Sudden Hearing loss _{Page 81 of 105}

Suncasa - that is great news! Thanks and keep us posted on this! I'm curious - didn't you say your aldosterone levels were normal? Did you and your doctor decide to try it anyway?

An update - went to the acoustic neuroma specialist at stanford and he really doesn't think I have an AN, which is good (MRI that I had was hard to read, my first doctors weren't sure if it was an AN). Follow up with a new MRI in a year if I want to just to ease my mind, otherwise only if hearing gets worse. This doctor concurs with my first doctor that it's probably 'like' meniere's (technically called cochlear endolymphatic hydrops because there is no vertigo) and that I should maintain a low salt diet and some other things to keep it from getting worse.

Meanwhile the hearing in my bad ear fluctuates from almost all better down to annoying. So far it hasn't dipped any further than it started (in other words, it hasn't gotten worse) but each time it come up I get my hopes up and then it goes down again. Right now it's down to its lowest point in a month (I've started charting it). Tinnitus is back, grrr - it had pretty much disappeared - but it's just a low hum, nothing too bad. And I went to a movie for the first time since this happened - I'd been really worried about the hyperaccusiveness, but I stuck a little ball of cotton in my bad ear and that did the trick perfectly. So that was fun!

Shortcake, I think you and I have the same thing.

My aldosterone levels were normal on the first test but I was on 50 mg of prednisone and has been following a low-salt diet - both make aldosterone levels higher. I just did another test last week and will see what happened with that one now that I am down to 5 mg of pred.

Dissapointingly, the aldosterone is not having the same wammy affect that it did the first couple of time I took it. But I think it takes an accumulating effect. We'll see. I wake up every morning so far to low levels and humming, annoying tinnitus. Funny, it calmed down today around noon after aldosterone and accupuncture and then I went to the gym and guess what- tinnutus is back and the hearing is out again! I thought exercise was good for stuff like this!

Oh well...Shortcake- I think you have the same kind of Menieres that I do...just guessing.

Hi Shortcake- I started taking the diuretic the specialist prescribed (triamterene/HCTZ) and it has totally cleared out all the fluid in my ears. My hearing is back almost 100%. I think that with the combination of the aldosterone is very helpful. I am not usually one for traditional medicine but I couldn't believe how well the diuretic worked. Hearing was out again this a.m. but cleared out by noon. Hopefully it will stick. Just sharing what seems to be working for me.

Hi all,

New to the forums, but I have been reading quite a bit. I am sorry to say that I have joined the group of SSHL victims...

I am a very healthy 21 yo male with no prior hearing problems. I lost my hearing about a week ago (10PM last saturday) and went to the ENT on Monday. I have been on prednisone since then with no real improvement.

My tinnitus subsides sometimes, and its at those points that I can hear a bit better (for instance a very low, muffled phone conversation). For the most part though I really can't hear anything.

My audiologist didnt tell me everything, but she told my dad that I had a loss of like 20-40db in my left ear.

Getting my MRI today to make sure I don't have an AN.

Also, I have been taking between 800-1200 IUs of Vitamin E, 240mg of Gingko B. as well as 1000mg of Acai extract.

I am not very optimistic at this point and am going to try and convince my ENT to give me steroid shots as soon as possible.

HI mss55699-

so sorry!!

How much prednisone did he prescribe? Is it only the one ear?

I have been dealing with this for 4 months. I had success with prednisone and am having success now with diruetics but my hearing is still going tout at night to return mid morning.

I really hope you recover soon. I know how much it sucks.

Samara

Hi Suncasa,

Fortunately it is only my left ear. the doctor prescribed 60Mgs of prednisone for 9 days, then a tapering dosage for the next 5 days.

I really can't tell if theres any improvement. It seems that I can hear my phone ringing when I call someone, and can even understand words in the phone. The problem with this is that I know sound can be transmitted to my good ear, so who knows if i really am getting any better.

I can definatly hear loud noises though (although they are distorted).

I really hope i continue my recovery...am I the youngest person on these boards? I can't find anyone under the age of 25 with SSHL other than me!

Hi mss55699-

Just wondering how you are coming along.

S.

My MRI was actually cancelled because the machine was broken. (I took a day off from work!)

