete devestation, i have had horrible ear symptoms for a year.
tell me please if this sounds like s.m.
popping ears
hearing the eardrum move when talking
hearing the same sound to outside sounds, dishes, drawers, other voices
feeling like air is being breathed into the ears
thumping
eardrums sensitive ti q tips, sounds like a ripple
snapping sound behind nose.
my doctors think this could be my problem,
i was given baclofen.....does this sound right?
i also get the same noises in the ear when on the phone in the oppisite ear...anyone?
thank you for your help.. lib

[Lisa]

Lib,

first and foremost, I have utmost sympathy for you.

I too have most of the symptoms that you have, though i am curious if you could elaborate on a few for me just so i have a little clarification....

With regard to your popping ears, do you mean popping like to release pressure like one would on an airplane? or do you mean that they make a popping sound?

I too hear the ear drum move when talking, and i get in in the oposite ear when on the phone.

With the Q-tips.... my advice is to stop using them immediately, they only do more harm then good....
They end up compacting the wax in your ears, and can cause pain, possibly rupture your ear drum or as i have heard of other people having happen, the end can actually fall off in the ear canal (YIKES)

Now in regard to the Thumping, is it thumping like your pulse? or is it thumping similar to the reaction of your ear drums?

and could you further clairify for me the snapping behind your nose? is it a sensation or a sound or possibly both?

Does baclofen sound like a proper choice of medication? I have never taken it before myself, but upon the little research i have done just now, it seems like a pretty harsh muscle relaxant/anti-spastic,www.medicinenet.com/baclofen/article.htm and you might be (this is my un-educated, personal experience advice) better off on an anti-spasmotic/anti-epileptic drug to start like clonazapam at a very low dose multiple times a day. Several of us have had a little success with clonazapam, on the plus side of it being an anti-spasmotic it also is prescribed for anxiety, so if your ears are making you crazy, it also helps for some people to take off a little anxiety. On the down side, because it is a benzodiazapine, it can be addictive, and it is hard to come off of. You cant quit it cold turkey, and have to wean off of it, and coming off of it can be mildly uncomfortable for some people.
Now back to your sensation of air being breathed into ears, this is going to sound like a silly question, have you ever had tubes in your ears and are they out?
( because i have tubes in my ears and i have this sensation all the time) This also can be a symptom of Eustachian tube dysfunction (ETD).

I hope that answers a few of your questions. and that I can be of further help upon your response.

I do appoligize for my response being all over the place.
If you need any clairfication on anything please do not hesitate to ask.

Take Gentle Care

Lisa

[lib]

hi lisa,
thank you for responding to me. i guess i should say, i had surgery for p.e.t. open eustachian tubes. i still have many distressing symptoms and it is believed i have more wrong.

the popping is like the eustachian tube popping, i also get strange pops other than that. i get it when i swallow or talk.

i am not using q tips on a regular basis, thats the strange sensation i get if i do, or just with my finger. can you relate to anything so far?

i get thumping and i hear my heartbeat, i have no idea why i get both or what they are related to at this point.
i thought it was the p.e.t. but i dont know, do you hear your pulse at all?

the snapping is behind my nose up in my cheek area, it snaps when i talk and sometimes when i swallow, i hear it and others hear it also its very loud. its very upsetting, no one can say for sure what it is.

i was taking a small dose of klonopin in the spring, i probabley did not take enough, it did not help.

i have not had tubes but they were mentioned as an option, i dont know if that could help me, if i have p e t it could make that worse.

i would prefer to cut the muscles, one dr. suggested that the other thinks it could make things worse. and gave me this prescription, i am afraid of this medicine, but i have to get to the bottom of this fast.

lisa i work in a salon, it can be unbearable, how did you get disability?
what are your exact symptoms? what do you take? does it work?
i read in a post they think yours is related to the semi circle in the inner ear, is that correct.
that is what my dr. specializes in.
i am feeling hopeless, both ears and face are a mess and i have a child.
i cant stand to talk, the ears go crazy everytime, do you get that also? if i cough, talk, anything i get this horrible sound and feeling.
also, when you swallow, do you get any sensation in your ears? have you ever heard of the snapping face.
the meds are to break the cycle of spasm, is that even possible?
do you know of anyone who has had the surgery?
sorry for the bazillion questions, i am desperate for some answers, i have been everywhere, every dr., for a year and i dont know what all is wrong for sure. thank you so much for all you have done with the site and corresponding with me. i think your my life line at this point.
sincerley, libby

[Lisa]

Lib, i haven't forgotten about you. my computer has crashed twice upon me writing up my response.
Being so late I will try again in the morning.

