ETD causing me physical and emotional problems.

Hi Tanney 

Many thanks for you post, I had numerous tests done in January, but my hearing wasn't impaired. I did have a test (and i'm going to sound completely daft here as I have no idea what it's called) whereby they put a thing in my ear to test the pressure of the eardrum? My right ear was fine and showed a good rise and fall arch on the graph, my left ear was completely flat.

I wish I'd got them to write down the results as I was so nervous when i attended the appointment a lot of what they said didn't quite register.

I have tried the nasal rinse, I did this for 3 months last year but noticed no improvement, I also read elsewhere that doing this can ofen aggrivate the issue? Do you have any more information on this? 

I think the sedative would be a good step forward, Are you based in the UK or America? I will mention the Ativan when I next go, if this is a drug based in the US, perhaps we have a similar alternative in the UK?

I am on a steroid nasal spray at the moment called Avamys, I have a bit longer left on this, I am using it twice daily.

I have lowered both my caffeine and alcohol intake considerably, I no longer drink tea as I have given up milk, and I am not a huge fan of black coffee.

Thanks for all your advice, I think i'll start to take steps to be a bit more careful in the garden as you mentioned as well. Ideally i'd just quite like to know what's causing it, it just seems there are no answers for anyone with this kind of issue.

Many Thanks

Anna May

Hello again!  My nurse and I discussed the nasal rinse she said it's good to do but only 2-3 times a day otherwise it could aggrevate the problem.  Ativan is available in England, it is called Lorazepam, but it is very mild. Diazepam works much better   

Have you had a blood allergy test done to determine if you are allergic to pollen?  Mine all came back negative.  xx

Hi again, Annamay.  Ativan is also known as Lorazepam.  I take 0.5mg three times/day for relief of Meniere's Disease symptoms.  MD is an inner ear disfunction with symptoms of vertigo, ear fullness/pressure, hearing loss in low decible range and tinnitus.  The Ativan helps "sedate" the inner ear nerves that send impulses to the brain.  Your symptoms are NOT consistent with MD but might benefit from the sedative.

Regarding the sinus rinse.  Make sure you gently squeeze the bottle of solution when administering it into the nose.  If you apply firm pressure that could result in increased aggravation to your Eustachian Tube problem.  The frequent nasal rinse is only for eliminating allergins from nasal/sinus passages.  

I'm from USA.

best of luck!

Thank you for this Tanney. xx

Mine came back negative too.  However, like my ENT consultant told me that there are thousands of things outside and they can't test for every single one.  I KNOW I'M ALLERGIC TO SOMETHING OUT !!  A year or two back, a time when ears were behaving themselves, I went for a walk with friends, we walked through archway of hedges, I got a small way through and my ears immeditely blocked up.  I had to come back and take an antihistamine....so that proved it to me.

Anne

Just to confirm everyone, (I'm getting lost between threads) I'm hopeful as the doc has given me the oral steroids mentioned my Anne.  I took my first dose today, I have my hearing test on Thursday.  I'll keep you all informed.  Thank you so much all for your input. xx

Morning Alexia,   I'm up at 4:30 am a side affect of th Prednisolone, unable to sleep.  However, a small price to pay for having completely no problems with ears, congestion and sinus.  Sleep will rsume once tablets are finished.  I'm interested in the dosage you were prescribed.  When the problem is bad, as mine was, you definitely need the reducing method.  I've been taking 8 5mg tablets daily for 5 days, then 6 for 5, then 4 for 5, then 2 for 5 days and finish.  Not too sure who has also just been given the Prednisolone, I think it is Miss00623 and I think she is taking 30mg a day for a week then finishing.....a little abrupt finsih for my own liking and whena problem is chronic, like all ours seems to be, a  longer course I feel is neccessary.  But if they work for you that will be great !!  I too lose threads on these discussions and I'm now finding that they no longer come into my in box but in Trash....wonder why that's happened.  Anyway Alexia good luck with the meds and hope you'll soon find enormous relief from this horrible condition.

Anne

Good morning AnnaMay.  I'm sorry you have had such a bad night and morning.  Since my ETD I sleep like a rock - because I can't hear anything!  I must say I am jealous of your popping and cracking, when my ear makes the slightest noise it gives me hope that it is clearing itself.  My doctors are as bad as yours.  I have to walk in and tell them I insist on something happening.  I printed Anne's letter out, telling her story of meningitis etc. and handed it to them yesterday.  That's part of the reason I got the oral steroids.  

