Auditory brainstem, neuro-audiology and auditory processing
 

Hi all!

I am feeling as if I am not able to get beyond a certain plateau that I seemed to have reached. I have had a horrible three weeks or so, and even on those days when I feel more functional, it is AT HOME, in a QUIET space! I am still unable to function in noisy environments, or when there are multiple sources of noise.

In trying to understand this and find new therapies which go beyond the advice of increasing exposure to noise, I have come across some interesting articles and research on:

- neuro-audiology
- auditory brainstem testing and damage from MTBI
- auditory processing disorders as a result of MTBI
- dichotic interaural intensity difference training (DIID)
etc!

I had a hearing test which showed my hearing was great (I have hyperacusis! of course it is 'great'!!!! :rolleyes:

But no other tests for this problem.

Before I post some interesting links, I wanted to see if anyone else has had assessment, treating, therapies, etc. for the sound assaults that they are dealing with on a daily basis. Tinnitus and hyperacusis. etc.

A lot of the studies I have read this morning discuss how the traditional neuro-psych testing does not pick up on this problem...first reason is that the testing is done in a quiet environment!

Thanks! I think I am on to something for myself, at least. Looking forward to hearing other suggestions.

hope everyone is having a good (and quiet:) day. Sigh.

If anyone wants links to these discussions, send me a message or post here.
M

Mokey, I'd love a copy of the links.

I'm going to the ENT tomorrow to find out more about my own situation regarding dizziness, nausea, tinnititus, hyperacusis, etc. My question is do you all have suggestions on _what_to ask the ENT about?

I've lost 35 pounds since the accident last July 2012. :) small silver lining, but I'm not in control since I often vomit if I get to nauseous. I often feel like I'm on a ship, and on the right side is like a mirror fun house in terms of feeling. Visually it's okay; it just feels funny.

There is some visual-vestibular connection, but I'm not sure what. I am also on prism glasses and undergoing vision therapy for convergence insufficiency. The optometrist thinks I have another 9-12 months to go.

Any advice would be greatly appreciated! Thanks to you all-this forum has been a life saver.

Ask
 

If he can see if your vestibular is off in your inner ear.I had also lost a lot of weight during the time I waited for a diagnosis and was vomiting EVERY DAY.Hope you get some input from the ENT.

Terrible that you feel so bad! Nausea is horrible, on top of everything else. Will post some interesting links after I get my kids from school.
M

As promised:

1)
Here is an interesting case study about a woman who had pcs after falling off a horse. Many of us have similar issues. Some treatment solutions near the end of the article.

http://citeseerx.ist.psu.edu/viewdoc...=rep1&type=pdf

2)From the Audiologists's association website:

http://www.asha.org/publications/lea...91124/CAPD.htm

3) a great blog post on NOISE

http://www.fightingpcs.com/2013/02/n...further-study/

4) a powerpoint presentation on auditory processing problems after tbi )in military but they are just like us!

http://www.afaslp.org/AVAA%20conferences/Gallun2008.pdf

5) a powerpoint from an academic conference on brain rehab...explains a lot.

http://www.scripps.org/assets/docume...aud_fabian.pdf

From this last presentation...the slide which talks about the symptoms of central auditory processing disorder:

'Symptoms of Auditory Processing Disorders
Common symptoms of CAPD are:
• inordinate difficulty hearing in noisy or reverberant
environments;
• difficulty following conversation on the phone
• difficulty following multi‐step directions
• difficulty following long conversations
• difficulty taking notes
• difficulty with social situations—difficulty “reading”
others / pragmatic communication issues
• difficulty with spelling, reading and writing
• lack of music appreciation
• difficulty directing, sustaining, or dividing attention '



That's all for now. Hope it helps. I have called the U Conn. clinic and hope to speak with someone tomorrow to get more information about testing and therapies.

Leave no stone unturned!!!!
M

I was diagnosed with an auditory processing disorder with an Auditory Evoked Potential test (AEP) with qEEG processing. My doctor looked at the results and said, "You hear everything. How do you handle that ?" My wife responded, " He doesn't. "

It has been 12 years and I am still dealing with these issues. I have learned to avoid most environments where I will have a problem. I also use foam ear plugs in restaurants and other noisy places. I sit at the back or perimeter of a room where there will be less noticeable echoes.

I can hear echoes that nobody else hears.

My AEP was repeated a few months later to validate the results. My doctor was so impressed by the level of lack of auditory filtering that he repeated the test a few months later. I had it repeated years latter with the same results.

I may have a little better organic tolerance for sound but believe most of my tolerance is due to work-arounds.

