3 ent have said I don't know what to do with you! I need an answer.
Posted , 5 users are following.
Hi everyone, I hope someone out there has had the same thing I am going through. This started New Years Eve, I thought I was getting a cold because I was congested. Went to bed and was fine in the morning. It is just my right ear. At 1:30 in the afternoon the congestion came back I sound like I have a cold and sore throat and my right ear will echo when I talk so it sounds like I am screaming but I am actually talking low. Everyone asks what did you say? It last until I go to bed and lay down then I am clear in morning until 1:30 in the afternoon. I had eating hot spicy food but one day was at the Mexican restaurant and my friend said the salsa is really good. I tried it only to have my ear start popping and then my ear and throat drain. It only lasted about an hour as soon as it drained I heard this popping sound and instantly clogged. The feeling like I have a ball of snot in my throat but can't cough anything up. I am so grouchy by the time I go to bed because of the vibrating when I talk and people asking me to repeat what I said. I eat hot stuff just to get a little relief. I have had acupuncture,massages, adjustments. Did the antibiotics, prednisone, Zyrtec,singular, Flonase, astatine, afrin, sudafed, musinex d. Netty pot. Have had a hearing test. I had knee replacement in October and didn't do well with pain meds lost quite a bit of weight. But why is it good when I wake up in the morning? I am spinning my wheels going to ent that do no further testing. I can't be the only person that has experienced this. Then the dry wander why we get on the internet to self diagnose. Anyone experienced this? I am seriously wore out.
0 likes, 27 replies
anne05078 Faces
Posted
Hello, I can't reply to a name as one wasn't given. You certainly are not alone with regards to Eustachian Tube Dysfunction. There are so many of us on this Forum suffering exactly the same. Unlike you, mine is sometimes alright during the day, but once up in the mornings having been lying down all night in bed My left ear is pretty blocked then......probably do to Post Nasal Drip that manages to get into my left eustachian tube. This is the most awful condition to suffer and makes us all feel run-down, bad tempered and thoroughly miserable. May I ask, how long was the course of Prednisolone. If it was just 6/7 days, that just isn't long enough to get rid of this problem. I have recently taken a 20 days reducing method course. You seem to have done everything that is correct to try and remedy this problem, but nothing works. My left ear has been clear since I took the 20 days of Pred. back in April. Of course doctor don't like prescribing this drug too often due to side effects. I usually have to take it approximately every other year. I imagine you've tried popping your ear, which is impossible to do if it is so clogged. I have to use this method and I perforated my left eardrum in doing so. Sadly, the mucus is so thick and sticky, albeit clear, it doesn't drain, as the perforation is so tiny. That's when I get myself an appointment to see my ENT consultant and he Microsuctions all the mucus out. It feel absolutely wonderful once that's been done. I then use Flixonase Nasules, the ones where I hang my head over the bed to administer. Six weeks is the longest we can use these for. I then revert back onto the Flixonase Aqueous Nasal Spray and use twice daily. If you look on the Forum you'll see many of my messages to people suffering the same. I suffer Allergic Rhinitis and Sinusitis and take a daily antihistamine called Citrizine. At present I'm taking Oil of Primrose, that a man on this forum swears by in helping this condition. However, what works for one doesn't always work for others. I've recently started a supplement called Turmeric, which is better absorbed using black pepper, I've been told. Our eustachian tubes get so swollen from the inflammation there is no way they will drain. I've suffered this condition for years and years on and off, but more on than off, most days. Sometimes when I pop them the tube remains open, other times it pops then closes again. You'd think in the 21st Century there would have been a cure found for this wretched problem. Like a blocked nose, which is easy to sort out. It's a vicious circle, because if we are making a lot of mucus this is the cause. My left nostril gets so blocked too. We Have to find the underlying problem, which is hard. I live in England and our damp weather doesn't help. Mould from the trees in the Autumn and Winter and Pollen during the Summer months, so much other stuff too !!
Don't give up hope and if your course of Pred. was too short, go back for more. I was messaging a lady in Australia a couple of days ago and recommended the 20 day reducing course and her ears are now both un-blocked. Which I'm so happy about. Which country are you in ??