Getting your bloods done is a good idea although all mine came back negative, it made my diagnosis change from allergic rhinitis to chronic rhinitis which they believe is causing the ETD.

If my hears are not OK when I ago for my hearing test I am going to speak to the audiologist about referrel to an ENT.  I know how hard it is getting referred, but when they realize you know what you're talking about they seem to be a bit more reasonable.

Good luck and please stay in touch.  Are you o FB?

Alexia

Hi girls, Annamay & Alexia,

It make me feel so sad to read of your plight Annamay and you shouldn't have to go into a doctors surgery and worry about how you're going to discuss your problem.  Come straight out with it and tell him/her straight, that you've had enough and it's affecting you mentally now and something has to be done.  I'm sure if you were on Prednisolone you would be feeling so much better by now and give you time to sort it out before it returns....and it probably will !!  Like Alexia, tell the doctor about my experience of ETD and how potentially it could turn serious.  A doctor wouldn't leave you without antibiotics if you had a sinus infection.  Look back over my posts and I'm sure you've already read it and do as Alexia has done and take a copy and show the doctor.  The crackling is in fact a good sign that maybe things are on th move....maybe it will just pop on it's own soon.  Try gently pinching your nostrils together and blow, repeat it 3 times, each time just a little harder.  I hate it when the ears are so clogged they just won't do this.  A part from doing what you already are, inhaling hot water for at least thirty minutes when they are that clogged, there really isn't much else you can do.  Try a decongestant, like Sudafed.  I can't take these as they make my heart rate go up, but they do work for some people.  Keep forgetting, are you in the UK Annamay ?  A referral should be easy enough, but you'll just have to wait being NHS.  If you've got a private hospital near by like I have, go there instead they have all different consultants working in them during the evenings.  I do this whe I desperate.

I'm on f/b if you'd like a private conversation

Anne

Hi again Annamay, I've replied via Alexia, see my post to her

Hi Anne, hope you are feeling a little better.  I am on my second day of meds   I also use a Otovent balloon, I find it a little bit more effective than the pinching nose manouvre.  Any idea if it is bad or good to do this many times a day, as I do love the sound of my ears crackling and popping - it gives me hope!  I am on FB my name is Alexia Hamilton-White xx

I do it all the time when mine are blocked, just can't help myself.  I'm sure I perorate the eardrm myself by doing this, but I don't care, as then I can have yet another microsuction and get relief for a time   I'm glad your are making noises, it's when they are really plugged with no noise that it's so much worse and then probably harder to clear without steroid tablets.  If this continues, do ask for some, you will be amazed at how good they are at sorting this problem out.  Your ears must be very inflammed for still no movement,  I'll friend you

Hi Anne, I got the steroid tablets yesterday  This is my 2nd of 5 days on them.  I am going to call doctors about your good advice about tapering off - I read the same thing in the leaflet once you had mentioned it.  Oh great ballons, I have just ordered some more.  Happy to friend you on FB, I am oinline all the time now, because it's too much stress trying to hear anything. xx

 

Is it hard blowing a balloon up via the nostrils ? I can't even blow one up via my mouth lol

I find it esier to blow up the nose balloon, and I get so much satisfaction from the crackling noise.    Good luck.  

Hi ladies,

I've used the otovent balloon also. Have you tried the manoeuvre where you blow it up fully with your mouth or nose, take a mouthful of water, hold it over one nostril and release the balloon at the same time as swallowing the water? I will try and find the link the the video that suggested this. It provides me with mild relief but could work well for you!

Thank you Anne once again for your post, I will definitely print it off and show it to the doctor, I do live in England, on the Isle of Wight so no private hospitals here, we only have the one hospital witch unfortunately has gone into special measures this month so everything is running even slower than usual. But I will definitely show the doctor your post. I can't help but feel because I'm only 26 they don't really take me seriously. The first time I saw a doctor I was in tears over this and he sent me on my merry way with not even as much as a tissue. Although I have to admit the following locum nurse I saw was a bit more sympathetic. I think right now my focus is on handling this issue mentally, as I know I am no good to anyone let alone myself unless I sort my head out. I also have an appointment at a reputable health food shop on Monday to see a specialist there for a histamine and food test. I am hoping to make an appointment with the doctor on Monday too so hopefully by tomorrow night I will have a bit more of an answer. I will of course let you and Alexia know. I'd like to thank both of you while I have the time. It's been incredibly warming to know I'm not alone in this. It has made me feel so isolated and I can already tell that this group has helped me take the steps to handling it Day to day. Thank you. X

