Sudden Hearing loss _{Page 5 of 105}

please do not wait the 15 days
to start the steriod shots to the inner ear..these in my opinion offer the best hope...
i think its an EGO problem with your ENT that he wants to wait 15 days before he tries something else...i think this is wrong... and outright stupid...he is gambling with your health
as you can see it makes me extremely upset that these ent's are such morons
it is basic logic that if a number of people are coming in
that have a hearing loss that it would seem to indicate that it is something like a virus that people are catching or the virus is making certain people more susceptible to such a hearing loss.

Your ENT should be able to check up on this treatment for gods sake and see that
it is being practised at a number of research hospitals across the US and has been practised for I believe the last 5-6 years



MY viral doctor in California says he has treated a lot more people with the hearing loss and tinnitus in the last year and thats why i think and have thought all along that it is a virus/bacteria thats somehow attacks the inner ear and causes things to freeze up through inflammation around the ear...The steriod shot to the inner ear helps alleviate this

what also will help unrestrict the muscles, tendons and nerves in your ear, jaw neck is cranial sacral massage and accupuncture

were you sick before you had the hearing loss,
any tick bites
how is your immune system
do you have allergies

one thing my viral/bacretie dr is looking at is exposure
to neuro toxins which can be as i understand it anything from mould to heavy metals
to bacteria from tick bites
to a reasuuregnece of doramnt virus's that can get a hold of you if your immune syeyem is weakened and then these viruses attack the weakest part of the body meaning if you have genetic deficiencies in and around the ear (which it sounds like some of us do on this forum) that it can
hit you there (ie in the ear)

I will bring into work tomorrow the name of the herb that my grandmother found that eliminated her vertigo (she has menieer's disease, not sure of the spelling ..so again there is this genetic tendency in my family like one of the other lady who has posted)

Also start taking acyclovir whch doctors recommend as a anti viral drug

also start taking some anti viral vitamins such as vitamin A, vitamin C vitamin D
and garlic and vinegar (if you can handle the taste)

also try some circulatory enhancing vitamins such as coq-10 i believe it is

i know this is a lot but all have seemed to help in different situations and my feeling is that based upon our genetics these vitamins herbs help some people and not others so you have to try everything

my thoughts and prayers will be with you...keep the faith

Michael

All, I was having trouble with my system, and was not able to post reply for a while.

Hope and Ping,
You two should get as aggresive as possible to seek treatment, the sooner the treatment start, the better chance of recovery.

Strongly recommand ear shot and accupuncture treatment.

I lost my hearing on Nov 10th, two month ago. now I am probably getting 70% of my hearing back, since I am pregnant, which complicate thing a lot, but I still got the ear shot and I am still seeing accupuncture treatment.

The ENT I am seeing is at UCSF, Dr. Lustig; the accupunture's office is located at San Jose, Dr. Fu (408)929-4837
Both are very helpful.

best luck to all of us.

Elischee

Thank you for your suggestion, Elischee. I have had the intratympanic injection one week ago, and I have been on Prednisone for 2 weeks and Acyclovir for 1 week. I have had the MRI and a CT scan is next. Besides looking into accupuncture and the sacral massage, is there anything else I should be doing? Thank you VERY much for the phone nubmer for the accupuncturist. I will call him today since he is only 20 minutes from where I live.

This list has been a blessing, indeed. I hope everyone has a nice day. Oh, just a sidenote: I took my 11-yr-old son to his first basketball practice yesterday, and it was an awful and surreal experience to hear all those balls bouncing and the echo in my 'good' ear. I suggest foam earplugs for anyone who has this condition (at least at first) -- that was so uncomfortable and unpleasant. Lesson: avoid basketball courts indoors until ears adjust to only hearing on one side!

if you can find a good nutritionist and ask for the best dose of anti viral
and pro-circulatory vitamins and supplements. I ahve been on

vitamin a, galic, vinegard,

coQ-10 and someothers that I have forgotten and

also having a neurotransmitter supplemnts done through a compnay called DBS labs in Minnesote, its a urine test that measures how the levels of serotonin, dopamin and norepinephrine and epinephrine work together to help regulate brain chemistry

i find it is helping me sleep not sure if this is aproblem with you or not
michael

Hi All! Just got back from the US and was able to see an ENT doc who put me on another course of predinose and also gave me the steriod shot. He said that since I lost my hearing at the beginning of November that the chances of the drugs helping is very small as the damage has been done. I haven't noticed much difference. Coming off the predinose has been interesting and has left me with some headaches and lots of sleepless nights (could also be due to jet lag).

