Any More Positive Stories?

[Marie79]

Week 13 I think. In the past 2 weeks my panic has gone down a bit and there are longer periods of time I don't think about tinnitus.. Especially during the day... but sleep is SOOOO hard. It's so hard to mask at night so I will be honest... I drink myself to sleep and then at about 5 am if I wake up I might take 1/2 a Xanax. I'm so scared to try something new.

All that is in addition to me having to wear big headphones or wrap around soft headphones (not ear buds) with pink noise. For some reason even if that is on a machine next to my bed or on a speaker pillow the T comes through at night.

I'm just always second guessing how I am coping. I hear you are not supposed to use any headphones and then you are supposed to keep your masking low. Then the wine. I just want to be able to see a light at the end of the tunnel. Or is this my new life?

From about 7pm-10 pm is very hard because I can hear it just being in my bedroom and I get panicky. Last night at 8 I jumped on my exercise bike and that helped me avoid a panic attack and at least kept me from as much wine. That was good. It's just all baby steps but I'm so afraid of a set back.

It was unbearable before (the panic and anxiety) and now with my stupid regimine it's just bearable.

I love those success stories that people say the tinnitus is no big deal now but sometimes I end up reading about people who never habituated and it terrifies me.

 

[Boy Helios]

the best success story is when the T goes away. You should aim high.

I am an example of someone whose T went away 99.5%.

I had severe raging T in both ears.

T due to ETD is entirely curable. T due to hair cell damage is harder, but if you catch it early you can recover IMO.

 

[JasonP]

I have had almost 3 years straight of tinnitus bothering me and had to use my maskers almost every day. About a quarter of the time I could get really depressed about it and I mean really depressed. I think part of it was due to long term klonopin use. Right now I have been taking a drug called Lamictal which has REALLY helped with my depression about it and seems to have reduced the ringing maybe 15 to 20% (most of the loudness I had after long term klonopin use) and now that I have been up to a therapeutic level, there are days when I tune it out or don't check in on it and think about a whole lot of other things like, oh my goodness, I wasted 3 years of my life thinking about this crap. In fact there was 2 times in the past week where I tried to listen to my tinnitus when ambient noise was there and I was with family and couldn't make it out. DIDN'T HAPPEN BEFORE IN THE PAST 3 YEARS! I had to go to a quiet place to see if it was still there! I was waiting at the doctor's office yesterday and it was kind of quiet and I said hmm...I'm going to check in on my tinnitus and I was like oh yeah there it is...whatever, no big deal, moved on, thought about other things, and tuned it out. Hearing aids definitely have helped to so it is a combo. My doctor gave me some Trileptal and hinted that maybe some time in the future this might be able to reduce my Klonopin use or replace it. She said she prescribed it off label instead of benzodiazipines like xanax or klonopin and it has helped some people with anxiety. Some people have said it has lowered there tinnitus while others it did not. I guess I will see what happens. I need to also say I prayed back in December for God to help me out so by God's mercy and grace I am doing better. I hope I continue to receive mercy and grace!!

 

[Owen]

@Marie79 Just a thought, but alcohol can swell nasal linings and thicken mucus, making drainage from any sort of ear infection more difficult. Have you had any sort of medical confirmation of on-going ET problems?

 

[JasonP]

Week 13 I think. In the past 2 weeks my panic has gone down a bit and there are longer periods of time I don't think about tinnitus.. Especially during the day... but sleep is SOOOO hard. It's so hard to mask at night so I will be honest... I drink myself to sleep and then at about 5 am if I wake up I might take 1/2 a Xanax. I'm so scared to try something new.

All that is in addition to me having to wear big headphones or wrap around soft headphones (not ear buds) with pink noise. For some reason even if that is on a machine next to my bed or on a speaker pillow the T comes through at night.

I'm just always second guessing how I am coping. I hear you are not supposed to use any headphones and then you are supposed to keep your masking low. Then the wine. I just want to be able to see a light at the end of the tunnel. Or is this my new life?

From about 7pm-10 pm is very hard because I can hear it just being in my bedroom and I get panicky. Last night at 8 I jumped on my exercise bike and that helped me avoid a panic attack and at least kept me from as much wine. That was good. It's just all baby steps but I'm so afraid of a set back.

It was unbearable before (the panic and anxiety) and now with my stupid regimine it's just bearable.

