Life Is Drying Up...

*Trigger warning: Contains Stuff About Severe Depression and pretty angry thoughts. Please avoid if you are experiencing any kind of depression or suicidal idealization to a profound degree*
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I was starting to have a better week and had a small lift in my general spiritual state of devastation after having some of my health issues clear up. I also went on a hike for the first time in weeks, which helped a lot for me to feel better and finally get back to nature.

That was utterly shattered today while riding in the car for about a half hour, with my earplugs in. I don't know if I have become more sensitive or what, but the vibration noises in the car were horrific, but not over 70 db for whatever reason. They seemed to attack my ears through bone conduction nonetheless.
For the first time in my life I have had to ask my dad to speak louder to me because I can't hear him since getting out of the damned car. Bad enough that now I not be able to travel anywhere, but this is just horrible. His voice is just fading in the distance along with everything else, especially the low frequencies which were very important for influencing my emotional and spiritual health.

It's just days like this where the heartbreak becomes so extreme (and has been very long lived) that I really wish I was dead. Pretty sure I won't hesitate to be put down medically in the next year if my hearing gets worse because of how it cuts me off from everything dear to my heart, causes sensory integration problems, and leaves me in a psychological wasteland. It has become something far beyond, more penetrating, and more permanent than a major depressive episode.

It's just been so hard in other ways, having to deal with a migraine every day of my life, sitting in the house with few friends ever visiting because it hurts to talk to people (and they are angry that I don't like going to loud places with them). I can barely get out of the house, even for a walk around my neighborhood, because of the onslaught of city and car noises and the fact that even a passing car can set off migraine and ear problems. Earplugs, which once made the world accessible to my damaged ears, have also become a terrible burden and have seemed to exacerbate problems. And now driving has been added to the list of forbidden fruits.
Not to mention I am beginning to live with chronic pain and stiffness around the back of my neck and face, accompanied by nausea. As it stands, I can also barely do any exaggerated movements with my body (lifting things, cleaning the house, doing anything other than light walking, even drawing sometimes) without setting off the ear problems or the migraines. I can't live remotely like people my age, and even my grandparents have a far more active and richer life than I do, and I'm only 22.

I really don't understand why the world does not pay attention to the fact that tinnitus and hearing loss can potentially kill, ruin lives, smother dreams, and break the hearts of people of all ages. Every development is terribly slow and the doctors never take you seriously, because people don't see these conditions as potentially terminal, which is an absolutely flawed viewpoint.
We all live in a noisy world that continuously assaults us, with the vast majority of that world giving little cares for the immense suffering people like me face. I'm just sick of it and wish I were never born into this world that has become a plague.

I try to remain positive through everything but the more things that get taken away, the harder it is to be positive. Especially when you are left with things that have no sentient importance or value.

 

Keep hiking in nature. It was sea air and forests which helped me in the darkest times.

 

Holy Sh*T !! Man you are suffering !! So frickin lame!! I am so sorry. Been there friend. I have walked through the valley of death!! Worst time of my life!! I get it!! But guess what....I am still here. And you are going to make it through too!! It's not easy, in fact it sucks ass, but it's possible with effort and desire!! Find and seek positiveness !!! You are worth it!!! I have been dealing with severe high volume high pitch T for 4 years now. Never though I would make it, but I have!!! I am confident you will too!! Cling to what gives you joy in life, and fight!!!!

 

