Close To The Edge Again

Hello all,

Though I've never posted, I was a frequent visitor last year after I was diagnosed with Meniere's Disease. As a long term anxiety sufferer before this condition, I was completely devastated. I saw multiple ENTs, allergists, acupuncturists, psychdocs. and I lost 20 lbs in 6 weeks and had a 5 day period where I didn't sleep at all. As a result, I was put on a whirlwind of medication (including antidepressants/antipsychotics/etc.) and the more I read online, the more doctor's I saw, the hotter it got, the more stress I saw on my boyfriend's face, the further I sank. In July last year I tried to kill myself on a trip I planned specifically to do so. I was sure this condition was going to kill me slowly and I felt absolutely insane - I hated waking up, I could barely work, I was a zombie. I had divine intervention in the form of two hikers that interrupted me in the middle of the woods. I came back home disappointed and even more angry.

When I went back to my specialist, a test proved that my hearing has come back to normal in the affected (right) ear. Throughout the rest of the summer and early fall the T was still very bothersome. By this time I was down to one antidepressant and had discussed the July trip with my doctors. I felt like I was being responsible with these feelings, as opposed to isolating myself. Surprisingly through fall and winter I started to notice my T not bothering me as much. I actually started laughing and enjoying time with others as opposed to being consumed by the sounds and sensations. My fear of going to bed was no longer there, my excessive use of floor fans and white noise machines diminished and I felt I was on the path to habituation. I definitely knew I wasn't near there yet.

In late February I started experiencing severe chest pains after exertion and went to see my pdoc. She sent me for some tests, and longer story slightly shorter, I had some not-good results. Over the course of the next 6-8 weeks I was shuffled around cardiologists and such. At the age of 38, the previous 15 months had sucked. The buildup of all of this resulted in Klonopin (something I had experience with before) and took I it for about 6 weeks, twice daily - I knew it was too much. So I started a taper with my doc and now...

...this is where I'm at. After 6 months of slow but positive adjustments, I would argue that my T is worse than before. I moves around my head, the fans and white noise machines seem less effective and I'm a wreck. I feel immense guilt/regret/anger over having taken these benzos and now I'm in this looping train of thought, that irreparable damage has been done. I have had marginal knowledge of T and benzo issues, but the more I read now, the more concerned I grow. While I've been a wreck this past week, last night was the first night of zero sleep. I know that doesn't help. Previously the T was a somewhat consistent tone from the center of my head. Now it feels like its moving in my head and changes constantly in volume (like waves). Ugh.

Reading this all now, it seems like a lot. I hope people don't speak up because of this story and I would love to hear some encouragement and factual information on what I am experiencing. I need some support through what I hope is just another bump towards peace with T.

s

 

I guess I could have used a better thread title now that I look at it on the board. I'm not where I was last year as I'm taking better steps to take care of myself.

s

 

I am in severe tolerance withdrawal from benzos prescribed for tinnitus. I can relate.

 

This is the kind of post that makes me angry at the people on this site. You came here hoping to get some relation and assurance but only one person has replied.

I am truly and deeply sorry for what you have been going through, Sleep. I couldn't imagine being in your shoes. But like a lot of the stuff I have read on this site, you will get used to it. People have said that they have talked to old people that can barely hear anymore except for their T, but they still manage. I know that doesn't do anything for you in this moment, but I don't see why the same can't happen for you.

 

I'm sorry that you're going through this. You sound like me -- trying to see the positive side of things, but it's so hard after a relentless and exhausting bout with sleeplessness and health scares. It's completely understandable that you took klonipin, as I did. But, yes, in the long run benzos don't really help at the level of help we want. I think that the pain of our experience is feeling isolated in our heads with this noise that no one else can hear. I also think that the only hope for now is not trying to listen for all the sounds and changes. To try to let them be. That's hard. I get very angry and scared and finally yell out, but the times of ease are definitely associated with not hoping the sounds are better and not listening for that improvement. That just ends up in frustration and sorrow many times. When there's a significant change, it's very hard not to be extremely disappointed and even devastated. It takes a lot of strength to accept these noises, and I, too, have gotten very close to suicide. I fall into thinking of the noises as purposefully trying to drive me crazy. This is an opportunity to become stronger. Can you imagine being so strong and free that these noises don't significantly bother us? Before I end my life, I'd like to try to be that strong and free.