Take Gentle Care

Lisa

[Lisa]

Hey Lib,
I am so sorry that you are having so much trouble finding out what is wrong. It really is so frustrating. I totally understand where you are coming from.
I am just going to answer some of your questions here, forgive me if i jump all over the place.

lib said:

i am not using q tips on a regular basis, thats the strange sensation i get if i do, or just with my finger. can you relate to anything so far?

Now with regard to a strange sensation upon having objects inserted in the ear, at times i do experience a rapid popping sound, and feel pressure, and dizzyness, aswell as sometimes pain. I get it often with ear plugs and cant wear them at times because they exagerate my symptoms.

lib said:

i get thumping and i hear my heartbeat, i have no idea why i get both or what they are related to at this point.
i thought it was the p.e.t. but i dont know, do you hear your pulse at all?

I get both thumping and heartbeat. I only started to hear my heartbeat after i had the tubes put in. I alwasys assumed that it was due to the incresed blood flow to the area to help it heal, plus the fact that i now have a foreign body in my ears. have you ever been checked to see if you have a fistula or a neuroma? I also too get the thumping. This is what the doctors feel could be part of the stapedial spasms. Also in regard to my pulse, sometimes i hear a swooshing sound, gentle like waves in the ocean, i know its bloodflow in my ears. Do you ever have this?

lib said:

the snapping is behind my nose up in my cheek area, it snaps when i talk and sometimes when i swallow, i hear it and others hear it also its very loud. its very upsetting, no one can say for sure what it is.

From my understanding of the position of the eust. tube. the only thing i think it could be is P.E.T. or maybe Palatal Myoclonus.... To be honest i've never heard of anything like that before. I will keep my eyes open to see if i find any more nformation about this on the net.

lib said:

i was taking a small dose of klonopin in the spring, i probabley did not take enough, it did not help.

Karen, the other moderator here on the board takes a drug called trileptal and has had great success with it, she is almost symptom free. It might be of a benefit to talk to a neuroligist about trying this medication.

lib said:

i would prefer to cut the muscles, one dr. suggested that the other thinks it could make things worse. and gave me this prescription, i am afraid of this medicine, but i have to get to the bottom of this fast.

Now for P.M. i have read that they can inject botox to stop the spasms, I am not sure if they can do it for P.E.T. I know that atleast in canada it is not done for S.M. and no studies have been done on it to my knowledge. But it could be something to look into aswell, because atleast its not permanent, and if it does make things worse, you know you won't have to live with it forever, and if it makes things better you'd know that the surgery would help.

lib said:

lisa i work in a salon, it can be unbearable, how did you get disability?

I am on disability through the canadian provincial government. If you have a health insurance plan and live in the usa, if i am rememberin correctly i think that you may be able to get on disability through your healh insurance. It would be somethign to look into, as i can imagine the noise of the salon would be unbearable.

lib said:

what are your exact symptoms?

my exact symptoms, thats such a hard one to answer....

popping in the ears when exposed to almost all sounds,including my own voice, that movement of the ear drum sensation you mention, and snapping of the stapedius tendon dizziness, and nausia, pain, and pressure. I know that i have more symptoms then that, but i can't really remember the rest at the moment.

lib said:

what do you take? does it work?

I was taking both clonazapam and neurontin. I didnt believe they were doing me much good, and tapered off. now i realize that they had atleast a 40% relief of my symptoms, but i am really sensitive to the sedative nature of meds, and couldn't handle the fatigue, and all the sleep.

lib said:

i read in a post they think yours is related to the semi circle in the inner ear, is that correct.

I have been diagnosed with semi-circular canal dehiscence.
I don't really know what that means in regard to the rest of my symptoms, and what route we will be taking to deal with this problem. My specialist is away on vacation until the 27th.
Whatever you do, don't give up. I totally understand where you are coming from and how hopeless this can all feel.
When all of this first came on i began taking an anti-depressant because I became so depressed because it seemed as if there was no help for me.

lib said:

also, when you swallow, do you get any sensation in your ears?

At times i get sensation in my ears when i swallow and if i happend to belch.

lib said:

the meds are to break the cycle of spasm, is that even possible?

I have heard of this from a physician before. I think in theory its a good idea. thought i really have no idea how much success it has. I have been through the gammot trying meds. For me it would be a case of why not try another one.

lib said:

do you know of anyone who has had the surgery?

