Do You Get Silent Days?

[RaZaH]

Just wondering , been almost 3 years now and today is my first 98% silent day ?
Yesterday I hadnt slept for 24 hours , blinding headache and screaming T.
Today I got a lot of sleep and took almost 4 hours between asleep and awake with complete silence, it was heaven ! Then I woke up properly and I have 98% silence.
Never , ever happened before ?

I do not look forward to waking up tomorrow with my regular screaming T.
Mornings have always been the worst for me, friggin sucks to start your day like that .
I am sure that if my mornings would not be so bad my attitude towards T would be much better.

Anyways , having a great day

 

[RaZaH]

Let me rephrase that , I am having the best day ever !

 

[Emil Mikalsen]

That's great to hear, maybe they will keep coming in the future!

 

[Telis]

Wow...sounds like you could loose it permantly one day!

Lucky you weren't on retigabine yet. It would be mistaken for giving you massive improvement and everyone on the retigabine thread would be singing praises to the retigabine heavens and saying how it has to be the drug.....there is no mistaking it.

 

[LadyDi]

Just to know a day like that, even one day, is possible lifts my heart.
Thanks for posting, @RaZaH. I am thinking there are more days like this in your future.

 

[Larry OT]

Glad it's a good day !
Sleep patterns always affect my T,
Like clockwork so to speak.
Depends on the depth of sleep and hours and T's decision in cycle.

So happy for your day. I hope there's more!

 

[RaZaH]

I have had relatively ok days before and always start imagining that "Now it's getting better!" and I am always disappointed. In this case I do not want to get ahead of myself here so I am just enjoying the day.

 

[Telis]

Yeah enjoy it. I have never had a low day before. If I could just get one a month...man this would go a long way.

 

[Christian78]

I had once a silent evening. after it i got 300% strongest t, and now i use retigabine, I may say i get silent day almost every day.

 

[Kopesy]

Great news man! o/ I've also had a few 'silent days', longest was for about 8 days straight! It's odd how you mentioned it was really bad the day/night before as this has always been the case for my 'silent days' too..
It's really possitive stuff though, I've heard that the more changes in your T the better chances of it getting better.
Hope it stays silent for as long as possible, even better, forever! Keep us posted but don't spend too much time on here, enjoy the silence my friend

 

[RaZaH]

I'm not here !

 

[gary]

Just wondering , been almost 3 years now and today is my first 98% silent day ?
Yesterday I hadnt slept for 24 hours , blinding headache and screaming T.
Today I got a lot of sleep and took almost 4 hours between asleep and awake with complete silence, it was heaven ! Then I woke up properly and I have 98% silence.
Never , ever happened before ?

I do not look forward to waking up tomorrow with my regular screaming T.
Mornings have always been the worst for me, friggin sucks to start your day like that .
I am sure that if my mornings would not be so bad my attitude towards T would be much better.

Anyways , having a great day

RaZaH, that has happened to me also, about a year ago. Same as you about 98% silence. Goes to prove there is no reason why they all can't be like that. I did nothing different that morning. I still have my good and bad days, but nothing like the 98%er.....

 

[erik]

No totally silent days for me. Some almost silent...yes, occasionally. Whether loud or quiet, go about your normal business and you will see in the end it doesn't matter that much. Sure I would like it to be totally gone but for some people and after some time, that may not be an option any more until a treatment is discovered. Until then all you can do is carry on...

 

[Larry OT]

I would love to have my brain chemistry checked out to find out why my T cycles from silence to catastrophic over a 4 day period. There must be something to the relationship from sleep chemicals that affect T.

Has a research been done that can measure or detect brain chemistry with tinnitus sufferers? They know what goes on with various brain chemistry during sleep. How'd they get there? Isn't there some corolation?

 

[Telis]

I would love to have my brain chemistry checked out to find out why my T cycles from silence to catastrophic over a 4 day period. There must be something to the relationship from sleep chemicals that affect T.

Has a research been done that can measure or detect brain chemistry with tinnitus sufferers? They know what goes on with various brain chemistry during sleep. How'd they get there? Isn't there some corolation?

I would take those low days as a great sign Larry. Somehow your brain is managing to suppress it at times, this should give you a lot of hope.

