Finally Seeing an ENT Tomorrow...

Anyone got any advice or tips on what to expect, apart from the dreaded "yeah that's tinnitus, there is no cure, get used to it" line? I am almost dreading going to be honest....

 

Going on 11 days now.. I've already seen 2 ENT's, its definitely worth going if you haven't gone. For all you know he could pin point the cause of your tinnitus. Then again, don't expect him to snap his fingers and walk out with a miracle cure.. He will most likely examine your ears, as you a bunch of questions like if you grind your teeth, if you have tmj, etc etc... And likely after that he will recommend you set up an appointment with an audiologist to rule out hearing loss.

Thats about the extent of my ENT visits.

 

Tinnitus is one of those conditions where the doctor needs the patient's help to reach a diagnosis. It's no good showing up at the ENT's office and placing the responsibility entirely on his/her shoulders. If you in advance suspect a particular incident or reason to be the cause of your tinnitus, then let the doctor know that. Otherwise, the ENTs aim will be to simply rule out that there isn't anything seriously wrong with you from a medical perspective. You will get an audiogram done and and most likely also a tympanometry test (as a minimum); possibly other tests if those tests are inconclusive and the ENT suspects something else is wrong (eg. MRI or blood work). None of the standard tests (ie. audiogram + tympanometry) can explicitly diagnose tinnitus - they are for indicative purposes only.

I suggest you look into any experimental therapy available to you during the acute stage of tinnitus (eg. AM101 - or possibly the very much anticipated AUT00063 phase II trial). My suggestion.

 

This is something I am considering. However the thought of being a guinea pig is kind of intimidating. Isn't there a chance the AM101 injection could make things worse?

 

Don't wait too long if you are considering that possibility - the therapy is only effective during a certain window after onset of specific types of tinnitus. Discuss with your ENT tomorrow (although he/she may not be aware of the clinical trial). Also: enrolling in one clinical trial may well exclude the other (if they overlap) - so make up your mind. You are quite lucky to be based in the UK, in that respect...

More intimidating than having tinnitus for the forseeable future? Possibly for the rest of your life?

The moment any human being enters a hospital, they are guinea pigs. Experimental medicine or not. You would not believe the number of patients who end up disabled or even die from the treatment they receive using established procedures. People tend to think conventional medicine is safe and experimental medicine isn't. Think again...

Phases I and II have been passed. The conclusion reached was "The study drug and I.T. injections were well tolerated."

See https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/page-40#post-54123


Discuss with your ENT; he/she may not be of help (probably not even heard about the trials) - but you should state your intentions so that he/she can help you with the next steps (if you wish to pursue that route).

 

Well, my ENT visit has been and gone.

The doctor himself was a very nice guy, seemed quite knowledgeable about tinnitus and was aware that some people find it difficult to cope with. His advice was keep yourself occupied and try keep it off your mind, use masking when in quiet enviroments. Exactly what I expected really.

I had an audiogram done from 125Hz-8KHz. All frequencies came back within the 'normal' ranges, all within 5-15db, with a dip at 4KHz and 6KHz of 15db in my T ear. All other frequencies tested were in the 5-10db range. I asked him how this compares on average to people of my age, 33, and he said it was a little lower than he would expect, with 0-10db being what he would expect for someone with "regular" hearing. On the whole he said I have nothing to worry about hearing wise, but the slight dip in my T ear was a sign of potential noise damage.

If my T is down to noise damage, then I guess that's some compelling evidence for it. Though at 15db loss I find this a little 'low' to have the T erupt, having read accounts of people not experiencing T until they have hearing losses of 40,50,60db. Although it is possible I have a deeper loss at a frequency not tested. I tested myself for high frequency loss and could hear all the way up to 17KHz pretty easily, but who knows.

Perhaps there could be a genetic factor in the likelihood of acquiring it, as my mother also has the T, although she didn't develop it until she was 60 and most likely for her it was due to years of ear infections.

Anyways, I have been referred for an MRI to rule out anything more insidious being the cause.

I asked the ENT about the trials for AM101 and AUT0063 that are taking place here in the UK. He didn't really have much to tell me other than that he was aware that they were the latest developments in curing the condition, but had no real information on them. I guess it was a bonus that he actually knew about them...

 

@ekdudebro

It has been a while since you posted and I was wndering how you are getting along.
Did you do your MRI yet or I expect you still have to wait months for it and in the end it wont tell you anything except that you have T
Please let me know how you are doing?
amanda

 

@amandine

I finally had my mri scan today, so I have to wait 7-10 days for the results.