Lib, i do not know anyone personally who has had the surgery, but have read many text book cases and apparently most patients have had amazing success. because of the doctors lack of knowlege to what is causing the dehiscence, I myself would be hesitent to have the surgery. If you really feel that its the right route to go, make sure to have a second opinion, and be sure that they have gone ahead and done all the testing to rule out other causes.

Thanks for posting. I hope that clarifies things a little for you. And don't be sorry for asking questions. Its the best way to be your own advocate.

Take gentle quiet care

Lisa

[lib]

Lisa said:

Hey Lib,
I am so sorry that you are having so much trouble finding out what is wrong. It really is so frustrating. I totally understand where you are coming from.
I am just going to answer some of your questions here, forgive me if i jump all over the place.

lisa, thank you again for answering me. i think fate might have brought us together, i will explain further down.

Now with regard to a strange sensation upon having objects inserted in the ear, at times i do experience a rapid popping sound, and feel pressure, and dizzyness, aswell as sometimes pain. I get it often with ear plugs and cant wear them at times because they exagerate my symptoms..

mine is more a rough rippling sound, same as outside sounds makes.

I get both thumping and heartbeat. I only started to hear my heartbeat after i had the tubes put in. I alwasys assumed that it was due to the incresed blood flow to the area to help it heal, plus the fact that i now have a foreign body in my ears. have you ever been checked to see if you have a fistula or a neuroma? I also too get the thumping. This is what the doctors feel could be part of the stapedial spasms. Also in regard to my pulse, sometimes i hear a swooshing sound, gentle like waves in the ocean, i know its bloodflow in my ears. Do you ever have this?.

yes i have been checked for both, had the whole wack of tests and the special scan for sscd.
i do get some swooshing, definatley the pulse when i lay or bend.

From my understanding of the position of the eust. tube. the only thing i think it could be is P.E.T. or maybe Palatal Myoclonus.... To be honest i've never heard of anything like that before. I will keep my eyes open to see if i find any more nformation about this on the net.
.

i suspect it is a muscle in the e tube, it does not fit the classic p.m. at all.

Karen, the other moderator here on the board takes a drug called trileptal and has had great success with it, she is almost symptom free. It might be of a benefit to talk to a neuroligist about trying this medication..

i am going to see a top neuro at johns hopkins, he specializes in movement disorders

Now for P.M. i have read that they can inject botox to stop the spasms, I am not sure if they can do it for P.E.T. I know that atleast in canada it is not done for S.M. and no studies have been done on it to my knowledge. But it could be something to look into aswell, because atleast its not permanent, and if it does make things worse, you know you won't have to live with it forever, and if it makes things better you'd know that the surgery would help.
.

botox can make p e t much worse, i would have to talk to my p e t doc about that first.

I am on disability through the canadian provincial government. If you have a health insurance plan and live in the usa, if i am rememberin correctly i think that you may be able to get on disability through your healh insurance. It would be somethign to look into, as i can imagine the noise of the salon would be unbearable..

i am devestated at the thought of not working in the salon, i love my job, my clients are wonderful, its a huge part of my life. i may have to walk though if they can get me sorted out.

my exact symptoms, thats such a hard one to answer....

popping in the ears when exposed to almost all sounds,including my own voice, that movement of the ear drum sensation you mention, and snapping of the stapedius tendon dizziness, and nausia, pain, and pressure. I know that i have more symptoms then that, but i can't really remember the rest at the moment.
I was taking both clonazapam and neurontin. I didnt believe they were doing me much good, and tapered off. now i realize that they had atleast a 40% relief of my symptoms, but i am really sensitive to the sedative nature of meds, and couldn't handle the fatigue, and all the sleep.

I have been diagnosed with semi-circular canal dehiscence.
I don't really know what that means in regard to the rest of my symptoms, and what route we will be taking to deal with this problem. My specialist is away on vacation until the 27th..

this is where fate steps in.....lisa semi-circular canal dehiscenece...sscd
sscd was just discovered about 6 years ago by 2 drs at johns hopkins, dr carey and dr minor,
dr carey is my dr.! these guys wrote the book on it, and the treatment. i will tell you this dr carey is WONDERFUL!
in the event you want the surgery for this you only want a top dr to preform it, dr carey, dr minor and dr. poe (my p.e.t dr) another WONDERFUL dr. are the TOP specialists for this.
i know a few other sscd patients as well.
i know canadas has a certain health system, i would if at all possible try to get them to pay for a trip to hopkins.
have you had a vemp test done to confirm the sscd?
i can clearley see which symptoms are comeing from the sscd. i am about an hour and 15 mins from hopkins, if ever you decide to go please let me know, you have a friend and a place to stay here in virginia.
i think i know more about sscd than myoclonus at this point.

