Sudden Hearing loss _{Page 34 of 105}

Happy holidays to all of you! I caught a cold a few weeks ago and it triggered bad asthma. I am ok now. I can tell you, though, it was the almost first time I did not think about my hearing loss, tinnitus or this horrible supersensitivity to sounds. When I was gasping for air, it seemed everything else was less important... Strange. Stay warm. Love you all.

Hello All,
Is there something that I am missing?
This forum is dead, why is that?
Take care

Hope01

I was wondering the same thing. I know I have not participated for a while due to awaiting a visit to my ENT on the 8th to push for proactivity from her community, versus being satisfied that I have my hearing back, albeit, with the tinnitus still ever present.

Seattlestan,
Thanks for the reply. Have you heard from Nitrams2000?
I believe you either call each other or email back and forth.
I sent him an email twice and no reply. He always sent a reply even if very short. I hope he is OK.
I sound like a worried Mom, but I recall when he was very depressed, hopefully he is OK.
Take care

Hope01

I have his phone number and will call him.

Thanks Stan,
I have the phone number also (he gave it out in one of his posts).
But it will better for you to call, since I am a female and I would not want to cause any harm between him and his wife.
You never know how people react.
There is one thing I want to ask you: Did you get the onset of your SSHL in the same ear or was the second onset in the other ear? I will see Dr Steven Rauch on the 12th and I will ask him about your issue.
You can look up Dr Steven Rauch on the net, he is the primary investigator for SSHL at MEEI in Boston.
Take care

I am a 41 year old school teacher in England who woke up last Saturday (25th November) with marked deafness, noises and echoing in my left ear. During the past 4 years I had 2 bouts of labrynthitis, a couple of minor ear infections and slight hearing loss in the high frequencies which did not warrant any further investigation. I have read the forum and have lots in common with many of you! My own G.P did not treat my situation as serious so I took myself down to our Hospital casualty Department and was admitted for 48 hrs of tests and drugs including Carbogen gas, High dose Prednisolone, anti-virals etc. I am awaiting test results for Lyme Disease and an MRI scan and have been seen again today as I have no improvement in hearing, noise/tinnitus or feeling of pressure and fullness. What has shocked me as much as my predicament is the knowledge that my trauma is 'invisible' and for some people - even medics - Funny! When I told the doctor at Casualty that I had metallic ringing noises in my ears when I moved my head he said 'thats just your necklace jangling'. Like many I think I could cope with the deafness but the noises, tinnitus, confusion, lack of sound direction and everything else that goes with it is frightening, alienating and confusing. Fortunately my ENT has signed me off work when my GP said 'well no need for that you might have to get used to it'. Good luck all, at least I am not alone.

Hope01

It was the same ear both times, the left one.

JeWel41

Once again I am appalled at the lack of sympathy, insight, understanding, etc. that is exhibited by some of the physicians. I would be curious to see their reaction if they experienced what you have and some of the others in this forum. I have had a series of ear issues over the last several years....spores, infections, culminating in SSNHL in Aug 2005 and again in Oct 2006. When I postulated that there must be some systemic connection, they indicated that they were un-related!! My gut tells me differently. You are not alone.

Hello ALL!!! and a not for JeWeL41

hello all hope turkey day was good!! and holidays are treating you well.

Hope! I love you to death. just checked and got emails from you. I'm going to reply tomorrow. sorry for delay. I would pay 1 million dollars to make you my mom!!

thank you and settlestan for your kind words. So far my situation is the same. my left ear which was affected has healed and my right ear rings. actually both ears ring but I hear 2 different sounds. one is the normal sound you always hear. most people hear some sort of ringing. thats the normnal sound i hear but i hear that in both ears and mostly only when it is silent.... now my right ear rings all the time , some days is worse then others so when I have a bad day I just deal with it and find comfort in knowing maybe tomorrow will be a better day but yes mostly it is my right ear ringing and ofcourse none of the idiot docotrs know why.