I'm fully expecting to get told everything seems normal, as I don't have any other symptoms that would suggest anything more that could be causing it.

The tinnitus is still there, 3 months today, I don't expect it's going anywhere soon....

 

@eldudebro

Thank you for the update.
Just was wondering - your mri
Was it a closed MRI or an open one.
Reason for asking is that the closed MRI is supposed to be really noisy and supposed to be dangerous to hearing and I have read reports that it caused T in some people.
Did you find it real noisy or no problem at all.
I was supposed to have one couple of weeks ago but chickened out cos i could not get the ear plugs in satisfactorily and was just so nervous and frightened and freaked out about it all that i could not go through with it.
I rebooked but am not sure whether to go ahead or not. Again i have no other symptons. Saw an ent private yesterday. Must say that there test was much more thorough than the standard one at the hospital. However the ent doc said that my hearing was normal for my age (lady never reveals her age but i am 2 decades older than you) and the verbal test that i did was in french! my french is ok but there were some words that i didnt know so i just had to repeat what i heard but that seemed to be ok.
Did you do it with no contrast and with contrast half way through. Was there any prob with the ocntrast. Heard that people experience headaches after the contrast. Also read that some people do the MRI and then are permanantly physically disabled after the MRI. Maybe I am just reading too much on the web but it all served to totally freak me out and put me off going through with it.
Your T and mine started at the same time, Would you consider having the am 101 trials done? You and I are still early enough to have these injections. Iti is apparantly up to 12 months and obviously the earlier the better but we are still early enough. There is a good positive report today on this forum who had it approx 4 months when he had the first set of injections whether they were placebo or not and then 3 months later he had second set of injections, He said that after the injections his T went up for about 2 or 3 weeks but that is apparantly normal. However he said that in week 4 he noticed a change and had some really good days. He gets his next set of injections in december and then the final set in March next year. HIs T started in October 13 so you can see the time scale there. Other people have reported no change or moderately worse or moderately better. The chap that reported mod worse has now reported that his T is getting better.
I am beginning to think that maybe these injections are a good idea. Heaven knows how I will cope with injections into the ear being suc a scaredy cat as I am! Hell i hate going to the dentist and always make a big baby fuss. Guess I am just not brave like all you other guys. Have been in war zones with bombs dropping around me and was less frightened than when going for the MRI or even the dentist! Altho I was younger then and had the bravery of youth! Nowadays I feel much more vulnerable. Anyhow please let me know what are your thoughts.
Also is your T a prolem or is it really quiet and not intrusive?
Love to hear and thank you again for your report on this thread.

 

If you haven't tried oral steroids yet, you can discuss it with your doctor and give it a shot. Also many people have had some success with piracetem and vinpocetin in the early stages...no harm in trying gingko as well in my opinion and there are pills which have combination of gingko piracetem and vinpocetin..Good luck

 

@amandine

It was a closed mri that I had done, my head inside the tube. I did not have a contrast dye injected so i cannot comment on that. The machine itself was fairly noisy, I was only in there for 10-15 minutes. I had foam earplugs in with headphones playing soft music over my ears. It didn't seem too loud but I was a little worried it would do some damage. In the end though it had no effect on my T. Just take the same precautions and I am sure you will be fine.

I'm not sure where i'd classify my T on loudness, as I have no idea how other people experience it. However I am generally aware of it most of the time. It's not overpowering as to affect my hearing, it's more of a in the background noise. Only seems loud in a quiet room, can be masked by refrigerator, being outside etc etc.

 

@eldudebro

thanks for ur reply.
Ok so there is the rub.
I am stuck here in rural france and I cannot get the foam ear plugs in properly, They stick out quite a lot from the ear canal and i was told that if it is like that then it is not a proper seal.
Here in france they insist on using the dye contrast and will not listen if you dont want it but in UK is not generally used apparently.
Also no head phones here in france - only the ear buds and the flaps that hold your head in place altho i think that they do generate music of some sort so maybe they do provide headphones but nothing was made clear to me when i went so i ducked out of it.
Also they told me that i would be inside the tunnel for about 30 or more minutes which is much much longer than in the UK.
My T can be heard above everything.
But changes - yesterday it was practically gone.
Today it is louder than ever.
So still unsure what to do about the MRI but think i may not bother having one here as too afraid and cant see the point.
Were your foam ear plugs provided by the hospital? and did they go all the way in or did they jut outside of your ear? and were the headphones yours or did the hospital provide the headphones.
thanks for all the info
Are you doing the am 101 trials - forgive me perhaps i should have checked your posts before i asked this.
Your T and mine started same time

 

@amandine

My T seems to be generally stable, doesn't seem to fluctuate. Sometimes it seems quieter but I think that's more to be with my perception of it.