I love those success stories that people say the tinnitus is no big deal now but sometimes I end up reading about people who never habituated and it terrifies me.

Hey, I wanted to tell you why I had trouble habituating before. I had depression and anxiety issues and mood swings way before T and I wasn't treating the depression and mood swings right. That is a big reason why I didn't habituate to on a consistent basis. Now that I am taking the a medication that is a mood stabilizer and has anti depressant effect, it has been WAY easier, thank God. Hopefully, this will continue.

 

[Marie79]

Hey, I wanted to tell you why I had trouble habituating before. I had depression and anxiety issues and mood swings way before T and I wasn't treating the depression and mood swings right. That is a big reason why I didn't habituate to on a consistent basis. Now that I am taking the a medication that is a mood stabilizer and has anti depressant effect, it has been WAY easier, thank God. Hopefully, this will continue.

I am so glad this has worked for you! Were you ever worried the medication (not benzo's) could increase T?

 

[daniel1111]

@Marie79 - I went through the worst times of T. The full cycle of depression, suicidal thoughts (and having to hide my kitchen knives "just in case", etc etc etc. Thinking that life was over, how would I be able to commit to a relationship while having this problem that others would think is pathetic. I thought life was over.

It wasn't that long ago either, I got T in december. I still have T, I don't think it's going away, but I also don't think or hope for it to go away. I've habituated to it. To be honest, if there was a full cure for it I probably wouldn't even ask for it.

When I hear it, I don't care. I do think about it sometimes, but it doesn't impact my life anymore, apart from knowing when to be careful around loud noises.

Not sure what you want to hear, but that's my basic positive story.

 

[Marie79]

@Marie79 - I went through the worst times of T. The full cycle of depression, suicidal thoughts (and having to hide my kitchen knives "just in case", etc etc etc. Thinking that life was over, how would I be able to commit to a relationship while having this problem that others would think is pathetic. I thought life was over.

It wasn't that long ago either, I got T in december. I still have T, I don't think it's going away, but I also don't think or hope for it to go away. I've habituated to it. To be honest, if there was a full cure for it I probably wouldn't even ask for it.

When I hear it, I don't care. I do think about it sometimes, but it doesn't impact my life anymore, apart from knowing when to be careful around loud noises.

Not sure what you want to hear, but that's my basic positive story.

That is amazing! Did you have a hard time sleeping in the beginning? How did you get to sleep?

 

[daniel1111]

That is amazing! Did you have a hard time sleeping in the beginning? How did you get to sleep?

Sleeping was the WORST.

I put my fan on which isn't a normal desk fan, it's quite big and LOUD. I slept right near it, but whichever ear was in the pillow was screaming. So I ALSO played white noise on my phone, and placed my head uncomfortably on the pilloy in such a way that only my head/half of face was on it (i'm a side sleeper), and that the ear was not actually on the pillow, so it could hear the white noise properly.

On the worst days, T still creeped up above those. All I wanted was to drink, and did that a lot. The problem was that alcohol makes T worse.

I can't remember everything specifically now, but I did manage to get to sleep most times, but it took a lot longer and it was very frustrating. I didn't have benzos and wouldn't like to rely on them anyway, but I had melatonin and it didn't seem to help.

 

[Marie79]

Sleeping was the WORST.

I put my fan on which isn't a normal desk fan, it's quite big and LOUD. I slept right near it, but whichever ear was in the pillow was screaming. So I ALSO played white noise on my phone, and placed my head uncomfortably on the pilloy in such a way that only my head/half of face was on it (i'm a side sleeper), and that the ear was not actually on the pillow, so it could hear the white noise properly.

On the worst days, T still creeped up above those. All I wanted was to drink, and did that a lot. The problem was that alcohol makes T worse.

I can't remember everything specifically now, but I did manage to get to sleep most times, but it took a lot longer and it was very frustrating. I didn't have benzos and wouldn't like to rely on them anyway, but I had melatonin and it didn't seem to help.

but now you are ok? you can sleep no problem?

 

[daniel1111]

but now you are ok? you can sleep no problem?

As well as I've ever been able to. I've always been a bad sleeper, I have to go very late, and even then there's basically no chance of me sleeping before 1 hour in bed. T made that a lot worse, 3-5 hours until sleep or none at all.

