I decided to go on a two week trial of little to no dairy to see if it helps calm my ears down. (I can't completely cut dairy out as it crops up in some foods in tiny, trace amounts, and I want to focus more on not drinking milk, eating yogurt and cheese, ice cream, the bigger picture.)
Hey, coconut milk ice cream is not bad! Had some last night.
I really am interested to see what the new ENT-allergist has to say on Weds, and will update when I know. I am hoping he will test me for food allergies in addition to the inhalants, but I really suspect its the inhalants that are the main culprits. The molds and pollens that are so prevalent in the Pacific NW. It just makes no sense that healthy ears would suddenly be stricken so badly without some kind of major trauma precipitating the problem. My suspicion is that the small signs of allergy I felt for years but ignored (post-nasal drip, sore throat, sneezing, itchy eyes, badly itching ears) were just signposts leading up to the point last December when my ears finally said, "Enough!" and the real ETD kicked in.
redding1...I felt the same way you did a few years ago.
I was frustrated and felt like I was just going through the motions of my day. It's tough because ETD isn't like a cold that you know will go away in a few days/weeks. It often takes longer to figure out and in the meantime you do feel a little crazy as the doctors can't 'see' an infection or a problem. I hope that you can get to an good ENT asap (if you already haven't).
Doctor's will often start by just giving you rounds for meds, drops, and nasal sprays. I would recommend getting in to see a doctor asap (in addition to trying some less evasive home rememdies - like diet changes, air filters etc).
I kept a journal of everything perscribed to me by doctors so that I go back and tell them what did/didn't work. A journal with the dates is good to have when you go to see ENTs. I had a spreadsheet with all the meds I used, dosages, duration etc. I would hand this to the muliple ENTs I visited to avoid wasting time talking about what was prescribed thus far.
After suffering with ETD for over a year and trying everything, the multiple ENTs I visited ended up recommending these three options:
(1) PE tubes (which I found to be a simple out patient surgery/procedure that's worked for me thus far)
(2) Allergy testing (I never got to this point, but I do take percautions to avoid pollen, dust, dairy, etc). If I ever have trouble again with my ears, I will get tested to figure out if I do have allergy issues.
(3) Deviated septum/sinus surgery - I didn't feel comfortable with the ENT that recommended this for me and got 2nd and 3rd opinions from my family physician and 2 other ENTs who felt that this was a final resort after PE tubes and allergy testing.
My recommendations for battling EDT is to harrass as many doctors as possible and get multiple opinions from multiple ENTs. I found a one ENTs to be a little sketchy and the as he wanted to give me sinus surgery and throw in a quick nose job at the same time. I asked for my file the next day and moved on to another ENT.
When looking for a good ENT specialist, I urge you to look around, talk to people in your area, and trust your instincts.
Best of luck to you and I hope you get relief soon.
I really appreciate the welcome the other day & the comments. It is great to be in a group where people actually get it !
I did see the GP, who now says it may be a low grade sinus infection driving it all, & recommended another kind of nasal spray,....& , yup...anti-depressants !!!!....but no referral to an ENT ( in Canada , no referral, no specialist).
It sure partly is a mental health issue now, because of all the frustration, pain, etc etc.
I am trying HydraSense to see if this helps the whole system to keep hydrated. I hope it helps the ear popping, but it is too soon to tell.
I am having my hearing tested.....I wonder if hearing aids would help !!! Does anyone have them , along with ETD ????
I am also having a sinus scan done at some point......so I guess something might be learned ....& after that , if there is no change, I will insist on an ENT specialist.
Anyone tried naturopathy ?
I am also going to try a daily breathing in of Tee tree oil in hot water;it supposedly widens the E-tubes.
Speaking of breathing in, I actually stood in a cloud of marijauna smoke the other day at a bus stop.....breathing it in....& hoping .....