Oh I am so sorry that this has happened to you my friend and that you feel so very low . What can anyone say that will help ?
I have had very severe tinnitus since last April after an infection and headphone use , as well as pain in my ears and jaw 24/7 . My ears just scream so badly that there is no masking it ,no sleep ,no life .My hearing was dulled a lot .
Add to this my extreme spinal arthritis , leg pain and depression and I really can empathise with you .Like you I have been very miserable and wanted to
die . I had a mental breakdown back in June .
However, it is now October and after having an MRI that told me i do not have a tumour or structural ear problems ,things are looking up !
I am now having some far better days and my T is actually stopping on some days ! I NEVER woukd have believed this could happen ! No way! I was utterly convinced i would soon be deaf .Thank goodness i did not act on my dark thoughts ! And i hope you will not either !
Honestly , you just never know how things might change for the better .
You are young and your body may well start to heal . There may be treatments come along soon.
I know it is very hard to do and i do not mean to be patronising but please try to focus on some small good things in life. It helps.
I am proof that things can change. I am starting to enjoy life again . My T may never go away completely but
I wantvto live again . I want to laugh ,love and travel again and I WILL ! And guess what ? So will you !
Please , do not do anything silly. Please talk to someone ,anyone about how you feel .
I am not very good at giving advice but please,you are young and the best is yet to come .One day at a time is all you can do .Hang in there.
Other folk on here are more experienced than I and may help you better but PM me if you need to talk I will give you my email address.
In my experience ( i am much older than you ) things are rarely as bad as you think .
Please try to carry on.Things are very likely to improve .
Have you had an MRI scan or other tests to rule out anything sinister?

 

Yeah it sucks when bad days happen. Bone conduction via ear plugs made things much worse for me back in the day. Found that out the hard way. But....guess what there are ways to use ear protection in some cases like driving. Most important is to do so short term and gradually start to get comfortable without the protection in that particular case.

And then you will experience the good day as you had hiking in nature.

You are young! So many your age have never had to deal with these issues so they don't get it.

Even in my age range over 40 it is the same situation.

Do you get any medical attention or medications to deal with your migraines?

Like everyone, or rather some, I was housebound for about a year. I couldn't even drive. I was afraid of every loud unexpected noise walking through a parking lot or grocery store.

Now things are different for me. And life is going well.

I think with the efforts of Tinnitus Talk and Tinnitus Hub the message about this is gaining more attention. This is a new organization that seems to represent more of the younger generations. It takes time for awareness of the seriousness for many of us to be heard because at the same time we try to exude being positive.

You often need to just get up and dust the dirt off your butt and keep moving forward after having a bad day or week.

Take care of you......

 

Hang in there. Hook up with @glynis if you can. This woman has been thru so much and is extremely strong willed. She can help guide you to a better tomorrow.

Wishing I could reach out and give you a big hug but this is the best we can do . Try not to stress about this too much. The stress and anxiety will suck up all your strength!! Stay strong and fight this fight with us!

 

@Starthrower

Thank you for your kind words.

What earplugs do you use for driving? I am ordering musicians earplugs this week for the first time, and wonder if they work for driving. Because of my migraines I absolutely do not have a choice regarding wearing earplugs while driving, at least on freeways (the loud noise alone will wreck my nervous system). March '15- January '16 I had zero problems using earplugs everywhere and could still drive on most roads without their use, and only in the past month have cars and wearing plugs in the cars become an issue.

Severe depression is quite hard to dust off from willpower alone as I am sure people suffering the condition have told you. I've been having it for 1.5 years now going on 2. I've had brief episodes of remission lasting a few days, but not that many. It's only a good day with few migraine or ear problems, or small moments where I am at peace with myself, where I am in a good place. At the most I may experience only 1 good day every week and a half. I certainly cherish those days, but it is difficult to have them now.

I have sought treatment for migraines in the past, and every single migraine med poisoned my body and made my nervous system even more dysfunctional, so I have stopped dealing with migraine specialists. I still continue to f0llow a strict diet and do other things; however, I don't believe I am even suffering from migraines at all but something else.

 

I hope you know that we care about you. Keep on fighting this with us.

 

Do you check your hearing regularly? (with phone apps for example)
If you are losing low frequencies progressively you could have otosclerosis. The good news is it can be diagnosed and in many cases fixed. The tinnitus part can also be fixed in about half of the cases.
Good luck.

 

@glynis

I'm sorry to hear you have also struggled with depression but I am also glad you have been able to heal through the hard times. It is a horrible disease to go through for anyone no matter what the experience is, and the sad part is is that many who haven't been down that road don't know how to respond. I am so happy you have been blessed with a supportive family, and especially, caring counselors and doctors.

My father has been very supportive through the whole thing, and pretty much the only person who has given me any hope that I may be cured one day, but I have lost many friends and even family members from the depression alone.

