I have a diagnosis of “likely Meniere’s”. I’m a 45 yo active mother of three and a high school teacher. I had my first bout of recurrent BPPV in 2012 following the birth of my 2nd child. Epley always worked. No family history of Meniere’s. I have had environmental allergies (pollen, dust, mold) for years and got shots as a child but haven’t treated them with anything but nasal spray as an adult). I had mono at 19 and chicken pox as a kid. I suffer from GAD, OCD, and depression. I had the full gamut of testing for vestibular disorders (ECog, etc.) in 2017. All clear for Meniere’s at that time. This past fall I had a number of illnesses. Sinusitis/head cold in August, 1st time COVID in Sept., more sinusitis in late November, Flu A and a stomach bug in late December. We flew to Mexico for New Years (great trip!) but when we landed my ears felt full. Never went away in my left ear. GP said ETD and prescribed 9 day Prednisone taper which worked until it didn’t. 2/22 ENT said “permanent nerve damage due to illnesses or Meniere’s”. No testing. Put me on a 6 day course of Prednisone. I freaked out. 2/24 1st and really only bout of rotational vertigo lasting on and off for a couple of hours, nausea and vomiting. 2/26 received ITS in ENT’s office. 3/12 audiogram showed moderate-mild hearing loss in left ear. ENT put me on Betahistine (8 mg/2x daily) and agreed to a long course of Prednisone. Started with 60 mg for 3 days, 40 3 days, and then slowly tapered to 5 which is where I have been for about a week. I am keeping track of my hearing using the Mimi app. My hearing has fluctuated slightly but continues to improve once I am on a lowered dose for a day or two. Dizziness has largely subsided but I did have 5-7 minor dizzy spells the first month after the first big one. MRI and CT were clear ruling out tumors, SCDS. My symptoms: -fullness (sometimes in good ear also) -tinnitus (mostly quiet like when you put a seashell to your ear but has also been like a tea kettle at the beginning) -“Pop Rocks” or “rice krispies” tinnitus in both ears—I even feel this—like tiny bubbles popping -muffled hearing -brain fog -hyperacusis sometimes makes my eyes move to the right -pressure in ear canal (pushing on ear plug) sometimes makes my eyes move to the right (Hennebert’s sign) -lightheadedness (induced by exposure to fluorescent lighting, very busy environments or erratic movements) -Headaches I know it isn’t good to be on Prednisone long term. My doctor is very dismissive and I am getting a second opinion but can’t get in until the end of May. A neighbor who goes to that doctor and has AIED was put on the long course of Prednisone (a year) with success and I read this study Hearing Benefits of Clinical Management for Meniere’s Disease which is why I’m trying it. It hasn’t been easy. Questions: 1. If you have been on a long course of Prednisone (longer than a month) please share your taper if you are willing My doc is basically letting me decide and I want to do it carefully. 2. Please only share positive messages or offer successful outcomes. I am in many support groups and have talked to several sufferers and I feel hopeless based on what people share. 3. Thank you in advance for your expertise!
I’ve taken Prednisone but not long term. 2-3 weeks in the past when my hearing dips in my good ear. All hope should not be lost. Keep searching for your root cause, remembering that Menieres is just a label for a collection of symptoms that occur due to an unknown cause. Everyone has a cause, some of which can be treated and some maybe not so much. Either way, there are a lot of theories you should pursue.
Well this first part isn't exactly positive, but it may just be my body... I have taken a lot of prednisone in the last 8 months or so. Taking the prednisone has fixed my hearing/tinnitus/ear fullness each time. I was usually taking a week long course that started at 60mg for day one and tapered down 10mg each day. I've probably taken one of those packs a month now. Plus I have some 20mg Pred pills and I took a 10 day course of them starting at 60 for a few days then 40mg for a few and then 20 mg for a few days. While it did give me relief the relief always seemed short lived and I'm currently of the opinion that coming off of the Pred just causes another flare up (though I don't have enough data points to prove that). I was starting to question my ENT (and my 2nd opinion at a university) about how much Pred is too much and the ENT at the University said that taking 4 of those week long courses in a 12 month period was the limit and I had already taken that much in about 4 months. She got me onto getting the steroid injections in my ear and said I can basically do a whole bunch of those with very little concern. My local ENT's opinion on taking too much Pred was that in my circumstance (I'm already deaf in my left in and have Meniere's in my right) we should do everything we can to protect my hearing while we can as losing my hearing will be a pretty massive hit to quality of life and if we start seeing symptoms from too much Pred we will adjust our game plan down the road. My local ENT referred me to the University for a 2nd opinion and he said he wondered if they would put me on Pred long term as he said it's not uncommon for someone having flare ups are frequently as I seemed to be. The positive for me lately is I am not planning on taking any of my Pred again unless I get desperate and my ENT has been able to squeeze me into his schedule when I have a flare up. I am getting the ear injections and so far I seem to respond very positively too them.
Ok, so I'm chiming in a little on the later side but I may have an answer here. I've only been prescribed prednisone twice. The first time was unfortunately right after my last attack in May but I noticed it cleared my ears and I got all my hearing back, and the second was maybe 6 weeks after that when I had ear fullness and I got the same thing. The (now former) ENT - who still hasn't relented to admitting I have something like MD at this point - will not listen that it's working really well and maybe we need to consider a longer run at a much lower dose because I respond incredibly effectively and quickly to them. Like I have no symptoms at all after 36 hours or so. Anyway, while I'm waiting on appt to current ENT, I talk with a herbalist friend of mine who suggests I try trillium extract because it has anti-inflammation properties(I can't take anything related to ibuprofen) and gives me a bottle of it and to at first try a tablespoon a day for 2 weeks and then a teaspoon thereafter. I pay him for it and go to looking up trillium. Come to find out there are indeed anti-inflammation properties but also some low dosage bio-active steroids of some sort according to Bioactive Steroids and Saponins of the Genus Trillium I mean, that's a legit study on it and I've not been prescribed steroids since probably mid-June and my ear seems to be mostly clear. When the weather gets bad I start taking a tablespoon until it passes. I'm not necessarily recommending it but I haven't found any side effects so far other than it tasting not so great and it might be just the right dosage for you. You can find the stuff on Amazon. It'll be called "Bethroot" or something similar.
I would look into a higher dose of Betahistine. I am on 16 mg 3 X a day , safer than Pr zone, good luck, GOD bless, HE is the only one that can help us.
Hi, Just catching up with the forum. My mother was on prednizone for 23 years. It prolonged her life span but as it does long term, it can destroy organs and took her life. You can either class that as positive or negative depending on how you view life. Half full or half empty. Cheers
I switched from prednisone to Deflazcort and i feel really better, and don't feel the side effects of steroids anymore, but at the same time I don't have any data to compare