Desperte For Advice on ETs.
Posted , 8 users are following.
Hi all. I am at the end of my rope. After suffering from allergies for over a year - non stop. About 8 weeks ago, suddenly my ears wouldn't "pop". I've had the wax vacuumed out and my doctor keeps telling me I have blocked Eustachian Tubes. I've been given anti histamines, steroid nasal sprays, saline rinses, even a nose balloon. They do pop but they never "clear". It seems to be getting better then I wake up one morning and I'm half deaf again. The doctor tells me that time is the only thing that can cure it, but if time doesn't do it - there is nothing else that can be done. I am booked in for a hearing test next week, but if my ears would just POP I would be able to hear perfectly. Any advice is so welcome please.
0 likes, 51 replies
anne05078 alexia69415
Posted
Hi Alexia,
Sadly, I think you may be stuck with this. I doubt you've seen my past posts regarding this conition. I hate to repeat myself, however, for those that aren't seeing them I feel I should write down all I've been through with this problem.
Out of the blue in the 1980's while away with our touring caravan I woke up one morning to completely blocked ears, the most dreadful feeling. I later realised that during the night being on a campsite full of trees and bushes I'd breathed in pollen all night. We had to come home early and I visited the ENT hospital where I was prescribed antibiotics. My GP prescribed Benadryl antihistamines and eventually it cleared. However, it came back and I've suffered ever since. In 1994 I contracted Pheumococcal Meningitis where the mucus I'd made from the allergies had stuck in my eushachians tubes and turned bacterial, crossing the blood brain barrier. In hospital 2 weeks and suffered losing the sight in my left eye and hearing down a lot in right ear. I went on to have sinus surgery where polyps were found and cut out. I've been using antihistamines ever since, plus Flixonaase Aqueous Nasal spray. When it gets really bad, as it did last Christmas 2016, putting up with it for 4 months, being congested too and unable to breath, I ask my ENT consultant (whom I see twice yearly since my illness) if he would prescribe a reducing method of Prednisolone Steroid tablets, which he did, a 20 day course. I've usually have to be prescribed these every other year. Pollen has been exceptionally bad in my area this year (I live in England) Thankfully, they have done the trick, my ears are clear, sinus headaches have gone and all the inflammation has dried up. Steroid nasal sprays do work once you've been on them quite a long time, but as this is such a horrible condition ad hard to put up with, I find that Prednisolone is the only way forward for me to giv me a few months of relief. Due to the allergies I know it will build all up again. He found the polyps had grown back due to allergies and the prednisolone will shrink them allowing me to breth properly again, once the course has been completed. My ENT consultant won't use the Ballool dialation on me for whatever reason. I have regular perforated left eardrum, the hole is so tiny it won't allow the nasty thick mucus to drain properly, so I see him and he microsuctions all the mucus out, not at all painful, just very noisey, but the feeling after it's been done feels so wonderful. I have paid out £100 for the EarPopper doesn't work) I've also bought expensive machines that help to eleviate the house dust (something else I know I'm sensitive to) I use NeilMed Nasal Sius Rinse every morning, but someone on this site has recommended I use it twice daily, which I'm going to do.
anne05078
Posted
Sorry I clicked too soon and message went through before I could read over it and re-write mistakes I've made. You'll get the gist of it though. So you're are in England too. I think our weather plays a huge part with allergies. We should all live beside the sea out of pollen.
So that's my story and really hope this problem won't continue for you. Doctors really don't seem to take this problem seriously....blocked ears 'Big Deal' however, if they've never suffered with it no one knows how horrible and dibilitating it is....many people on this site are getting very anxious due to it. If your GP won't prescribe Prednisolone, ask him fro the stronger Nasal drops called Flixonase Nausules...lean your head over the bed to administer, they work quicker to rid the inflammation.
Sincerely hope you feel better soon.
Kind regards
Anne
alexia69415 anne05078
Posted
This is absolutely life changing information. Thank you so much. I am calling to make an appointment with my doctor right now to ask for Prednisolone. Thank you for the warning about Ear Popper - I was just about to shell out £100+ for it! I sure hope we all find some relief from this horrible condition. I just had to spend two hours in the car with someone that is also half deaf, but never stops mumbling and stuttering. I was about to hang myself!! No matter how many times I say "I can't hear you" people continue to mumble at me!
anne05078 alexia69415
Posted
Anne
michael11955 alexia69415
Posted
Dear Alexia,Just read my reply to annamay.It's negative ,but the truth.You've got to live with it for the time being.
alexia69415 michael11955
Posted
I just can't accept that! Even if I end up shoving a screw driver through my head I SHALL unblick these ears! xx
alexia69415
Posted
Well, here's something new. I started to read a book about dogs and it talks about the sensitivity of the inner ear to MRI scans. Well, guess what? I got this problem directly after my MRI scan.
