Relentless Progression

[Telis]

My T and H are getting worse. New noises appearing, ears feel more and more plugged and painful. And more so in the morning, feel like I'm really deaf and plugged up when I wake, as the day goes by I either get used to the new lowered hearing or it loosens a bit. I really don't know what is happening.

I don't feel human anymore, feel like a malfunctioning machine with all these strange and painful electrical type sounds. It's like I have a short circuit in my brain.

I couldn't imagine things could get this bad a few months back. I really wonder what the future holds.

I guess I will go back and get my hearing tested again. Although I'm not really sure how this helps me.

Can anyone relate to this?????

 

[dan]

You should really try Retigabine man, maybe it can stop your worsening.

 

[Jay M]

200mg Alpha Lipoic Acid (ALA) a day has helped my buzzing sound.

 

[dan]

also, dont get the LDL test! and loud beeping test where they put suction thingies in your ears and play loud beeps thru them. you dont need that right now. just get the basic test and if ur losing hearing maybe u need to get a shot of steroid or am101.
and remember - tinnitus sucks ass.

 

[Telis]

also, dont get the LDL test! and loud beeping test where they put suction thingies in your ears and play loud beeps thru them. you dont need that right now. just get the basic test and if ur losing hearing maybe u need to get a shot of steroid or am101.
and remember - tinnitus sucks ass.

Yeah I could never imagine being scared of the day due to suffering, waking up shaking because I'm scared to endure another long day. I'm not a weak person and this has brought me to my knees.

I've even tried sleeping in the day and stay up all night. The reality of a life I once enjoyed is so hard to see. Good memories just haunt me and add to the misery.

 

[object16]

my tinnitus was also relentless. i instituted radical therapy. this consists of always using a Bose noise cancelling headset. my theory is this gives the ears a "rest". after about 6 months, i got my hearing checked, and i actually had improvement in my test! also, i do "music therapy". i have a thread on music therapy, and i have music tracks encoded in FLAC that i play all night. also, i did "pulsed" cannabis treatment for the last 3 weeks. take a shot of cannabis, which makes your tinnitus get really bad, and then don't take any for another week. as your brain recovers from the cannabis, (at least with me), the tinnitus seems slightly better (I cannot guarantee the cannabis part). for me, the combination of Bose + music treatment, helped me a lot, and my tinnitus definitely did get quieter. for a long time i thought i was going to be dead soon, now it is not that bad. a year ago i thought i was going to be in a pine box, for sure. now i seem to be able to hang on. unfortunately, i got kicked out of my job, because i was messing up due to lack of sleep. fortunately, i am eligible for early pension, so at least i have a roof over my head (paid for) and 3 square meals. tinnitus is quite horrible (at least for me), that's what i did, and i feel i am getting better. any brief noise, however, makes my tinnitus get a lot worse, even normal noises. i went sailing with someone i know, and the wind noise aggravated it. sometimes it seems like i am dying in slow motion. if you try cannabis, only take a small amount, only. it is very scary, because your tinnitus will get louder, and you will think you are going to die. i cannot live a normal life, and good memories are long long in the past.

 

[Blair14]

@object16

So just to clarify, you wore the noise cancelling headset while playing sound or no sound. Perhaps you can give me more info on chat about music therapy and FLAC, not familiar with that. I have a sound pillow I use at night, my wife has a bad cold and I am trying to avoid getting it, so now I'm on the couch and have three cds presently of relaxing music that I am trying at night as well, with some more donations from my kind mother in law to sort through. And been hitting youtube, just so I have lots of variety and I limit the amount of close sound so see if it turns down my sound sensitivity, I think I might have H, nothing diagnosed, like normal for around here. I have read where cannabis will make it worse, no question.

Blair

 

[Telis]

"pulsed" cannabis treatment

Never heard of this. Do you just smoke heavily then wait?

 

[SoulStation]

My T and H are getting worse. New noises appearing, ears feel more and more plugged and painful. And more so in the morning, feel like I'm really deaf and plugged up when I wake, as the day goes by I either get used to the new lowered hearing or it loosens a bit. I really don't know what is happening.

I don't feel human anymore, feel like a malfunctioning machine with all these strange and painful electrical type sounds. It's like I have a short circuit in my brain.

I couldn't imagine things could get this bad a few months back. I really wonder what the future holds.

I guess I will go back and get my hearing tested again. Although I'm not really sure how this helps me.

Can anyone relate to this?????

I relate to the feelings you are having.

 

[Teri]

@Telis,

I have been diagnosed with Meneires disease and have difficulty with my ears when I get an attack. Unfortunately, with Meneires, you don't have a clue when this will come on. I cut back on salt, caffeine and do not use any alcohol. I also try to watch what I take for OTC medicines (ibuprophen spikes my T). I take a double dose of diuretics medicine daily, take B12, Zinc, Magnesium, off and on..

I also take Clariton D when I have head pressure. I can only take it one day, otherwise I get too "jacked up" with it.

I hope this helps. I am so sorry you are struggling so dang much. Please know that I am hoping and praying for better days for you.

 

[David S]

@Telis I was where you were 6-9 month ago. I truly believed that my life was over. All I could do was to nock myself out with drugs. What help me was to think that even if my life was useless (witch it wasn't) I could still be around just living for my family and friends.

Even if I still have my bad moments I am now benzo free and my life is quite ok.

You will get better. Just give you limbic system time to cool down. The limbic system is out of our control...

 

[billie48]

@Telis I was where you were 6-9 month ago. I truly believed that my life was over. All I could do was to nock myself out with drugs. What help me was to think that even if my life was useless (witch it wasn't) I could still be around just living for my family and friends.

Even if I still have my bad moments I am now benzo free and my life is quite ok.

