Hi, folks! Since 2015-2016 I've had reccurrent spells of pressure in the ear, worsened tinnitus and loss of hearing. The first couple of years these spells came 1-2 times a year and would resolve by its own within a few weeks, with my hearing coming back to normal. In the timespan 2018-2020 i took short courses of prednisone to make symptoms go away faster, and it worked like charm every single time. 50-60 mg of prednisone over the course of a few days would relieve symptoms completely. In 2020 I was hit by a spell that lasted almost the entire year, and the symptoms was so awful I contemplated suicide. For some reason prednisone did not work, although in hindsight I might have had effect by taking a larger dose (300 mg per day at the start of a course is seemingly normal for other acute illnesses that require prednisone). My audiograms during this time was very bad (socially deaf they called me, with 60-70 db loss in bass and mid tones. I had hyperacusis, too. Then at christmas 2020 the symptoms receded by its own again over the course of a minute or two. It was like turning a switch and my hearing came back. I could actually hear gurgling sounds within my ear as what I presume was excess endolymph, drained out of the cochlea. It was a nothing short of a miracle, but I've suffered from severe anxiety the past three years that it might come back one day. And of course this summer it did come back, and my life is in shambles again, and every day is complete terror. I'm on my third course of prednisone since summer, and it brings my hearing back and relieves the horrible pressure in my ear. It also has a great effect on the tinnitus. I had an audiogram again a couple of weeks ago, and it turned out my hearing has come back pretty much to normal levels except a 15-20 db loss in the very high frequent range. But every time I taper off the prednisone (below 10 mg per day) the symptoms comes back in full force. I'm at my wits end, my friends. I'm aware I can't be on prednisone for the rest of my life, but I'm not joking when I say I'd rather die from prednisone-related side effects rather than living out the remainder of my life with these symptoms. PS: I started on antivirals for the first time yesterday (I have a very open minded GP). I hope to God these can grant the same relief as prednisone does. If not I have no idea what to do. Just taper off the prednisone and let this horrible thing basically take my life away? PS II: I've tried cutting out coffee, salt, wine, sugar, wheat and pretty much all obvious allergen candidates. It has had zero effect whatosever.
Does Your Cochlear Hydrops come on during the day, after you wake up, or in the middle of the night? Mine is the worst after I wake up and resolves over the day. I don't know if it is because of the horizontal position or because of sleep apnea.
I've also noticed that the ear feels more "clogged" in the morning, and that it gets slightly better throughout the day. I was also convinced for a while that the side I was lying on had an impact (worse when lying on the "bad" ear") but I have not concluded anything yet. By the way: I learned just a couple of hours ago that my younger cousin (girl) suffers from the exact symptoms as me. I knew she recently got an hearing aid, but I never knew why. Her GP (and ENT) is of course completely clueless and have just diagnosed her with "tinnitus and hearing loss". My aunt from the same side of the family recently got diagnosed with a classic case of Menieres, so I'm guessing this is hereditary. From what I've read about 15 % of all menieres cases are of hereditary, and what they call "autosomal dominant pattern of inheritance". This means, if I understand this correctly, that any offspring I might have will have a 50 % chance of inheriting the defective gene. I will never, ever have children.
My symptoms started very much like yours. My left ear would feel "full" a few times a year (more often than not in the summer) and I would sometimes go completely deaf in that ear. I mean stone cold deaf. So I would stop all salt and take sudifed and a diuretic which seemed to help. I did take predniisone which helped but still no miracle cure. This went on for many, many years until finally I went into full blown meniers with drop vertigo. My general feeling, and I've said this many times on this forum, is that for me my goal is to keep that ear from filling. That is what deafens me and is what eventually sends me into vertigo. I'm pretty sure that one of my triggers are allergies which would explain why I got hit more in the summer than winter. So I take allergy pills and, most important, medicines (mostly herbal) dedicated to keeping the inner ear dry. I also do the John from Ohio regime. Whatever is working, I'm vertigo and earfullness free and have been for the last two years.