My MRI is rescheduled for today (Thurs) directly before my follow up visit with my doctor.

I can still hear the dial tone of the phone clearly and for the first time since onset I can hear the 'beeps' when I push in the numbers...That must be a good sign.

I think my recovery is actually going well, but I'm keeping my fingers crossed as I know there can be a reduction in hearing after going off Prednisone.

I do want to thank everyone on this board though, not only has it made me feel not so lonely during this whole process (my friends/family really can't understand what it is like to lose hearing, but it gave me the good advice to go DIRECTLY to an ENT and to skip my primary care phys.

Cheers,

M

I really hope it continues to improve! glad to be of support. I was really freaked out when mine went out.

hi,
i am new to this forum.my ability 2 hear 4m my left ear is slowly reducing and sumtimes i hear d noise of wind blowing thru in my ear. i 1st recognised this problem wen i was 18 yrs old
n now i am 25 yrs old. initially i ignored this prob. then i started taking causticom about 3 yrs back. but i am not regularly taking it. after taking it d frequency of hearing d sound of wind blowing thru in my ear has lessen but i am not able to assess whether it has helped in my hearing problem. plz suggest a remedy 4 my hearing prob.

Hi Rani,

It definately sucks to lose your hearing...At least you weren't surprised at it, which is a little plus.

As for a suggestion, I would just say go to your ENT and see what s/he says. Yours sounds like its a chronic degenerative thing, so maybe something can be done.

As for me, My MRI came back normal, and I have regained 10dB in the high freq (My worst), but it is still in the 'midly severe' loss category. My low tones begin at normal and get worse as the freq. goes up.

I am staying on prednisone for 2 more weeks and getting my first injection Monday or Tuesday.

hi, mss55699

thanx 4 ur reply.
i m so sorry 4 ur prob but thank god i dont hv ne such prob. i m jst not able 2 hear mild/soft voices & i think d prob is increasing bcoz m not taking medicine regularly.jst now i hv completed my edu.& now i hv started paying attention 2 my prob. b4 dat i was engaged wid my studies & also d prob was not acute so i was ignoring it but now i m worried.

Suncasa - how great that the aldosterone + diuretic are working still! I just got back from vacation, and spent a good chunk of time moping because hearing has stayed at my personal 'low' point for the whole time. Next appt got bumped and is now in 2 weeks. I will ask what he knows of aldosterone. Ours does sound similar, except that mine seems to be best when I first wake up and then worse in the afternoon!

Hi mss -
Glad to hear you're having some improvement! Sounds like your doctor is on the ball. Those shots are worth trying, in my opinion, even though in my case the improvement didn't stick around for the most part. But it's standard to do the oral prednisone first, just like you're doing. I don't know the ages of others on the boards; I'm 35. How are you doing with the prednisone, by the way? That stuff sucks.

Hi Shortcake,

Doing ok on the prednisone...the only real side effect I'm getting is the mood swings. I can't tell if I'm depressed from losing my hearing or from the Prednisone...or both.

I can't wait to get my injections though, I'm just hoping they do something.

Even though my tests still show significant loss in the high freq. I feel like my hearing is at least somewhat functional now, so if the shots help me get from 68% to 75-80% speech discrimination, I think I could be ok.

I spent the last few days reading every post in this forum. This is by far the best resource for Sudden Hearing Loss on the internet.

SHL hit me about a month ago. My loss was only in the high frequencies so I guess I should feel lucky. I had the oral steroids and 1 shot exactly two weeks ago. The ENT doesn't want to give me another shot since he saw no improvement. I am thinking of getting another opinion, but I fear it is to late.

My biggest fear is it coming back and taking the rest of my hearing, or hitting my other ear. I also have tinnitus but I'm trying to adjust. For some reason my eyes have also been bothering me. The doctor thinks its stress.

Hi Danny -
I agree this is the best forum I've found also! (Plus some of the others are so depressing - the folks here are very supportive and optimistic!) If you believe a second shot would help, I'd still get a second opinion. I hear they can be helpful even 6 weeks out. I had 2 doctors, one recommended shots and one did not. I'm glad I tried them, though in my case the improvement didn't last, but I feel like I would have always wondered otherwise!

Thank you for your response shortcake. I guess if I had to live with this I could. I just wish I could stop worrying about getting it again or it hitting my good ear.

