More Doctoring and Testing Today

Hello again TT,

Again, I apologize for the long post, and there's still more. If you'd like some background of my story. I have a post in the "Introduce Yourself" Section.

It's been a rough month for me, as I've been trying to deal with a more debilitating T (4 or 5 out of 10 severity). However, there may be a light at the end of the tunnel. This week, I saw a Neurologist, and set up some testing for next week. Her diagnosis was routine T, auditory hallucinations, migraine with aura, Ocular migraine, chronic daily headache, depression, anxiety, psychosis, dizziness, and vision loss. I also have the crunching in my ears when I swallow, but that has gone away a little. Some of the things on there she just put on there so I could be accepted for testing, but still, I'm a mess. I'm going to get an MRI, and and EEG. I'm also on Elavil 25 mg at night, a steroid dose pack, Imitrex for migraine, Tramadol for neck pain, and Indocin for moderate headaches. All of the meds have been ok except for last night I couldn't sleep since my legs felt antsy and I felt weird. I'm thinking it was the Elavil.

I've also been referred to a Vestibular Clinic for balance and hearing testing. The last hearing test I had before my T got worse was good, so here's to hoping that hasn't changed. There is also a Tinnitus Treatment Program there that takes up to 12 months and uses low pitch sounds to decrease the T.

Here are some links.... http://www.upmc.com/Services/ear-nose-throat/services/balance-disorders/Pages/default.aspx http://www.upmc.com/Services/ear-nose-throat/services/audiology/Pages/tinnitus-treatment.aspx

I also have an appointment for an evaluation with a Therapist next month.

Another referral I got was to a Neuro-Opthamologist for these clicking noises I've been having behind my eyes when I'm sleeping, and all of the other eye problems listed above. That appointment isn't for another 2 months.


I've been going for Vestibular rehab and have been doing the home exercises. They said they "have some hearing tests they have in their back pocket", but I've gone 4 times now and I've only been doing exercises. However, I temporarily stopped doing them after my head started hurting and the T increased as I was doing them. I'm going to get back on the horse for those today and see how they go.


Luckily for me, I have health insurance, but this could be pretty expensive. I started a new job this year, and it's been very difficult as I have been sick most of the time. I have gotten consent from my boss to take some days off for doctoring. Part of me wants to quit my job, stay home, and focus on doctoring. The other part of me chooses to tough it out so I can go on their insurance plan in a couple of months. I give myself credit for being so proactive about doctoring and for sticking it out at work, but I feel like I'm reaching my limits. One of my coworkers who has an inner ear infection with ringing, balance problems, sensitivity to light, the works, gave me a number of an ENT, and said that the first couple of months are tough, but it will get better and the beset advice is to not focus on it and get help to deal with it.


I have relied on my ears most of my life since I only have one good eye and the other eye with only peripheral vision, so T has been exceptionally difficult for me to bear. I've been praying a lot, and I have a feeling that it will get better in time.


I have heard that these doctors I'm supposed to see are very good. What do you guys think about the medications I'm taking and the testing I'll be receiving? Should I just go back to my regular ENT for more hearing testing as the Neurologist suggested, or should I go to these fancy-shmancy clinics and doctors downtown which my Neurologist also suggested? Why was I so stupid to not have protection in a loud club and to shoot off fireworks a month later? Either way, my world is upside down. I miss my old life when I could be goofy ; my true self; a person completely in tune and at peace with his surroundings. Meh, my parents have heard their share and then some, so I'm turning back to you guys and gals. Any advice, comments, or support would be very much appreciated.
Thanks, and God bless.

-Chum

 

Im sorry to hear that you are suffering so much. I realize from your post that your tinnitus was caused by loud noise? I have to say that I side with your co worker. There is no cure for noise-induced tinnitus nowadays. So I advise you to stop looking for it. I know that there are many stories where tinnitus leaves on its own (in fact, around 15 % of adults experience tinnitus up to 6 months, for 10% its permanent) so it could go away. However I advise to maybe stop thinking about it so much, focus on your work, friends, hobbies. Don't beat yourself for not protecting your hearing People do stupid things all the time and many of them get away with it. Also, you are still young so you should easily will get used to it in time (yes i know this is the stupid habitutation theory, unfortunately this is the only "cure" we have nowadays). For me it helps when i stop detecting it as a threat. I mask it in my head and tell myself that this is eg. the fridge working. I read from your other post that you had cat-hearing before so maybe just try to mask it by thinking that it is a noise coming from the distance. Then you probably would just not pay attention to it.
I read from your other post that you are a Christian so I will say that God never sends us more to carry than we are able. Maybe try to find a reason for it or a way you can grow through it as a person. God knows what is going on with you and if it hasn't gone away it's His will and you just have to accept it. Doesn't mean that you shouldn't pray though
I dont no if this was of any help but this is really all I have.