I'm just wondering how many steriod injections people have had in the past. When I spoke to the doctors office regarding the bill, they said that the shots are usually done in a series of three shots - but I only had one due to the time I was there. Just wondering if I should push for getting more injections while in the UK. I have another hearing test next month and maybe if there is an improvement then they'll put me on yet another course.

Hope, I know what you mean regarding basketball courts! I went to my brother's basketball game and I found it difficult to concentrate at times due to the noise. Used foam earplugs when we went to see a hockey game and that helped.

the pressure seems to accompany the hearing loss
please try to have your ENT refer you to a dr who does the steriod shots, they are called intratympanic injections (I believe) and unfortunately many ENTs are
stupid when it comes to even trying this tretament out

Other treatments that seem to work are cranial sacral, accupuncture, massage (of the area around the neck and facial muscles)

also antivirals (acyclovir)
and anti viral vitamins (vtamin A, C, E) along with vitamins that help circulatory (coq-10)

Keep the faith, the sooner you can get the steriod shots to the inner ear that are talked about on this site the better

I know the trauma and worry right now is great, so keep the faith and try to get the steriod shots asap, the sooner you do this the better

were you sick before this happened? any virus or other illness,

any family hereditiary ear problems?

Most of the people on this site at least, I think have only been affected in one ear

Good luck

Michael

Hi everyone,

Just to add myself to the list! I lost my hearing profoundly in my left ear on Thursday morning, waking in the middle of the night with vertigo and deafness. After seeing a GP in the morning, I vommitted due to nausea etc. Went on to see an ENT here in Hobart, Tasmania (Australia) who checked me out in the audiogram box, only to tell me of my profound deafness. Am now on Prednisolone (steroids) and asprin until next Thursday. The nausea has finished, the vertigo exists. Undertook an MRI on Friday and was advised today that there was no tumour involved.

So where do we go from here? Like yourselves, I've been searching the net looking for positive info. My profession says to plan for the worst and hope for the best (pilot). My profession makes this a double wammy.

I see that there may well be some positive results from the needle injection of the steroids. Time seems to be of the essence. Nice to hear your stories and know that I'm not the only one out here too.

Rgds

Johnno

Christine and Johnno, good luck to you guys. Try to get a steroid shot that Michael mentioned.

Dont you people realise that steroids are poison.

agree that steriods are not the best thing to put on your body...but unforynately its the only thing that seems to cure/correct this hearing loss

please call Dr lustig at ENT
dept in San Francisco UCSF
Most of the people that do these shots are attached to university hospitals. lustig has been doing it for about 6-8 years I believe

I have been to a viral, chronic fatigue dr in santa rosa and he has said he has seen a lot more people with hearing loss, he called it an epidemic.

Personally I have felt it was a virus that contributed to my heraing loss and as your chinese herbalist said the virus attacks the weakest part of your body and the hair cells blood apilliarioes in the inner ear are the most sensitive

search on
Dr. Lustig,intratympanic injections or some combination of hearing loss
or treatments...I believe he also put on a seminar in San Francisco on these treatments

THE ENT profession are morons on being able to diagnose and treat this problem...so please call Dr Lustig he will see you as soon as he can
Honestly thats your best hope I feel
Michael

any chance that you had a tick bite leading up to the hearing loss,
do you remember
The only reason i ask is that i had some tick bites a few months before

had you been run down before hand, one of the things from my reading in the area of auto immune deficiencies is that if you are very run down any bacteria, virus, parasite will attack the weakest area, and my undestanding is bells palsy they think is caused by a virus that affects your nerves

I think my dr indicated that the steriod shot may knock out the inflammation caused by your body fighting the virus which restores your hearing

i will go to the ucsf today on my way home and get his card, but if you call them tell them its an emergency as you lost your hearing, he will see you as soon as he can
he is a fantastic guy

that is intersting about the tick bites, from what i have read if it swells up and causes a rash, you could have the tick bacteria in you...the Tick bacteria can lay dormant (again from what i understand) until you get a little run down and then it
is activated...

