Please Help, Very Scared!

[McGee]

I've had T for 3 months which was caused by Zoloft and I have mild sensorineural hearing loss in the high frequencies in my left ear and mild hearing loss in the right ear. For the last week my left ear has felt extremely blocked and it is driving me crazy. I was just starting to get a grip on this terrible tinnitus when this happened and now my anxiety is back through the roof and I can't eat or sleep and I cry all the time. I'm sure I read somewhere that it is common for people with T to feel a fullness in their ear but I have read so much in the last 3 months that I can't remember if I'm right or not. I also have bouts of sudden deafness where my ear feels like it loses all hearing for a few seconds, this is scaring the crap out of me! Does this happen to any other T sufferers on this board, I have asked a couple of places elsewhere but not really had any responses so I'm freaking out. Did your ear feel blocked for a while then go back to normal and how many of you here have hearing loss with your T? I'm so worried my hearing loss is going to get worse. Please help me, I feel like I'm losing it and my thoughts are starting to get pretty dark

 

[Miss lavender]

Lets get your thoughts back to light. Before I developed tinnitus I had a blocked/ full ear sensation for about three months. It' can be very scary and annoying but believe me that will go in its own time. I don't know how long it will take in your case but most often than not it just goes away on its own. If you are really concerned go to your family Gp. I also sometimes get the deafness feeling in the ear but again it disappears as fast as it came. I know it's easier said than done but don't stress too much about these symptoms as they are relatively common for people with tinnitus. Just look through all the information on this great tinnitus forum and you will find lots of comfort as I have done. Good luck, you will be fine with time. Time is your best friend.

 

[Karen]

McGee,

I used to have the blocked ear/fullness feeling all the time, too, but it went away on its own. Mine took awhile to go away because, like you, my T was caused by an ototoxic drug. But, believe me, it will go away in time. Also, that feeling of pressure change, or periods of sudden deafness, are common, too. Don't worry; things will get better!!

As Miss Lavender says, try not to stress too much about the symptoms you have. Most of us with tinnitus have experienced them, and they will subside. Find ways to distract yourself, get more sleep, and remain calm. All will be much better in a few months, believe us!!

Take care, and keep us posted on how you're doing.

 

[gary]

I have had T for a little over a year now. The first 3-4 months there was fullness off and on. Now it is just the noise.
When I let myself get stressed the T gets worse. 66 yrs old...

 

[McGee]

Thank you for your replies, I'm so upset with myself that I am back on this panic/anxiety cycle again. I had about 8 good days in a row and I really thought I was going to be able to live with this. Now I'm not so sure, I can't for the life of me picture myself being a normal happy person again with this screaming in my head. I'm such an anxious person anyway and a worrier and had trouble sleeping before the T but this is just ridiculous.

It makes me feel better to see that a couple of others have experienced that "plugged" feeling too. I'm still freaking out thinking I'm going deaf, I would be just defeated if that happened I was so shocked when the audio told me I had hearing loss, I was so sure my test would be fine. I never dreamed a medication that was supposed to help me could damage my hearing! I have spent the last hours reading through this forum and my gosh you are such a lovely bunch of caring and supportive peoples Many of your posts have helped me a lot but I also feel so heartbroken for you too. We are all going through something that unless you experience it yourself you can never even come close to understanding. Please keep up your replies and I'm very interested in people that have T and hearing loss and to know if anyone's hearing loss got worse over time? Take care

 

[Per]

McGee, I feel for you and it seems like we share some factors. As we talked about in another post I'm not 100% sure as for now if I have a hearing loss but the fact of the matter is that almost everyone that's been living over 30 years has some sort of hearing loss, it's only a matter of degree I guess as we loose fragments of hearing each year when we get older. I don't know your age but I'm 43 now and I've been taking medications like painkillers, benzos, antibiotics and sleep med. As you say some of these meds. can actually promote T so I suspect everything at the moment. If your test proved hearing loss it's not 100% guaranteed that that caused your T! It's like looking at an MRI scan, when you really investigate images like that you can find all sorts of spooky stuff that you never would have bothered yourself with if you never knew about it. I know that hearing loss and T is a marriage made in hell but I'm not sure if they always come out as an answer to what caused the T. Have you experienced any acoustic trauma? Sudden loud noise exposure or similar? I have listened to music trough headphones almost since I was a teenager but very rarely on loud levels cause I preferred my music comfortable. Perhaps I'm in denial as you have described yourself, but I can't say I hear any less now than before - on the contrary I pick up every god damn sound around! What about you, do you experience any hearing loss in the everyday life or is the hearing loss just a medical diagnose for now? Would you have suspected hearing loss if it wasn't for T?