Whatever you do, don't give up. I totally understand where you are coming from and how hopeless this can all feel.
When all of this first came on i began taking an anti-depressant because I became so depressed because it seemed as if there was no help for me..

i am there right now, my hope is in the 3 drs i have who are working very hard on this...they are like no others..they call me, e mail, and confer with each other, truely amazing doctors who really care, not like the 7 fools i saw prior to finding my guys!

At times i get sensation in my ears when i swallow and if i happend to belch.
.

me too, does it feel like the burp blows the eardrums out?
as if it travels right up into the ears and moves the eardrums?
swallowing also sounds abnormal to me, how about you.

I have heard of this from a physician before. I think in theory its a good idea. thought i really have no idea how much success it has. I have been through the gammot trying meds. For me it would be a case of why not try another one..

from what i have read meds dont sound real promising
but they wont cut till i try.

Lib, i do not know anyone personally who has had the surgery, but have read many text book cases and apparently most patients have had amazing success.
because of the doctors lack of knowlege to what is causing the dehiscence, I myself would be hesitent to have the surgery. If you really feel that its the right route to go, make sure to have a second opinion, and be sure that they have gone ahead and done all the testing to rule out other causes..

lisa a dehiscence is an open area in the bone of the semi circle, it can be an errosion or it can happen from a head injury or just be a defect, once it is there it is there, the only way to get rid of it is to surgically patch it, i think they use bone cement,
this is a tricky operation, this is why i say if you decide to do something, only the top doctor, no one else messing around with the inner ear.
i would ask your neuro for the vemp if you have not had one.

Thanks for posting. I hope that clarifies things a little for you. And don't be sorry for asking questions. Its the best way to be your own advocate.
.

ok, now
when i cough, i get movement and noise,
when i burp,same thing,
when i talk it goes nuts sounds like the ears moveing and vibrating its aweful, all of this matches the myoclonus in your thinking?

what are you takeing now for the myoclonus anything?
the baclofen has done nothing so far for me.

Take care thank you! libby

Lib I hope you don't mind that i went ahead and fixed your quotes as you had intended.

[Ricochet]

Lib,
I have suffered for years with a popping noise in my right ear that was triggered by external noise and my own voice.

I would have epsiodes that would last for weeks and then go away for months and then return. It finally got to the point where it was happening constantly and never getting better.

I saw a neurologist and he prescribed clonazepam and Trileptal. At first he just tried the Clonazepam and it didn't help. He then added the Trileptal and within a week the popping stopped. It has been almost a year and I have had almost no popping at all.

He relates this spasm to a tic you might get under your eye when you feel an involuntary twitch.

I was prescribed 300mg twice a day. Just recently I had a few pops and he increased my p.m. dose to 450mg. He says that is still considered a very low dose of the drug.

I wish you luck with your problems,
Karen

[lib]

hi karen,
i am off to a neuro the 15th, he specializes in movement disorders like myoclonus. you are the only person i have found that meds have worked i tried a muscle relaxer for a week it was terrible, the side effects!
i myself am not afraid to cut the muscles, one said to do it and the other does not like that.
did you ever or do you ever feel like your eustachian tubes are involved?
pressure changes?
i a sure you have read i have a horrible snapping sound behind my nose, not sure what it is yet, have you heard of this?
thanks, happy your better! lib

[Lisa]

Hi Lib, sorry its taken me so long to reply, my computer has had a little attitude problem for the past few days.

After I was diagnosed with Sccd I went to the library and came home to the internet and did some research. I am a little frustrated to have learned, or that it appears that not alot of information is available with regards to treatment in canada. With the lack of response from my Specialist, and the fact that his secretary is away until the seventh, i can not get in touch with him to see what route we will be taking for anything. Its rather frustrating to once again be hanging in limbo, where i have knowledge of what is wrong, have researched a have no idea what direction the dr wants to take or suggests we should take to find some resolution.

I think with regard to sscd, that you are very lucky to be in the part of the world that you are in, and have the top doctors available to you.