michael11955 alexia69415
Posted
Perhaps it's just a coincidence.I had chemo & radiation 11 years ago & the medics looking for causes of ETD say that it could be that that has caused the onset.More blather,more looking for lack of real knowledge,more excuses .Rather like politicians
anne05078 michael11955
Posted
Quite agree Michael, because this condition of ours isn't life threatenting (of course so long as you don't succumb to meningitis as I did through it) they don't seem to care. Until I joined this group I had no idea just how many suffer from it. Years ago when I became so desperate, I wanted to shove a knitting needle down into my eardrum to allow fluid to drain. Of course that would have been ridiculous but that's how I felt. As I've said the only way forward to one can't cope any longer fall back on Prednisolone....we need a break from this horrible condition. I'm really good at the moment and hope it continues, couple more weeks of Pred. and they are finished.
Anne
alexia69415 michael11955
Posted
So sorry you have been through the cancer thing too. The ETD has been a million times worse than the cancer was
I figure because we are in the UK ad get free health care (how lucky are we?) that they don't want to refer us to an ENT specialist because of the cost. But I'm a very cynical person anyway!
dianataylor alexia69415
Posted
Alexia, i know there are a lot of people on here that are suffering. I felt like you, i wasn't going to give up and "just live with it". I understand the root of everyone's ETD is different. I was one of the lucky ones and found my answer. I think there are a lot more success stories, its just that when people find their answer, they have no need to go back on these forums. I can understand that, i spent many yrs glued to my computer, looking for an answer, so I'm sure they just want to go live their lives! However, i vowed i would at least get a positive story out there to give people hope. I know that was something I desperately needed when i was suffering. I had the balloon dilation by Dr. Brian Weeks in San Diego. I live in the US, in Utah. There are many other drs learning this new procedure. Its giving a lot of people hope, if they are a candidate for it. Dr Weeks always took my condition seriously, and told me he was "with me, till we figured this out". Thats the kind of dr you need to look for. There has to be other drs out there that are like this, even tho, i know they are very hard to find. Good luck and please try to stay positive! I believe you will find your answer!
alexia69415 dianataylor
Posted
thank you Diane, very encouraging, especially as I just came back from the doctors with tah dah Prednisolone!! I have a 5 day 30mg per day supply so I am hoping for something good to happen soon. I was very lucky, my usual doctor couldn't get in so I saw an ad locum nurse/practioner who really understood me as she is an expert in the field. If this doesn't work, I have my hearing test next week then a referrel to an ENT where I can tell him I want the balloon!
dianataylor alexia69415
Posted
Been where you are....prednisone, allergy tests, MRI's, CT scans, physical therapy, mental therapy, everything imaginable...then i found an ENT that got it....the 7th ENT, i had seen, but he got it. So, there is hope, don't give up.
anne05078 dianataylor
Posted
Anne
dianataylor anne05078
Posted
Yes, i told him my symptoms, I already had sinus surgery from him for a sinus infection that drs in utah didn't know how to cure. So I flew to San Diego, had sinus surgery from Dr. Weeks for it, it was successful for my sinus infection. But I still had ETD from my first sinus surgery in Utah. I told him my symptoms and he said...you have ETD and there is a new balloon dilation surgery. So I waited for it to become available and i had it. And it cured me.. when i say my dr "got it'. I remember going into his office not being able to pop my ears and his response was...after he hugged me and my husband...that he was with me, until we figured this out...that was my hope, something no other dr had given me..and he was...he told me...if plan A doesn't work, we have plan B and plan C...that was when i knew he was the dr for me. The only response i had gotten from 6 ENTS was," you just need to live with it"...i wasn't going to accept that.....There is hope! I now it!!
anne05078 dianataylor
Posted
That's so great and happy for you that at last you have a doctor that understands. Unfortunately, over here in Englnd (although mine is good) I really don't think this problem is taken seriously and they don't realise how dibilatating it is.
So happy for yoy Diana
Anne
anne05078
Posted
Just read over your message again Diana, is the Balloon Dilation permanent did he say....what's to stop the eushachian tubes closing up again when inflammation takes hold, maybe through catching a cold, or sinus problems or even post nasal drip from allergies. Is anything permanent for this condition ?
dianataylor anne05078
Posted
My ears have been clear for 5 yrs now. I have had a few colds, but so far, so good...but I'm guessing that, yes, it can happen again. I just feel lucky knowing it helped me, so if it happens again, i wont feel so hopeless. My heart hurts for everyone on here with ETD. I know how if affects your lives. I know the balloon dilation isn't everyone's answer, but it was mine, so i feel like i need to share it, in case it helps someone else.