Regards Anne
Faces anne05078
Posted
Hi Anne,
I guess I forgot to put my name. It is Sandy. Thank you so much for responding. I will try the prednisone again. Do I do 20 days all in row or the 7 days break and do it again? It is so weird how this just started out of the blue. I forgot to mention I deal with RA, but haven't had any ear issues. My tubes are backwards it is usually that's they clog at night instead of the day. You can't imagine how much better I feel just having people to talk to. Thank you so much.
Sandy
anne05078 Faces
Posted
Hello Sandy. Your doctor should tell you how they should be taken. I think mine was 6 tabs straight off first thing in the morning for 6 days, then 4 tablets for 6 days then 2 tabs for 6 days...how many tablets is that. without adding those tablets up and without looking at what I;d written down before I started I can't be 100% sure this is correct. But that's about it I think. It's 10:30 pm here in England so going to bed now. I will find my paper work tomorrow and let you know how I took them. I always write down the days and how many tablets I take and tick them off. But your pharmacist will have written instructions on the box.
Anne
anne05078
Posted
Just read your message again. The tablets are taken for the whole 20 days without a break. That's the only way they'll work. Just read the box they come in and make sure you take them properly. You didn't let me know what was the course you took. Was it one week ??
Anne
Faces anne05078
Posted
Yes Anne just the 6 days dose. I asked the ent that prescribed it if I needed another round and he said no. Then said I don't know what to do with you. I asked why does the hot sauce make it drain? He said let me refrain this. I don't know what to do with you. I have blonde hair and have my bangs colored a light blue. He walked out of the room and I said do I have to live like this the rest of my life? He said I can't make anymore clearer I don't know what to do, maybe it is the blue hair and walked off.
anne05078 Faces
Posted
Hi Sandy, That's utterly disgraceful and he needs reporting. I doubt very much whether the 6 days course will do anything to help you. A lady I befriended on the Forum and we now speak via facebook only had 1 weeks course and they didn't help at all. She was then given more and it helped like it did for me. I certainly wouldn't take that attitude from any doctor, that was so rude. His reputation needs checking out. If you've suffered for months and months with blocked ears something has to be done to help you. My ENT consultant is wonderful and wouldn't dream of talking to me like your did. Go to a different doctor.
Anne
Faces anne05078
Posted
Good Evening Anne, I did report him he was the second ent that was so rude. The first one didn't even check me out just ordered a hearing test which I got done and went back to that dr for the results. He said we need to order MRI to check for a tumor. I said a tumor and how do you fix that? He said I don't you have to have brain surgery. He wouldn't let me ask anymore questions. I deal with anxiety and they ordered the MRI I called to see if it could be an open MRI which it had to be a closed one. The day before the MRI at 4pm my insurance company called and said they cancelled my MRI because the dr didn't put the right diagnosis code on the order. I called the dr so angry because I had been so nervous for two weeks about having a brain tumor and getting the MRI. I told the dr I wouldn't be back to them. Then went to the one that said it must be my blue hair. When he looked at my hearing test he said oh they just write this stuff on here to cover their ass. So two ent with two opinions and no answers so I am on my third one who is nicer but didn't have any answers just prescribed all the sinus sprays, sudafed. I see her again on the 29th and will ask about the prednisone. I just can't understand that these drs made the decision to be an ent dr and can't figure this stuff out. I hate being so achy,tired and grouchy. I understand where Michael is coming from that this forum is people repeating but I am so thankful for this forum. I look forward to seeing if someone responds to my posts. I feel like I am being heard. Thank you so much.
anne05078 Faces
Posted
Hello again from England. I really doubt you have a brain tumour, so stop worrying about that. Sorry if you've already told me, but which country do you live in ? I don't think some ENT specialist take ETD seriously, as it isn't life threatening. However, unless they suffer they wouldn't know just how debilitating the condition is. I think it's worse than a headache, or toothache. I know our ears don't ache, unless of course there is an infection present, but the full feeling is just awful. Unlike in England, where we don't have to pay for treatment, you do, so you should be receiving the best of treatment and care, by the best professionals....it's a disgrace how you'r being treated. Do try and stop worrying as really ETD isn't a serious condition just a very irritating one. Prednisolone WILL WORK if you are able to get prescribed some. Your ear may never block up again once all the inflammation in the tubes have gone. Obviously I'm no doctor, but absolute years, years and years suffering from ETD and seeing my great ENT consultant twice yearly, I really don't think there is a total or permanent cure....just to get some relief from time to time, is what we just have to accept. Just make sure if you are prescribe the Pred. that it's a 20 day reducing course, anything less will just not crack it !!
