Clonazepam (Klonopin, Rivotril)

[RaZaH]

It got weird in the sense that I could not remember anything at all , could not sleep and had a hard time thinking straight. As for alcohol , Im not all that fond of it and never drink anything stronger than beer.

Yeah , my doctor ...I was worried and called him and asked explicitly if there any way I could do any harm by stopping so quick ... "No , you might feel a bit stressed but you will know what is causing it so go ahead". Sigh...

When you say excessive glutamate ...what does that mean in terms of treatment ? Anything I can do about that ?
This might be a stupid question but is this in any way connected to mono sodium glutamate ?
Just before the T started I ate a whole bag of Doritos MSG and got this incredible headache , located at the ears ...always thought that was weird...

 

[Louise]

Usually T sufferers steer clear of MSG as it makes T worse. Its a 'neurotoxin' and over-excites neurons. There is a theory that (some) T is caused by the hair cells releasing too much glutamate and thus exciting the neurons in the auditory pathway and this is what we hear as tinnitus. So anything to bring down the level of glutamate is thought to help if this is your particular T mechanism.

There's a big thread about it on here started by Mock Turtle if you want to read up.

Discontinuing Benzos would have the effect of over-exciting neurons too. but then I expect they would calm down again over time as the body readjusts and makes up the lost GABA receptors.

You mentioned earlier about a hearing test that goes above 8khz, could you let me have the link? Thanks.

 

[RaZaH]

Here http://www.digital-recordings.com/
Select WWW Hearing test / Professional .
Im having problems running it now, Java issue ?

Measures 8,9,10, 11 ,12,14 ,16,18 20 Khz as well as higher resolution for the lower frequencies.
Due to the non-optimal environment and various types of headphones I suggest doing the test at slightly various levels and making multiple measurements to get an average.
Seems pretty spot on for me.


Here's another one with less resolution but at least goes above 8khz .
http://www.phys.unsw.edu.au/jw/hearing.html

 

[Louise]

Thanks RaZaH I will try these out tomorrow.

 

[mick]

RaZaH,

While you evidently are not in the US, I suggest that you report your bad experience with Clonazepam to the FDA, or similar such drug regulatory agencies elsewhere (maybe Iceland has something similar). Here's the link to the FDA's drug side effect reporting site: http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

Most doctors don't believe (or maybe they just don't care) that benzos can cause tinnitus. The more people report otherwise, the more likely the doctors will face reality.

mick

 

[Louise]

Its all over the net that Benzo withdrawl can cause T. Sort of common knowledge. I'm tapering mine very slowly to avoid this.

 

[RaZaH]

When you say its stops by reinstating , does that mean while you are on Benzos or for good ?

 

[Louise]

I've read that some people go back onto the Benzo and it stops the T. But they have to stay on the Benzo then. So, for life I guess?

 

[RaZaH]

Yeah, I guess. Having a really bad day , feel like eating all the worlds benzos . I just know that it's not a longterm solution as well it killing my ears for good.

 

[Louise]

I know RaZaH, know just how you feel. I'm sick of trying to deal with this thing and its only been 8 months. I'm taking Pregabalin now and that is an anxiolytic preferred to Benzos as there's no tolerance building. Next week Im tapering off the Benzo so I'll just be on Pregabalin and off the Benzos.

Its a b*stard this T. I read the other day that someone say T is a mental injury and so takes a long time to heal. Think they were right.

Chin up RaZaH, I hope you feel better than this tomorrow.

 

[Plucky]

Your doctor should be struck off for that information. You have to taper off a Benzo very, very slowly.

So it caused hearing loss because you quit so suddenly. I wonder what the mechanism could be that would cause that? Terrible for that to happen.

I will be stopping mine very slowly and its only 0.5mg each night which Im told is a small dose. I am going to reaearch how to taper properly.

Usually T sufferers steer clear of MSG as it makes T worse. Its a 'neurotoxin' and over-excites neurons. There is a theory that (some) T is caused by the hair cells releasing too much glutamate and thus exciting the neurons in the auditory pathway and this is what we hear as tinnitus. So anything to bring down the level of glutamate is thought to help if this is your particular T mechanism.