 

Thanks, Stina. Yes, my T is noise-induced, so I know that there is no cure for it, but I'm going to pursue treatment to help with it. Yes, I've been giving all of my pain and suffering to God and trusting in Him. When I've been praying to God for healing, I've been hearing him say, "I'm going to heal you. Just give it time." which is a huge relief. Plus, my audiologist said that, since I'm young, it probably will go away, but it may not. I really do have a feeling that it will go away, but, if it doesn't, I think I'll be fine anyway. Either way, I'm going to be very persistent in my prayers for healing. I've always been very patient, so this will be a good test of my patience. I like the stat of it going away for some people within 6 months. That's the time frame I've been thinking about as well. It's just this first month has been very hard, but it has been getting a little better. I will take your advise and try to stop thinking about it so much, to imagine it being far away, and to not consider it a threat. Thanks again for your reply.

 

Hello again TT,

Here's an update on my situation with mild to moderate T and H, dizziness, nausea, headaches, vision changes, anxiety, and depression.

Yesterday, I visited the Eye and Ear Hospital in Pittsburgh, Pa. and was given several tests including an Ocular Motor Screening test, Caloric Testing, Positional Testing, Rotational Testing, and a Vestibular Evoked Myogenic Potential (VEMP), . The day before that I went to an ENT and had my hearing tested. My hearing is in good shape, but the test only went up to 8000k. At the end of the day yesterday, I met with a Neurologist and a big time Ear and Eye Doc. My time with him was pretty brief maybe 10-15 minutes, and I was on the brink of tears from stressing out about everything. He didn't give me a diagnosis, but he said my inner ears are working fine (plus in my book), but they are not working well together. He said that if I was a car, I would need an "alignment" whatever that means. Also, he said that I'm not imagining these things and that something is definitely wrong. I told him about how I only have peripheral vision in my left eye due to Ocular Toxoplasmosis while I was in my mother's womb. He wants to look at my MRI and EEG results that were taken today. He also referred me to their audiology department and ordered a CT scan of the bones in my ear (CT ORBITS SELLA P FOSSA/IACS WITHOUT CONTRAST) which I have scheduled for tomorrow. He asked me if the people at my Vestibular Therapy did any exercises of removing crystals in my ears which they didn't. I'm mad at myself for not bringing up AM-101 and asking about their Tinnitus Treatment Program that might include TRT and low level sound therapy. My follow up appointments with my Neurologist and the Ear and Eye people isn't for at least a couple of months, but I'm going to try to get an earlier appointment and ask more questions when they call to tell me the results of these other tests.

By next week, hopefully my docs will call me with their analysis of the test results. The lady who gave me the EEG today said, "No news is good news in this business." I tend to agree with her, but at least I'll be able to see if there are any treatments for my problem. To be honest, I'm still very anxious about all of this, and I cried a lot last night. I miss my old life and am having a hard time dealing with everything that's going on. Perhaps it's the stress from two half-days of doctoring and no real sleep in three days.

While I was typing this. A nurse/ caseworker for my insurance gave me a follow up call, and we discussed everything that's been happening over the past 2 weeks. She said that I'm making progress and that I should agree that things are looking better than 3 weeks ago when I was sick as a dog at my desk. She also said that there is a procedure I should bring up to my Vestibular Therapists about removing crystals in my ears.


I was once told by a writing professor that I'm a "very efficient" writer, but I think my posts have lacked structure and have been pretty long and rambling. It's a lot, and I appreciate the time and effort some people may take to read them.

Last night, I actually slept well with no masking. I must get another good night's sleep tonight so I can start work tomorrow and get the other CT scan. What do you guys and gals think about all of this? I look forward to hearing from all of you again. Thanks, and God bless.

-Chum

 

Im glad that you have such a good doctor who want you to go undergo such thorough testing. It is always nice to have someone take care of you and give you feedback.
As for AM101, maybe you can send an email to the doctor and ask? Actually I think AurisMedical is the one who deals with it so probably you should emal them. However sometimes docs have their emails up on the webpages of hospitals, so maybe try googling.

 

Yes, Stina. These doctors are very good. I feel very blessed and am grateful to be able to see them. I just wanted to get the Doc's take on AM-101 as I'm not really thinking about doing a study or participate in the trials for it. I think they are only doing it in certain cities which might be far away from me. I might do some research or call Auris like you said. Still, if I can't get an answer from whomever calls me with the test results next week, I will call or email my PCP, my Neurologist, or the Big Doc at the Eye and Ear hospital.