Remember you are being heard.
Stay calm and best wishes
Anne
Faces anne05078
Posted
anne05078 Faces
Posted
State do you live in ? I have family in Pennsylvania and I think the UK is approx 5 hrs ahead.
Anne
Faces anne05078
Posted
I am in Illinois. It is 1130 now. Is it hard to get into the dr there?
michael11955 Faces
Posted
So sorry to learn that you've joined the club that we all belong to.As I've mentioned in previous posting here,my GP doesn't know where or who to send me to either.Learning to live with it is very difficult & don't expect any sympathy from anyone either.Unless you have the complaint you simply don't understand it.
anne05078 michael11955
Posted
Couldn't have put it better myself Mike. What is your current status regarding this horrible condition and what have you tried ?
Anne
michael11955 anne05078
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Sadly my status hasn't changed at all from my previous postings.Recently had tests & various scans & the senior audiologist told me that there are no indications that I have ETD.What does ail me is that neither he or any of his team or two ENT specialists have a clue to what I have got.
anne05078 michael11955
Posted
Hi Mike, if your ear/ears are blocked you most definitely do have ETD. By looking inside the ear how would they know. The indicator is blocked ears, crackling, popping. What else do they need to know. I was told if the eardrum is shiny there is no blockage. Well in my case there definitely is and I know for certain having suffered this problem for so many years. What is the prescription you are currently using and what's been tried in the past ??
Anne
Faces michael11955
Posted
I am so sorry you you are dealing with this junk. It is so frustrating when we can't find drs that have the answers. I am so achy,tired and grouchy by the end of the day. Hopefully all of us will come up with the solution. I am so thankful I have found this forum.
michael11955 Faces
Posted
michael11955 anne05078
Posted
Hello Anne & thank you for your kind words.I'm not using anything now because I've tried all the known so called treatments without any success at all.My GP tells me that they don't have a pill for everything & just to learn to live with it.
anne05078 michael11955
Posted
That's very true Michael, I repeat myself constantly. However, there may be new members that need to read our comments, symptoms and sometimes advice.
There are some really lovely people out there that seem to be getting no where with this condition.
Anne
anne05078
Posted
Because when ENT consultants look down our ears and they can't see the eardrum bulging, they don't realise that the ear can still be blocked. When the eardrum bulges (like mine did years ago) that's when the pressure builds so high it causes the eardrum to perforate. Sometimes, a big enough perforation can allow all the muck to drain out into the outer part of our ear. It's happened a few times with me. the more recent perforations are tiny holes, which won't drain. With this condition the inflammation is so bad the tubes swell up, that's the discomfort. Again, allergies, sinusitis and post nasal drip can all cause this, so it's a vicious circle. My left ear blocked again this morning. However, I've manged to pop it and using Flixonase Nasules that seem to work for me.
Anne
Faces anne05078
Posted
What is the Flixonase capsules? Is it Flonase? Yeah the ent tell me my ears are beautiful when they look at them. I need to go on vacation somewhere to see if I still have the problem. I can get some evening primrose. I just am so confused about the drs not having answers do they not learn about the the tubes in school?
anne05078 Faces
Posted
If they are qualified ENT specialists, you'd think they'd know all about the anatomy of the ears, the inner ear and the other side of the eardrum too. I must be one of the lucky ones here in England, mine's very good. No not Flixonase capsules, they're Flixonase Nasules. you have to lean your head over the bed to administer morning and night. Six weeks course only, because they are stronger than the Aqueous spray Flixonase nasal spray. Mine are behaving at the moment thank goodness. A little blocked this afternoon, but managed to pop them and the tubes have stayed open. Never too sure about the Oil of Prim that was recommended, as all the while I'm on the Nasules my ears are clear anyway. I don't reckon that the oil of prim do anything to help ears. maybe the chap using it and they worked was just a coincidence. I think people will grab onto anything in the hope something will work. To get 3 months complete relief, Every other year when things are really bad and I can no longer take it, I request Prednisolone 20 reducing course of the steroid tablets. But of course to keep having to take them is bad for us and could potentially lead to Diabetes and other horrible things. However, I think the quick course now and again we should come to any harm....hop not !!
Annd