Newbie Here; Severe Vertigo, Increasing Tinnitus, Hearing Loss — Help?

[floridian2]

Dear Tinnitus Talk forum,

So glad I found you. The ENT has not helped at all, and I would welcome your voices of experience. I'll try to summarize; sorry for going on so long.

--Tinnitus since about 2012 but manageable, usually a low-medium roar and zinging or hissing sounds. History of ear infections as child and adult. (I'm 62.)

--October 16, 2020: awakened from a sound sleep to extreme 3-D room-spinning; violent vomiting for the next 6 hours (long after nothing was left). Could not walk or move, vertigo was that bad. Was so terrified; husband called 911 and I spent the night in the ER. CT scan there, blood tests, nothing. By 6am the morphine had calmed it and me down! Slept for a couple of days and was woozy and dizzy, but at least I could walk. ENT's advice was to wait and see, because he couldn't diagnose without knowing more. (no tests, I asked? No.)

--November 17th, 2020: SAME thing but no ER visit, since I knew what it was; the vomiting/bad vertigo only lasted 4 hours but the tinnitus was worse. ENT visit #2 showed I had lost hearing in left ear (my bad ear). Still no treatment; the advice was that if it happens again and you also experience hearing loss, come in for another test.

--January 24, 2021: Different thing: in the evening, increased tinnitus and a noticeable difference in what I can hear in the left (buzzy lower tones, metal-raspy sounding, and pitch is way off in that ear (a D sounds like a C or C sharp at best). So I went to sleep with emesis bags ready, and woke a couple of times, but it was just bad dizziness/nausea, not that insane three-dimensional-tumbleweed thing with violent vomiting. Managed not to throw up. (Hey, I'll take any victory at this point!)

Since then, three days ago. it's been loud, loud tinnitus on the left, normal tinnitus on the right. In the left ear, pitch is still off, raspy sounds still coming through that ear so that voices sound distorted on that side. ENT says he can schedule a hearing test on February 17th! Lovely. (I'm in north Florida and can get to Mayo Clinic in 4 hours; is that a good idea to try? This ENT is the only practice in town. Any recommendations about doctors to travel to, or if that is a good idea?)

Complications: I have lupus and hypothyroidism, both being well treated with medicines (Plaquenil and LDN for lupus, Liothyronine for thyroid). I asked the ENT if I could have some Prednisone, as I had heard it would help severe ear problems, but he said no. I do have a stash for lupus emergencies; should I try that?

I'm really at a loss. And scared. This has made it hard to work. I appreciate so much being able to tell this, and I hope to learn from your experiences what I should do. Thanks in advance.

 

[Drachen]

Hi there, floridian2!

I wish we were meeting under better circumstances. Your condition has presents as particularly worrisome.

Your ENT sounds like a real gem. I'm sorry to hear you have to deal with him given that's all that is available in your area. You might want to consider looking into cities nearby and finding another one, though I'm not sure if this is time- or cost-permitting. I don't know anything about the Mayo Clinic besides their online resources, so I can't speak to their worthiness, but you should probably find someone new. There's absolutely no reason that you should have received the care you have, especially when you are presenting with such odd symptoms.

On a side note, you may also want to consider visiting a neurologist as well.

I can't say I'm well versed in terms of the symptoms and problems you've been describing. I tentatively offer the idea that you may be experiencing something along the lines of labyrinthitis. While many of the symptoms match up, the duration you are still experiencing symptoms does not. It can, from what I've read, be recurrent though. This may be something you wish to bring up with the next medical professional you visit.

I wish I could offer you better, more substantial advice, and I hope that others here on the forum might be able to support you in this way. At the very least, I am hoping that you will be able to work through this and find the relief you both need and deserve.

 

[floridian2]

Thank you for your kind reply!

 

[billie48]

Welcome to the forum. One thing I used to do is to have vacations and fishing trips in Florida every winter before COVID-19. Too bad I can't go fishing again in the fishing paradise that is Florida.