I'm not doing the am-101 trials no. From the results i've read it doesn't look too promising sadly. I was considering waiting for the aut0063 trial but the hearing loss component of the restriction requirements seems to count me out as my hearing loss isn't really significant.

 

@eldudebro

Thank you for your reply.
Is your T not too much of a problem then?
Mine goes up and then really down and then right up again. This is not just perception but real noise.

AM 101 have started to get positive repsonses now so looking better for results. I wonder if there being new and more positive reports coming from participants in the am 101 trial, whether this would affect your decision and encourage you to change your mind and go for the trials?

Also, from what I have read the autifony trials, the autoo63 in the UK are for tinnitus and in the USA are for hearing loss. That is what i got from their website info. It says tinnitus / and or hearing loss. Then i read that in the USA they are trialling only for those with hearing loss and in the UK only for Tinnitus. Please go have a read and let me know what you think - this is the info that I got whislt trawling for info on autifony. Maybe I am wrong and would love a second opinion. Many of the members here are fm the states and so will discuss the hearing loss restriction but for those in the UK it doesnt affect, as far as I know and have read. Please do let me know what you think about this as would love to know whether i a completely off track as far as the autifony is concerned or whether I am correct.

 

@amandine

No my T is still very much a problem to me. I have good and bad days. On the good days I feel it's okay and I can adapt to this, on my bad days I am entertaining thoughts of ending my life. At the beginning it was all bad days but i'm having more good days now. So maybe I will get through this after all.

I'm not sure about the US trial but I remember reading there had to be a certain amount of hearing loss to be eligible for the UK trial of aut0063. I'll need to read into it again I think as I haven't been following for the last couple weeks. I don't believe the full details are up yet so it's just a waiting game for that to show up.

 

@eldudebro

So your T is same as mine then.
Yesterday it was real quiet and I thought I can live with this - same as you.
Today it is really loud and i am thinking about slashing wrists...
I wonder if the quiet days are a sign that it is getting better?
Yes please do have a look at autifony and let me know
thanks

 

@eldudebro

This is directly from the autifony web site:

Autifony’s lead compound, AUT00063, has successfully completed Phase I clinical trials, and Phase IIa studies are being planned for age-related hearing loss in the US, and for tinnitus in the UK, this latter with funding support from the UK’s Technology Strategy Board. Both trials are due to start later in 2014.

http://www.autifony.com/autifony-pipeline.asp

That is what I am getting re the hearing loss in the states trial and the tinnitus trial in the uk

 

@amandine

Another poster found the following link on the nhs trials website regarding aut0063.

http://www.nhs.uk/Conditions/Tinnit...7-GB&Condition=Tinnitus~quiet&pn=1&Rec=0&CT=0

It includes a lot of the exclusion criteria within.

 

4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and <60 dB Hearing Loss (HL)); If a hearing aid or sound generator user, then confirmed consistent daily usage of the device over past 6 months;

So does this mean that one has to have a hearing loss of more than 20db and less than 60db at all those frequencies? or just one of the frequencies Hz?

@eldudebro

Thanks for the link.

How confusing?
And in opposition to their website posting.

Not sure how professional this organisation is now....? However there is a phone number and name on that NHS post about autifony - wonder why I or anyone here cannot just phone and ask or am I being incredibly naive and dumb here?

If there is nothing else, which now seems increasingly likely, and positive reports now emerging from participants of am 101, would you reconsider doing those trials? Or is it the thought of injections directly into ear that is putting you off - I know it is putting me off as I am a bit squeamish....also have not heard of any female participants, only male ones so far in the am 101 trials...
lovely to hear from you

 

@amandine

I'm not sure, there seems to be some confusion floating around at the minute as they haven't actually actively recruiting volunteers yet, so all we can do is wait until they do.

I too am wary of having anything injected into my ears. I wouldn't meet the requirements to get into am-101 trials for now anyway as I am currently on anti-depressants, something that seems a big no no to them. I do plan to get off them soon though, so we shall see.