YW Anna.  I do believe yours is a temporary problem and not too serious as you have the crackling and popping, which means your ears are trying to fix themselves.  Anne and I do anything to get that sensation! xx  Talk to you on FB

I do hope so, I just wish there were a way to find out what's causing the constant blockages so I have something to work with. I do believe you're right, that the popping is a good sign. However it's that that is driving me so crazy. I know my anxiety definitely makes this seem a million times worse so I'm hoping once I can get a hold on that I'll be able to be more positive.

I finally spoke to my mum last night about how much it was affecting me (I don't like to worry her) who told me that years and years ago she suffered with a nasty flu which left her right ear severely blocked, she had it for 7 years but eventually it cleared but it still comes back on the odd occasion. I was obviously too young to know it was happening to her At the time. I'm wondering now if this type of issue runs in our family as my brother has always suffered from sinus problems also. thanks once more for your positive vibes. The human body and mind is a bizarre thing!

Hi Anna.

Yes my sister has had sinus problems all her life (She's 65 I'm 60) so I think it could have a biological link.

Enjoy your popping and crackling, it's a good sign.  I wish I could get it!

That's interesting about your sister, I'll keep my fingers crossed that one day you'll get the popping too (sounds odd to want to inflict this onto somebody!)

how are you finding the new tables that the doctor prescribed you? It must be day 3 by now? X

Afternoon Anna, you are so welcome my love and so happy both Alex and myself have given you a little comfort to this wretched problem we all suffer.  I can't remember if you too are on Prednisolone, or are you going to ask for them tomorrow.  Far be from me to tell you what to do, however, I really think they are what you need to get this problem sorted and asap.  When my ears are clogged I get a lot of crackling to...swollowing and chewing.  At least knowing they are crackling does give you scope to pop them, it's when there's no noise it mean they are well and truly blocked.  Today I started my 3rd week of Pred and they've certainly done it for me.  I've been on them many times before and sadly, this blessed problem always returns, but the few months relief I do get before it's back is just wonderful.  I've heard it all now, yesterday Alex tod me she'd sooner go through the cancer operation she went through than suffer ETD....that's how rough it makes us all feel.  Hearing your own voice when you speak, feeling deaf, just a few of the things it causes.  Persoanlly, paying out for those tests you're about to do will prove completely nagative, as mine did many years ago.  Even having the allergy tests done via the hospital all came back negative, except to tree mould in the Winter and cats and dogs.  My ENT consultant has said that there are millions of allergen out there and they couldn't possible check for them all.  I think they use what the majority of people are sensitive to...well, unfortunately I'm not in that majority and I'd love to know all the things that afffect me.  As I've said in previous message, I know house dust is very bad for me.  My house is super clean, but the dust will always be there.  Looking through a window on a Summers day, the sun shining through the window I can see all the dust flying in the air....where the hell does it all come from.  Build up your immune system and take a daily Echinacea from Holland & Barrett and it wouldn't hurt to take a m onths supply of Acidophilus (good bacteria) for the gut, and a good multivitamin.  All of these I take plus an extra vit D, as since the meningitis I'm unable o lie in the sun...I'm quite light sensitive with my eyes now.  You said you take a daily antihitamine, don't forget that !!  Our problem could all be an inherited problem, my father suffered sinusitis dreadfully, I do too.

Take care Anna and if you try hard to relax (easier said than done with this) it may help.

Always here if you need a chat

Kind regards Anne

Nice to see you again ladies.    

I can't begin to tell you how wonderful it feels not to be alone with this and to read Anne's great advice.

Thanks for the advice on the vitamins Anne, I'll order them now.  A also read that Evening Primnrose Oil is good for Post Nasal Drip, which, in my case, led to this.

Yes, this is day three of my Prednisolone.  I thought I was feeling better this morning, but took a downward slide this afternoon.  I feel as though I have a head cold and will have a "lem sip" for that.

Glad you have some relief Anne, may it continue for you.

Enjoy the end of the week end, please stay in touch <3