 

Update: My Neurologist's office called and said that my MRI results are normal, and my EEG showed a low heart rate at base line which is normal for a young person. I'm pretty relieved and am going for the CT scan of my ear bones later today. If I don't hear the results of that come Monday, I'm going to call the Vestibular Clinic to see if they have them.

I couldn't sleep much last night and my heart was racing after taking an Imitrex, 50mg of an Elavil substitute and 3 MG of Melatonin. My Neurologist should be calling me back today to maybe change meds.

I still need some answers, and I don't feel like waiting until May to get them. I'm going back to work now. My lunch break is over.

 

Update:
(This feels more like a personal blog now, but at least I'm getting down my thoughts. )

I got the other CT scan done today and actually saw the girl from my vestibular therapy as I was leaving the imaging center. She asked me how everything went with at the hospital yesterday, and I gave her the gist of it. Plus, I told her that the big ear doc, Dr. Furhman, said to try the exercise of removing crystals from the ears even though I'm not diagnosed with BPPV. She said we could try that during my next appointment on Tuesday.

When I came home from the scan. I laid down and tried to listen to my heartbeat to "align" myself like the doc said. I don't know if any of what I'm trying will work, but I just feel like I need to experiment with adjusting my senses back to where I used to have them. I tried holding my breath in bed and focusing on my heartbeat/ blood circulation like I used to do. I even tied a T-shirt around my good eye (right) and walked around the house using by bad eye with only peripheral vision (left) to try to get it to refocus since it feels like I can't even use it like I used to.

While I was doing it, I started thinking to myself, "Maybe I'm onto something." and, "This is stupid." Heh. Besides, some of my vestibular exercises consists of having my eyes closed and walking backwards and forwards.

I still feel like Charlie Gordon from "Flowers for Algernon" as he's regressing, but I'm still holding onto my old self with all I've got.

Feel free to chime in on what I seem to have made into a personal blog. I might just copy and paste all of what I've posted on TT onto a Word document since, I must admit, putting my experiences and thoughts into words feels pretty good. Sparing all of you this drivel and starting a journal also seems like a good idea. Still, the idea of starting a blog (web log) is for people to see it, but I've never even had a journal let alone a blog, so we'll see.

So long for now, TT. I'll be checking back here all weekend. Happy Valentines Day.

 

TheChum did all this testing (vng) affect your T in any way? I'll be having this line of tests done in a week for my dizziness. I already had an mri of my brain and ear canals with contrast...all clear on that end. I'm not sure if the vemp is part of my testing but the other parts sound familiar. I imagine vestibular therapy will be my next plan of action to combat this ongoing problem. It would be nice to know if the dizziness is an inner ear issue, if the t is causing it, or it's just my anxiety. I'm hoping for answers but prepared to walk away with none as well. Hopefully you're finding out more as you go along. Keep us posted!

 

Hey, Lynnette. Thanks for your reply. Overall, my T wasn't affected by testing. There was one test where a small speaker was put in my ears to make a semi-loud knocking sound, but, thankfully, it didn't hurt me or increase my T. All the other tests had no chance of affecting my T, but some made me a little dizzy. The testers should help you through all of them and give you tips to help you keep your composure. Definitely go for Vestibular Therapy. It has helped me a little since I started over a month ago. It basically helps you adjust to your "new" set of senses. It's good that your MRI and CT scans were normal, and that you're going for these tests. They create a good data set for doctors to be able to tell exactly what is wrong, and they also rule out a lot of things. I hope they go well for you. Since you already have your MRI and CT scan results, I'm guessing that they will be able to give you a diagnosis. I'll keep posting on here all next week to keep you all informed.

 

Hello again, TT.

I just got the news yesterday from my local Ear and Eye hospital. The Doc there said that there is a possibility of minimal Superior Canal Dehiscence in my right ear. An appointment is set up for Friday for a doctor to help identify and manage it. They said that they probably won't do anything about it even though, through my own research, I found that there is a semi-risky semi-invasive surgical procedure to correct it.

I'm not sure where this falls into my T and H problem, but it probably will help my balance issues. I'll get more information after my visit on Friday and will update all of you.

Cheers.