Mokey, I think I mentioned this before but I was in the same situation, pretty much ok at home but in noisy environments or confusion/busy places I was having sounds sensitivities, dizziness, brain confusion/fog, etc. Ever since starting Effexor, for these anxiety symptoms, they have been significantly improved! Even my light sensitivity.

I believe Mouse has had the same results. If you are that desperate, perhaps it would help to try this solution. You could see almost miraculous results. I was shocked what was helped by this medication. It allows the rest of the brain issues to start to heal better once the anxiety responses are controlled.

These are PHYSICAL anxiety responses, not emotional and you cannot control them on your own. If you don't want to try Effexor, there are other options.

For the others in this thread, I had no luck at all with my ENT but your situation may be different. There is supposedly only one type of dizziness that they can help with and mine was not that type. (if you roll over in bed and get dizzy and nauseous then an ENT may be able to help you)

Just some thoughts. Good luck to you.

CC

Thanks, Cycle crash! I am seriously contemplating digging into the cymbalta samples a doctor gave me last year! But my good doctor left to do other things and I have no brain injury doctor right now, so it is probably not a smart idea until I talk with someone. The new GP has no interest in this injury because it takes more than a seven minute visit to solve problems.
As soon as I find a doctor in this area, i will raise this as a possible therapy (drugs!).

I had a HORRIBLE experience with a new potential doctor on Friday....so difficult to find a good one!

Thanks!

Thanks Mark. I hear everything too....it is horrible! I have tried to avoid noisy places but it is a huge impediment to me going back to teaching which I still want to do, and to living a better life with my young kids.

If you have other suggestions for testing for this condition, i and others would appreciate it.

Mokey,

I recommend you stay away from the Cymbalta samples until you have a doctor who is in support of you taking it. It will take a few weeks to see a difference anyway.

If you are going to self medicate, try a capsule of L-Tryptophan twice a day. It will show a change that day.

Have you ever had your B-12, D3, and folate tested ? You might be one of those who does not process (methylate, I think) B-12 and folic acid properly.

mrsD has quite a write-up in the Vitamins sticky.

Thanks Mark. I have had some basic tests...but The GP just said all in the normal range. I recall you or someone posting about different normals for tbi? I should ask for the exact values.

I will check out l tryptophan! Spouse is out shopping right now...will give him a new errand! Thanks,

Wow!

Your post on the auditory processing disorder took my breath away as it describes my difficulties and panic when I try to have conversations (with my children, husband, neighbors, even doctors)!

I cringe when the phone rings (but I have 3 kids so I have to answer!). I cannot really follow conversations beyond the weather. Any conversation conveying steps or information is torment. It is so hard to take notes even!

I also mishear (train for tray, etc) all the time.

I mean I have a PhD, wrote books, and gave lectures internationally - so I use to be smart. But now--I cannot read and it is so hard to listen (because we hear so much)!

If not an ENT, then what kind of specialist? I'll ask tomorrow and see what the doctor says.

Thanks SO much-I feel so empowered now. You are all so great.

Berkeley Brain...i am in your shoes (phd, etc) and feel exactly the same way. You are still smart...just suffering after a terrible injury. I have done a few international conferences out of stubborness...no going out with the groups, no coffee break chit chat, no receptions or banquets...the most recent one in NYC almost did me in (the only quiet place I could find was the women's washroom on some upper floor in the rockefeller centre. Sat in there fully dressed with earplugs and an eye patch for 1 hour after my presentation to a room of 300 with spotlights, etc. it was hell.....i was not as good as I used to be....but I did it. So you will get there again. It takes time to heal. When we are used to being so efficient and effective with our brains, this is hard to understand.

I try to count my blessings (it could have been much worse) and focus day to day. Today was awful....as has been the past two weeks...but tomorrow will be better!

I hope the information gives you some more insight. I think we are all trying to understand what this monster of an injury is! Hang in there.

I doubt a GP would order a qEEG with VEP and AEP. Plus, it takes a specialist to understand the waveforms of a AEP/VEP.

Your job intensity may be your worst enemy. You may need to arrange for more low stimulus time before increasing your stimulus levels. Just preparing for something like your presentation would put me over the edge.

I agree with the job intensity, Mark. It is tough to find the spot where you are doing enough but not too much. Not easy. And I haven't yet figured out (or accepted!) where the limit is. Lots of grieving goes on with this type of injury too. Takes a while to accept what we can no longer do.

What doctor would you see to get those types of tests?
Thanks,
M

It's been awhile!
 