The ringing in my right ear that I do hear sometimes is akways there but just louder sometimes. it is a very high piched sound. sound almost like a dog whistle that got wate in the whistle. ' If that makes any sense at all'

here is things I have gotten used too. I can not go to bed without my melatonin or my lunesta. I also have to a fan running in my room for noise. I am still working on getting my weight down from the steroids but I am only 7 pounds from my original weight. YEAH!!!!!

You guys are right it is very deppressing and scary. especially to think that one day it may comeback but I beleive that you can will your self well and sick so I try to stay positive. I try to work out and keep my mind off of it.

now a note for JeWeL41.

I know your situation sounds horrible and trust me it is... I know, it happpened to me. I will pray for you. I can tell you what I have down and it may or may not help but you must try them for results. they helped me.

1. First of make sure they got the steroids right. Its 60MG a day for atleast 10 days. and you might have to do this more then once.

2. and most important... find someone that does ear shots of streoids to the ear. this is very important. the shot I am talking about is a injection of steroids. they can use many different types but the most common is called decadron.

3. also consider accupuncture. this helps allot to but make sure he is treating you for inflamation and immune system.

4. vitamins. I foyu will look at my past post you will see i take more stuff then you can think of but the most important ones are.

1. colloidal silver
2. liver tonic 100% ayurvedic formula
3. Vitamin nutaural Vit. B1, B6, B12, tons of C and E. Zinc.
4. glucosamine 500mg
5. MSM 500mg
6. lipoflavin vitamins
7. Co Q-10 400mg 2 a day
8. Sonarx
9. Garlic 100 mg 2 a day
10. calm from dolisos whih conist of chamoilla, coffea crud, gelsemium, ignatia amara, passiflora inc,
11. kali phosphoricum
12. hepar sulphuris calcareum,
13. belladonna
14. phosphorus
15. kali muriaticum
16. sulphur
17. arnica montana
18. clear tinniitus. from walgreens.

I also completly have cut out of my life.

1. cigars
2. salt
3. caffeine
4. sugar
5. aspartine
6. alcahol

these things have worked for me. I am not completly healed but I got back 90% of my hearing or more i think and the ringing is low enough i can deal with. I can also tell you that fluid in your ear is divided between 3 walls. you inner hear, middle ear and outer ear, these fluids are effected by who you are and what you eat just like the rest of your body. The last part was very important. I have tested and found out any time I had alcohal or to much high sugar items or cheated on my diet , ,, the next day the rining was always worse. FOLLOW YOUR DIET YOU SET!!!

I wish you well and I pray god will find your way home to his arms and heal you.

Please keep posting and let us know how you are... Hope I will send some emails . I was away for a short bit but now i am back yeah!!!

JeWeL41

make sure to read my above post at the end.... the end part was for you. please let us know if we can help. read my other posts. it will give you things to try and tests you can take that may help you find what is wrong. god bless

Thanks all for your support I am already taking Vitamin E and Glucosamine and I think my steroid dose is right but I will definitely ask about the injection though it sounds a bit nasty - is it painful? I had no pain at the start of this but now i do in and around my ear, jaw and neck is this common?

JeWeL41 the ear injection will not hurt you and does not hurt at all. it is actually allot better for you then taking regular sterods. less side effects.

the pains you mentioned having do not happen to everyone but they are a common thing. i got them too. alot of what you feel my be your steroids but some of your problems could be vascular..

this is just a opinion but since you have allready had a few run ins with your ears. .. start to look for somethings like vascular, muscle relted, TMJ or miners disease or

Barre-Lieou
link-
http://www.wehelpwhathurts.homestead.com/barrelieou.html

sympathetic-syndrome

link- http://www.rsdinfocenter.com/

JeWeL41
Each time I hear about some new person that got an onset of SSHL, I feel bad.
I am one where the steroids did not help. Also here on the East Coast of the US, I should rather say the Boston area, they do not believe in the shots into the ear. But they really seem to help.
Follow Nitrams2000's advice in an earlier post, and insist on getting the shots into the ear. According to many posts on this forum they do help.
I am still mad that I could not get them.
I second Nitrams2000's motion to take supplements and to be on a stric diet. Each time I get off my diet the Tinnitus gets worse.
I wish you well and hope that you will recover from this sudden deafness

