I'm Losing My Battle...

Geo

Geo

Member
Author
Benefactor
Jan 24, 2015
600
California
Tinnitus Since
11/2012
#1
my T and H have been out of control lately some of you might have seen my past posts.. im to the point were this is too much for me not suicidal but im loosing my sane..my ear spiked 4 times today..and i was just in my house since i dont leave because my ears have been spiking everyday.. 4 weeks ago i only had one tone but due to all the spiking i hear 2-3 tones now..my volume has nearly tripled from 2 months ago and its just continuing i know tomorrow its just going to get worse and i dont want to see myslef in a month from now.. i dont know what is going on with me i have had T for 27 months with maybe 10 spikes in that time but i can honestly say it has spiked about 30+ times the past 6 weeks its bad my H is so severe im to the point that when my shoulder pops my ear spikes that bad when my wrist pops it hurts and sometimes spikes. i had no idea this can happen as i never noticed how much my bones pop since this has never been an issue.. most of you are going to say that its just in my head its not im not new to this i know my T and body..this is ridiculous, and have talked to people even they say this is so abnormal that this is happening to me like this... i dont know what to do even when i try to avoid something noisy, something unexpected spikes it and so small too...im so scared now...i dont know were to turn since the doctors cant help me and all say the same thing ..just make this T spike but i know they cant do nothing about it just suffer some more...from all the spiking everyday my head hurts so bad from the changing tones and volume i swear this is too much as i myself am drained i have zero energy in my body..2 months ago i had still a somewhat life even with moderate T now i am a zombie..i still cant believe there is no cure for this torture and hell disease i would give anything just to go back to the t i had two months ago....if it wasnt for my caring family i dont know were i would be, i can say im hanging in there for them at this point.
 
#2
Geo said:
my T and H have been out of control lately some of you might have seen my past posts.. im to the point were this is too much for me not suicidal but im loosing my sane..my ear spiked 4 times today..and i was just in my house since i dont leave because my ears have been spiking everyday.. 4 weeks ago i only had one tone but due to all the spiking i hear 2-3 tones now..my volume has nearly tripled from 2 months ago and its just continuing i know tomorrow its just going to get worse and i dont want to see myslef in a month from now.. i dont know what is going on with me i have had T for 27 months with maybe 10 spikes in that time but i can honestly say it has spiked about 30+ times the past 6 weeks its bad my H is so severe im to the point that when my shoulder pops my ear spikes that bad when my wrist pops it hurts and sometimes spikes. i had no idea this can happen as i never noticed how much my bones pop since this has never been an issue.. most of you are going to say that its just in my head its not im not new to this i know my T and body..this is ridiculous, and have talked to people even they say this is so abnormal that this is happening to me like this... i dont know what to do even when i try to avoid something noisy, something unexpected spikes it and so small too...im so scared now...i dont know were to turn since the doctors cant help me and all say the same thing ..just make this T spike but i know they cant do nothing about it just suffer some more...from all the spiking everyday my head hurts so bad from the changing tones and volume i swear this is too much as i myself am drained i have zero energy in my body..2 months ago i had still a somewhat life even with moderate T now i am a zombie..i still cant believe there is no cure for this torture and hell disease i would give anything just to go back to the t i had two months ago....if it wasnt for my caring family i dont know were i would be, i can say im hanging in there for them at this point.
Click to expand...


My situation worsen drastically from 10 January. I use Retigabine and i got symptoms like restless leg syndrome or parestestia, first in legs then, arms, then it went on back lasting from 5 sec to hours and switching places and on the end went to face and hair.
Now is became better but i used 4-6 paracetamol because no one said to me paracetamol can course hearing demagogy but i noticed my left ear is MUCH worse on lower frequencies to the point i used specific sound to silence tinnitus and now i cant here those sounds on my left ear.
And i can sleep any more. Hands get numb or i get pains, and i cant use pain killers and honestly i don't know what to do.

I sleep worse and my t get higher i get weaker and tired during day, leg pains and hand in shoulders. I cant hold laptop in lap any more. And all of it going worse why I don't know. I did had argues with some people and that is my sin what i did I don't know why it happens all this. Pains keep you wake up, if i dont sleep my t is worse, pain in legs make me miserable during day... I am lost too!

My only advice is to ask a doctor to try some epileptic that is strongest, rest is magnesium + b vitamin + zink + multivatims . Retigabine did help with H, you can try to get some low dosage ca max 150x3 per day.

I know that my life ended on my birthday almost 2 years ago.
 
#3
@Geo your condition seems peculiar, to say the least, sounds very aggressive, 30+ spikes in 6 weeks is way too much.
If it isn't psychosomatic, which you claim it isn't, I'd look for a TTTS diagnosis.
Either that or some kind of autoimmune ear problem - these usually get quite nasty, really fast.
However, that's just a very-very-very wild guess, you should visit a very experienced neurotologist or rheumatologist to get an expert opinion - these things are really hard to diagnose.
 
