Tinnitus Is Whimsical, Cruel and Unpredictable

[NiNyu]

When I went to bed plenty of hours ago probably yesterday, I can't tell for sure anymore since I'm almost totally insane, T was screaming at its best/worst. It took me hours and hours to finally drift off to sleep.. not long before I got tossed out of sleep with a blaring T in my left ear and a racing heartbeat beyond sanity. It seems the noise woke me up, caused fight or flight stress: my body realised adrenaline. And that scenario happened several times; more than 4 at least. But how can you flight or fight a never ending noise inside; you?

Some people claim they can control T with their emotions. I don't know, maybe they really can or maybe it's just a belief. For me it does NOT work. But what is quite obvious is that T does control me, and therefore my emotions. I don't know about you, but usually emotions are influenced by things that happens around you. Thus you can't really control them yourself unless you have the option to do so. What does that mean? If you don't like smoking you do not smoke. But what if people around me smoke? You can leave the venue any time, can't you? What if I'm being forced to smoke or stay in a room full of people smoking? Well, that my friend you could call torture. Is it going to influence my emotions? You bet! But I can pretend that it doesn't affect my emotions, right? Sure. You can also pretend being stabbed in the back is fun. By that definition everything is fun or trivial. Either way, in the end it is you experiencing this..

The other day I wrote that I recently have a softer T upon waking up. I suppose I had just some lucky wake ups nothing more.

Today when I finally woke and were no longer able to fall asleep again I lay in bed for hours. T screaming out its lungs. After some more hours finally the screaming got softer, and softer, and softer, and softer to a point where I almost had silence. And I thought, 'Wow -- if it just could stay this way. I think I could handle it.' So I was lying there enjoying a brief moment of almost silence. Anxiously to move or to breathe too strong 'cause that could obliterate that very moment. That special moment -- which I haven't experienced for months, but felt like years. Of course, as soon as got up the dentist grabbed his favorite tool and went to work. Killing me.

Why am I even writing this here? Probably to show case that T is just too unpredictable and cruel. Even if you were to take meds or participate in a certain fancy new state of the art study you could never tell for sure if that treatment really did work or not since T is just too whimsical. Unless of course your T really drops down to zero and stays there for more than a brief moment.

 

[linearb]

T is unpredictable.

Life is full of cruel, unpredictable things.

Many people have struggled with adrenaline flashes causing huge, blaring T and severe sleep problems. I have experienced that. Many people have been very convinced that the adrenaline and blaring T are an inescapable consequence of having tinnitus, and that as long as they have tinnitus, they will have the adrenaline surges and disrupted sleep.

I was thus convinced.

Many people have discovered through time and patience, that the adrenaline flashes and sleep problems are not an intrinsic part of tinnitus, but are actually the result of some other mental process downstream of the tinnitus signal itself, and that it is therefore quite possible to return to very normal sleep and hormone regulation patterns even if the tinnitus itself does not improve.

I have made that discovery. My T is as noticable as ever, I can hear it pretty clearly any time I think about it unless I'm in an overly loud environment, but I fall asleep without problem, and sleep straight through the 4am cortisol release.

I hope that you are able to make a similar discovery.

 

[Telis]

All the adrenaline is gone for me, I have slight anxiety in the mornings becasue I don't know how I can hadle the day. I think for the most part I am just tortured. I don't have any reaction to my T but it hurts my head, it's loud and exhausts me quickly. I can function somewhat for about 8 hours and I'm done, I have to lay down or I pass out. Sometimes I pass out in about 10 seconds after going to bed. This is tiring for me. Time has made things worse, at onset I had a lot of energy, I'm now running out of gas.

 

[NiNyu]

@Telis , I so agree! This is so tiring. And it feels like time is making things worse in terms of how to handle the day.

@linearb , true story, life - nature - is full of cruel, unpredictable things. But why not going all the way and finish the cruelty? I feel like a horse with all four legs broken, floating in a river that just won't die.

You fall asleep without problem, and sleep straight through'cause you are a tough cookie.
The adrenaline flashes are new to me, I think. Speaking of adrenaline, could an overdose of it kill me?

 

[linearb]

You fall asleep without problem, and sleep straight through'cause you are a tough cookie.