Sorry I've kind of ben out of the loop lately. Back to being frustrated and isolating. My dr who did my eustachian tube dilation said we can do it again w a bigger balloon. Did u know our tubes r the size of pencil lead! No wonder no drs will go there. But mine is and I am going to do it again, because it worked. Our tubes r stuck shut behind our nose and most drs give us a band aid if we r lucky. I don't want a band aid. I want my life back. For u new, there is a dr on both the east and west cost doing these new et balloon dilations. When I had the surgery the first time, it was like he had popped my head open and gave me a shot of adrenaline. I forgot how much energy I had before. My pain and pressure was gone. I was back to normal! No more clicking when i swallowed. I had spent the last 3 yrs on the couch. My ins may not pay again so soon, but I don't care. I will figure out a way to have the balloon dilation done again. I wish i just wouldn't have gotten sick a few days after surgery I really think it would have taken. I have to trust my dr. He always has a plan and is thinking ahead. No other ENT has done that.
In fact they don't even know about et dilation! I have been to the best ents.
in Utah and flew to johns hopkins in Maryland for this ETD. They had no
answers. My dr now is in San Diego. He e mails me and we talk on the
phone. He gets it when others drs just dismissed me! I am hoping to have this surgery done again soon. I've been on a steroid spray for 3 months now. I figure if i couldn't open my tubes myself for 3 yrs I doubt the spray will work. His last e mail he told me he wants me to be better forever, and that he prays for me every day. I told him good because god probably listens to him much more than me! Hes my angel thru all this, my hope.. If u r like me u have felt useless to everyone since u have gotten sick.. I will mortgage my house if I
have to, to get ME back! I'm lucky I have my husbands support. He has lost
his wife the last few yrs. I will let u know how my next surgery goes. Don't
be afraid to try it . I didn't think my ins would pay but they did. It was so easy, no pain at all, just relief. I wish that for all of u suffering! Don't lose hope, there is an answer, It may not be perfect yet, but WE HAVE HOPE!! That's everything!!
Jenni: Let me know how the non-dairy diet goes. Also, how's the new PE tube. Ear adjusting?
Mia: what is HyrdoSense? I went to an acupuncturist and according to my pulse, I'm 'dry'. She told me to drink up, get more fluids, hydrate. I try to drink about 1.5 liters of water a day, but I don't always manage to (I'm traveling from classroom to classroom without time between classes for lavatory breaks), so too much water can make for a painful day. And even when I do manage to get my 1.5 liters in, apparently it's not enough. I think the chemo dried me out.
Massage seems to be giving me some relief. It's helping with the neck tension, anyway. If only I could get rid of the last bits of that sticky, crunching. Sigh.
Massage is good. ETD causes neck pain in all of us. I try to stretch my mouth open as much as possible because we have a tendency to tighten our jaws. I,m not sure about hydrosense but I use hydropulse. It's a saline pulse device to clean your sinus I use mine every day to clean out my sinus. It will clean out extra mucus too. I never had any sinus ETD problems till after my first sinus surgery. They do them different now. Called balloon sinuplasty I wouldn't do it the old fashioned way, my dr calls us sinus cripples who did them the old way. They take out too much tissue. With balloon sinuplasty they just open your sinus with balloon and don't take out tissue. That way your sinuses will still work normally . Hope this helps. My heart knows where u r coming from
im so glad I found this board!
Dont want to go into my details, we've all have the same story Im sure. Been going thru ETD off and on for 13 yrs with the worse Dr's. They had me convinced for years it was just strickly panic atttacks and never even mentioning ears, til this year my left ear closed completly in May after sky diving and has never opened since. This time Im not giving up. The first time I went thru this I lost my job.
Havent seen anyone mentioning any problems with dizziness or balance problems, thats always been my major issue. But I love to hear what everyone has done and ways to help deal with this dysfunction since Dr's havent been much help to me either. Its so hard to find solutions, everything Ive read people are all just looking for help, but have no answers.
dlt48, can you tell me more about this Dr in San Diego, you said the first time you went in for the dilation that your insurance covered it, was there any money out of your pocket? Not sure how using a Dr out of state would work with my insurance. And what I'd be looking at if my insurance doesnt cover it. He sounds like a angel! I was reading about this laser surgury instead of the tubes, looks like theres a institute in Sweden that does it and a couple in the US, but again a new treatment and no Dr's have heard of it. Wanted to know if you looked into this type of treatment too. Seems like people with ETD do so much more research than ENT's do.
I didnt realize that ETD can even cause neck pain, I told one of my ENT's that my neck was killing me. All he told me was to see a physical therapist. He had me thinking it was totally unrelated - neck pain and ETD.
