Eustachian tube dysfunction for 6 months... i'm suicidal and not sure what to do....?
Posted , 21 users are following.
I've had eustachian tube dysfunction in both ears ever since flying long haul with a bad flu/cold in November last year and nothing since has eased my symptoms. I went to my doctor a month ago and he dissmissed it really, told me to use a steroid nasal spray and do valsalva every hour and it should go away in a couple weeks. This spray has done nothing and I actually feel like it has gotten worse the past month. It causes a feeling of unbearable pressure in my ears and sometimes in my head and nose, affects my hearing, causes crackling and popping when i swallow, yawn etc. and makes me so miserable. If theres no cure for this then I'm not sure I want to keep living. I'm only 18 and have never felt this way before but I really feel so hopeless. My doctor just won't take it seriously as I feel he just doesn't know what to do. He said he would refer me to an ENT but reading online I feel theres no way an ENT can help me. After searching this on the internet for the past 6 months and reading all the stories of people never getting cured of this and having it for tens of years I honestly just want to die. I'm suffering from a tremendous amount of anxiety too as I am due to fly to Greece from the UK in the beginning of July and am sure that it will aggravate the problem. If this happens I don't know what I will do apart from just end it... I'm scared of feeling like this and wish that I just had my old ears back so much I'm crying as I write this. I have no idea what to do no one around me understands I just wish there was something that would cure me. Before this I loved life and was excited by the prospect of my future but now this condition has taken over every waking second of my life, driving me insane. I'm so lost and hopeless and in pain I don't know what to do... If anyone knows anyone who can actually help me in the UK please please get in contact. otherwise I fear I may do something stupid before the year ends... :'(
2 likes, 87 replies
michael11955 caddddy
Posted
Dear Cadddity,I really feel for you & can understand exactly how you fee.If you look back on this discussion & see my remarks you'll perhaps realise that there are others who are sadly in the same position.Last week a guy I know said to me"we are all strong enough to bear the misfortunes of others".Think about it.
I go to mindfulness classes & the people who attend are fro m teenagers to pensioners.
I find they help me to focus.It appears the medics really don't have an answers.
jessica86474 caddddy
Posted
i havent got a over bite its more an under bite
denise12209 caddddy
Posted
I went to see a different ENT Dr. and he did some different examinations and a nasoendoscopy . He said I have a massive amount of inflamation behind my nose which is causing the problems with my ears!! I've been told to follow an anti-reflux diet to reduce stomach acid production and the subsequent swelling in my nasal passages. I've also been told to do a nasal rinse twice daily to help reduce the swelling. I've been given steroid drops to add to the saline solution for 4 weeks to help too.
I have no indigestion so had no idea at all I had acid reflux.
A week and half in I can already notice the swelling must be going down, as for short periods of time the clonking and tinnitus reduces. Hopefully it'll not be too long before it clears completely.
Maybe some of you experiencing similar ear symptoms also have an undetected acid reflux problem?
jessica86474 denise12209
Posted
at least someone has found the cause what sort of food have you been told to eat and what is the nasel rince what was you symptoms x
denise12209 jessica86474
Posted
My symptoms were tinnitus, feeling blocked in my ears, clonking when I swallow, ears not popping when flying or going to higher elevations, ear pain, loss of hearing - had a hearing test and my hearing was found to be in normal ranges. Reduced balance at times.
denise12209 jessica86474
Posted
No spicy or fatty foods. No tomatoes or onions. No tea and coffee (I don't drink those so no worries for me). No citrus friuts, nor those contained in foods and juices. No creamy sauces. No carbonated drinks. No chocolate - that's going to be the hardest thing for me. No ice-cream. Everything low fat. Also been advised to drink plenty of water, something I don't do.
I have lost 3lb in the first week, so every cloud has a silver lining 🤣
The nasal rinse is NeilMed Sinus Rinse - available online. It's actually not unpleasant, once you get used to it. Better to use body temperature water.
jessica86474 denise12209
Posted
thankyou your sympstons sounds the same as mine do you ever get pain im going to try this im going on hoilday in september so could do with the diet how long have you had this for? x
denise12209 jessica86474
Posted
The symptoms started on a flight when I also had a bad cold - ears didn't pop, feeling of fullness in ears, tinnitus, clonking on swallowing. The intermittent pain, impaired hearing and problems with balance gradually developed over time. Seventeen months in all.