keep the faith and good luck,

Michael

audiology clinic at ucsf
is 415-353-2101; somehow you may be able to get through to
the ENT dept as its right next door
Michael

Christine,

Dr. Lustig's contact info: 415-353-2757
400 Parnassus Ave, Suite A730
Www.ucsfhealth.org

You need to call this number ASAP, tomorrow morning at the latest, (Today is a holiday, I don't know if any of them are there, but if I were you, I will call today) he only works on Tuesday, the other way to get to see him is to drive to UCSF and wait outside the ENT office, bring all you hearing test, MRI, etc...

He give me the ear shot the first time he see me, it is the two shots he give me that brings back 70% of my hearing. Accupuncture helped alone the shot.

I have apponitment with him tommorrow morning. He is very straight forward and the best ENT I could hope for.

Good luck.

Elischee

All,

I decided to save my baby's cord blood today.

Standford Otolaryngolgoy department is planning to research on umbilical cord blood stem cell with regards to inner ear cell type.

Hope their research to be a successful one, if that turn out to be the case, then SHL could to be added to so many other disorders that could be curled by cord blood stem cell.

Thank you for providing the contact information; thats great news about your babies cord blood.

The Dr that i am seeing in Santa Rosa that specializes in viruses and lymes disease
is testing 7-8 genes to see what dieases etc that i might be predisposed to. This just became available in the last 4 months he said, as part of the human genome mapping...so we are all fortunate (in a small way)that science is where its at today

please say hello to Dr Lustig
for me
Michael

What is the saying...it doesn't rain, but it pours? Well, here is my latest news about my almost 3-week-old case of Sudden Sensory Neural Hearing Loss: My hearing has not improved at all after 2 weeks of Prednisone, 1 week of Acyclovir, and 1 intratympanic injection of steroid (dexamethasone). I am experiencing a more frequent and disturbing sense of pressure or fullness in my ear. I have read online that is common in people with SSNHL. I think they call it 'aural fullness'. Does anyone else feel that? It feels like I am deep underwater, or else like my ears need to pop but they won't. It is very unpleasant. I found out that my ears ring more if I drink even one glass of wine. Coffee and chocolate and other caffeinated drinks also make the ringing worse.

Tomorrow (Tuesday)I will have another audiogram/hearing test. I am SO nervous. I am afraid they will say I am worse. Please say a prayer for me if you are so inclined.

Finally, the kind of awful big news: Two of my cousins have now been diagnosed with having the Pro-Thrombin gene mutation which basically means that they are part of the 1-2 percent of people who have a gene mutation that makes them more susceptible to blood clots. All cousins have been advised to be checked for this since it has been implicated in sudden death events. Oh joy. Well, guess what? A little research led me to discover that this gene mutation may be implicated in sudden hearing loss. If the theory holds that this could have been caused by a blood clot in the inner ear, well, maybe being more susceptible to blood clots makes one more at risk for SSNHL? Who knows...I just know I am going to be tested. Further research has also discovered that there are 14 immediate relatives on my mom's side with early (but gradual) hearing loss (in their teens, 20s, 30s, 40s). So, my gene pool sucks, too, at multiple levels. Oh my. Sorry for the bad language....I will let you all know what happens tomorrow with the audiogram. I am so scared. I go back to Stanford on Wednesday. I love Dr. Blevins (in Otolaryngology) and his assistant, Dawn, who really helped me to calm down at the first visit. My insurance is hassling me about a second authorization to see him as he is out of my medical group, but I told them that since I am facing being partially hearing impaired for the next 50 years or so, they might consider copping me a break. I HATE INSURANCE COMPANIES! Thank you everyone for being there. Just wondering: is there anyone here that lives in the San Francisco Bay Area? If so, could we maybe get together for coffee (decaf!) sometime? Just let me know. I live near Stanford/Palo Alto.