Thanks everyone out there sharing, it does help knowing Im not alone. Others just dont understand.
So true, we all the same story of drs and most have the same symptoms. I only feel a little off balance sometimes. Mostly head pressure, neck pain and constant ear clicking when I breathe in and swallow. I am fortunate to have tricare ins. My husband is military. I always meet my $1000 deductible then I am covered 100%. I am VERY lucky. The dilation surgery was billed at around $45,000 w ins paying $4,000. I know crazy huh. But they have to accept whatever your ins pays. I am able to see any dr in any state. However, all the drs along the way kept telling me that my ins wouldn't pay for a lot of things, but it did. If I was declined the first time i didn't give up, I wrote them and explained, along w a letter from my dr. I think my determination surprised all of them! For the balloon dilation I just had to get a prior approval. I am hoping if I have to pay this next time that they will accept what my ins would of paid them. I've learned u can negotiate prices when u don't have ins. If not I'm going to have to really think hard about surgery.
We would have to use all our retirement. Not sure my conscience can do that. Then again not sure I can live with this pain. I'm not the nicest wife when I hurt. U know that better than me if u have suffered 13 yrs!! That's a long time to put on a happy face when u r miserable. I read a little about laser, for me dilation was the least invasive with no real side affects. Just taking care of the problem by opening the tube. I think dr Poe back east was one of the first doing laser. He does dilation also. I'm more angry at my body for getting sick so quickly and swelling up again. But the relief was so instant when I had the surgery. I felt like my life was on hold for 3 yrs always waiting to feel better, to do things. Now I'm back on hold and I don't want to wait another day to get my life back. I tell dr weeks I'm his most impatient, patient! I'm on my 3rd bottle of steroid spray and am taking an anti inflammatory drug, along with vitamins, fish oil, anti oxidants, glucosamine. Anything to get my body to get rid of this inflammation. I will talk to dr weeks when my spray is gone. I'm guessing we will try my ins again. Who knows, they r surprised me before. Hope this helps. U need to find a dr who understands your pain and has real answers!
So glad this thread is helping others cope with this ETD misery/mystery, even if it doesn't take away all our pain magically (wish there was a way...sounds like the balloon surgery is the closest thing to a magic bullet).
I had my appointment yesterday with my new ENT-Allergist. I really liked him...he spent at least an hour with me taking down my history very carefully, and keep checking with me to make sure he didn't miss a thing. I never felt rushed or dismissed.
He thinks my ETD is, as I suspect, allergy-based, since I have developed these new allergies since moving here in 2005. Remember, I have no history of ANY ear problems prior to '05...none as a child or adult. I grew up in a hot, dry agricultural region...mold was not an issue.
He seems to think that mold IS the big one for me, even though I have some grass pollen allergies that showed up on the test. He gave me a lot of tips on how to reduce my exposure to mold: wear an industrial quality dust filter/mask when I have to go into musty places, avoid raking leaves or yard clippings, keep car and house windows closed, and shower every night to remove any spores clinging to my hair or body (he said otherwise we go to sleep with the thing our body is fighting against!). Having the HEPA filter in my room is a good idea, but he suggested I look into having one for my garage workshop, since I spend hours out there. Also, he does recommend the nightly saline rinse. It cleans our nose of pollen and spores, and the salt helps calm inflammation at the openings of the e-tubes and clean out mucus. I'm also supposed to take a Zyrtec at bedtime.
He said that everybody's body reacts differently to an allergy...some people get hives, some have asthma, some suffer migraines, some have nasal and sinus problems...and some of us are unlucky enough to have e-tube and ear pressure issues.
I'm also supposed to use Flonase+Astelin at the same time. Both work a little differently, so they can be used concurrently. One is a steroidal spray and the other an antihistamine. It's safe to use both. He recommended I wean myself off Sudafed because it is not the safest thing to use forever. That will be difficult as it's the only thing I've found that seems to give me a few good hours.
In one month, at my follow-up we may do intradermal testing to find out more about allergy. He wanted me to try these new techniques first to see how much they help.