#4
When my T was at it's worst I had around 8 - 10 spikes a day but was to scared to ask anybody here if they had that too. But nobody talked about it so I just went along.... until some guy also said he had a lot of spikes each day.
Over time it became less with me and I know I have 2 or 3 spikes a week and try to ignore them.
@Geo : I hope your are getting better, but regarding the spikes it can just be a period, because at my worst time with T and H I also got a lot of spikes.
Hang in there!
 
#5
If the noise from your wrist and shoulder poping hurts or makes your T spike, what happens when you swallow, chew or say even speak? This would be be a lot more noise than bones poping.
 
#6
Geo, Have you tried any type of masking? It's not a cure but by masking it just might help you to at least distract you from the daily noise torture that you are going through. If it would distract you then you would have more control over your tinnitus. In my case I found the Moses/Lang Masking CD to be a huge help.

Like I said not a cure but just knowing you can shut your tinnitus off whenever you want too gives you more control over your tinnitus. You would be surprised when you find the right masking track that it will work very well at such a low volume you will hardly notice your tinnitus. Try reading this. It gives the info where you can buy it.
 
#7
Geo, get out of the house. Take earplugs or some headphones with nature noise and just go for a walk to your friends house. Sit outside in the quiet a shoot the breeze. Have a few beers.

After four months of solid sound and bouncing off the walls at home, what caused me to have moments where I forgot about my T was going on holiday with my friends.
 
#8
Coming back from where you are now must be hard. I don't think I can give much useful advice, but for the time beeing, maybe you should just accept beeing a zombie and survive one day at the time.

Also, have a look at this supplement:

https://www.tinnitustalk.com/threads/n-acetylcysteine-nac.395/

It's no cure, but might take the edge of some spikes and protect from further damage. Don't overconsume if it works is a good rule of thumb.

And like someone else said. take walks.
 
#9
I cant mask my T it is too loud and certain sounds just irritate it after a while... I cant go outside i wish, if a simple pop or talking to someone spikes it then outside will be worse, loud cars etc and plugs dont help me anymore i went to the dmv a couple weeks ago and came back with my T spiked and i didnt even get out the car but my window was a little broken so must of heard something outside.. And sometimes i feel when i would wear my plugs or muffs it will just increase from the pressure ...it seems the more it spikes the more vulnerable it gets to weaker sounds my pops werent affecting it 2 weeks ago... But when i mean spikes i mean permanent spikes as in volume increase..... This is a horrible time in my life ...
 
#11
Geo said:
I cant mask my T it is too loud and certain sounds just irritate it after a while... I cant go outside i wish, if a simple pop or talking to someone spikes it then outside will be worse, loud cars etc and plugs dont help me anymore i went to the dmv a couple weeks ago and came back with my T spiked and i didnt even get out the car but my window was a little broken so must of heard something outside.. And sometimes i feel when i would wear my plugs or muffs it will just increase from the pressure ...it seems the more it spikes the more vulnerable it gets to weaker sounds my pops werent affecting it 2 weeks ago... But when i mean spikes i mean permanent spikes as in volume increase..... This is a horrible time in my life ...
Click to expand...
Your T and H sounds like mine. But what do we do? You can't stay in your room forever, can you? I don't have as much experience with T as you do. I've had mine just over a year now. Are you thinking by isolating yourself it will get better? Im just asking, I have no idea what the proper way to go is. I have tried both ways-pushing myself out and trying to ignore the increases and have also tried isolating myself. They both suck shit, I really don't know what to do. It's truely pure hell.
 
#12
Geo said:
@RicoS did u t volume increase with everyspike as in permanent spikes
Click to expand...

Sometimes it spiked for 2 weeks , sometimes for houres, sometimes for minutes, but it was a constant proces that got me at my worst moment, but slowly it became less and my T went back to base level. I just thought my brain is adjusting to T or something. I could do nothing about it, but I had some bad moments that I quit work and went home just hoping the spike would come down. I had this for about 6 months or so. After that it it became less and I did not felt so much panic anymore when it happend.

And yes volume increased, but most of the time it was another tone instead of my basetone
 
#13
When my T first hit back in October of last year, I was shakin up but I handled it pretty well. Now im to the point were i really dont care about anything as much as I used to. Nothing is enjoyable anymore except sleep. I really wish I could go back in time to the days of silence. Frustrates me too that its 2015 and theres still no solution to this piece of shit illness.
 
#14
have had my T for about 6 weeks now, my ears get (non permanent/most in right ear) spikes 4-6 times a day. I have no job and no girlfriend at the moment so all I can do is focus on how shitty my T is. I often wake up in the middle of the night unable to fall back alseep. My T seems VERY VERY loud , I can hear it over everything, other noises just irritate it more (hyperacusis I believe). Please for gods sake , somebody help us, my sanity is slowing going out the window, I'm extremely on edge.

@Geo hang in there brother, I feel you on this. The only solution I am looking forward to trying is Agar 35, maybe you should order yourself some and give it a whirl. The side effects are supposed to be non existent, so there is really nothing to lose. I haven't ordered it yet but so far a lot of people on this website reported it to help sleeping and reducing T.

