Caffeine & Alcohol and ETD
Posted , 12 users are following.
Hi Everyone, I am new here. I have been suffering with ETD for 4 years after an ear infection that kept me ET completely shut for 2 months! I was misdiagnosed with PET first and after 3 ENT's, I was correctly diagnosed with ETD. My ETD is not horribly bad, but it can change my mood when it flares up randomly. I have constant full feeling and loss of hearing. Hearing my own voice is what drives me the most crazy and that fluctuates throughout the day and based on various beverages, driving in the car, elevation change, head position etc.
So there are things that make it worse throughout the day. Caffeine is almost instant and I am assuming its because of increased blood flow. Beer and wine also cause major issues with my ET almost immediately after I drink them. Does anyone else have this same effect?
I have been tested for allergies (seasonal and food) and I have NONE! I have also done elimination diets for dairy and gluten with no change. Just curious if anyone has this issue (caffeine/alcohol) and has figured out why it causes problems.
0 likes, 15 replies
laszlo14520 RebeccaAnne
Posted
Hi Rebecca,
Yes, I've been suffering with the same symptoms as you (plugged ears, pressure and fullness feeling) for nearly 4 years now and I have very similar triggers, although I have removed some of them over the years (I no longer drink coffee and consume very little alcohol)
You can read up about my previous posts, I've been on this forum for about 2 years. Unfortunately I never got a full diagnosis, I was only able to address the triggers: I try to eat smaller portions, switched to decaf, minimal alcohol intake and just generally eat healthier food now.
Unfortunately most of my tests have come back negative except for my allergy tests. Allergy medications don't seem to do anything, I'm aware of the fact that I've had seasonal allergies since I was a teenager and I live in the dusty desert of Nevada.
My acid reflux scope test came back negative although the biopsy did indicate a mild reflux in the esophagus, but not enough to really warrant any serious treatment. The prescribed course of Nexium didn't really make any difference, so all I can do is manage the symptoms and watch my diet. I work out 3 times a week and I'm otherwise in the best shape of my life, but I still have days when my ears bother me a lot.
Do you have any other triggers? Have you had any tests done on your digestive system?
RebeccaAnne laszlo14520
Posted
Thank you for your reply, Ill take a look at your posts. I actually just went down the acid reflux route. I have pretty bad acid, almost anything acidic causes me acid. I started OTC Prilosec, but after 2 weeks nothing has changed. My bad ear is the side I sleep on (I recently switched to see if that helped) and my ear is the worst when I wake up, so it could be acid. I am just so tired of bugging my Dr to get new referrals for different issues. When I talked to him about anxiety I have from this condition he totally blew me off like it was nothing.
What is the procedure for testing if you have acid reflux?
My other triggers are hot weather, colds, being in the car, working in the yard (assuming from the dust).
So far I have tried all the steroid nose sprays, saline sinus rinse, all of the allergy meds, cranial sacrial therapy, massage therapy, muscle relaxers, mouth guard, Myringotomy, NSAIDS, sudafed, herbal meds for inflammation, Prilosec. I am sure I am leaving stuff out.
I think my plan is to pay out of pocket to be assesd by Dr Weeks in San Diego. I am interested to see if I could be a candidate for the balloon dilation or at least be diagnosed correctly so if anything new comes out I will have an idea if I can be cured.
Mine isn't the worst case like so many others, but for 2 years it was ignorable, and its gotten worse over the past 2 years and my hearing is poor in that ear.
anne05078 RebeccaAnne
Posted
Hi again Rebecca, I don't drink, so can't comment whether it's that that is causing the Eustachian Tube Dysfunction to get worse and I only ever drink DeCaf coffee.
Since reading your above post and you've bee suffering for so long, you may need a course of Prednisolone steroid tablets. Not all doctors like to prescribe then, but a one off 20 day reducing course I'm sure will sort you out. I was taking them back in April and bearing in mind I've suffered ETD for 34 years on and off, but more on than off and sometimes have such bad episodes that my left eardrum perforates. I have to be particularly vigilant with this condition as many years ago it caused Bacterial Meningitis. The bacteria crossed the blood brain barrier and I lost the sight in my left eye and suffer vertigo too. Fortunately, since the illness I'm seen twice yearly by my ENT consultant. I've had 4 perforation this year and I then have to see him so he can microsuction all the muck out from behind the eardrum. So I'm permanently on steroid sprays, that obviously no longer work, hence the stronger Nasules now. These Nasues should only really be used for up to 6 weeks, however, one I'd finished those and reverted back onto the Flixonase Aqueous spray after 4 days the blocked ear was back and really bad. I could hear like you do my own voice and such a lot of squelching and crackling. I haven't had a holiday abroad in 5 years due to ETD and that makes me feel quite miserable, but I hate to be abroad and suffer this condition and the flight would probably only aggravate it and make the blockage worse.
So ask you doctor what he can do you for to get some relief from this wretched condition. I've left all the details about the Flixonase Nasules in a previous message to you this morning.
