So Sad and Hopeless : Update

Hi all my TT friends. You have been so supportive and kind and I wish I could come here and say that I’m doing much better, but unfortunately, that isn’t the case.

My tinnitus while still variable has become more severe on bad days. Mild days are not as mild and on bad days the high piercing hiss can be so loud and very sharp it’s painful. And most discouraging, my hyperacusis has increased where everyday sounds are becoming too loud and irritating.

I’m not sure why it’s worse, except that I took the Clonazepam and now am off the medication. Maybe it has made it permanently worse, now.
I don’t know.
I’m feeling more hopeless and despairing then when I first posted asking for support.
To be very frank, I’m not sure how much more I can take and if I can keep going. The pain is too much.

I actually have been doing many things lately to feel better. Seeing friends, going to a support meeting (which ended up being painful since voices were too loud and it was a far drive) looking into CBT therapy, acupuncture, etc. I was even contemplating seeing a few clients.

But the worsening of tinnitus and hyperacusis has left me in more pain and feeling like giving up. It’s been 4 months and my life is completely falling apart.
I have a small savings and it’s depleting slowly.
Much of my medical care I have to pay for. The hearing aids unfortunately didn’t work so I will be returning them. I’ve considering seeing another ENT, or a neurologist or possibly a psychiatrist.

I’m so sorry everyone that I’m doing not doing better. I’m really really scared because I don’t know that I can keep going with this pain and with watching my whole self and life be taken away.

I feel outside of time, outside of life.

I think all of you know how much I love my beloved cat Riley. She’s my animal soul mate. Yet, lately I’ve been thinking I might not be able to care for her anymore. I might have to give her up. That is how devastated I am feeling. And that will break my heart and rupture my soul

I apologize for how dark this is.
I’m in so much pain and don’t know where to go.

 

I'm sorry Tracy. I'm so sorry. I hope things get better for you soon.

 

Hi Tracy,
You have done great getting off the benzo's so well done!
When come off meds our signals can missfire and tinnitus gets wild.
I would pop in see your doctor and see what he can do for you.
I was lucky that Nortryptaline stopped my head tinnitus but not my ears as that was due to Menieres.
Keep relaxing music on and your tinnitus should calm down as your brain adjusts with out the medication.
So proud of you finishing your taper as I remember how worried you were.
I hope your sleeping ok and keep posting for support getting through this tough time.
love glynis

 

Please check your pm Tracy x
@TracyJS

 

@glynis
Thank you, Glynis.

 

@New Guy
Thank you

 

Why do you feel this way? Can't you provide food and water and clean the litter box?

 

Please don’t go into the Counselling Profession Bill!
@Bill Bauer

 

@TracyJS
You've made a huge step in discontinuing the clonazepam. There may be someone on the forum who has tapered successfully as you have done and may be able to shed some light on what to expect in the period that follows, and perhaps help put your mind at ease, and, as suggested above, a check-in with your PCP. Regardless, the fact that you're off it now is one huge stressor that is behind you. I'm so sorry you're in this dark place right now. Here's hoping for a better day tomorrow! Please keep us posted -- there are people here who care about you!

Mystery Reader

 

Hi Tracey,

I'm seven'ish months in and am similarly despairing, desperate. My life's fallen apart big time and i feel tortured 24/7. I have zero positive to offer you regards T. It's hell on earth. But don't even dream of getting rid of your cat if it's your 'animal soul mate'. If your situation is as bad as you paint it then 'getting rid' of something so dear to you would surely be too much to bear?

Personally losing my dog now would be the end. Walking him each day is my only normality and keeps me going. Giving joy to something else is a powerful thing. And maybe with this T recovery journey it starts with something simple like a dog or cat and then when we feel more empowered maybe we branch out. I don't know. Just a thought.
I'm still very suicidal and depressed but i hold on to my love for my furry boy in this dreadful storm.

Nobody on earth should be having to endure this nightmare. You've done well to survive 4 months and still be functioning, engaging with people, trying to get better etc.

 

Hi Tracy, no need to apologise. I’m not an expert on benzos but I’ve read many times that whilst tapering off them our perception can increase. This, however, shouldn’t be permanent and the Clonazepam shouldn’t have caused any damage to your ears.

It’s a hideous vicious cycle that plays on our emotions. The worse we feel the worse T becomes. And obviously when our T feels worse our emotions become more and more desperate which further exacerbates the problem.

Everyone here right now is sending you a massive virtual hug. You are not fighting this alone.

 

So sorry to hear this, Tracy.Riley needs you and you need her. Please don't make any hasty decisions just yet. I agree with @Ed209, the Clonazepam tapering can increase the perception of the tinnitus, along with the anxiety.