@Dubbyaman I understand exactly where you are coming from, nothing is as enjoyable anymore, the quality of life is blighted heavily. I have no words of wisdom for this as I'm feeling the same exact way. It sucks, its unfortunate that we are not educated on protecting our hearing from a much younger age.
 
#15
@RicoS sounds like ur t is low sometimes people confuse low from actually loud T if cant notice it sometimes then it is low if u watch tv and it fades in the back then it is low... In my case i didnt quit my job even tho my job would spike it a lot and permanenet ones as i worked outside that was one of my biggest mistakes i quit 2 years too late.. my T is screeching out my ears as i watch tv sometimes i cant even pay attention to what im watching from the loudness
 
#16
@Telis if i go outside ima cause more damage than inside even tho im causing them myslef from my stupid loud popping shoulders it ridiculous... Did u cause a lot of damage when u first got t because i caused my damage from work and unavoidable incidents from being outside i think thats why my t is acting like this.. Since u have had it only a year?
 
#17
@MattH- youre still new to T.. Ur t sounds loud because ur body is still processing it i remember how loud i thought i had it at first but after a month or two it became better .. But yet i cause permanenet spikes from my work so thats my fault..try sleeping with a tv thats what helped me in t beginning even tho u can hear it a bit when ur t is new its weird ...ur lucky i never have experienced these temporary spikes u guys speak of mine always stay ever since i got T...
 
#19
Geo said:
my T is screeching out my ears as i watch tv sometimes i cant even pay attention to what im watching from the loudness
Click to expand...
Yes, that is the last stage of loudness, when its just unmaskable and screeches thru everything.
Mine is like that in both ears, heard over heavy traffic.
I was actually diagnosed with thalamocortical dysrhythmia is Switzerland (same diagnosis as @Viking ), so its not your average tinnitus that you can just put in the background.
 
#23
Geo, My tinnitus got much worse in 2009. My tinnitus started in 2000. Up until 2009 I could mask my tinnitus with track #3 off the Moses/Lang Masking CD. Since 2009 my tinnitus got much worse and the masking CD would not even touch it. I was in a panic. Since then my tinnitus has increased at least 4 times and nothing I tried would mask it. Then I stumbled across a nature sounds site. I sampled all of them and found 1 track that masked my tinnitus perfectly. Have been using this track for a couple of years now.

You might want to go to this site and at least sample the tracks and see if one might help. For some reason the sound of crickets and running water will cancel out the tinnitus. Now there are several tracks with crickets and running water but only 1 would mask my tinnitus. The track that works for me is called "Sleepy Night Sounds MP3". I will post the link. Click on "Download Nature Sounds" and you will see all the tracks. There are many to choose from. I was in a huge panic and was afraid I could never find anything to mask my tinnitus. Well I did. And for me it works at a low volume. Hope this helps.

http://nature-downloads.naturesounds.ca/
 
#24
Geo said:
@RicoS sounds like ur t is low sometimes people confuse low from actually loud T if cant notice it sometimes then it is low if u watch tv and it fades in the back then it is low... In my case i didnt quit my job even tho my job would spike it a lot and permanenet ones as i worked outside that was one of my biggest mistakes i quit 2 years too late.. my T is screeching out my ears as i watch tv sometimes i cant even pay attention to what im watching from the loudness
Click to expand...

Hi,

Now I experience my T as low...but when it started I could not hear somebody talk above it that loud was it.
When the spikes occured my T was at a volume it is now....but the spikes were extremely loud and like I said sometimes they stayed for a while and sometimes they were gone in an hour or minute.
I know it is not the same as what you are going through now, but I just want to point out that the spikes can stop. It was my toughest moment of the whole T thing. But my T was loud and I mean realy loud....it also was hurting my ears that time.

I did not quit my job.... I mean I quit for that day when I was there for just 1 hour cause I could not stand the noice anymore and it was so loud that I could barely hear anybody..... But it all changed for the positive in a period where I thought that this was it. So please don't loose that hope!!
 
#26
So things still arent setteling down for you by now... Have you tried any medication so far, to at least calm your mind? You describe an downward spiral which definitely needs to be interrupted... But how... I know we all want a break from T and H, but we have to try getting stable while the noise and pain is present.

Do you have any plan to try? What do your days look like?
 
#27
I think it is counter productive if you over analyze and over protect yourself in every situation.

I suggest if you can, to go to some T retraining therapy & couple that with an anti depressant for a short while. Klonopin might also be beneficial in your case.
 
#28
Geo said:
@Telis if i go outside ima cause more damage than inside even tho im causing them myslef from my stupid loud popping shoulders it ridiculous... Did u cause a lot of damage when u first got t because i caused my damage from work and unavoidable incidents from being outside i think thats why my t is acting like this.. Since u have had it only a year?
Click to expand...

I had minor T (probably regular T) and then was giving a bunch of ototoxic drugs after visiting the doc about my minor T a few times-things went from a 1 to 8 in a few weeks. Then I was given the advise to get on with life. I went out, even tried to get back to hockey, go out with friends etc. things got worse, now I'm stuck at home scared shitless and alone with 10 out of 10 tinnitus and H so bad that a light switch is painful.

Looking back I could of avoided a lot by doing my own research. Oops
 

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