Kind Regards
Anne
michael11955 RebeccaAnne
Posted
Dear Rebecca Anne,Your remarks about caffeine might be very valid.I always have a coffee for breakfast & my ears seem to feel very full after that,so I'll give coffee a miss for the next few days & see if it helps.I do find that I get very short tempered with things that don't work as they should,but mainly with myself.
anne05078 michael11955
Posted
Hi Michael, I haven't used regular coffee in years, only DeCaf, so I don't know whether that would in fact bother my ears....everyone is so different. Lots of people of the Forum have had it proved that TMJ is the fault with ETD....not in my case it isn't. I did wonder whether my top back left tooth was to blame, as we all know when our sinuses play up our top teeth ache. My dentist did an extensive mouth X-ray and nothing wrong with teeth....so back to square one!! Goodness only only the real cause of ETD.
It's all trial and error.
Anne
michael11955 anne05078
Posted
Dear Anne,I've also tried regular & decaf coffee & find that is no difference.Same with tea.I fear you're right that it's trial & error,.sadly more error.
Michael
ann1013 RebeccaAnne
Posted
RebeccaAnne ann1013
Posted
Sadly both tests. I had the skin test done first with ZERO allergies to seasonal allergies/dogs/cats etc. I was frustrated because cats do bother me. I also had bloodwork done later for all of the same with everything coming back with negatives. I also did foods (milk, gluten, eggs, soy etc) with nothing being positive. I also did EverlyWell, which is a "sensitivity" test and eggs and dairy came back moderate. I cut them out with no change.
We had major smoke from the fires in California today and my ears are awful. They both have tons of pressure (usually its just my left). So environmental definitely adds to it, but I don't think its causing it. I really thing my ET just doesn't function anymore.
ann1013 RebeccaAnne
Posted
No fires but I am having a bad day too. I got a crown over a cracked tooth last Thursday. I wear a bite splint for TMJ. After getting dental work the splint really needs to be balanced but I don't have a TMJ doctor. Mine retired and the clinic that took over his patients is booked until next March. I filed for an exception with my insurance to cover an out of network TMJ clinic in Indianapolis so I am praying that goes through!
Anyway, if I wear the splint my ears are better and my right masseter (cheek) doesn't spasms as much or pull so tight Wearing the splint also causes the new crown to just throb like a constant toothache.
Tonight my ears felt like they had a bubble down in them. That is the only way I can think to describe it. I haven't had that awful feeling for months. I took a 2nd dose of my two nasal sprays and it helped a little. I put in the splint and my ears mostly cleared (maybe to 75%) and my cheek stopped hurting BUT my dang tooth is just throbbing with my heartbeat.
Either way I am miserable. On a positive note my neck pain that has plagued me since March is completely gone. This is day 3. My face and ears are worse but my neck cleared up. I don't expect it to last but at least I am getting some relief. My neck pain is mostly related to TMJ and feels like it's being held in a vice grip right at the base of my skull.
anne05078 RebeccaAnne
Posted
Morning Rebecca, We've got the news of the Californian fires on our news in England this morning....just awful !
I'm not surprised your allergy testing came back negative, as so did mine three times. We know our own bodies and what affects us. Mine is definitely, cats, dogs, house dust (which is so hard to keep down) and many outside influences. Pollen, tree mould etc, etc.
Did you ask fro the medication I recommended. My left ear is still clear and now I'm only using the Flixonase Nasules every third day. My right is is always good.
You're correct when you've said our tubes just aren't functioning properly anymore and for whatever reason, so we must try and find relief for it, which I've done. I can't recommend my meds strongly enough for fellow sufferers.
So let me know what was actually recommended for you.
Anne
anne05078
Posted
Hello again Rebecca, I've just had the reply back from my nephew in the US and he tells me that Flixonase Nasules is something you can't get obviously where you live.....which I think is the States. He has told me that the what you've been prescribed is the same as what is no longer working for me. You could ask for a course of Prednisolone to get some you quick relief. Other than that you could look on the Internet to see if there is a reputable company that would provide you with 2 boxes of the Flixonase Nasules....be careful who you use though.
Let me know how you get on and sorry you're unable to get what is helping me at the moment.
Anne
anne05078 RebeccaAnne
Posted
Me again Rebecca, I've just put Flixonase Nasules into Google search engine and you can purchase them from our Lloyds pharmacy.....not too pricey either. If you want to go down this route, you'll need to buy 2 boxes for the 6 weeks course of 1 Nasule divided by both nostrils morning and night. Administer with your head leaning over the bed and stay there for 30 seconds so they seep in. I'm pretty sure if you do buy them that within a few days your ears will clear. They come in a green Box and I'll repeat what it says: 400 micrograms (1mg/ml), nasal drops suspension fluticasone propionate.
The best of luck
Anne
ann1013 RebeccaAnne
Posted
I googled and it looks like you can do an online consultation with a doctor and they will prescribe the medication and mail it to you. I didn't register so I don't know if being in the US would OK or not.
michael11955 RebeccaAnne
Posted
Dear Anne,How do you know if it really is a doctor you are talking to. ?Also beware of medicines that aren't from a pharmacy.A pharmacist friend tells me that some tablets that cost £1.39 from the wholesaler are being offered online for £40 for the same quantity.I do believe in people earning a profit,but think that this is very excessive
dave2022 RebeccaAnne
Posted
Hi Rebecca
just wondering if you found some treatment or medical solution for your ETD. I have the very same symptoms you outlined and it is lasting longer and longer especially when i drink coffee too ( bizarre ) !
Dave