Hope

it was after the sceond shot that i suddenly had betetr hearing, it was weird as all at once everything semed really loud doors slammimg etc so keep believing hope

i know this may not seem like much good news but with identifying the genes it means they might at some point in the near future be able to turn off or on that geen malfunction...

also knowing that you are more susceptible emans you can take preventative action now and in the future...Honestly Hope I know this is a hard time, but I honestly think we are fortunate that the diagnostic tests and treatments are available
and as i am in san francisco
and you are close to stanford, its another benefit

my ear felt full as you say
until i started to get some hearing back, but then the tinnitus started and to tell you the truth sometimes i would trade to get my hearing loss back and not have the tinnitus...

we have to accept the loss but not give up hope (no pun here) that we can recover some hearing either now or in the future

it does suck, we have all gone through the humiliation and hurt of friends and family literally making jokes
at our hearing loss, of being tipsy at times and of that awkwardness of having to tell someone that we can't hear them as we have lost our hearing

keep believing and a prayer for your hearing and the others, who do not have any support nor access to anyone but their moron ENT's...I have been searching for a year and now the search has taken me to a viral doctor where all sorts of other tests will be done and perhaps i will learn something that will help me in the future...

sorry for the ramble; you have to keep believing
Michael

Hi everyone,

Contacted my ENT today but he seems too busy to talk personally to me about my incresed vertigo! Gets his secretary to pass on the messages ref MRI and my request about the increased dizziness and the use of asprin. Sounds like a case of 'a Bex and a good lie down' technique. If you note some frustration on my part you're correct as my anger iand frustration is building.....perhaps a consequence of the steroids as well!

Poison or no poison, the steroid treatment appears to be the one positive remedy to what is generally considered an idiopathic problem. Clinical results from my reading indicate an inverse proportion to the profoundity of deafness, but as we all know....if anything works then we need to try it.

Do any of you know as to whether the vertigo (dizinness) continues for long? It's driving me up the wall.

I've noted some good suggestions ref head and neck massage and accupuncture. This would at least ease what seems to be tension about my shoulders and neck. Assume that's good for blood flow as well.

Have my sister checking out ENT's in Sydney as they would have more exposure than the cosy critters down here! (As much as I love this part of the world!)

Hope that you all have remarkable improvements in your hearing....fingers crossed.

Rgds

Johnno

there does seem to be an inverse relationship to degree ogf hearing loss BUT i had pretty much 100% and got back about 25-30% which
means all is not lost/

shat man you might as well (i am serious here) fly to San Francisco and see Lustig
your going to spend weeks and $ going nowhere with moron ENT's

I took the predisone for 2 weeks not a thing, so i am not surprised it hasn;t helped yet

like you my massage and cranial sacral masage said things were really frozen
through my face and ear
my cranial sacral says its like peeling an onion, the layers that opened up and my new Dr says that has probably helped minimize the loss as the virus (if thats what it is) will cause inflammation and after a while a bit of rigidity
rigidity in this area restricts blood flow and we all know where that leads

Im serious man for $2-$3000 you could get to Sf

The shorter the time between the steriod shots and hearing loss, the better the recovery...i think mine was close to 3-4 weeks and i still got a little bit back enough to where i can use a hearing aid

I never had any vertigo so
i cannot help you there HOWEVER My grandmother had vertigo and she took this herbal supplement called CBg made by Natures Sunshine and it has in it chickweed herb, black cohash root, golden seal root, valerian root, passion flower, bringham tea herb, licorice root and water and accohol

All of these herbs ai have read are good for different things realted to heraing loss, sleep and viruses.

Good luck
DNLTBGYD
Michael
DO NOt Let The Batards Get you Down

Thanks for your response Mike. Rang a friend last night only to discover that she had sufferred same fate as me 3 months ago.....suggested Hyperbaric chamber treatment....a consequence perhaps co-incidentally was that she regained 25% hearing after starting it. Rang the local doctor who runs a unit here...he's English and very positive at trying to help. Will co-ordinate with my ENT who I will be seeing tommorrow morning and if there be no barotraumatic reasons, may well be sitting in the chamber watching a movie for 90 minutes at 2 atmospheres. (About 12 times the average o2 intake apparently). He didn't guarantee anything but realizes that this could be an answer to an otherwise devilling problem.