You have all of us, we will be here to support you.

 

Sorry that your T & H has worsened due to getting off benzo drug. The withdrawal symptoms should fade over time. I agree with others not to give up your soul-mate pet Riley. People with PTSD have been known to be advised to take on a pet to help them. So a pet and the caring or enjoying of it can help us calm our emotions and to focus on the task of caring or enjoying the pet. One thing I noticed during my darkest days is the loss of interest on things and one become withdrawn from friends. When home bound, to have a pet to occupy time and to focus our attention away from T is good and essential for our healing. So try your best to keep the pet with you. Your T & H are still relatively new. Give it time as set backs or spikes are all too common on the road of recovery. It is best to mentally prepare for this and don't worry about day to day fluctuation of T (which is known to be unpredictable) or what it is doing currently. In a year of two, you probably don't have your H any more and will harden to the T ringing. No one knows for sure but the odd of getting better overtime is good. Take care. God bless.

 

@Mystery Reader
Thank you so much for your support and encouragement and reminding me that there are people who care.
I need that more than you could know.

 

Thank you, @Ed209. A virtual hug feels really good right now. Thank you for making me feel less alone in all of this.
I am hoping you are right about the Clonazepam.

 

@Bam
I’m so sorry that you are also suffering so much with this and are feeling so despairing and so tormented.
It’s so hard to lose so much in your life due this horrible thing.
I’m so glad you have your dog. I can hear how much you love him and how having him to take care of helps you hold on.
I will do my best to hold on to Riley.
Thank you so much for responding to my sadness and pain given how difficult things are for you and how much pain you are in right now.
I hope for relief for both of us.

 

@emmalee
Thank you Emma, so much for reminding me that I’m not as alone as I feel
I won’t make any hasty decisions about Riley.
I just sometimes feel like a bad mommy. I know all of this affects me and she can feel that.

 

@billie48
Thank you for the much needed encouragement.
Yes, having a animal loved one is very therapeutic and helpful in healing. And Riley is such a love.
It’s hard to imagine at times that things will ultimately get better. This has hit my life so hard. And the pain sometimes is too much.
I will try to hold on to your words of support

 

((@TracyJS)) I understand. I remember writing years ago that I felt like this giant glass dome surrounded me and I could see the outside world going on and about usual life and I was unable to "feel" a part of it. It was lonely and so very isolating. I tried and tried to be a part of the "outside". I would often find myself back in my closet rocking back and forth. Back and forth. It was dark and there was little outside noise.

I was not trapped by not having funds for medical help. And believe me I tried so many different things and therapists. This was back in 2002 to about 2003. I lost so much weight because of the constant noise stress and my hair began falling out.

It is so hard to write about those days. But I was there. And now...I am doing okay living life as best as possible. I go without many normal activities like concerts and dinners out during the busy hours. I have not been to the movies still to this day. I really don't mind giving up that stuff now.

My hair grew back even now longer than before! I can drive my truck again. I can go into the market without shaking and running out. I can list the things I can do that are so ordinary to most people that have not been house bound for a year.

What do you think would be the first thing that would help you right now? A doctor/psychologist/therapist? A medication that could help? You should never have to be suffering Tracy.

I am so sorry you are "here" in that place. I know what it is about. All I can offer is that I made it through to this day for various reasons.

You have something so very special in your soul. Let's work it out here in your thread. And never be sorry.

 

@Starthrower
I am so moved by what you wrote to me. Your description of what it was like for you when you felt removed from the outside world and were in so much pain so exactly captures how I am feeling. What a dark time. It’s very generous and kind of you to share your story with me.

I am so glad you made it through and are here today living life in the best ways you can, like driving your truck again! You offer hope. A precious thing.

“Hope is a dangerous thing.”
“No, Hope is the best of things”

I have to admit: I am not by nature a hopeful person. Too much trauma too early, I’m afraid.

I’m not sure what would help right now. I am hoping to possibly start some CBT/hypnotherapy soon. In terms of medication, there so much fear around something making the tinnitus worse. I hate that so much!

“You should never have to be suffering, Tracy” Thank you, Star. ❤️

I can see you (and many of the others who have responded)have something special in your (their)soul(s) too.

Ok, let’s try to work it out here.

 

You need to wait a little you are very new to this. I had T since September, it was loud initially but around the second month it got very quiet (mild). If you keep stressing over it and seeking ENTs you have a chance of making it worse. I was stressing over it when I had it mild and managed to screw it up and make it worse. My ENT wanted me to do all the ear tests possible. I did the caloric test (ear syringing), where water is blasted into your ear drum, this caused my T to go severely high and I also developed T on my right ear (gone now) and Severe H. I also have mild-moderate hearing loss after that incident. I haven't gotten any better since then and I stopped seeing my stupid ENT and decided not to mess around my ears no more. I hardly sleep anymore and I am far worse now then during the onset, this is all because I couldn't leave it alone. If your ENT wants you to do ear tests just walk out, you are risking it and can make it worse. Trust me you dont know how bad this s**t can get.