Nitrams2000
I am so glad that you are OK, I was truly worried that you were very sick or had an accident.
Have a good day.
Your Cyberspace Mom LOL

Mertie,
I reread your last post and you did not mention that you avoid salt?
I believe that salt is also a culprit when it comes to the ears.
I am glad to hear that you have regained back a lot of your hearing.
Take care and be well

Thanks again I can't tell you the psychological effect of just knowing that i am not alone. I ventured to the hairdresser this morning and was bombarded with noise so now my head is in a painful fog! How many people get the hearing back? What about hearing aids - are they useful, do they help?

JeWel41 & Others

I had the shot of Decadron after 10 days of oral Prednisone at the level stated by Nitrams2000. By the time of the shot I had 80% recovery, with some echoing in my ear with high frequency voices, which the shot cured and I measured out at 100% recovery. The shot as Nitrams said, is not painful. You feel the liquid and it might be lower than body temperature, but not painful.

Supplement-wise, I have added Astralagus (immune-related) to by box of pills, just in case part of my probelm is auto-immune related. They believe it to be viral. I want to second what Nitrams is doing around elimination of some stuff we should tone down on anyway, specically sugar. I am coming to believe, by talking to my body work therapist (for an inflammed achilles)who has had to self diagnose on a lot of things, that sugar could be a major culprit for me, especially with so many infections, etc. related to the ear. I have 2 drinks a day of alchol and am concluding I need to eliminate this and then see what effects there are, including measuring my cholesterol and triglycerides which have been very high for years. If there is a correlation, I opt for no more hearing problems (and hopefully lessened tinnitus as Nitrams has experienced)rather than having my daily alcohol intake at my local Cheers bar!!

Hi Hope01,
Yes I forgot to say I dont have Salt and always look for the Sodium level in all foods.
Sodium can contribute to tinnitus as well but upsets the balance of fluid in the ear which can contribute to hearing loss and tinnitus.

I must do a full tome line of medications etc as now that I have finished the IV antivirals I am on the tablet form of the same thing.

I get bad neck and shoulder pain and stiffness and when that flares up it affects the ringing in my ears also.

Not much fun and hard work keeping it all stable but so thankful always for what I have got back.
Thank you for your kind words too.

When I see someone new on here I cant help but think there must beone common denominator for us all? as it seems to happen in the same way to everyone, just don't know what it is yet.

JeWel41

Hang in there and take what you can from this Forum there is so much here and miracles do happen our thoughts and prayers are with you, never give up hope.

Mertie,
Thanks for the reply, I was sure that you had simply forgotten to mention salt.
To all,
I too believe that there is a commun denominator in all these onsets of SSHL. What puzzles me and lets me believe it is the fact that when you talk with a general practitioner or a pharmacist of a certain age, they have no clue about SSHL, so I believe that it must have been very rare years ago and therefore it was not even mentioned in medical school in those days.
Is it something in the air, something we eat, ototoxic medications, our immune systems or what?....but I really feel that it has to do with our lives now, maybe the stress we all experience?.....
Hopefully somebody will eventually be able to pin this thing down...I know that Dr. Steven Rauch spends much of his time investigating this affliction.
to Joyce Martino - if you still read the posts on this forum, I want you to know that you are in my prayers. I hope all will go well for your family.
Take care all

Hi all,
Just googled Labrynthitis, really interesting, talked about inner ear infections viral and Bacterial plus the Epley Maneuver , so googled that also and thought there may be a link in there for us all have a look and see what you think, especially Nitrams as you're good at finding links to this disease we have.

me again if you google Brant Daroff it explains both exercises and is good for vetigo and dizziness due to crystals in the fluid in the inner ear which can damage the Nerves also ???