My sister has checked with some leading ENT surgeons in Sydney and says that if I have no luck so far to contact them as well. Fingers and knees crossed!

Will let you all know of my next steps. My dizziness seems somewhat better today....have been pottering with the sheep, chooks, kids etc to keep my mind off it.

PS: I reckon I'd be vommitting all the way to Frisco Mike given my vertigo, even though it's apretty straight line from Sydney!! The diversions around the Inter Tropical Convergence Zone would definitely make it technicolour!!

understand, hey i am not trying to be a doc here BUT have you had any tick bites
on the farm, (i am originally from ranch in canada) and had been home and had a tick bite or two before coming down with flu like symptoms for 2-3 weeks (bad respiratory cough) before i lost my hearing

From everything i have read and believe the majority of causes of this loss are a virus which through inflammation or whatever knocks out the hearing

cannot remember do they at least have you on prednisone and acyclovir or other anti viral;;; the research also says to throw as many treatments as you can it
over the first month
can you take some time off and get to Sydney to try cranial sacral and massage as well

Good luck
Michael

Good luck with the hyperbaric chamber, I tried it but it was after almost 2 months which was too long to wait

Dear compatriots,

I am so happy to share some good news for a change. Three weeks ago I woke up with the Sudden Sensory Neural Hearing Loss in my left ear, along with severe ringing in my left ear. I saw the ENT who gave me 2 weeks of Prednisone (started at 60 mg/day for 1 week, and then tapered down across the next week) and 1 week of acylclovir. I had an MRI which showed nothing unusual. The ENT told me I had developed this condition because of 'bad luck'. This did not sit well with me, so I sought out a 2nd opinion with an otolaryngologist at Stanford. I saw him 1 week after the loss, and he said we had done everything that should be done, but that we could still do the intratympanic steroid injection (dexamethasone, 10mg). So, I did that 2 weeks ago today. Yesterday, I went back for another audiogram, and lo and behold, my hearing has improved! I went from a hearing level of 85 decibels (severe hearing loss, almost profound which is at 90 db) to 50 decibels, which is moderate hearing loss. I am SO happy. I am SO very, very grateful. The drs. were very happy. The only negatives are (1) I still have ringing in my ear all the time and it is awful; and (2) I still have a hole in my eardrum that has not healed from the injection. I will have my hearing tested again in 4 weeks, but for now, the docs are very happy with my 'significant improvement'. I still have hearing loss, but it is far less than it was.

Was it the steroid pills, the acylclovir (anti-viral medication), or the injection that made the difference? I will never know, but in my opinion, I feel it was the injection. Therefore, like micklog, I would like to strongly, strongly encourage everyone to have the injection if they can. I saw Dr. Nikolas Blevins at Stanford and I strongly recommend him. He was really wonderful. The only negative is that I was told the shot costed just over $4,000! My insurance better not hassle me over that payment, althought at this point, I suppose it is worth it, if my hearing continues to improve.

Someone asked for good news today. Does this qualify? :-)
I was definitely bordering on hopeless for two weeks, please know that things can improve. It seems that early treatment is very important. And the rough ride on steroids (emotional, angry, irritable, not sleeping) was worth it. Now if I could just get the ringing to stop, I would feel like I have won the Lotto.

Maybe my 'bad luck' is turning?! You could not have convinced me of this even a week ago, but I can now say that there is hope. The scary thing is I have heard of two other persons in my circle of acquaintances in this same area (San Francisco) with the same symptoms in the last week. Do you suppose it could be viral??

Hope

see Hope can help

the ear drum holes usually heal in 3-4 weeks; mine got infected which added to the tinnitus so keep an eye on it
they from what i understand try to use the same hole
when they give you the shots
if thats any consolation

i do believe its viral and have felt so all along as i have been ranting about here;
all of these "hearing losses occurring" in such a short period of time

My Dopey ENT said last year that he had only heard of it happening once and it was an acquiantance, not from a patient AND he has had his business for probably 20 years... so up until recently I would hazard a guess that this was a pretty rare occurrence

My current viral doctor indicated that the steriod s likely help knock out the inflammation related to the virus whcih allows recovery...and also that cranial sacral massage and regular massage is good to
keep open the area surrounding the ear