 

Thanks for your words RichardRR and Kah Povi. I really did need some connection from the board the day I posted this and I didn't come back after a day or two. I've had so many low points this past 18 months and getting through them has been extremely difficult. I did make some great strides in habituation throughout the winter and I think this is why it coming back so strongly was devastating. Having a long history of anxiety/depression beforehand has definitely amplified these ups and downs.

Realizing I was previously habituating does give me hope. Having made it to the other side of 2014 when I thought there was no way for me to escape it alive, makes me realize I do have strength. These realizations mean nothing to me at 3am when I'm deep in panic. I know I have options to pull myself out of panic, but they are hard to reach for in such a state. Some days I will fantasize about quiet; sometimes it involves an overnight miracle, a sudden scientific breakthrough, total habituation and sometimes suicide. These all seem equally unrealistic to me and so I'll just go back to the nervousness and it colors my day. I do have a few options: mindfulness and exercise, communicating to others, general self care and these I need to work on.

Thanks again, coming back here and seeing your responses really meant a lot to me. Feeling like I was even too messy for a tinnitus support group really made me feel terrible. xo s

 

Hi @Sleep i am praying for you. Hang in there and just make it day by day and I'm sure you will get better.

 

I'm sorry you're going through this. Benzo withdrawal can be terrible, and I'm sure it's making things worse. Many / most people who withdraw from benzos do eventually feel better, but it can take quite a while. Try to hang in there, I know it's hard, it took me years to get off benzos.

 

Hi, @Sleep: I feel for you. I also have ongoing problems with insomnia (had it before tinnitus, but T made it worse). And the onset of tinnitus sparked rolling panic attacks for me, even though I had no prior history of an anxiety disorder. It was misery.

My opinion may be different from others: I am not sure if the klonopin withdrawal is behind what you are experiencing now. Six weeks is not a long time to be on a benzo and you did do a taper, although not sure what dosage you were on. What does your doctor say? You can read a lot of benzo scare stuff online that's not helpful and probably doesn't apply to most people. Everyone reacts differently to these drugs. And you, wisely, are using them under the supervision of a proper medical professional. Tinnitus symptoms can come and go, regardless of what medications you are taking. So I would try to stop beating myself up about taking benzos. There is no proof it caused your new tinnitus symptoms.

One thing I did notice: You seem (again just my opinion) to be in that terrible cycle of catastrophic thinking. That's fuel for anxiety and panic's fire. You might benefit from cognitive behavioral therapy (CBT) to help reroute your thoughts. It worked wonders for me -- but again, user experience will vary, as it always does with these things.

Wishing you better days ahead.

 

Thanks all. I was away for a bit but it's nice to see your responses. I'm trying not to beat myself up about the benzos, in retrospect I feel like I allowed myself to fall back in the easy fix for 6 weeks instead of staying the course. I did my doctor in the interim and he said it could be the benzos, but didn't put too much behind it.

since I have Ménière's he is more concerned that the ringing is now coming from the other ear. Not so much that he put me back on a water pill, but he does want me to reduce salt and eliminate caffeine again. He seemed confident that it should quiet down once again, but who knows. He was MOST concerned about my anxiety and thinks that is the thing I need to work on. I'm just hoping its a spike.

@LadyDi your last paragraph really hit me as I do spin out in a lot of areas of my life, this clearly being #1. I have been working with a CBT therapist for quite some and she is amazing, but I have yet to lose this catastrophic thinking when I'm in the midst of it. My
Otolyngarigist, my therapist and even my allergist thinks that ultimately a breakthrough with anxiety will alleviate a lot in my life. I'm hoping these trials like @Kah Povi mentioned will help me get there.

Also: my T has been terrible the last 48 hours but I'm taking one moment at a time.