When it comes to loosing hearing suddenly in one ear and/or feeling sudden changes like you describe I have the same. Suddenly I can get a different much lower tone that take over everything and my ear goes weird, like it's tightening up, also it "closes up" in a way. I guess alot of T sufferers get that from time to time. The bottom line here is that we can't go def just because we have T. I haven't met any medical people supporting that, nor have I ever heard that from anyone that's been dealing with T way longer than us.

 

[object16]

I've been very scared as well this past week. My tinnitus went beserk. I had to take some imovane to get to sleep, and i just make sure that i stay only in places with no noise, and always have white noise/pink noise in the background, 24/7. Tinnitus does not get better right away - it is gradually becoming more tolerable, and has changed in character and intensity - i just try to baby it - which means i use noise cancellation headset by Bose if I am working in a room with a lot of noise such as loud exhaust venting.

 

[erik]

@object16-- you already know that T will get better with some time since you have dealt with it before so you know you can weather this storm. You have done it before and you can again. Just try not to over protect your ears or it will prolong the recovery. Normal sounds may aggravate your tinnitus but that is mostly your emotions and fears more so than the tinnitus itself. Normal sounds won't hurt you so no need to protect. Loud sounds, yes, do use some protection on your ear. You can do it and it will get better, just tell yourself that over and over.

 

[Danny]

Just a noise, can't hurt you. Don't let it control you, just a noise can't hurt you.
Danny

 

[McGee]

@Per Thanks for your reply, it was great to get some feedback. I'm 37 years old and I would have had no clue about any hearing loss if not for going to the audio because of the onset of T. Now that I have had the test and there is hearing loss shown, I of course feel that I am having a harder time hearing from my left ear. If it was sudden loss due to the meds I was taking then that would make sense but I could be over analyzing too.

I had pretty bad hyperacusis not long after T started but that has calmed down somewhat. It's still there a fair bit but not as bad as it was. My own voice sounds different now and I sometimes can't tolerate talking for too long, as well as other environmental sounds hurting my ears. I wasn't exposed to any loud noises or sudden acoustic trauma before T and I never listen to music through headphones, I don't even own an Ipod. The only noise I can think of is a 2 hour car ride I took about 3 weeks before my T began in which I had my car stereo on but my ears did not feel the least bit odd after that. It wasn't until I took the AD's that my T began.

I'm not worried that the T will make me go deaf, I'm worried that the hearing loss I do have is going to progress further and make me go deaf. The "plugged" feeling in my ear has panicked me and sent me back into the anxiety spiral. I haven't even gotten out of bed today I'm so anxious and upset. My heart is pounding, T is screaming and I just want to curl up in a ball and cry until this all goes away

 

[Per]

@McGee

From what your write it seems to me that your general anxiety is playing a part here and it creates worries in addition to the typical worries the annoying T is creating. T+anxiety=typical and it doesn't get any easier when anxiety is something you've had prior to T anyway, it's a very bad loop. I think alot of us can relate to weird physical sensations in the inner ear after T. and it's obviously processes going on in there that no one seems to be able to diagnose, but perhaps it's our bodies trying to repair something in there? It's always a process going on in our bodies anyhow, when they can't get a visual reference of the inner ear it leaves us with alot of wild speculations although there are some common phenomenas that ENT docs should be able to talk about.