What herbs dou you take? I have not yet been diagnosed, but hearing is weak, tinnitus is ears, migraines, extremes dizziness, and vomiting. I started the JOH regime. I pray it will go away. Thx
I am on JOH since I had 70 dB hearing loss back in May. Since then my cochlea recovered nearly 100% and I just get the occasional slight dip in hearing around 100hz. The only thing I am stuck with now is tinnitus that is around the 4000hz mark. Sometimes it sounds like a million crickets, sometimes it's more like random clicking, just like a hard drive defragmenting. The last audio gram I took showed good symmetrical hearing and only 15-20 dB conductive hearing loss in both ears. There is a high chance that JOH helped, especially the lysine. I also havent had a cold sore in that time. Reducing oxidative stress and inflammation with a good diet and supplements also seems to help a lot.
Migraines also seem to trigger hydrops for me, so I try to identify triggers and avoid them. To stop a migraine before it gets painful, I take 400mg ibuprofen and drink a coffee slowly. I take lysine, msm, slow release vitamin c, gotu kola extract, gingko extract, pine bark extract and sometimes fisetin+quercetin. Some of these may just be placebo but as long as I stay healthy I am believing in it. Just in case it ever becomes a vertigo spell I carry vertigo-vomex with me.
The two herbal products I take to keep my inner ear from filling are "Inner-Ear Balance", "Clear Sinus and Ears", as well as a prescribed diuretic. I also take an allergy pill as well as quercetin. I've just recently added Fisetin and Apigenin. There is a discussion on "Inner -Ear Balance" on a thread here on the forum. My general feeling is that nothing is going to be the overnight miracle cure but if I can put together a group of products that will help keep that ear from filling...great. As mentioned, I also do the JOH regime. As far as tinnitis goes... I honestly do not think anything will cure it. As deafness gets worse so does the tinnitis... it fills the void. The hydrops that started over 20 years ago in my left was just the beginning of my hearing loss. I've lost hearing in my right ear as well. Such is life and thank goodness for hearing aids.
Thanks for your response. It is greatly appreciated as our symptoms seem so similar, but also because the ENTs here in Norway doesn't seem to know much about hydrops, or what to do to counter it. I agree that the prednisone is no miracle cure, but to this day it is the only thing that gives me relief. I can slowly start going deaf, with pressure and tinnitus slowly increasing, but as soon as I pop 30-60 mg of prednisone, the symptoms are greatly reduced after a few hours. I've also started taking allergy pills (aerius) and nasal spray (dymista), but it doesn't seem to affect the hydrops whatsoever. I'm worried that since in my case this most likely is hereditary/genetic that there is little I can do do influence the illness. It's extremely frustratring, depressing (I'm on antidepressants) and scary/angst inducing. It's like having a gun pointed to my head, never knowing when the trigger is pulled.
So miserable at the moment. I cannot go on with prednisone without risking my health, and now the aural fullness, tinnitus and deafness is has returned to what I can only describe as unbearable. How do people cope living like this? I can't even begin to fathom the horrow of having this condition on both ears.
I’ll tell you this, it’s a lot of pills and hard to keep up with it. I think I’ve been taking the pills for about a week. When you order from vita cost order the 500 mg. Size. Don’t double up to 1000mg. I made that mistake and pills are Jared to swallow. Also, hard to take the L lysine at the odd times. I have not been diagnosed but can have 12 hours of super dizzy attacks with vomiting and headaches (w/ sensitivity to sounds, light, smell). Ears are always stuffy, etc. along with tinnitus. Bless you
Yea, that is the problem with prednisone... the long term effects are not good. We are all on this boat together only at different sections of the river. Have faith, it will get better if you work at it. As I've mentioned earlier, i have no hope in ever getting rid of the tinnitis. From personal experience I can only say that in time you just accept it and live with it. But, as i've mentioned earlier, I do believe the hydrops and resulting deafness can be managed. My overall deafness has gotten worse over the years but that's just my age and a lifetime of loud music. I have not had a serious hydrops attack (and the resulting total deafness in my left ear) for two years now I'm pretty confident that it is because of my regime. Get going with the JOH and give the herbal meds i mentioned a try. Also try a diuretic and cut your salt intake. And remember, from what i have seen on this forum, not everyone has the same symptoms or causes and what works for some may not work for others. But there have been a lot of positive results here and you will find your "right mix".