Mertie

One of the several events I had over the last several years with respect to my ears was BPPV, which the Eply manoevure deals with and which is entirely different than SSNHL. For me, they were two very different events, even though I wonder about a continuum leading up to SSNHL. The Epley corrected my BPPV event and then it was 2 years later that I experienced SSNHL which was very different in nature.

Gosh thats Interesting seattlestan, did you lose any hearing with the BPPV and is it much different to our SSNHL?

Mertie

There was no hearing loss associated with BBPV, only severe vertigo. I am told (and also believe) that they are unrelated. The SSNHL is very different.

I visited with my ENT today and laid out a bunch of possible causes, some of what was easily dismissed by her as there was no accompanying vertigo. The bottom line---there is a lot of research going on relative to allergies, and as I have previously been wondering about my exposure to dust preceding each SSNHL episode (and my violent reactions each time, suggesting an allergy)I am signing up for a battery of inhalant tests. Further discussion with her revealed that she would not rule out cochlear hydrops which might be mitigated by coffee and salt elimination/reduction. But she did rule out Vestibular Neuritis, Labyrinthitis, Herpes I Simplex.For me, I personally believe that sugar may be the key for me, due to my daily alcohol intake and high cholesterol and triglycerides, which she seemed to agree was worth testing out. I also accepted the request to keep a food diary for 2 weeks to share with her for other things to consider. We did discuss a recent blood test to look into autoimmune derivation and of the 3 tests, the sedimentation rate was the only one that showed above normal---it was 23 and 0-20 is considered normal. My ENT mentioned that one of my earlier counts was 10. This indicates I have an inflammation in my body. So, when I have blood tests done in a couple of weeks, as a baseline to pre-Alcohol reduction/elimination, we will also check the Sed rate and proceed from there.

I brought up supplements that I have come across here and in SSNHL web sites, i.e., Selenium, Magnesium, Vitamen E and she was not conversant in their affects, but saw no issues with adding them to my daily supplemental pill box.

I have brought up TMJ to at least 2 of my doctors and they do not see that as a cause (even though I do have clicking in my jaw on the left side---my affected ear is my left one). Evenso, I plan to resume cranio-sacral therapy. I have expressed to a number of these medical folks that I have to open my mouth wide a lot, to open up my Eustachean tube and improve my hearing, but get no feedback that this is an issue.

So for now, here is my regimen:Continued/enhanced supplements, which include immune-related things like Astragulus (good source of Selenium)and Grape Seed Extract (good antioxidant); Membership in a health club to improve blood flow and general fitness; Pursuing allergy testing; Keeping a food diary; Continue cranio-sacral therapy, which I aborted when the 2nd SSNHL occurred in mid-October; Alcohol reduction/elimination and further blood testing to see what improvements there might be in my Cholesterol and Triglycerides counts. This is a lot of information, some of it repeated from past postings, but in these forums we tend to forget what has been said before, so redundancy is probably OK. More later.

Thanks Mertie and Stan for your information about your cases.
When it comes to supplements I can say that I have taken a lot of them since 1989 when I was diagnosed with lung cancer and given 6 to 8 month to live.
But I proved them wrong......
I do believe that it was the supplements, the healthy diet and of course a positive attitude that got me over that at the time.
Example how supplements work: I recently saw some of my girl friends from way back, they all have gray hair now. I do not, and that is because I take zinc pills since 1989.
This is why I was so surprised when I got that onset of SSHHL. Of course all the ENTS that I did see including Dr Steven Rauch (look him up online) think that it was the viral upper respiratory infection that I got early December of last year.
I personally wonder if the flu shot that I got several weeks before the infection did not bring up this viral infection.
You know like we all sometimes have some intuition and that day when I received the flu shot in a long line in a Super Market of all things gave me a strange feeling.....
I hope that these investigating doctors will eventjually be able to say exactly where we are getting these onsets from.
Will hear what Dr Rauch will tell me on Tuesday.
I will share it with you and hopefully have an answer for you Stan.

Thanks Hope01, I will be looking for your posting on your feedback from Rauch.