My T is still raving on like mad, it's been like that since I got it but on rare occasions it does get a bit lower in short periods. There are several cases of severe T going on for many years and then suddenly: STOP! If I can give any mental advice I can only share what I'm basing my survival ritual on myself. I try to think about advancements in things like neurosurgeon science and I'm thinking "I didn't get T in 1945 but in 2013, right now they are operating on people with brain damages with great success and I believe the answers to the T mystery will come from the same science. I think it's hope for us to get free from T. Each time I'm thinking really dark and gloomy thoughts I try to mobilize strength in my believe in neuron science and that they will be able to operate safely in the brain cortex that generates our phantom sounds. They need to be shut down! Modern science is what keeps me up in times of suicidal thinking. Medical environments has also been a source of frustration for me, especially ENT people, but I'm not interested in their approach anyhow cause they are not the ones thats interested in curing this, cause they don't have any better knowledge than anyone here. But brain surgery and neuron science is what I think of to get my positive juices flowing again. My condition is so bad that I really need to concentrate to keep my head over water but it's an exercise. Hang in there, we all need to push each other out of the darkness.

I got this link from another post:

http://www.ted.com/talks/andres_loz..._and_the_switch_that_might_turn_them_off.html

 

[Leah]

I could have written all these symptoms, anxiety etc.
Though you posts were not addressed to me, it helps so much to read them.
Thank you, thank you

 

[Per]

No worries Leah, everything we write here can be beneficial for anyone that reads. Glad you feel better. Some times I feel deep in the lowest darkness but then I read some common sense and encouraging posts and that drags me up from the mud again. That neurosurgeon talking in that video is obviously onto something, when they can stop Parkinson trembles by lowering the overactive brain section I hope they can do the same for us! If the auditory cortex is too switched on, too hyperactive, then the hope is that they will be able to restore it, thus making it stop constantly creating phantom noises. Seems to me that this science can carry alot of potential for all people suffering from brain damage, and T&H is a brain disorder caused by and affected by numerous things. Hearing loss is only one of those things, but as we know the causes can be complex and many.

Although I'm obviously not a scientist my clear perception is that a large amount of neurologists and surgeons in that medical field agree that the T is coming from and is created by the brain, the ear does what the brain tells it to do, so let's hope they find a way to manipulate that organ with electricity or other methods. After all, we want the T to stop, that's the main thing. If opening the scull to have electrodes mounted to key areas I'm fine with that. People get their brains opened all the time, I even observed a person watching TV while her brain was exposed for several hours, it was shown in a documentary about a severe muscle disease she had. The neurosurgeons were even asking her key questions while they were trying out stuff to see her reaction, because of this she had to stay awake. Questions like "do you feel something in your fingers now?" And she could reply clearly and instant. Imagine if one of us were laying there and one of the surgeons asked: "can you hear the tinnitus now"? And you say yes. Then he could move his focus and ask again: "What about now"? NO! It's gone!! Well, these are the survival strategies I have when I'm too low, I visualize how I one day can get free from T.

No one knows how the cure for T will come but I think neuroscience carries great potential. The scientific study of the nervous system is exiting. Let's back up each other while we're waiting for a cure! And also, please make any greedy ENT "expert" talk to the hand whenever they throw their bullshit theories of eternal T, learn to deal with it and bla bla in your face. I used to say as a salesmen back in the day: "never accept a no from someone that's not in a position to say yes."

 

[LadyDi]

Hey McGee, sounds like you have some serious anxiety/panic issues. I feel for you. I have the battled the same problem, as have others here on this board.

A lot of good advice here already, so I will just briefly add this:

1. You can make yourself crazy trying to figure out what caused your T, what you could have done to avoid it, etc. I spent lots of money, chasing down the best specialists out there, to prove that yes, my T was caused by barotrauma from a long airplane flight. Guess what? It remains impossible to say for sure. And at the end of the day, it doesn't matter anyway because in the vast majority of cases, there at present time is no surgery or treatment to completely fix the problem even if you knew the cause. So move on and concentrate on managing your condition. And reread Per's post: There is lots of research going on out there and hope for all of us.

2. In the meantime: I consider my T to have two components: the anxiety/panic part and the ear noise part. They are connected but it some ways, need to be treated separately. You need to get your anxiety under control to be able to effectively deal with the tinnitus itself (which truly is more of a brain disorder than an ear disorder).

3. I know you probably are worried about meds, given you think Zoloft caused your T -- but don't be afraid to look at other med options. Also, if you search on this site, you will find many people who use natural supplements. Magnesium has helped me and others. Also, melatonin for sleep.