The first ENT Dr. said it'd clear in 3 month's, and when it didn't I went back to my GP surgery, and the GP I saw said I was making it all up!
Finally, desperation made me get a hearing test, and the audiologist told me to go back to my GP as there must be something wrong.
The GP I saw believed me and referred me again to the ENT Dept., and that was when I got my diagnosis.
jessica86474 denise12209
Posted
that is such i long time ive only just been refered to ENT my doctors just kept telling me it will get better they cant see anything wrong ive got another 6 weeks till my appioment and ive been like this since febuary thankyou for your advice im go try to be carefull with the food im eating and try that nasel rinse x
denise12209 jessica86474
Posted
Good luck.
Look up Laryngopharyngeal Reflux, or LPR for short, on the Internet. You'll see how the condition affects the euchastian tubes.
When you eat make sure you sit at a table, do not slouch, and remain sitting upright for at least an hour to stop acid coming up from your stomach. Don'teat within 2 hours of going to bed. If you're in the UK see if you can be referred for a nasoendoscopy (mine was done through the NHS referral) and that'll check your nasal tissue for swelling.
oliver79637 denise12209
Posted
These are all symptoms I have had and it is a bite problem! Find a dentist with a t-scan. Its a device you bite on and it measures the forces as you bite.
https://www.jorgensenorthodontics.com/blog/what-does-an-ideal-bite-look-like
If you bite is anything other than this then you should investigate it
jessica86474 denise12209
Posted
thankyou ive just had look i dont suffer with the vertigo anymore thank god did they give you anything to help and have you found that has helped x
denise12209 caddddy
Posted
No spicy or fatty foods. No tomatoes or onions. No tea and coffee (I don't drink those so no worries for me). No citrus friuts, nor those contained in foods and juices. No creamy sauces. No carbonated drinks. No chocolate - that's going to be the hardest thing for me. No ice-cream. Everything low fat. Also been advised to drink plenty of water, something I don't do.
I have lost 3lb in the first week, so every cloud has a silver lining 🤣
The nasal rinse is NeilMed Sinus Rinse - available online. It's actually not unpleasant, once you get used to it. Better to use body temperature water.
anne05078 denise12209
Posted
Hello Denise, You're the Denise who lives in France? I've been waiting on your reply from the time you went to see you ENT specialist. If you're the same Denise I think you said you'd have a trip to England to buy the medication that help my ETD. The NeilMed she be cooled boiling water, not
straight from the tap. I hope at last you are finding some relief from this wretched problem. I've currently had relief, except for the odd day, for at least 2 months. May is my worse month and September. Must be something to do with the changing of the Seasons, so allergy related. Leaving off different sorts of food has made absolutely no difference to me. I also eat chocolate pretty much every day. Don't drink or smoke. I do take regular supplements though, that may be helping....who knows!!
Regards
Anne
jessica86474 anne05078
Posted
hey anne did you find The NeilMed helped with yours aswell i just went to boots the buy some but could only find the sashes do you buy the bottle seprate? x
denise12209 jessica86474
Posted
I bought my kit online as it was cheaper than at Boots. I couldn't find it anywhere else.
On the instruction paper the ENT dr. gave me was a recipe for the saline mix, so as not to buy the sachets.
1 pint cool boiled water
1 teaspoon of PURE SEA SALT ( eg 'Maldon sea salt flakes')
1 teaspoon of sodium bicarbonate.
Apparently the mix can be stored in the fridge (covered) and gently heated in the microwave (5 seconds) before use.
denise12209 anne05078
Posted
Hi Anne,
I'm not the Denise from France, I'm in the UK.
I too believe that part of my problem is some kind of allergic rhinitis which messes up with my nasal passages.
As long as I can clear this blasted tinnitus and clonking on swallowing I'll be able to deal with any associated nasal problems.
anne05078 jessica86474
Posted
Hello Jessica, All NeilMed does is clear the sinuses, and any potential allergies, doesn't unblock ears, sadly.