My new ear tube is starting to settle down. I still feel it when I burp or cough -- like a brief stabbing pain in the eardrum. My doctor yesterday said that after we become used to constantly monitoring for ear pressure symptoms, sometimes it takes our brain a while to figure out that the ear pressure issue is gone...even though we still "feel" the sensation. Both my tubes are open and look good, so there should be no residual pressure problems. I said that I thought I could feel the actual blockage in the e-tube, and he said he didn't think that was possible...so...not sure I completely agree with that. But otherwise, I was on the same page with this doctor and feel like we have a plan. And if allergy therapy doesn't do it, at least I know that new surgeries are being developed and show promise.
I also have spent some time researching the place in Geneva -- the doctor there is a colleague of/works with Dr. Poe, so I am sure he is on the cutting edge of ETD research, no pun intended... I would fly to Geneva to fix this if it came to it...heck, I'd fly anywhere with the air miles I've saved up for years. I always thought I'd use them for a vacation in Europe.
The Following User Says Thank You to jenni9033 For This Useful Post: Mia66 (10-06-2011)
I am so happy that you had such a productive appointment & that a plan has been established....this is all wonderful news.
Thank you so much for the details you have shared, some of which I am definately going to add to my repertoire.
I sure need some hope today & you have provided it.
Thank you for all the effort you put into sharing your knowledge.
I now also know how to position the nose spray nosle...so that the spray is directed to the E-tubes....I looked up the site as you suggested in a prior post.
Awesome, Mia...glad you found the site I mentioned & that you feel more hopeful. I feel more hopeful, too. This new doctor also impressed me because he talked about correct nasal spray position, and he's the first doc in all the ones I've seen in 10+ months who has mentioned this very important technique! Think about all the ETD sufferers getting no relief and wasting nasal sprays the world over, because nobody has instructed them to aim at their e-tubes instead of their upper sinuses???
The following user gives a hug of support to jenni9033: Mia66 (10-06-2011)
Hey, Jenni ! ...
If any one had told me a few months ago that I would be soooo happy about knowing which direction to point nasal spray.....after all these years. You are right , it is unbelieveable that this is not common knowledge....even the pharmacists don't seem to ahve a clue either.
Well it's Thanksgiving weekend here, ....good time to get all this terrific info & to celebrate Hope !!
I can relate! i wasted my first bottle of spray because i didn't know how to use it, i evenually paid for the 2nd bottle $130, but i didn't care, i wanted it to work so much! I'm on my 3rd bottle, so far no results, but at least i know it's getting to my E tubes!! hope u have better luck!
thank you dlt48 for sharing more about Dr weeks. Its good to know hes out there, not sure what else I should do, if putting tubes in is a good idea or not. Ive heard so many stories good and bad. But thats my Dr's only option.
Jenni I was trying to find the post you guys were talking about with the correct way to use nose spray, was curious where to find it, I want to make sure Im doing the same. My Dr told me to angle it to the direction of the ear. But whenever I do that the spray seems to bounce off the side of my nostril and just drip back down out my nose. I mean how far do I need to shove the tip up my nose for it not to do that? I know your not suppose to spray towards the septum and he says if you do thats what causes your nose to get bloody from the spray, but no matter what I do my nose gets bloody from using the spray. I also read some where that with ETD to angle the spray straight back like at a 90 degree angle from your face. So I was curious which technique is correct.
I do notice a difference from flonase and nasonex. Flonase made my nose bleed more and didnt seem to help with my symptoms, but nasonex helped more. When I dont use it - talk about sinus pain! So Im affraid to stop taking it.
Also curious Jenni about Astelin, does it seem like it has the same side effects as other antihistamines? My problem is I cant take decongestants and antihistamines, the side effects are too much for me. (Not a good thing with ETD)
When I started having this problem I did do the allergy testing too, had the shots for 3 years. They didnt help me, but that was a long time ago, I wonder if they are better now.
I do think allergies play a huge role too. Im in the process of restuffing our sectional couch. Same time this started again this year we got the new couch a couple weeks before, its filled with feathers. Hypoallergenic or not Im not taking a chance. Ive read alot about people sleeping with blankets and pillows with down goose or duck feathers and never think anything about an allergy to them. Coincidence or not for my case I dont know... but the feathers are going bye bye.