Valsva maneuver question

I cant use steroids. I have optic nerve pallor. Another dumbfounding thing but the specialist i saw said from mono long ago and felt that was from that. 

I lately have been ear twitch. Inside my my ear. Im so lost what to do. Ent seems useless. Really useless. They make me feel im over dramatic and to just let time pass and hope it all  goes away. No tests done other then auditory ones. Gp is clueless but he did a doppler all was fine. Newer is dry eyes now. It all has to be connected im a person not little parts.

whilst they leave me with these weird things i get anxious. I dont know anyone who wouldnt. Mr. Dr. Google makes it out that these doctors are so prudent and exams so thorough but they arent. Or not the ones i have seen. I have only saw one ent pa (aast)who was kind but useless and an ent dr in the same practice who has this theory ignore all and let time pass and hope it fixes itself. Mind you highly rated too. Oddly. I guess i have to be more aggressive in my own care and get new ent. It just becomeing very time consuming and more waiting and i have lost faith in doctors. Clearly they do not read google or they know to thouroughly examine their patients and run tests to rule out stuff. Not just look in with a ear scope and chit chat for a few minutes. So weird. You cant see into the inner ear. Etd was noted mild. Nothing else really said.

im in the usa and this stuff get costly. Finding really good doctors (proactive ones) is a harder task.im not sure why but it seems many are lazy or dumb, id hate to think dumb so i go with lazy. 

It's a shame you haven't read a post on here about the

person (can't remember their name) who has been

prescribed Xanax to stop the spasms in the tensor

tympani muscle which can shut off eustachian tubes.

It's a muscle relaxant....anything worth a try.

Aural trigerminal nerve irritability.

Anne

I guess I'm lucky compared to many who have this affliction.I have no pain at all,just a feeling of pressure & a slight loss of hearing

I'm in U.K.Lisa but more than happy & prepared to pay privately if the medics

could find a treatment.I've looked for some time,but sadly the consensus seems to be that there is no treatment or cure.

I suffer no pain either Michael, it's just the discomfort of the clogged feeling, something I've been without for over a week now.  Fingers crossed it continues.  Pain, being an earache is usually when infection is present, like I had prior to the bacterial meningitis, which was be 23 ears ago on the 11th of this month....a period I will never forget as long as I live !! 

TMJ stands for Temporomandibulor Joint.  I suffered that a few years ago when my dentist drilled and fitted a gold crown to my lower tooth.  He was over zealous and pushed down too hard.  Once the dumbness wore off I couldn't open my mouth the pai was so bad.  It took appromimately three weeks to heal.  Not too sure if TMJ would cause Eustachian Tube Dysfunction.

Anne

Thank you Anne for that information.Like you I very much doubt that TMJ is related.I've tried inhaling with various types if remedies from Friar's Balsam to Olbas Oil & while Olbas Oil helps a bit the relief is very short lived.It would appear that there isn't any treatment ,let alone a cure for ETD.If anyone reading this can suggest anything different,I'd love to hear from you.

Morning Michael,  did you read one of the posts where someone was prescribed Xanax to stop the spasms in the Tensor Tympani Muscle, which can shut off Eustachian Tubes.  Obviously a muscle relaxant.   See if you can find the post.

Acupunture

I've tried acupuncture twice previousy for other things & found that it doesn't work at all for me.Thank you for the suggestion though.

Michael.

P.S. Interesting that not one person that has replied has had any real lasting success with ETD

Hello Anne.Yes I've got the posting & seeing my G.P. on Thursday next.Not very hopeful though.

My friend is a Reflexologist....she tried to work on my ear, to no avail...something we've got to learn kto live with I guess.  My ears are fine at the moment and didn't end up taking the Prednisolone steriod tablets....I'll keep them for the next time ears block.

Anne

Glad to know that you've had some partial success Anne.

Thank you Michael.....and I'm still good.  Maybe it's the different

Seasons that could affect us.  I know I'm allergic to some

trees and house dust, cats and dogs.  I remember a few years ago whilst with friends.  We went for a walk under a covered arch of bushes, my ears blocked up immediately and had to turn round walk back and take an antihistamine Trying to keep dust away is

impossible, no matter how many times one cleans

Anne

There was an interesting point that one of the people in this dicussion brought up.That was that he has quite a lot of nose drips.I have that too,but just didn't think that it might be connected to ETD.

Is that Post Nasal Drip you're suffering Michael, when you can feel mucus going dow back of your throat ?  Not usually associated with ETD, more likely sinus issues, like mine.  Definitely try the Nasal Rinse every morning to see if that helps.