I wonder if there are any good precautions to take.

Hi Danny- There is an uncommon eye disorder that can cause weird ear problems. I don't know what the name of it is but it was a 'rule-out' with my hearing issues. I would suggest seeing a good eye doctor (not just the kind that fit for glasses) to make sure that this is not what you have. Sorry to hear about your SSHL- I totally relate to the fear.

Shortcake- here's an update-

My aldosterone levels were high actually when I got my blood-work so I had to stop taking it. (If you want some I still have 2 bottles!) I am having really good success on the diuretics and also I consulted with a doctor who is also an MD in CA. He prescribed following a diet called GAPS (you can google it). It helps re-build the body's immune system etc. I am doing it now as well as taking nystatin for candida. probiotics and a few other things including gingko and low-salt. My hearing is back quite a bit though I'm not sure it's 100%. I also found out that my thyroid was low (so strange b/c I'm only 43)- so I'm taking thyroid pills. Anyway- I had 2 bad days where it went out again though I think that was due to too much salt and a head cold. But other than that it's sticking pretty well. I am still trying to wean of the prednisone and am at 5mgs. A little afraid to go down much more until I'm sure I have stabilized. Anyway- Hope this helps.

In reading the most recent postings, I will share the following:

Rather than live in fear of another SSNHL event or problems with the other ear, I took on a proactive stance and added both autoimmune and vascular related supplements (including natural cholesterol-fighting supplements) to my daily regimen, only after a 2nd SSNHL event occurred in the same ear 15 months after the 1st. In addition, since no one could confirm why this happened, I eliminated anything I thought might have caused damage to the cilia--drugs like ibuprofen, exposure to dust, loud noises, excessive wind in the left ear by driving with my car window down, extra body weight that helped raise my already high cholesterol count.

It has now been almost 2 years since the last episode. I still live with tinnitus in the affected left ear, have hyperacusis and have learned not to focus on those things. For the most part, they are now background and I rarely notice them although they are always there.

I focus on what I have versus what I do not have. It's easy for me to say this, as I did recover my losses via oral Prednisone, and, in the last episode, a shot of Decadron at the end of the orals that eliminated the last vestiges of the hearing loss and echoing from that episode.

Also- Danny- how much was your loss? You might want to look into following the GAPS diet for awhile too. I don't know much about high frequency loss but if it is autoimmune related then you might benefit from this protocal.

Mine was 60-70 DB at the 4k and higher frequencies. My doctor didn't mention anything to me about autoimmune. He did take a lot of blood and it all came back OK.

Is there another type of doctor that I can go to to look into autoimmune problems?

Seattlestan,

I was wondering if you could give a little more detail on what supplements you have been taking?

Google Thomas Cowan MD. He is the MD I had a consultation with. He is a naturopath physician now. I don't know if he will be able to help but he seems to know his stuff. My initial blood-work was all fine too.

Danny2000
Since I was told SSNHL is either caused by viral, vascular or autoimmune issues I started taking the following to boost my immune system, many of which are antioxidants:

Turmeric
CoQ10
Arctic Cod Liver Oil (organge flavored)
Grape Seed Extract
Vitamin E
Vitamin D

Today, I am focusing on the 1st 3 and Vitamin D.

Has anyone been taking B-12 for this? I know it is supposed to be good for the ears. I've also started taking Ginkgo. I'm doing this without my physician's advice - he basically said 'it won't hurt, but it's a waste of your money.' So I'm curious what anyone else has heard from perhaps more holistic type doctors about these things.

Danny - a rheumatologist is an expert in autoimmune problems. However if all your bloodwork came back ok, you should not worry about that. They are able to check for antibodies in the blood and if you don't have one, you should be able to check 'autoimmune problem' off your list. Ask your doctor if he was checking for that - he probably was.

Suncasa - I will look up the GAPS diet. I'm frustrated because for the last couple months hearing has seemed to fluctuate up and down. But lately it stays down, even though I've been on the diuretic and been working on following the low salt diet. (That's harder than it sounds! I didn't cook much, and all pre-packaged or restaurant food is super high in salt.) What are you keeping your salt levels at? I'm shooting for 1200 but really I think I'm still up around 2000.