Hi Eveerne -

I wanted to check in on everyone..... So thankful for all the interesting information you posted Mokey. I have a question in regard to sound sensitivity. When I am in a noisy environment, I feel like I become a bobble head doll. OR the person I am talking to is literally moving like a bobble head doll...... Noise makes me even more dizzy and off balance.... especially background noise at a restuarant or something like that. I am wondering if you all have that same response...... does it hurt your ears or do you get the bobble head effect? I was reading that this is called the Tullio Effect. Just to recap my symptoms, I always feel off balance/disequalibrium 24/7. I have light sensitivity to flourescent lighting and am dizzy. I have no headaches. In addition since the accident I have a constant fullness in my left ear.... constant for 8.5 months. Now I am also experiencing ear pain in that ear and can hear my heart-beat in that ear, cannot even hold up a phone to that ear because of the pain it will cause. Also when I leave places with background noise, my ear throbs for hours????? Do you have this too Mokey?? At any rate..... after reading about the Tullio Effect, I saw a Neuro-Otologist today. He thinks I may have a Perilymph Fistula in my left ear...... I am having a barrage of tests done Friday Ecog and a VEMP test. I guess this type of ear issue can also cause light sensitivity. Anyone else eventually see a neuro-otologist to see what in the Hellen is going on?

I still can'tgo to restaurants or coffee shops or kids activities. My brain crashes. I don't get a sore ear though...that sounds awful. I have a horrid sense of brain squeezing and then I hurt with headache for a day or two after. Other than that headaches have gotten better. But after being in a noisy place, my brain pays me back by churning and shattering all through the night. Hard to describe.
I would love to know who you saw for the neuro-otologist? Was it in MSP? Will be there for an appointment in a few weeks. Always looking for a doctor who know abut tbi!
Hang in there.
All of these things indicate cranial nerve damage (vision, tinnitus, vestibular, audiology, etc. )
:(

I saw my ENT who is ordering the vestibular, inner ear and auditory tests.

He mentioned something called traumatic auditory-vestibular disorders after pcs. He also mentioned auditory processing issues in which the neuro-pathways around the brain stem can get damaged after mtbi.

The sound sensitivity and vestibular difficulties can only be stabilized by rebuilding and strengthening the neuro-pathways. But because we walked, heard and balanced before, the ability is there. He mentioned with various vestibular and auditory rehab it could take up to one year.

After the tests, I'll let you know what the doctors say. It seems that my visual, auditory, and vestibular systems/neuro-pathways will need to be stabilized, strengthened or rebuilt, and may take a year. Does this ring true for anyone else?

Sounds just like me! (ringing true....as in ringing in the ears:)
So wonderful that you have a doctor that understands. Do you know what tests have been ordered?

I am 19 months post accident...have seen some improvements but for me it is taking longer than a year.

The more i reseach the more i understand that this is all in the brainstem. Not to say that there are not some other deficits that I am dealing with, but the brain stem and cranial nerve damage is key. For people like us, we are LUCKY that the brain stem damage was limited. It could have been way worse. So blessed and cursed at the same time. And on we go! Good luck!!!!!

Thanks Mokey.

It's frightening how fragile and strong the brain is. At the time, I didn't think it was such a bad car accident.

Now I realize that if this much went wrong with me with the accident, it could have been so much more worse. I am grateful that it wasn't.

It looks like I will be 2 years off the tenure track and rat race of academia. It may prove hard to get back on, but it's my goal for now.

Doc
 

Seeing a Doctor Levine at the U of M ENT department. Mokey, are you coming in to see Rubenfeld? I proceeded with Levine on my own. I am still in the mild/moderate brain group at HCMC but I am just not seeing any improvement at this point ....NONE..... and that scares me to death. Do you both have the 24/7 off balance feeling when you walk? I got to thinking that with this constant fullness in my ear, and all my balance issues and the awful Tullio Effect I experience, I needed to look more into my ear issues. Mokey how old are your kiddos? Let me know what you find out Berkley Brain!!! I think we really have to take charge of our health during a nightmare like this. I am honestly considering seeing the guru of all dizziness/balance issues..... a Dr. Gianoli down South. I will see what happens after my battery of tests at U of M.

Hi Sara. Yes, I have an appt with Dr Rubenfeld. I wonder if the HCMC is keeping up with everything....I had a intensive testing with their audiogist but I don't think she did any of the central auditory tests that others recommend for my symptoms. Did you like Levine? Recommended?
My kids are 9 and 12... Growing up but still needing me. I hate having been out of it for the past 1.5 years.,., they say they can't remember what I was like before. Breaks my heart. :(