ETD driving me mad!
Posted , 6 users are following.
Hi! I'm new to the forum, but certainly not new to etd/ear problems! It all started with a middle ear infection when I was a baby, that completely perforated my eardrum that then had to be repaired by surgery 14 years ago... This summer has been horrendous, suffered horrendously with hay fever which has triggered etd, I have had 5 infections in the last 12 months too, 3 outer and 2 middle... I was on antibiotics for a middle ear infection about 3 weeks ago, and my ear has been horrendous ever since, feels so full of fluid, my hearing is so dull, and it's started fluttering occasionally too? Also the pain (although this isn't permanent)!! The worst was boxing day, we travelled and coming home we had to come over a major hill, the pressure/pain in my ear was so bad I couldn't even move my head! When I had tube problems a fair few years ago I saw ENT, one said I had to live with it, another said about grommets then changed his mind because of my previous op! All my GP has said is that I'm on the right meds! (Avamys steroid spray, and sterimed sinus rinse, as well as regular steaming) decongestants/spray doesn't make the slightest difference......... I'm at my wits end with it, and I'm worried about the long term impact, especially as I already have mild hearing loss from the perforation/operation! Any advice? Tips?
Thank you, sorry for the long post, think I just needed to rant!
0 likes, 9 replies
mel74181 12345678901
Posted
Hi. I have no tips sorry but I know exactly how you feel. I have had it for a year and been told by 3 ents to live with it. I was on avamys but just swapped to mometasone. Feel free to message me
12345678901 mel74181
Posted
Thank you for replying! It helps massively to know I'm not alone! I think I may need a change from Avamys, but GP said I'm on the right meds although I'm not convinced! The Avamys is really good for sinus pain and inflammation though! I think I might need to get another appointment, I hate going but as it has got so much worse following the middle ear infection, and within the next 6-8 weeks my hay fever will be back so really need something changing/doing.......
Thank you
paige0501 12345678901
Posted
Hello!
I suffered with ETD from ages 18-21 (still suffer sometimes, but it is sooo much better now!!) My doctor initially told me to "live with it" but after years crying in bed over how much my ears were driving my insane, I decided it was time for action! I went back to the doctor and they noticed that the pressure in my ears were off and I was losing hearing in my right ear. They fixed this problem by putting PE tubes in my ears this June. (These are the same tubes they give children who get chronic ear infections.) I have found MUCH relief. They are not perfect, and my ears probably never will be perfect .. 😦 but I am able to live so much happier than ever. I would talk to your ENT about getting tubes in your ear to give you some relief. My recovery of getting these tubes was one of the worst weeks of my life, I will say that. But I am SO much happier, and I can finally HEAR normally. I HOPE this helps you, and I am so sorry that you are dealing with this!
12345678901 paige0501
Posted
Thank you for replying and for your advice! So glad to hear you found relief, I will definitely be going back and pushing for an ENT referral!
Thank you
steve77387 12345678901
Posted
I'm not a doctor. I know nothing but my own experience. I know its maddening. If the nasal sprays and rinses aren't working, stop taking them for a while. Maybe 2-3 weeks. Not sure if we have the same name for meds. Start back with Flonase Sensimist at night before bed. See if there is a difference after the 1st or 2nd morning. If nothing happens after 3-4 days, don't waste your time. Nasal sprays made my good ear worse at one point. If you have fluid in your ears, start with standard Sudafed. If thats not strong enough, try 12 hour Claratin D. If you need to go full force, my old school doctor gave me Prednisone when my ear was about to rupture. Clears the fluid, but the side effects aren't nice. I'm not sure what else to do. I can't believe there's no cure for everyone. I assume with all the ear infections, you don't drink milk?
12345678901 steve77387
Posted
Thank you for replying and all your helpful advice! I have had 3 lots of prednisolone this year due to hay fever/asthma, and I did find that they cleared my ear, although as soon as I finished them it went back to being blocked/full of pressure. I don't find sudafed tablets make any difference, I haven't heard of clarityn d though so I will look into that, thank you! Yes, I do drink milk, routine blood tests showed my calcium and vitamin d levels were low so I've been drinking more milk and I'm on supplements for another couple of weeks!
Thanks
aspano79 12345678901
Posted
Hang in there. One day your ears will just pop open and it's the biggest relief you will ever experience. Tubes help if you never had them. Also, try the Valsalva Maneuver twice a day. There is a device called the Eustachi that basically does that maneuver for you.
I'm not a doctor but I've had 5 surgeries in the last 6 years on ETD including balloon dilation and prosthesis ear drum implants because I suffer from chronic popping and crackling in my ears, none of the surgeries were successful. My ETD comes and goes frequently and sometimes for longer than a year. It always goes away at one point. But the crackling for is always there.
Just remember there are many medical procedures that can help your ETD. Sounds like medicine isn't working for you, next you should see an ENT and if they have no answers asked to be referred to an ear specialist, ENT's are not ear specialists and only perform basic ear surgeries like tubes. If you see an actual ear specialist, they will have more answers for you and can even perform tube surgery right in their office while you visit them.
sandra_45010 aspano79
Posted
how do you feel after the balloon dilation surgery?
sandra_45010 12345678901
Posted
I have had EDT for around 8 years, at the beginning the symptoms were very bad but tubes on my eardrum helped a bit , I noticed that my stress level will make it much worse, there was a period of time (like a year) I didn't feel anything ,I was just fine, then out of a sudden the symptoms came back , from there it goes away for some time then again the pain, fullness and crackling, I'm scare of doing the ballon dilation because I've heard it's not that helpful and can make it much worse than before. I guess we need to leave with it and just try to control the stress.