You seem to think that people who are handling this better than you are right now, are stronger than you are.

In fact, I think it is simply that most of us have been dealing with this for far longer, and it gets better over time because the way you react to and experience the sound changes.

Most people on here were not doing any better than you are right now, at the beginning. I know I wasn't...

 

[patty]

NiNyu, I see this has started for you 12/14. I was where you are at 12/13. I could not sleep, adrenal/cortisol surges would wake me as soon as I dozed off. This went on all night long. Never slept much at all. I was not stronger than you. I was the same as you. Most have this, and it eventually calms down and sleep improves. Read the success stories. They helped me a lot.

 

[dan]

I implore you, nobody has worse tinnitus than mine.
@NiNyu you want some good news?
In my first year with tinnitus, this is how things went-
First week NO sleep at all - landed in the psych ward, got heavy benzos
and put me out. After 3 months of sleep with nightmares on benzos, guess what, they stopped
working.
So began a horrible sleep cycle of 1 night ZERO sleep, 1 night 5 hours sleep and 3rd night maybe 3 tops and so like that for about a year.
Then I began sleeping everyday for 5 hours, then 6 hours.
Again, I have the LOUDEST tinnitus ever possible and I am a light sleeper pre T.

On another note, why dont you want to give Trobalt a try or maybe Keppra or maybe a benzo. Those drugs calm down hyperactive brain neurons.
You CANNOT go it alone with MEGA T.
The fact you experienced near silence for a bit, is very promising for a drug trial as stated above.
I did not EVER not even for 1 second experienced any softening of my T in 3.5 years.
My tinnitus is proven super severe by the clinic in switzerland....my T level is comparable to Viking's...but his at least responded to meds and his only in one ear i think(?), mine is screaming away in both.
Anyways, you have some options before you so before you go off yourself, you owe to try some things first.

 

[dan]

Did I mention I also had excruciating ear pain and severe H ?

 

[NiNyu]

@linearb , you must be profoundly strong when you can handle a T as extreme as mine. That being said, I appreciate that you do believe that I might make it. ~hug

@patty , I may shouldn't ask, but did your T got any softer/better?
You know, most success stories just depress me since they are mainly about successfully ignoring T or pretending T isn't a big deal anymore.

@dan , I suppose without this forum here I would be either be right now in a loony bin or we wouldn't be having this conversation.
No. I didn't know you have the loudest here. Is yours louder than trains? Do you know the cause? You said excruciating ear pain when it all started?
Clinic in Switzerland, is that the one that offers the HIFU treatment?

You see, I read the leaflet of Trobalt, and it scares me. It may effect the eyes. I'm already hearing impaired now and the prospect of losing my eyesight doesn't sound any good. Of course, it doesn't have to happen but it IS a known side effect. Then again, hey, I still have the tactile sense, olfactory sense and the gustatory sense, right?
I tried Oxazepam (benzo) a few times. Not more than 10mg per day. The first two pills had a light impact on my T but after the third not much more. Moreover, I felt dizziness, drowsiness, lack of energy and the next day I had a heavy headache.
Honestly, I'm really not a fan of meds. I always try not to take any. Unless there's no other way around it, and of course only if their effect of soothing the symptoms of the ailment outweighs their side effects.
'You CANNOT go it alone with MEGA T.' you're probably right about that.. that's definitely one reason why I have been smashing my head..
Tell me, what meds do you use now?

 

[dan]

@NiNyu yes I can hear it over trains LOL. I can hear it over a Boeing 747 on the tarmac.
I can hear it over a lawnmoer. Mind you my T isnt some kind of super high pitched 15,000Hz
peep that even on a low intensity will be heard lightly over anything, no, my T or should I say T's are 4khz, 6khz, 8khz, and 10khz !!! So hearing those over anything tells you its LOUD - I shit you not.

Yeah, that HIFU shit in Swiss is where I went 2 years ago for an EEG.

Ninyu, you tell me you are afraid of drugs, yet you ask people for the euthanasia drug.
At the moment I dont use any meds, but I am at the end of my FOURTH year with T - how long have you had your T ??? Remind me please.