-Chum

 

The appointment was, I guess, good overall, but still kind of rough. I got a little emotional and anxious when speaking to his assistance about what I've been going through. He said the CT scan was only 6mm which he thinks is clear enough to diagnose a dehisence. After doing some tests he said that he doesn't think that I have SCDS which is a relief. He said to follow up with Dr. Furhman and get some therapy for the Tinnitus suggesting TRT. My insurance probably won't cover that, but we'll see. He also said just get some therapy in general for which I have an appointment. His official diagnosis was just complications due to Tinnitus and Hyperacusis which really has me counting my blessings and confused on where to go from here. I brought down a bunch of paper work and over 30 questions, but I only got to ask him 2 or 3. I'm beating myself up for not asking all of my questions and feel like I don't have closure. I guess I just have to count my blessings and give this stuff more time and thought. Please let me know what you think. I look forward to hearing from you. Thanks.
-Chum

 

Update: the only thing that seems to work in helping hearing my autophony sounds (breating, footsteps) again and making me feel normal is putting in earplugs. I am trying not to over use them, though. Any input on that would be appreciated.
Thanks
-Chum

Edit: I'm also at my desk wearing sunglasses so I won't get a migraine.

 

Update: A loud microwave spiked my T in my right ear. I hope this isn't permanent. It hurt. I'm going for more testing at another ENT tomorrow. Ugh! This stinks!

 

Have you thought about asking for prednisone IF the spike doesn't do down in 1-2 days? Sometimes it helps Ask the ENT though!

 

Hey, Stina. Thanks for the advice. I'll ask tomorrow.

 

Update: I lost my job today. I was told that it wasn't going to work out, and I agreed with them. I haven't been there in spirit, and I've been so foggy that my work and concentration has faltered. Plus, I took too many days off for doctoring, some of which were probably unnecessary. It was also a noisy environment with a loud printer in my office (which they said they were going to move, but never did).

I was pretty stressed out about it when I got home. I began talking to myself like I do sometimes about everything that's been happening to me. I start some therapy next week and have an appointment for TRT next week as well. They say that people get better from this, but the first couple of months are the worst. I just need to get through these tough times so I can get my life back on track.
Thanks for all of your advice and support. I might take a break from here for a week and let all of you know how the therapy went. If you could, please pray for me. May God bless all of you.

-Chum

 

Im sorry you lost your job But sometimes these things are for the best Are you gonna look for a new one or take a break? Good luck with TRT

 

I'm going to wait a little while before I take on a new job.

 

Probably a good idea I wish you good luck with habituation!

 

Hey guys. I'm back due to a spike after playing a video game with gunshots. I was wearing some ear muffs, but they weren't tight enough around my ears. Now, my T is up to about a 4, 5, or 6. I'm also starting to hear some lower pitched beeping that sounds like pulsatile T in my right bad ear. I haven't been sleeping well after I stopped taking 3mg of melatonin at night due to it causing vivid and disturbing dreams. It's really hard for me right now. I woke up dizzy and nauseated like during every other spikes. This one seems worse though. Will it go back down? Some of my spikes have gotten better, some king of linger for up to a couple of weeks. I'm kicking my self for making it worse so many times. Should I take an anxiety pill in the middle of the day? Was it the 1mg anxiety pill mixed with the 50mg 0f Elavil that gave me weird dreams? The anxiety pill doesn't necessarily help the ringing, but it makes me not care about it as much. Seriously, what should I do? Please let me know. Thanks
-Chum

 

I visited my psychiatrist yesterday. He said there is no magic bullet for t, but there are ways to help people cope. So he advised me to take B-viatmins (normally sold in colmplexes) in order to help the nervous system (even if you eat normally you should take them). Of course they dont have a quick effect, but can help prevent further damage. Also, maybe visit a psychiatrist yourself and speak to him about the meds. Im taking an anti-anxiety med called Coaxil right now. Anti-depressants have a longer effect and can help you cope better.
Also, using I who love music's tips: baby your ears and dont listen to any loud sounds. Sometimes the changes also have to do with anxiety or so. I also thought tonight that I heard new sounds, but I relaxed and they went away. So it could a bit of imagination as well.

 

How loud was your video game? Something like that you can just turn down so you dont need earmuffs.. Or were you someone elses house who had it loud?

 

I was at my friend's house. At first, we had it down low, but he turned it up a little when I put on the ear muffs. It might have been around 75 db which is my discomfort level on my right side. I noticed my T spiking during play but just ignored it. I also had some cotton in my ears most of the time. This is the second time I've been with this friend where my T and H got worse. The first time was the due to firecrackers on new years and that was when the debilitating T and H came. I might want to take a long break from this friend, but he really is the one friend I actually hang out with nowadays.

I think several days of no loud sounds at all and at least 8 hours of sleep at night will help bring it back down again. I'm not feeling as nauseated as this morning which might be from drinking some gingerale. I'm still pretty anxious and dizzy though.