You were saying that you know a few other Sscd patients, as well, if you would like to have them get in touch with us here that would be fantastic, if there is interest i would be more then happy to add a Sscd portion to the board.

now you asked me if i have had a vemp test done, and its rather ironic that you ask me that because the same day that i came home with my diagnosis, i researched and have written in my little notepad that i want to have a vemp test done.

Now you asked me when i belch does it feel like the burp blows the eardrums out? as if it travels right up into the ears and moves the eardrums?
I sort of get that sensation, but often times its also very painful. and yes if seems to travel up the et and moves the eardrums.
And I do agree that swallowing does sound abnormal to me.

And to answer your question, though i am not a physician, just through my own research it does sound an aweful lot like SM.

Oh and one last thing, i am not taking anything on a continuous basis for the SM. I just can;'t handle the sedation anymore. I take clonazapam when it gets absolutely unbarable otherwise i just try to sleep it off.

i hope i answered all your questions.


Take Gentle Care Lib

Lisa


Oh, P.S.

with regard to the clicking sound behind the nose, i noticed mine does a really quiet sounding click in the morning when i am laying in bed. I think its my sinus'??

[lib]

Lisa said:

Hi Lib, sorry its taken me so long to reply, my computer has had a little attitude problem for the past few days.

After I was diagnosed with Sccd I went to the library and came home to the internet and did some research. I am a little frustrated to have learned, or that it appears that not alot of information is available with regards to treatment in canada. With the lack of response from my Specialist, and the fact that his secretary is away until the seventh, i can not get in touch with him to see what route we will be taking for anything. Its rather frustrating to once again be hanging in limbo, where i have knowledge of what is wrong, have researched a have no idea what direction the dr wants to take or suggests we should take to find some resolution

I think with regard to sscd, that you are very lucky to be in the part of the world that you are in, and have the top doctors available to you.


You were saying that you know a few other Sscd patients, as well, if you would like to have them get in touch with us here that would be fantastic, if there is interest i would be more then happy to add a Sscd portion to the board.

now you asked me if i have had a vemp test done, and its rather ironic that you ask me that because the same day that i came home with my diagnosis, i researched and have written in my little notepad that i want to have a vemp test done.

Now you asked me when i belch does it feel like the burp blows the eardrums out? as if it travels right up into the ears and moves the eardrums?
I sort of get that sensation, but often times its also very painful. and yes if seems to travel up the et and moves the eardrums.
And I do agree that swallowing does sound abnormal to me.

And to answer your question, though i am not a physician, just through my own research it does sound an aweful lot like SM.

Oh and one last thing, i am not taking anything on a continuous basis for the SM. I just can;'t handle the sedation anymore. I take clonazapam when it gets absolutely unbarable otherwise i just try to sleep it off.

i hope i answered all your questions.


Take Gentle Care Lib

Lisa


Oh, P.S.

with regard to the clicking sound behind the nose, i noticed mine does a really quiet sounding click in the morning when i am laying in bed. I think its my sinus'??

hi,
still cannot figure out how to quote so i will do it this way so i can scroll up and reread.

yes i am lucky to be where i am, but these drs are avalible to the world, people come from all over, i know it is not easy but johns hopkins is the leader as is poe in boston when it comes to sscd. there is not a lot of info because it is so new, thats why i stress to you that not just any dr can treat this, look up the johns hopkins site and read about sscd there.

i will write to my friends and tell them about you and the board. they are both wonderful and have put me in touch with the best drs and supported me through this nightmare.

yes the drugs i have tried are not nice if you want to function, i am more inclined to cut the muscles but my local dr is very hesitant.
now what does your snapping sound like or feel like mine started last feb and has gotten louder and louder.
also my one dr mentioned tensor tympani syndrome, how were they able to tell that you had sm?
both it appears can cause similar symptoms but it seems tt can cause problems with the e tube also...when i swallow it sounds strange and sometimes i get cracks or clicks, for me i think more muscles are involved. also i get strange squeaks or sounds as if something is trapped in or around where the snapping in my nose is. sometimes i look at my symptoms list that is pages at this point and it looks like a nutcase wrote it out..another one; if i tip my head to the left i get a loud bone cracking sound in my ear can you relate? others can hear that too, if it were not for the fact that others can hear some of this coming out of my head i think i would have been commited by now.

i understand how it feels to hang in limbo with these rare problems, its devestating. but solvable over time.

is it ok to take the clonzepam on an as needed basis? i did not know that i thought you had to take it regularly or it could be trouble.

i will write to my friends now and see if they will join in, they could be a great help to you.
take care, lib