 

[Kelli]

Silent day? What is this? Lol

 

[Larry OT]

@Telis

Thanks Telis, it's kind of a mixed blessing in that the return is always insanely loud.
Hey, it's great having quiet days, but Its hard for me to cope with the roller coaster as the anxiety builds knowing what's ahead.
If I oversleep 7 hours the good day or two is gone and I'm back to noise.
I am grateful and hopeful and try hard to take it one day at a time.
I want to find a sleep neurologist that wants to test me to find what goes on and find a way to identify it since it's so extreme and periodic.

 

[DutchGuy]

No silent days when you have H.
Today went outside, motor-scooters were sounding like a race-motor.
If I win a million lottery, I would do this:

http://colekcolek.com/2012/04/19/old-man-living-alone-on-island-for-20-years/

 

[Relic Hunter]

Never silent.

 

[Larry OT]

At last a cure ; )

Case report. The patient is a 63-year-old otolaryngologist who reported having tinnitus for about 40 years. He had a recent stroke, and recovered well. The stroke was located in the left hemisphere, in the more dorsal part of the corona radiate. It was involved in the body of the caudate and caudodorsal aspect of the putamen. Here is what is interesting about this. Fortunately, the patient recovered completely from his stroke with no damage to speech. His hearing also remained unchanged. The one thing that did change, however, was his tinnitus. It disappeared completely.

 

[jazz]

Yes, here is the reference to your case report.

http://discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper

 

[Larry OT]

Thanks Jazz. I got it here. It's an interesting read as well:


http://www.audiologyonline.com/articles/integrated-approach-to-tinnitus-management-11598

 

[gary]

I would love to have my brain chemistry checked out to find out why my T cycles from silence to catastrophic over a 4 day period. There must be something to the relationship from sleep chemicals that affect T.

Has a research been done that can measure or detect brain chemistry with tinnitus sufferers? They know what goes on with various brain chemistry during sleep. How'd they get there? Isn't there some corolation?

Larry, I too have the T cycle 5-6 good days-5-6 very bad days. for me the T changes when I go to sleep and awake. I can go to sleep with very bad T, awake and the T is not bad. For me something is going on while I sleep, on three occasions I was having a good day, good as in it's very noticeable, but not really bad, then I took a nap for an hour and woke up to T being very bad. No more naps for me on a decent day.

 

[RaZaH]

I slept for a few hours , woke up to ... 98% silence. Usually I get a random reset like you mention @gary , sometimes worse, sometimes better. This time , the same as when I went to sleep.
I am trying to sleep but the silence is deafening and my brain is in full on T search mode, weird.

I am now trying to sleep but I fully expect a reset when I wake up.

 

[OddV]

Hope it's permanent @RaZaH

 

[RaZaH]

Its not , but I am enjoying the moment for sure.

 

[Telis]

I slept for a few hours , woke up to ... 98% silence. Usually I get a random reset like you mention @gary , sometimes worse, sometimes better. This time , the same as when I went to sleep.
I am trying to sleep but the silence is deafening and my brain is in full on T search mode, weird.

I am now trying to sleep but I fully expect a reset when I wake up.

Wow. This is great news. Hope it continues for you.

 

[RaZaH]

There´s at least a 98% chance that my 98% silence will turn back into 98% T.
I am not getting my hopes up.

 

[locoyeti]

I would love to have my brain chemistry checked out to find out why my T cycles from silence to catastrophic over a 4 day period. There must be something to the relationship from sleep chemicals that affect T.

Has a research been done that can measure or detect brain chemistry with tinnitus sufferers? They know what goes on with various brain chemistry during sleep. How'd they get there? Isn't there some corolation?

i think you hit on something profound here. i had a suspicion about the connection between sleep and t, and my experiences with retigabine have definitely given me even more reason to believe in this connection. whenever i have naps on retigabine i get small spikes (i have to will myself to resist the soporific effects of the drug). sometimes when i wake from my naps, i feel this strange sensation of my tinnitus being behind a wire fence, just waiting to get loud, and all it takes is me getting up and moving around for that sensation to subside. hard to explain the phenomenology. if i get inadequate sleep in the night, it seems to affect the quality a bit. it might have something to do with brain waves. i was skeptical of the thalamo-cortical dysrhythmia explanation of tinnitus, but my experience with sleepiness and this drug make me wonder. i haven't done much research on this but i imagine it to be quite obtuse (i think the existence of gamma waves in the brain are still controversial). food for thought.

 

[RaZaH]

There is without a doubt a connection to sleep and waking up, a roll of the dice if you will,