Hi Kurtin, Thanks for your posts. I have bilateral cochlear hydrops and had a resurgence of episodes this past December in one ear. Treated it with oral steroids first which in the past has put me in remission but these only helped temporarily. My doctor then did a series of steroid injections (which worked wonderfully on my other ear a few years ago). After the first one I had increased fullness in that ear with tinnitus and pressure that wouldn't go away. Some days after I do my saline rinse and blow my nose it will pop open temporarily but then closes shut. I just had my last injection yesterday and there has been no change with the fullness, tinnitus and pressure since that first injection. My doctor claims that it is a result of the hole in my eardrum and/or the phenol anesthetic but this makes no sense to me, is not in any of the literature I have read, and didn't happen when I had injections in my other ear. My hearing is better- it now hovers at only a 10-15 dB loss in the lowest frequency but this fullness and pressure is unrelenting and driving me crazy. In some ways, it's much worse than having an episode. I'm so sorry to hear that yours has continued for so long and I also fear that this is my new normal. I'm going to see the doctor who did my first injection (not the same as my current doctor) and ask his thoughts. My fear is no one really knows and therefore it can't be treated. I wonder if the injection somehow triggered something related to the middle ear muscles. Anyway, your post helps with some additional information. Thanks and I hope you have found some relief.
Hi everyone, I don't want to hijack this thread as I follow along, but I was wondering if anybody who's seen Dr. Babu can comment on his willingness to do in ear steroid injections in conjunction with antivirals. Some of you might have seen my other thread asking for a competent ENT that has experience with Meniere's within Canada and I'm thinking that Dr. Babu might be an option for me. Of course, if I'm going to make the 3.5 hour trip to his office and pay out of pocket I want to know that they're competent and willing to try all the latest treatments based on their diagnosis. Any comments are appreciated.
No progress so far. The ventilation tube inserted a month ago has been odd. What I perceive as a membrane further in my middle ear no longer opens and shuts all the time. Now it is more in a state of just being shut. The pressure I could previously force into the eustachian tube that would cause that temporary open sensation no longer works with the ventilation tube inserted. The mind boggling battle of that constant open and shut all day long I do NOT miss, but now I'm noticing more vertigo type symptoms and I've had to be more faithful about taking Betahistine on a regular schedule and even adding Meclizine a number of times due to some spinning situations. My hearing seems a bit worse to me with the tube in as well. When I could keep it 'open' for a few seconds my hearing was better. Different doctors I've seen recently have differing opinions about leaving the tube in until it falls out or having it removed. I, too, had a course of oral steroids about 6 weeks ago...did nothing. One of my doctors wants me to do a series of 3 intratympanic steroid injections over the next week or so to see if that will help. I've had these steroid injections before...I believe 5 in total over the last year (but more spread out rather than close together like these next 3 are scheduled to be). They never really did anything, but I'm willing to give it another try. They consider them 'surgery' though and they are a bit pricey. They'll be using the vent tube presently inserted to administer the injections. A couple of other items of consideration that I've read about (and have been drawn to my attention more recently by providers) are such possible things as fistulas or third window syndrome involving the round window potentially causing such problems that I'm experiencing. I may be looking further into those next if these next things don't help. If anyone reading this thread has any thoughts on either of those items I'd be greatly interested in hearing from you. I'm especially interested in there are highly experienced/knowledgeable providers out there successfully handling anyones fistulas or third window issues. I am also trying to get into a naturopathic physician to look at the whole gut related issues as they may pertain to ear dysfunction. After reading some other comments about fungal or leaky gut situations causing ear issues I decided it certainly cannot hurt to investigate that further as well. I don't think that is my issue, but am certainly willing to eliminate that as a possibility. Still maintaining my full AV, JOH plus all the other supplements and upper cervical chiropractic but really no positive change since my hearing dropped back to pre-antiviral levels in early November 2022.
Hey Kurtin, great to read up on your updates. I don't have much to add, but I want to say how sorry I am to hear that you're still struggling with this. I will say it's funny that I started Famciclovir in August 2021, and it was great up until November 2021, when I then had a flare-up of fullness. Interesting how you followed a similar timeline! Though, I think it is likely coincidental. I feel grateful that I went the entirety of 2022 with not a single issue. There was just one 4-hour-long case in July where my hearing seemed to go muffled in my right ear, but it recovered so quickly I didn't have much time to reason with it, and who knows, maybe it was a whack earwax situation (but it was very scary). The main lifestyle changes I've implemented in 2022: 1. Lysine, 1g 3/day. 2. Vit D; I was taking 10,000 IUs a day until my doctor said my levels were wayyyy to high. I'm tapering down now, but point is, got a ton of Vit D in me. 3. Following my TMJD diagnosis (again, unsure exactly if this is my root cause), my awareness of my jaw misalignment, as well as overall posture and muscle tension, has probably helped keep my ears feeling more balanced. I started reguarily working out. Hope things can improve for you soon!
Hi Kurtin, Thanks for your posts, they are very informative and have helped me investigate other possibilities. I wonder for you, given how everything started (flight), if a perilymph fistula would be a good thing to pursue- I've read that those can occur from pressure changes in flight. It's so frustrating that basically everything in your middle or inner ear causes the same symptoms and are so hard to diagnose. I can tell you that up until the injections I just got, I have never experienced steady fullness like this and I've had this since 2014. This would make me question a CH diagnosis for you. Mine always came in episodes; some lasted 2-3 days but never more than that. I am wondering if maybe my doctor created some kind of window injury with the steroid injection in my case, but I only found one case in the research of that, and it was extreme. There never seem to be clear answers. It seems like the tube in your ear is not helping. My doctor claims that tubes actually create a feeling of fullness in the ear. At any rate, I hope you can get some answers soon!
did Kurtin also have a flight problem or does the blog think they are responding? My name is Deb Thanks
Also responding to Runner...I did first notice my initial symptoms 3 years ago after a flight. Definitely nothing on the order of what I experience now and things seemed to clear up for months after the flight. I'm not even sure there is a connection, but wouldn't rule it out. I am presently taking another round of 3 Dexamethasone Injections...2 down and one more to go. I've tried them before with little success, but one doctor wanted me to try again. We discussed removing the tube tonight. It is the route for the shots right now, but the doctor is okay with removing it in a few weeks if I don't think it has made a difference. The only positive difference is that I don't have that constant opening and shutting sensation all day long. Has it done anything to help my fullness? No, that is worse and vertigo type feeling much worse. I'm having to take Betahistine faithfully 3 times a day at an 8 mg dose where I was only taking one dose at night prior to the ventilation tube. Any negative effect on hearing? No, now equally flat with or without the ventilation tube.
Hey Kurtin and everyone, I've been recently diagnosed with cochlear hydrops, having symptoms over the past few months. I've been seeing an ENT and we've tried oral steroids with mixed results. He's not willing to try antivirals, doesn't believe they work. Does anyone know an ENT in the New York area willing to give antivirals a shot? I've started the JOH regimen as well. Thanks.