 

I have an appointment with a therapist at a behavioral health clinic this coming week for a psychiatric evaluation. A psychiatrist might be there was well. I imagine that I've been getting plenty of vitamin B from my daily multivitamins and Lipo-Flavonoids, but I might try taking a straight Vitamin B pill. I don't really know how I've been reacting to the anti-dep, but I'm still going to take them since I'm only close to a month into them which is about the time you start to feel the effects. During these latest spikes, I've been using water white noise and classical music, especially Strauss's Blue Danue waltz to help me cope. I basically have it on repeat in my head constantly now.

 

Hey Chum sorry to hear about your job. How are things...any more tests scheduled? I had my VNG and it came back normal...no inner ear vestibular problems to point to the dizziness. Who knows where it's stemming from. The doc said it could of been a virus that attacked my inner ear (although I'm not sure why they couldn't figure that out?), my slight high frequency hearing loss in both ears or just the anxiety/depression I have. My head and ears are a mystery...I need a Dr. House! They recommended vestibular therapy and to see a migraine specialist since I suffer from those as well. I think my migraines are related to my anti'd though since I never had them until starting this medicine. I can't win!

 

Hello, Lynnette.
Things are ok for the most part. Yeah, I was bummed about losing my job, but I will get another one. I went through the gauntlet of tests and my official diagnosis from a neurotologist (ENT/neurologist) is Tinnitus and Hyperaccusis. He then suggested Tinnitus Retraining Therapy which I have an appointment for this Friday. I'm pretty sure I can make a decent recovery if I go through with it, but I don't know if I want to pay the high cost. I need to confirm what my insurance will cover. I also have follow up appointments with my neurologist this month, a neuro-opthamologist in Arpil, and the doctor that reviewed my vestibular tests in May. I think I'm done with testing for the most part, but I will see what the neuro-opthamologist has to say since I only have peripheral vision in my left eye which I imagine is playing a role in all of this.

It's good that your VNG result is normal and that your inner ears are working well. Perhaps, for some reason, they are not working well together like mine aren't. I don't know what to say about your case except to try the vestibular therapy as it should help your dizziness if you keep with it. If it was a virus, hopefully it cleared up by now. I don't know they can tell that, but a former coworker of mine had his problems start from an inner ear infection which was diagnosed by a regular ENT. A good head doctor/migraine specialist/neurologist could be able to prescribe migraine medicine like Imitrex. My neurologist prescribed this for when I had migraines at work. I took one before the migraine kicked in a couple of times, and it worked pretty well. Also, try not to take too many over the counter pain meds for your migraines. Definitely mention to the next doctor or vestibular therapist (hopefully it's the one that will see exactly what is wrong like a Dr. House hehe) that you see about your how you've never had migraines before all of this happened.

If you go for vestibular therapy, they should have all of your test results and could do a further evaluation in order to start the right kind of exercises. To be honest, even though the doctor who reviewed my vestibular tests said to follow up with vestibular therapy, I have not kept up with them until last night when I did them for the first time in a week. Afterwards, I felt like my old, more aware self, but the T always kicks up a little when I do them. It's an interesting trade. I have an appointment for more vestibular therapy today, but I canceled because I need to find out what this TRT lady says on Friday. I don't know if vestibular therapy will "realign" me like the one doctor said, but it seems to help.

What other tests did they run besides a VNG? I'm pretty sure I did that test plus at least 3 or 4 others. I can imagine you being frustrated with not receiving a clear diagnosis like I did after vestibular testing, but the answers should come in time. I'm looking forward to hearing from you and hope you feel better.

-Chum

 

Update:
Well, TT. It's about time I stop feeling sorry for myself and going crazy about my T and H. Just today, I watched the movie "Eternal Sunshine of the Spotless Mind", and it got me in a sad mood where I yelled in agony and teared up; causing a spike in my T and my eye to hurt/blurry vision.

I won't be watching that movie for some time if ever again. It seriously makes me sad every time I watch it, and it's a roller coaster ride of emotions with literally an "OK" ending.

I am also going to start protecting myself to end this almost every day self-created spiking cycle.

I've decided to take a break from TT and doing anything else that makes me be sad or think about my T. It's time to move on. However, like Arnold Schwartzneger said, I'll be back.

To Lynnette: I hope everything goes well, but you don't have to reply to my questions. I could see them when I come back. Still, I hope you find some answers and feel better.

To Stina: You seem so in control and knowledgeable even though we've had our noise induced T and H about the same amount of time. You've clearly been the most responsive to me on here, and I give you many thanks for that. When I see your pic of you, the only word I can think of is, "Sweetheart" God bless you.

To all of TT: Thanks for the support over the past 2 months. May God bless and keep all of you.

-Chum