 

@eldudebro

Apparently you initially go for your first meeting to answer lots of questions to see if you are suitable or not. Then back for more screening and blood tests. So if you were to stop taking whatever you take 2 weeks before your blood tests then it will be clear. Even if you are on anti depressants etc.... then they will tell you to stop taking them at your first initial consultation or before then. The proof that you have ceased to take any drugs including recreational ones will be in the blood test. So I dont think that this precludes you at all. All you need to do is stop taking the ad 2 weeks before blood test.

Maybe it is more that you feel that you cannot stop taking the Anti depressants just now? The effect that ceasing the ad's will have on you and the ones around you and of course your work. If you are like me then this T will be making you anxious nervous and not nice to be around, Lack of sleep and stress due to the noise.

The only reason that I am saying all this is that I am aware that it is better earlier than later to do these trials. I had been quite put off doing these trials cos i had not had any positive reviews of these drugs - but this is now beginning to change and i am seeing that quite a few people have posted real improvement in their T.

Seems to me that maybe these people (the participants in the trial) were right when they said that better to try than be afflicted for life without having tried to get rid of it or at least lower it. Seems to me that there are no other current alternatives.

I am not on anti depressants and not taking anything really. Reasons are that such drugs are so bad for us physically and mentally. Were you on these meds before T or is it as a consequence of T? Hope you dont mind me asking...? I find that I cannot sleep properly and I am intensely irritable and anxious and generally not nice to be around at all. However seems that meds may be a full time occupation if there is no cure, Musing aloud as to whether to bite the bullet and go ahead with the trials much as i dont want to for all the reasons we already discussed such as injection into ear etc....Am equally afraid that i may miss the boat with too much thinking about it and there may never be another boat in port.

I am in France and would ideally be in UK for the trials but seems too complicated
I tried to enter trials here in Tours as my nearest study centre (300kms each way) but as soon as I sent an email to the doctor overseeing the trials there, which i did in english as advised by his colleague who said that the doctors english was excellent, I was told that there is no more room on the trial (a lie) and that i need to contact auris medical to find english speaking trials in france!! I then sent several emails all in french stating that my french was certainly good enough to do the trials but have now been told to go to Toulouse which is even further away. I have been given the telephone number and contact details of the trial coordinator at Toulouse by a member of this forum and will attempt to contact her on Monday i think. It is impossible to get info from anywhere in france but not from this forum!!

Expenses are paid in UK and the states and across europe for travel costs incl hotel if the participant lives too far away to be able to travel back on the same day during the injection time period of up to 5 days max. I obviously cannot do 700km every day so would should qualify for teimbursement of costs. However even getting this info in france seems impossible, maybe on monday with the doc at Toulouse.
I dont know where you are in the UK and the UK being small country makes travel shorter but you may also qualify for such costs if your centre were far from you

I know of several people in the UK who have now had these costs paid to them. Up to 35 pounds max each way for travel and up to max 60 pounds per night for hotel and 2 pounds per day in the cafeteria so maybe need to make or buy lunchtime sandwiches.

Sorry to go on but was just explaining the difficulties for me to do this here and heaven knows I would give anything not to be in this situation - but i cannot envisage my whole life like this....as you said, it makes one suicidal on the bad days and positively euphoric on the quiet days.
That is not a life nor can a life like that be sustained I dont think.

Otherwise there is the agar 35 which some people are swearing by, this is a tibetan powder of natural herbs that are harmless but apparantly effective in lowering T some of which may also be due to the fact that it is a good relaxant and sleep aid - i dont know - all i know is that there is personal evidence that it is effective and has been used for eons in tibetan medicine specifically for Tinnitus.

Alternatively there seems to be Retigabetene or Trobolt (same thing different name) which has cured one member of this forum which he has posted about. Only prob with that is it turns your eyes blue and heaven knows which other side effects. Not a prob for me cos my eyes are already blue!!!

Otherwise I know of several people who have taken vit B12 and swear that it has reduced to practically zero their T loudness.

So I guess there may be alternatives and there may be in the near future a safe and tested chemical combo that we can injest or have injected, or brain surgery or stimulation, or music etc....but at the moment seems to me that all we have is am 101.....so in that case maybe need to think superhard about this. As one person said to me, better to have tried and failed (ie the trials dont work) than to have a lifetime of regrets knowing that I could have tried....
love to hear from you