Where I live there is also no good psychiatric care unless one ends up in the hospital, which is essentially a sort of prison or zoo no matter how pristine the conditions are and how much care and concern the staff will have for you (and mentioning T and hearing issues will automatically get you the psychotic label). My current psychiatrist is a sexist ****, to say the least, so unfortunately my choices regarding professional help are limited. I've considered contacting my old counselor from college who was wonderfully supportive and understanding, and did cheer me up, so we'll see how that goes.
Because of all the bad neurological reactions I have had with drugs, I can no longer take any psychiatric medication and only rely on a small course of benzos to help me through panic attacks.

It was really sweet and thoughtful regardless of you to share your story, and it has made me feel just a little better today.

 

@GregCA

I don't have otoschlerosis, this is an inner ear problem or something neurological; I have been screened by 4 different ents and neuro-otologists. I do not use phones to check my hearing; not inaccurate enough. It's easy to tell from the environmental noise level. All the medical tests have little meaning in real life.

 

The first reply was about the best..... Keep HIKING

I have sensory integration problems (bad ) also.

I drive very little these days. I can get migraines. my cousins do too.
I hear ya on driving on freeways .....the loud noise alone wrecking your nervous system.

You're highly sensitive.. I know how that is. Your life will probably be pretty limited.

MINE IS TOO. get's damn lonely and depressing sometimes.

And only 22.


Take it Easy..


@fedup ..i feel for you too

 

Please we need something to fix this horrendous condition, people from health department please come to this forums and see how much we suffering .

 

Hi Coyotesheaven....

I certainly understand. Sometimes I found the earplugs while driving sort of kept the inside head noise up front. And then combined with the road noise it was very nerve racking. At that time I used a noise cancelling head set by Bose. I would not listen to music but turn on the noise cancelling aspect and the type that cup and cover the entire ear. I was still able to hear any type of siren signaling the need to slow down or pull over to the side of the road.

So maybe we can get the ability for you to enjoy or at least be able to drive - less of an issue for you?

Sort of trial and error for each individual at times. One step at a time. And driving is something that you enjoy and miss. That is surely workable.

It is so easy to lose our self-esteem with this condition especially when in a group of people or even with friends. Back then I just felt so less a person or something. They were all able to laugh and go out and have fun. And you are a lot younger than I was when I got intrusive tinnitus. For me going out wasn't as much of an issue.

Noise sensitivity is real. For example right now my neighbor is getting a new roof and holy crap it is so frightfully loud. I close the windows and shades and use my bose headset which works. I have learned over the past ten years or so how to adapt to things that happen.

And sometimes I also have panic attacks so I get that part. Hopefully you will be able to get in touch with the prior therapist you mentioned. I know how hard it is to find a mental professional who you feel safe with.

Take care and keep updating....

 

I am so sorry to hear of your suffering. I don't think that you should lose hope. Just keep plugging along. Eventually, someone will figure this out for you. I do think that your anxiety is making everything worse and is probably triggering more migraines and more symptoms. Klonopin is good in certain situations but it could also give you rebound anxiety which could make your situation worse. Have you had your hormone levels checked? Those could contribute to migraines. Did you get a lumbar puncture to check your CSF for autoimmune diseases?

 

@Coyotesheaven

I recall that you were tentatively given a diagnosis of Lyme disease but it turned out to be wrong. Any updates on potential diagnosis avenues?

 

@The Red Viper

Unfortunately no real leads. I am leaning toward fibromyalgia given that a lot of my problems are likely related to muscle tension, but then again it seems to be a brain problem like a chiari malformation. I get so many ear and neuro problems from straining, coughing, bending over, sudden jolt and shock waves to my neck area, as well as bone conducted bass noises). I think it may also be partially vascular related because I get 'migraines from blood vessel spasms', unfortunately near my ear, or at least that is how it appears...