I'm back to where I was in that regard.

The hardest thing for me was bouncing back from that mini depression. The first 6 weeks of my T felt like 6 months of deep depression. And it was a long recovery period getting back on track.

 

[Marie79]

As well as I've ever been able to. I've always been a bad sleeper, I have to go very late, and even then there's basically no chance of me sleeping before 1 hour in bed. T made that a lot worse, 3-5 hours until sleep or none at all.

I'm back to where I was in that regard.

The hardest thing for me was bouncing back from that mini depression. The first 6 weeks of my T felt like 6 months of deep depression. And it was a long recovery period getting back on track.

thank you thank you!!
It's just amazing to me the success stories. How can something so terrible end up ok? It's crazy. Your story is a HUGE relief for me.

 

[daniel1111]

thank you thank you!!
It's just amazing to me the success stories. How can something so terrible end up ok? It's crazy. Your story is a HUGE relief for me.

I think I just managed to do all the right things. I worked out quite early on what was good, and sometimes that meant putting myself in difficution situations instead of hiding from them.

I'm really happy to provide you releif, feel free to ask me anytime if you'd like to know anything else. I have complete sympathy for your situation.

While it doesn't bother me, I try to come back here as much as I can to post now and then helping people. It's more difficult now I'm not atually a sufferer, but this place helped me so much when I needed it.

 

[JasonP]

I am so glad this has worked for you! Were you ever worried the medication (not benzo's) could increase T?

At first I thought there could be a possibility it might increase but I was thinking it would stay the same. If it increased some, I thought as long as I got my hearing aids with maskers and it helps with depression I might be okay. Well, I was pleasantly surprised when it took some of the volume off. So far so good. Once I got up to 150mg it seems to have consistently be less louder tinnitus. I would say it has been that way for around a week and half now. I hope it continues. A counselor once told me if you have a thought going around in a loop in your head it was a "chemical imbalance" in the brain. That was probably 14 years ago and was the jargon used. In my opinion, it is the brain is not operating well which could be due to all kinds of different reasons such as hormones, brain damage, neurons overexcited, or whatever (I'm not really a scientist so I am sure there is WAY more to it). I believe in your case part of the problem is you are in a "fight or flight" mode from tinnitus. You are trying to fight tinnitus but can't win and you can't run from tinnitus so your body has probably pumped out adrenaline and other hormones to make you anxious and other things to make you depressed. Sometimes, (I think) people need to chemically interrupt the process to help people calm down and ease their depression. In this case a physical thing like hearing aids can really help. If the body and brain are functioning well and you feel good then you might "hear" the tinnitus but then you start thinking "hmm...that isn't really a big deal because it doesn't bother me". Then in an ideal situation, the brain will not consider it a threat anymore and stop focusing on it and it will calm down a little bit and not seem so loud. In addition, when your brain does not perceive it as a "threat", you can calm down and think about other things much more and your brain can "tune out" the tinnitus so you don't even notice it. Kind of like you wearing clothes. You don't usually concentrate on the way a comfortable shirt feels on your body (even though its there) and don't "feel it" unless you focus on it. You think oh well no big deal and start thinking on more important things. Of course I can't tell you that you should take medicine or which ones to take but I will warn about long term benzodiazapine use. I feel like I have wasted years of my life being on that long term. I am hoping I can come off. Withdrawal can be a big problem with "benzos". If you still are bothered after a few weeks maybe you could go to a doctor and tell him you are still very anxious and depressed. Hopefully though it won't get to that point but just remember in the back of your mind it is somewhat of a safety net. They gave me an SSRI a long time ago and I became apathetic and I told them I felt bad and then they upped my med and later I found out that the med was causing the apathy so I actually needed less!! (SSRI apathy syndrome) In my case though I don't think SSRI's were right for me. Also, regarding medication, I needed something BEFORE tinnitus because I had bad depression way before tinnitus. With any drug it can be a gamble because you don't know how it will affect you personally. Another option is to go to a holistic doctor and see if there is anything he can do. I will say I was fortunate that my medicine did not increase my tinnitus (at least not yet) but I have heard of others that took medicine that did Please be careful and I wish you the best.


Also, I just remembered something!! I think you said with your hearing aids in you couldn't hear the tinnitus. I recommend putting them in! That can calm the body down (the fight or flight mode) and it is drug free!!!