 

@dpdx
I’m so sorry tinnitus worsened after having those tests. I agree about maybe letting things rest some more.
I do have some mild hearing lost at high frequencies and my tinnitus is in both ears.
It started out more mild at onset, but has progressed since then.
I hope things will get a bit better for you soon.

 

I hope so too.

 

@TracyJS my life was saved from the severity of my tinnitus case. Nothing I could do would help until I was able to get a grip on that. It was my first step and I spoke with many doctors and researched taking an anxiety medication specifically mentioned by the ATA's late founder Jack Veron. A wonderful man I met personally and he gifted me one of his hand made totem poles. Xanax carefully monitored by my doctors was my first step. I had no other choice back then.

And if I had listened and been frightened by the stories - I know it was not good for some - but you don't hear about the people this saved because they rarely speak out due to being labeled a benzo head or whatever. So many of the successes remain silent.

Then I proceeded to biofeedback - hypnosis - meditation methods which really helped me cope. It is a long story.

That was my first few steps toward being able to function outside the glass dome.

How are you today?

 

@Starthrower
I’m not so good today, Star. Thank you for asking. Tinnitus is very loud and piercing and it hurts.

I did take Clonazepam intermittently for 3 weeks and then continually for a week, but then tapered for about 5-6 weeks because I got so scared it would ultimately make the tinnitus worse.
I just recently did that.

Yes, the stories you hear about how awful Benzos are made me so afraid to continue with the medication.
It’s made me afraid to try any medication.

It sounds like Xanax really helped you and you were able to discontinue without making things worse for you?

 

Yes a low dose for several years. I never had tolerance or increased the dosage. I was able to taper of slowly without any problems. This isn't meant to discount the "horror" stories. This is a side no one hears anymore.

The xanax lessened the effect of the metal screeching brakes that left me home bound. And it was then that I started getting my life back.

Talk or find a doctor and take the information with you. Jack Veron first wrote about it years ago but then others did studies and found it to be true only to be debunked by various scientific studies.

It is a personal choice. And lucky my doctor worked with me every week.

 

@Starthrower
It is a difficult decision.

There is so much out there against taking medication, particularly Benzos because of fear of tolerance, dependency, and withdrawal making tinnitus ultimately worse.

What did you mean only to be debunked by scientific studies? The effectiveness of Xanax?

I’m so glad xanax helped you survive and take the steps to get your life back. And that you had a good doctor who would work with you.

 

Yes I lost the link to the study the problem was the study was not double blinded. But if basically stated it helped people with tinnitus. That was a long time ago though.

It is a difficult decision because I had the same issue. And it may not be what you want or need to do. My problem was the extreme effects of anxiety more so than depression. The ADs in my opinion posed different problems health wise.

I really don't like to discuss it because I understand the different opinions on this. But had I not chosen that path I would not be alive today. Every tinnitus/hyperacusis person is different also. And you would be surprised the number of people who also used the xanax in the early stages but will never state it in public.

Some people just abuse medications like this. Some do reach a tolerance level. And some do not. I don't drink and eat healthy and I am an avid morning runner.

I don't know Tracy...it was just my experience. But if you are not ridden with anxiety and more depressed the AD route would be another choice. I am not familiar with those medications.

And maybe just the counseling will be effective? CBT or hypnosis. I loved hypnosis myself. It was a very interesting experience. And it still helps me when I need it.

 

@Starthrower
Thank you, Star for sharing with me your experience.

I can understand why you don’t like to talk about it, since so many others are very opposed, perhaps from their own experience, to these kinds of medications.

And I understand that you can only speak to the decision that you made what was right for you.

Anxiety is definitely a huge problem for me. It’s why I took the Clonazepam. You say if you hadn’t taken the medication you wouldn’t be here.

I have thought about that for myself. If it comes down to continuing to be here or medication, seems like medication would be better.

 

@TracyJS how are you feeling now?

I haven't read this entire thread so feel free to write if I missed something. I think I remember you could no longer afford the psychologist who prescribed the medication? And you could not find help from any other source?
Is there a possibility you could call the psychologist and ask for a discounted rate or for a referral? Or did he/she not really help?

I remember being so distraught and alone seeking help from different therapists who actually did me more harm than good. I kept persisting. I got so tired of telling my story over and over each time I decided to write it out and give it to the next therapist who I would interview first. It is expensive.

Just wanted to check in on you....