You read the leaflet of Trobalt- Well you go and read the leaflet of Adderal for ADD - you could die of a heart attack.

p.s. nobody gone blind from Tro as of yet. (correct me if Im wrong)

 

[dan]

p.s. before you take any drugs (be it trobalt or SSRI or anything), discuss with your doctor because if you have pre-existing conditions or certain predispositions that you might not realize but your doctor may know about, a drug might exacerbate it temporarily or permanently.
Be safe and informed.

 

[Nick the Swede]

@dan, may i ask you what caused your T in the first Place?

 

[dan]

@dan, may i ask you what caused your T in the first Place?

Sure, noise-induced by an alarm followed by a standing too close to fireworks while having a panic attack hiding behind my girlfriend's back.
Hows that for a sure-fire Mega T cocktail trigger!

 

[linearb]

Sure, noise-induced by an alarm followed by a standing too close to fireworks while having a panic attack hiding behind my girlfriend's back.
Hows that for a sure-fire Mega T cocktail trigger!

I also had a panic attack at the moment of my noise trauma - I suspect this is significant.

 

[dan]

I also had a panic attack at the moment of my noise trauma - I suspect this is significant.

I suspect it is extremely significant.

 

[Stink]

how can panic attack cause tinnitus?

 

[Dana]

@Stink Panic attack means surge of adrenaline, which sends the body into "fight and flight" response and changes the "gain" (amplification) of the auditory system. The same sound can have a certain effect if you are not frightened by it, and a WHOLE different effect if you are panicked by it, in which case the auditory system amplifies it, tunes into it, and even, if my suspicion is correct, memorizes it and sends it for further and proper analysing of the threat.

 

[patty]

@NiNyu some days I think the sound is lower but what I really think that's happening is it's because I am no longer anxious about it or care that much about it. I am busy doing whatever. I am not trying to purposely ignore T, but subconsciously I am. At the very beginning however it was much louder cause of the ear/sinus infection that took a while to go away and I was very stressed out. I had hypercusis too. Now I go about my life almost like before T (earplugs) and patiently wait for a drug that comes around for T. I am optimistic that it will be sooner rather than later.

 

[NiNyu]

@dan , sounds like we have similar Ts.

You went to the HIFU clinic. So what do you think? Is it legit or just science fiction? Can they do a lobotomy (that term so reminds me of Total Recall '90) without cracking the skull open?

No, no I am not afraid of drugs, I am afraid of irreversible side effects of drugs. Though, morphine if being pure I'd try. It's a plant after all.

p.s. nobody gone blind from Tro as of yet. (correct me if Im wrong)

Well, nobody got T from just lying down flat in bed.. but I got it. So I know my luck.

@patty , I wish I could share your optimism. If you take a closer look at all the vets.. they have been optimistic for decades to no avail.

 

[dan]

Well, nobody got T from just lying down flat in bed.. but I got it. So I know my luck.

u must of had another reason - meds, stress, noise exposure, ear syringing, barotrauma,whiplash, head trauma, tmj, reading about T, chemical exposure, mercury fillings, high blood pressure, alcoholism, excessive masturbation, panic/gad disorder, thyroid dysfunction, kidney problems, AIDS, meniere's.......and so on and on..i can go on all night.

 

[Ricky81]

When will this torture end for all of us? Maybe when we die?
I spent my whole career working in hospitals helping patients and doctors and this is what I get. Fuk karma.

 

[NiNyu]

When will this torture end for all of us? Maybe when we die?
I spent my whole career working in hospitals helping patients and doctors and this is what I get. Fuk karma.

Good question. It seems that way so far. I don't get nature. It all makes no sense.
Sometimes it's hard to see all the angles, but your very career might be the key to a solution. Please let me know beforehand if you should open that door. ~hug We are all in the same mess.

 

[skoupidis]

@dan
You went to the HIFU clinic. So what do you think? Is it legit or just science fiction? Can they do a lobotomy (that term so reminds me of Total Recall '90) without cracking the skull open?

It seems something like that. But it is too early to tell. Ivan (Viking) is a canditate for surgery, he plans to have it on summer. He may be able to tell us more, I think he will be the first from the forum to have such a surgery and lets hope more will follow. But keep in mind that they promise nothing and their experience so far suggets a 50% reduction if I am correct. One would hope for a cure...

@danWell, nobody got T from just lying down flat in bed.. but I got it. So I know my luck.

