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evielution84

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 #1 
Hi Dr. Nagler- I had a consult with you months ago regarding my situation. I tried CBT for tinnitus and unfortunately it did not help me as much as I hoped, aside from changing my conscious thoughts toward it. My original biggest problem since tinnitus started continued: severe sleep problems. Falling and staying asleep, some nights of 1-3 hours at the height of my anxiety over this. I finally could not continue without support and my doctor started me on a benzo before sleep. It helped my fall asleep and increased duration, but quality is not there (poor deep sleep, which my Fitbit even proved). I’ve been on it a solid month now, and prior two months on/off. I have just now started TRT (about 4 months into tinnitus) as this has become a significant problem with my sleep and secondly, concentration and being able to relax. I am now on week 3, but last week I was on vacation (snowmobiling and skiing) to the point I didn’t wear devices (WNGs) during the day snowmobiling (instead ear plugs for noise protection) and with skiing I had ample sounds to wear I didn’t even hear it. So that is when I noticed tinnitus got quieter in a quiet environment, to the point I didn’t use the WNG for sleep but instead had some background sound on (though my clinician told me for now I was to wear it 24/7, except in a loud environment, but definitely in quieter setting). Well, maybe I made a mistake of sleeping without them thinking, tinnitus is quieter, I am not obviously anxious about it anymore, I should sleep better now right? Well, I still took my benzo (lower dose than I’ve used previous months) and I still didn’t sleep better. So frustrated. I have a follow up this week but in the meantime, I would love to hear your thoughts on these questions:
1) when will sleep improve once starting TRT? I was told some find relief quickly others it takes a few weeks or a few months to notice improvement. When will my brain subconsciously stop reacting to the sound when consciously I don’t have that anxiety as before? This is a very frustrating part of all this for me
2) I keep contemplating tapering and stopping the benzo as I do not feel the conscious anxiety over it anymore. I worry it is just making my sleep worse at this point. But perhaps the original problem is still there, subconsciously, and I need TRT to work longer before stopping? I am really not sure what to do, I don’t want to be on it as my sleep still isn’t great (perhaps longer than before in terms of hours but still, mostly light sleep), my doctor is aware of the TRT and is monitoring me and has told me how to taper once ready. My clinician trained under Jastreboff and also is not supportive of it, but given my circumstance with sleep has told me to remain on it a bit longer. I just want some quality sleep back desperately! Thoughts?
3) I’ve had on/off physical sensations with my tinnitus in my ears. Like areas above ear canal on my ear feel a warm or a tingly sensation because of tinnitus. It is usually when I am not distracted or in quiet place or on a particular night I had very poor sleep. It was explained as the tinnitus signal has triggered my limbic system (and other non auditory systems) responsible for physical sensation and perception. And that basically my brain is currently hyperactive in places it should not be...and why the sleep challenges, these sensations/perception of them and how TRT works to change this. All this was explained and I understand it but wanted your take if you’ve heard or seen this before? Warmth of tingling ear sensations with tinnitus.

Your thoughts are much appreciated!
Eva
Dr. Nagler

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 #2 
Hello Eva -

I'm not sure I'm in the best position to answer your questions since you are already under the care of a TRT clinician whom (as I recall from our previous conversation) you have thoroughly vetted and who knows you and your tinnitus far better than I. I am sure that he has told you that it is impossible to tell when your sleep will improve. I am sure he has also told you that it really isn't a good idea to put a calendar on these types of things. Assuming that you have already adopted my Hints for Sleep, I really have nothing to add in that regard except to state the obvious: that three weeks is far far too early to be expecting anything at all from TRT.

With respect to the benzodiazepines, again I would follow the recommendations of your TRT clinician and the physician who has prescribed the medication. I am really in no position to second-guess them. The only thing I might question is your opinion that the drugs are making sleep more difficult. If anything, benzodiazepines tend to make one more drowsy as opposed to less drowsy.

I agree with your TRT clinician regarding his observations about the intermittent warm/tingly sensation you have observed. This sort of thing is not at all uncommon.

I remember you well from our phone consultation back in mid-December, Eva, and I will keep a good thought for you.

All the best -

Stephen M. Nagler, M.D.

__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
evielution84

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Posts: 15
 #3 
Thank you, I need to clarify it is not that they don’t make me drowsy (and I naturally feel sleepy myself before bed) it’s that even if I take them, I’m waking up throughout the night (which I think is normal except I’m hearing the noises around me like sound) and I’m waking tired without the quality sleep I need. It’s odd because a few weeks ago I had 1-2 days of better deep sleep on them and now it’s poor. I was hoping they’d get me more rested versus just increase my hours if (light) sleep. Thanks for the feedback though!
Dr. Nagler

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 #4 
Thank you for clarifying, Eva.

I am really not an expert in sleep medicine and can address these sorts of issues only in the most general terms. If sleep continues to be a challenge for you, my suggestion would be to speak with your primary care physician about a referral to a specialist in sleep medicine. I mean that's what I myself would do if I felt I were not getting adequate sleep in spite of following the Hints for Sleep recommendations.

Kind regards -

Stephen M. Nagler, M.D.



__________________

The best way to find yourself is to lose yourself in the service of others.
- Mahatma Gandhi

No bird ever soared in a calm. Adversity is what lifts us.
-
David McCullough quoting Wilbur Wright
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