Anne

No Anne it's not at all like that.It's just a drip like I've got a bit of a cold but without feeling like I've got a cold.It doesn't go down my throat at all,but drips from my nose.That's the reason I didn't associate it with ETD

Hi Michael, sounds like allergy then.  Try a daily Citrizine antihistamine tablet, that should do the trick.  I have to take a daily one too for same reason.  Luckily, I rarely suffer colds, but like you've said with nasal drip it's like a cold.  Try the Nasal Rinse too, to wash out any allergens and mucus.  So helpful with different people on this site giving their opinions.  Also in my opinion, for what it's worth, allergies in my experience can cause ETD.

Anne

Are you in the U.K. Anne.I ask because if not, many remedies available in the U.S. & Canada & elsewhere are the same,but under different names.

Kent in the UK Michael

Anne

I am new to this site and I did not realise just how many people are suffering with chronic ear complaints. Also, just how long and difficult it is to get help!

I have been following this post section of yours, as something you mentioned made me look twice. I hope I am not asking anything that you have already answered, but you say you have seen ENT specialists. Have they given you a scan. If so was it clear? For years I had all the different symptoms that are being discussed. I was told I had allergies, nasal polyps. All that time I was spraying etc trying to get relief, when I also was told it's now rhinitis. Things went from bad to worse when I was eventually told by Doctor you had better see ENT. A large lump was appearing under my ear/jaw. Things moved pretty fast then. I am suffering with my ear the same as everyone else. But the nose drip without a cold was a bit more than I bargained for. Aggressive Inverted Papiloma. It's very rare and not something a doctor would think about, but ENT I am hoping have covered all these different things for you! 

I was concerned about posting this, I don't want to worry anyone, but if there is in anyone out there that has not been scanned, don't spray for to long before getting a more thorough check up.

Hello Sue,

I was scanned years ago and on my ears too.  Plus hearing tests....hearing obviously down as always clogged.  I hardly see my GP with this problem, as since the meningitis, I'malways seen by the expert.  Was visiting a London hospital for years, but now see a top ENT consultant at my local hospital, in fact he is Clnical Director.  I will have to Google Papiloma, don't know what that is.  Allergic Rhinitis with ETD go hand in hand, in my opinion.

Regards Anne

Just googled that.  Did you feel the lump ?  Didn't realise you can get that virus in the outer ear canal....very rare I would think, as there are too many of us suffering from ETD to all have that virus.

Hope all goes well and stay in touch give us up-dates

Anne

Hi Anne,

AIP are tumours, they are not cancerous. But have a high rate of change if they cannot be fully removed. They are treated as cancer from the outset as they grow inwards through bone and tissue. Have had several operations to get rid of them. They are a bit of a nuisance, to put it mildly!

Pleased you have experts on your case, I'm at Bristol. Will be under them for a few years yet, they say it's a lifetime follow up, I go every 6 months at the moment. 

This hearing is frustrating though, it's enough to drive anyone bonkers!

All my problems are on the right side of the face/ear only. Must be awful to lose your hearing completely.

It was the rhinitis post that made me take a second look. The nasal drip was to the front and not to the back of the throat.

But your right, there's far to many people with this to all have the same thing.

But I would stand by the post of don't spray for to long if your not seeing results without pushing for a second opinion or a scan. My problem started in the nose.

Thank you for that advise and will certainly speak with my ENT consultant when I next see him in six months time.....in the mean time I'll keep using Nasal Rinses, Flixonase and  antihistamines.

I wish you the very best of luck in getting sorted out.

Kind regards

Anne

Dear Sue,Not been on the site too long myself,but some of the comments can be helpful.I've had both scans at a major hospital & thankfully clear.One specialist told me I have ETD the other said there was no evidence of it.I then consulted a third specialist who advised me that it didn't matter what the other two had said because there is no treatment & no cure.All I know is that I'm not in pain ,but the pressure inside my head & ears is difficult to live with.It's like having a bicycle pump pumping air into the ears.Some relief happens if I lay down for half an hour or so,but returns fairly soon.

Trust this is some help to you.

Michael

Hi there Michael, thanks for your response.It sounds awful I know, but, it's such a relief to find other people with similar problems. I really was beginning  to wonder what was happening. I feel almost detached from the world, everything seems so far away. I'm finding all the posts really helpful. So much info that I have never heard of before. Anything at this moment is worth a try. My thanks go out to all of them.