4. Try not to dwell on every new symptom you notice pop up. It just makes you more anxious and your body even more hypersensitive to changes. Anxiety makes us uncomfortable. Try to start accepting that fact, rather than objecting to it, and concentrate on building techniques that ease the anxiety to the point you can live with this discomfort. Meditation (guided tapes, particularly those geared toward anxiety) help a lot. Exercise. Breathing exercises. Lots of resources online.

5. Finally: If you haven't tried cognitive behavioral therapy, I highly recommend it. Best if done with a therapist, if you can afford it. But if you must use a book, try this one. Recommended by my neuropsychologist. It is workbook, with lessons you can do one by one:
http://www.amazon.com/dp/0195311353/?tag=tinntalk-20

And remember, McGee, as they sing in "Avenue Q:" As hard as it may seem, it's only for now. Someday, this will all behind you and you will feel so much better.

 

[Karen]

Excellent advice, Lady Di. And --- I love the Avenue Q song!! What a great show!

 

[Per]

Just to follow up on my comment on not accepting ENT talk that goes "learn to deal with" and "this is for life" - I do agree we should learn to deal with T as LadyDi also explains, but I don't think that's what ENT people are essentially meaning when they say what they do. They actually mean "go away, I have no clue" when they throw their doom and gloom on us. That's not acceptable and we shouldn't just learn to deal with the eternity aspect of T cause that's not what any scientist are saying and science is a better judge. They are identifying the source of T and they have made improvements in neuroscience, as mentioned in my other post.

Let's learn to cope and deal in every way and form we can until a cure or effective medication is available. Ignorant ENT jerks can really ruin every sort of positive thinking cause most of them are fixed on the death sentence so to speak, and as we all know by now they don't know more about T than many on this forum! To tell you the truth I think some of them are sneek peeking here, as they should. I haven't met one ENT person that said "Hm, perhaps I should read up on T and educate myself on this thing" The reason is that it's difficult for them and it doesn't generate any money, removing stuck marbles from kids noses does. One things for sure tough, the medical company that gets to patent the cure for T is going to make their shareholders VERY rich! So that's a motivation right there.

 

[Leah]

Lady Di,
thanks for your wonderful post. Brain disorder not ear. Wow..I need to educate my family and docs with that terminology.

 

[LadyDi]

Good follow up, Per, regarding the standard ENT "sorry, can't help you" line. Hearing those words from my own (and now former) primary ENT pretty much kick-started my anxiety. Like others on this board, I have found most ENTs pretty worthless. The exceptions are two specialists that I had to travel far to consult - including one (my favorite) who had T himself and went out of his way to reassure me I would recover, just as he had.

So Per's comment made me want to add one more thing to my list for McGee:

6. Dealing with anxiety -- especially if you are dealing with anxiety AND tinnitus at the same time -- is exhausting. So spend your time, healthcare dollars and valuable energy with professionals and people who want to support and HELP you. Don't deal with the others. As with tinnitus, you will find folks who don't understand what anxiety and panic is, or how devastating it can be. There still is a lot of stigma regarding mental health problems. My own mother, in the beginning, told me I should be able to buck up and get over being anxious, as I was a "strong person." I had to keep telling her that anxiety involves brain chemistry making your body go haywire, that it has nothing to do with emotional weakness.

In my experience, the potential helpers are: therapists, audiologists, acupuncturists, healthcare professionals open to on-traditional treatments, friends and family who are willing to sit with you during the crazy times and just be there for you, and other people who have suffered with anxiety/panic. There are more of them than you can imagine; you already have met some of them on this board.

I also have been shocked to discover that some very together and successful people I know personally turned out to have worked through far more severe anxiety than I have. Talking to and learning from them has meant so much to me. You might look for a support group; there are a lot more of them for anxiety than tinnitus. Just make sure its a group that keeps people moving forward, not just letting them wring their hands. All groups are not equal.

But the most important thing is: Build yourself a Team McGee of positive, supportive people who you can count on and whose goal is to get you better.

And thanks to Per, Leah and Karen, who commented on the previous post -- and many others here. You guys all are on Team LadyDi.