Back to more serious subject, I truly empathize with your sufferings. Why? Because I have had very similar experiences and symptoms with my sudden hearing loss on December 10, 2020. I even posted a thread on the experience asking forum members for support. Perhaps for brevity on what kind of treatments you need for SSHL, you can read this thread and then respond with more questions if you need. Take care. God bless.

My Turn for Your Support — Woke Up with Sudden Hearing Loss and Severe Vertigo

 

[floridian2]

Thank you @billie48! I will head over to that thread.

This morning, when it was clear it was worse, less and less hearing in the left ear, and dizziness making it hard to walk and sit up, I called the doctor again but no help; nurse says they are overbooked and will see me on the 17th (that is 20 days from now), or I can go to the ER. (This is not an emergency; ER is for emergencies.) So I used some of my Methylprednisolone stash as if it were a Medrol Dosepak (I will taper it in just that way: 24mg, then 20 mg, 16 mg, 12 mg, 8 mg, 4 mg, 0 mg on each day). I don't believe in self medication, especially with such powerful stuff as the Prednisone group, but I am desperate; when you cannot get a doctor's help you have to do something to be able to stay upright and work! I look forward to learning more about what to do, where to find care in this area. The nearest cities are Jacksonville, where there is a Mayo Clinic, and Pensacola, where there is a big Naval Station and hospital. There is a big university center in Gainesville FL but really hard to get into, I hear.

Thanks again. Prednisone is already making me feel better, somewhat better able to hear out of that ear. But I wish I had not had to do this on my own.

 

[billie48]

Thanks again. Prednisone is already making me feel better, somewhat better able to hear out of that ear. But I wish I had not had to do this on my own.

Since your ENT didn't give you Prednisone, can you ask your family GP doctor for that? Here in Canada, it isn't that big a deal to get Prednisone treatment for sudden hearing loss. It is almost a general treatment protocol. Even ER gave me 10 days prescription of 50 or 60mg. So what is the reason for them to refuse to give you that? By the way, if you often have episodes of vertigo, you vertigo may be a result of Meniere's. Not sure if @glynis is available to help but she is quite knowledgeable about Meniere's. Perhaps she can tell if your have Meniere's.

 

[floridian2]

Dear @billie48.

No idea why that would not be prescribed, but I have obtained and am taking the Prednisone, and it is amazing: already starting to show improvement. I will try to contact @glynis as well (and search posts). I am actively seeking a new ENT in other towns, the nearest ENT being 3 hours from here.

Hope you all have a peaceful, quiet, happy weekend!

(We have very pronounced cold snap here: low tonight will be in the middle 30s F (about 2C). Brrrrrrrrrrrr. No fishing/sailing this weekend for those well enough to contemplate it.)

 

[billie48]

(We have very pronounced cold snap here: low tonight will be in the middle 30s F (about 2C). Brrrrrrrrrrrr. No fishing/sailing this weekend for those well enough to contemplate it.)

Wow! 2C! That is cold by Florida standard. It is basically the same temperature as our Vancouver up north in frigid Canada. Every winter in the last few years I spent time driving and visiting different cities and towns in Florida north and south and fishing in their piers. The most north I went was Jacksonville on the east side and Tampa/Clearwater Beach on the west side. I also visited and fished in Naple on the west side and Cocoa Beach, Sebastian Inlet Pier, Fort Pierce as well as Fort Lauderdale area piers. It is such a nice winter hideout for us Canadians in winter. We call ourselves the snowbirds from Canada. Sometimes I got hit with the cold front even while as far south as Nassau, Bahamas. I remember visiting the Atlantis Hotel and the beaches around it with my entire family on Caribbean cruise and we were all wearing thick goose down winter jackets, LOL.

Anyway, hope you will have speedy recovery from the proper treatment(s) you are and will be receiving. Take good care. God bless.

 

[floridian2]

Wow, that sounds like fun (except coming so far and still needing parkas). Today it is warmer: will be 18C / 64-5F so much more reasonable. Thank you again for the help. Hope your day is good, completely free of SSHL!