You will get better. Just give you limbic system time to cool down. The limbic system is out of our control...

Thanks for your post. Your mentioning of living for your family while your life was considered useless reminds me of my similar situation a few years back when T & H totally overwhelmed me with immense sufferings daily. I thought my life was utterly wasted and useless. Then I thought I still have an able body which could do a lot of things for my family and I could show I love them lots. I thought if T made me live like hell, I would fight back to make my family live like in heaven. I was extra nice to everyone, hugging and kissing them, even massaging my wife daily. I found my life was still useful to my love ones besides earning an income. That was a ray of light in my life which was bombarded daily by tinnitus darkness, and that allowed me to soldier on with immense tinnitus sufferings.

 

[jazz]

My T and H are getting worse. New noises appearing, ears feel more and more plugged and painful. And more so in the morning, feel like I'm really deaf and plugged up when I wake, as the day goes by I either get used to the new lowered hearing or it loosens a bit. I really don't know what is happening.

What does your ENT say? It sounds like you need medicine; maybe some type of AED. I know Retigabine is banned in Canada, but maybe you could try another AED, something like Gabapetin. Some people on TT have tried this, and at least one person has used it with Klonapin. Either or both drugs might give you some relief.

I'd probably take a few supplements too. Perhaps, something like magnesium and NAC or magnesium and ALA might help. (ALA can be stimulating, however, and that's why I stopped that particular supplement many months ago.)

But I don't believe supplements will be enough with wicked bad tinnitus. That's why I suggest you go to a physician and see if he can help you.

And do you have any relatives in the US you could visit and get a prescription for Retigabine? Or just come here with a passport and try to get on the drug. We're friendly in the US! Or, better yet, go to the UK and get in on the Autifony trial. They are accepting tinnitus sufferers up to 18 months from onset. I haven't followed the Retigabine thread for a few days, but I believe someone on there mentioned you didn't have to be from the UK. But I could be wrong.

 

[Markku]

I believe someone on there mentioned you didn't have to be from the UK. But I could be wrong.

That's not been officially confirmed yet. Hopefully it will be the case.

But @attheedgeofscience did say the following, and yeah, his information is often correct.

(According to information I have obtained, the trial is likely to be open to non-UK nationals at some of the study sites - provided participants speak good English. This is dependable information.)

 

[valeri]

Isn't @Zimichael from Canada?
How did he get retigabine?

 

[Telis]

Isn't @Zimichael from Canada?
How did he get retigabine?

He's from California. Retigabine is not available in Canada.

 

[Telis]

What does your ENT say? It sounds like you need medicine; maybe some type of AED. I know Retigabine is banned in Canada, but maybe you could try another AED, something like Gabapetin. Some people on TT have tried this, and at least one person has used it with Klonapin. Either or both drugs might give you some relief.

I'd probably take a few supplements too. Perhaps, something like magnesium and NAC or magnesium and ALA might help. (ALA can be stimulating, however, and that's why I stopped that particular supplement many months ago.)

But I don't believe supplements will be enough with wicked bad tinnitus. That's why I suggest you go to a physician and see if he can help you.

And do you have any relatives in the US you could visit and get a prescription for Retigabine? Or just come here with a passport and try to get on the drug. We're friendly in the US! Or, better yet, go to the UK and get in on the Autifony trial. They are accepting tinnitus sufferers up to 18 months from onset. I haven't followed the Retigabine thread for a few days, but I believe someone on there mentioned you didn't have to be from the UK. But I could be wrong.

Thanks for the info.

I will give NAC and magnesium a shot.

Autifony I would love to get into, will definitely try.

As far as retigabine, not sure, sounds pretty scary but I guess have nothing to loose at this point. I was hoping for some better results here at TT before i went to another country seeking out this treatment.

 

[Telis]

@Telis I was where you were 6-9 month ago. I truly believed that my life was over. All I could do was to nock myself out with drugs. What help me was to think that even if my life was useless (witch it wasn't) I could still be around just living for my family and friends.

Even if I still have my bad moments I am now benzo free and my life is quite ok.

You will get better. Just give you limbic system time to cool down. The limbic system is out of our control...

Thanks...yeah I keep hoping time helps. Every day I wake I hope it's a bit better, just seems to get worse. My H is progressively getting worse, maybe too much noise or stress. I have no idea but it's really bad. My ear muscles will jump/spasm at the slightest noise, even my own voice.

Congrats on being benzo free!

 

[valeri]

@Telis

"So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!"

That's from his post so I'm obviously missing something.

 

[Telis]

@Telis

"So too with Canadian pharmacies...You rail against them on a public forum about being a bunch of slow-to-deliver layabouts...and then your Potiga arrives the same day!"

That's from his post so I'm obviously missing something.

Yeah you are. It's a Canadian online pharmacy. They won't provide drugs to Canada that are not allowed in the country. I believe they just source retigabine out of Europe and ship it to where the drug is approved for sale.

I believe the drug was taken off Canadian shelves in 2013.

 

[dan]

I believe the drug was taken off Canadian shelves in 2013.

How's that for shitty luck eh Telis?

 

[David S]

Thanks...yeah I keep hoping time helps. Every day I wake I hope it's a bit better, just seems to get worse. My H is progressively getting worse, maybe too much noise or stress. I have no idea but it's really bad. My ear muscles will jump/spasm at the slightest noise, even my own voice.

Congrats on being benzo free!

This was exactly my situation as well. For the first 4-6 month it was just getting worse and worse. Remember having a lot of problems with the small mussels in my ear in the beginning. Sort of morse coding on and of all the time. On top of that a T that were extremely reactive to all sort of daily sounds (fans and frying pans rct.). Happily most of that went away but I still got my T 24/7.
Stay strong, it will get better!