All that I really know at this point is that it is not Lyme or TMJ, not a fistula of any sort, not a middle ear problem (unless the ossicles or muscles are out of whack), and not something scary like MS or a tumor. Everything else is up for grabs, even Meniere's disease at this point.
Mostly I am just starting to think that all the stress has simply messed my body up, that I have a neck injury or dangerous posture habits nobody has really noticed, or that my inner ears are simply battered and have stopped healing. I also do not exercise as much as I used to and spend most of the day sitting at the computer because it's one of the only ways to avoid triggers and get away from my depression; sitting is pretty bad for one's health apparently.
I've kinda started to give up on getting a diagnosis as I believe medical science doesn't understand what is going on with me. I mean I've just been to so many doctors and it's been fruitless every single time.

 

Damn dude, I'm sorry for you man.

 

@Jkph75

Hormones are fine. I have a lot of anxiety but have a much better handle on it than I did before. The depression has gotten somewhat better, but realistically my heart and spirit are being burned to the ground, so that will not go away.

No lumbar puncture yet (and I would do that for CSF pressure not autoimmune diseases). I'm afraid that will do more damage to my hearing and nervous system frankly, especially if I have something going on with my inner ear fluid.

 

I'm sorry for you and of course myself. We just want to be positive because we don't have another choose. we really trying to be positive and enjoying from our lifes. But we don't know what maybe happened. it's not stable. It's unstable.
maybe we accept it, but it doesn't accept us. It changes (I hope it changes in positive direction)

Last night I had very crazy headache and my T was in the end. Half of my brain was sounding. and I just was thinking is possible worse than this?
I think the life is ridiculous. Every thing is joint to a threat.Last year my life was normal, I had very wishes. I wanted to travel to Canada for my job. I have been improving my English every day. I have worked very much and this year is over. now my life is in winter. It's snowing.
I still think die is a solution. But I have another opinion too. I think I'm in the the darkness and this is end of the path. Just I say whatever is comming just come. It doesn't matter anymore. But still I have been enjoying form my nescafe every day. I enjoy from reading books and other things. So life is moving. I think this is real.

 

@Coyotesheaven

What information do you have on lumbar punctures? I am supposed to have one but am afraid it will make things worse.

 

@Jkph75

Mayo clinic sums up the risks pretty well:

http://www.mayoclinic.org/tests-procedures/lumbar-puncture/basics/risks/prc-20012679

I don't know a lot about spinal taps. I would think headache is the most likely outcome. My friend had some done many years ago and she was pretty much out for a few days because of the headache, but she also found relief because her CSF pressure was doubly what it should have been.

The reason I say ear danger is because the CSF pressure is directly related to perilymph pressure in the inner ear:

http://www.dizziness-and-balance.com/anatomy/ear/endolymphatic-sac.htm

Going from that, if the lumbar puncture were to alter CSF pressure, which it can, it could also alter the fluid pressure in your inner ear, potentially leading to transient or permanent changes and or Meniere's like symptoms. This is not a common complication from what I have (briefly) read, however, so keep that in mind. Glynis also said the procedure went well for her (above) so that should give you some relief.

I think though that given your symptoms as you have told them to me, a lumbar puncture would be a good idea, so you need to weigh the risks vs the benefits on your own judgment. Why in particular, are you getting the procedure done?

 

Hello I just wanted to drop in to give you an E-hug...hang in there my friend, and please don't ever give up. I know the pain you must be feeling and I know some days seem darker than others but know that we are all here and we know that you will beat this. Life is hard and being only 22 it seems like a long road ahead, but have no fear it is also a path full of love, joy, happiness, and moments of clarity.

I hope you find some peace from the hell you are living through, and soon. But until then know that my thoughts are with you. <3

 

@Coyotesheaven

Getting lp to check for MS or other autoimmune markers. I think that I most likely have Hydrops, so I am concerned that the lp could make my situation worse.

 

I was 23 when my hyperacusis developed, which was the beginning of a cascade of additional symptoms not unlike your own. I'm so sorry you're going through this. It is certainly a nightmare from hell.

 

@Jkph75

Hmm, that's a rather dramatic test to look for those things, but I guess it is probably worth it. By the way, did they check your MRI for something called a chiari malformation? That's my new pursuit right now, and a lot of doctors forget to look for that on an MRI or don't consider it (I think they did this to me).
It can remain hidden for years until you have some kind of head or neck trauma, and then it can start to affect one's nervous system health in a pretty serious way.