Is that how you got it? Perhaps you had it before and realised it then. We all have prety bad luck here.

@danI wish I could share your optimism. If you take a closer look at all the vets.. they have been optimistic for decades to no avail.

Indeed, but no drugs where on trial phase (about to be released), no gene therapies was tried on humans, no hearing loss therapies where even concieved. They now actually attemt to reverce hearing loss with atoh1 and even more genes coming up at the future. I wait at the edge of my seat for the day they (hopefully) announce the first success in reversing hearing loss in a chronic patient (they do recruit). It will be a great day indeed, a huge breakthrough, lets hope it happens and soon. Many things will change then. That day we will celebrate.

 

[NiNyu]

@skoupidis , Viking might be the first HIFU T patient every. Why is he going in the summer and not now? So HIFU is just reduction and not a cure?

Good one! But I have extreme debilitating T +H and severe hearing loss. My hearing dropped from impeccable 100% to ~30% in less than 20 minutes when I was lying in bed and the SSHL began. And T.. T made my head vibrate! I had never experience anything as bad as this. And I am still in hell 24/7.

But all these new treatments are in their very infancy. It will take years upon years before there are even results; let alone their marketing. So maybe if we are lucky there will be a drug in 5? 7? 10 years? It's a lost cause.

 

[Street Spirit]

My old friend Craig had surgery for his T and neuralgia. It didn't work.

 

[skoupidis]

@skoupidis , Viking might be the first HIFU T patient every. Why is he going in the summer and not now?

You will have to ask him that. I think he works his arse off to raise the money till then.

So HIFU is just reduction and not a cure?

I honestly don't know. We will have to wait and see. Lets hope it can cure 100%. I hoped to see such numbers but they didn't give that: http://tinnitusresearch.org/forum/viewtopic.php?f=8&t=9

It is a surgery of the future, basically a brain surgery but completely bloodless and, one could say "safe" if they know what they do. Because a mistake can be potentially VERY dangerous and quite irreversable, a really difficult-ansolvable case when it comes to brain. The real question is: Do they know what they do? The brain is so complicated... Lobotomy is an ancient therapy, totally brutal! They say it works but how and why they can't realy know. Perhaps it is the same here... Unless they have decifered that part of the brain.

Good one! But I have extreme debilitating T +H and severe hearing loss. My hearing dropped from impeccable 100% to ~30% in less than 20 minutes when I was lying in bed and the SSHL began. And T.. T made my head vibrate! I had never experience anything as bad as this. And I am still in hell 24/7.

Doctors say you should immediately take large doses of costricosteroids, even intravenusly, right after onset. Did you do that? The first 2 days are crucial. Then it becomes chronic. Also, HBO is suggested in such cases, still close to onset.

But all these new treatments are in their very infancy. It will take years upon years before there are even results; let alone their marketing. So maybe if we are lucky there will be a drug in 5? 7? 10 years? It's a lost cause.

In my mind it is like a certain therapy, even reversing hearing loss, in about 10 years minimum. The first drugs (Autiphony and AM-101) should be out much sooner, in about 3 years or so, but we don't know yet if they will really help.

 

[skoupidis]

My old friend Craig had surgery for his T and neuralgia. It didn't work.

Microvascular decompression is a surgery for trigeminal neuralgia and also may work for tinnitus too, depending on what nerves get depressurized. Could you give us more details about your friend and the procedure?

 

[Street Spirit]

@skoupidis

He had 2 failed mvds and then a third for geniculate neuralgia where they cut the nervus intermidius (7th cranial nerve) it was a failure as well. He did TRT with Jastreboff and travelled across the country. No Neuro, or doc could help him..in the end he begged for Potiga and they refused to prescribe it to him.

 

[1MW]

@NiNyu You passed ssnhl ? The treatment for this is corticosteroids .
Have you tried pulse corticosteroids?
I passed ssnhl in sleep with severe T i regained my hearing with corticosteroids.
I had more than a month to sleep i had about 30 mins of sleep that month.
My T almost stopped after 2 years from event.
I know some cases that responded to intratympanic dexamethasone 1+ month after the ssnhl.
In ssnhl only corticosteroids have shown significant results in all trials is started soon from the event.