There's a big thread about it on here started by Mock Turtle if you want to read up.

Discontinuing Benzos would have the effect of over-exciting neurons too. but then I expect they would calm down again over time as the body readjusts and makes up the lost GABA receptors.

You mentioned earlier about a hearing test that goes above 8khz, could you let me have the link? Thanks.

I have a prescription for clonazepam sitting in front of me and after reading all of this advice pro and con, cannot decide if i should take it or not. I was using it "as needed, especially at night. My T is high pitched and loud . The temptation is to follow the directions and take it three times per day but if the result is eventually having T that is worse I am not interested. Could you give me some advise?

 

[Louise]

I think I can. When I first started taking Clonazepam it reduced the T noise by a good 50% at least and it gave me a gorgeous relaxed feeling. I was taking it just once or twice a week (0.5mg) when I couldnt stand the panic any longer. Then I reached a point where I couldnt deal with the anxiety and for better or for worse decided to tak ehte Clonazepam every day (well, night). It worked on the anxiety for the first weeks but it lost its effectiveness on the noise. It stopped having any effect on the T.

I dont know if other people have epxerienced its effects on T noise wearing off after some time of taking it?

I wouldnt like to have been taking a higher dose (or 3 times a day) just to have the effects wear off after a few weeks anyway and yet be physically dependant on the drug.

There is evidence, and it seems to be widely known across the net, that Benzo withdrawl can cause tinnitus.

That's my experience of Clonazepam. It got me out of a hole but the effects it has on the noise dont last. The effect it has on anxiety last longer.

If you are only thinking of it for noise reduction then I dont think it would work long-term, or even for long. If anyone else has a different experience of it please chip in.

If you are thinking of it for anxiety relief then you could consider Pregabalin (Lyrica) instead. I started taking this about 3 weeks ago and it gave me back my life. Its amazing for anxiety, though according to my doctor it doesnt work on everyone. It is one of the drugs suggested for tinnitus when you research the net. But, for me its had no effect on my T noise at all. But I feel loads better than I did.

I hope some of this helps you Plucky.

Have you not had T for very long?

 

[Plucky]

I think I can. When I first started taking Clonazepam it reduced the T noise by a good 50% at least and it gave me a gorgeous relaxed feeling. I was taking it just once or twice a week (0.5mg) when I couldnt stand the panic any longer. Then I reached a point where I couldnt deal with the anxiety and for better or for worse decided to tak ehte Clonazepam every day (well, night). It worked on the anxiety for the first weeks but it lost its effectiveness on the noise. It stopped having any effect on the T.

I dont know if other people have epxerienced its effects on T noise wearing off after some time of taking it?

I wouldnt like to have been taking a higher dose (or 3 times a day) just to have the effects wear off after a few weeks anyway and yet be physically dependant on the drug.

There is evidence, and it seems to be widely known across the net, that Benzo withdrawl can cause tinnitus.

That's my experience of Clonazepam. It got me out of a hole but the effects it has on the noise dont last. The effect it has on anxiety last longer.

If you are only thinking of it for noise reduction then I dont think it would work long-term, or even for long. If anyone else has a different experience of it please chip in.

If you are thinking of it for anxiety relief then you could consider Pregabalin (Lyrica) instead. I started taking this about 3 weeks ago and it gave me back my life. Its amazing for anxiety, though according to my doctor it doesnt work on everyone. It is one of the drugs suggested for tinnitus when you research the net. But, for me its had no effect on my T noise at all. But I feel loads better than I did.

I hope some of this helps you Plucky.

Have you not had T for very long?

Hi and thanks- this has been severe since mid jan. I was taking Xanax at first but at one point that seemed to have no effect at all, made it worse at one point so a trip to the doctor at the Hospital sent me home with the Clonozepam which I was hoping would be the solution. I read about the study on the ATA site that recommended taking it for five weeks but now, after reading this topic on this forum I am afraid of it. I really am at my wits end with this. The audiologist warned me of this drug being addictive. I would rather deal with addiction than tinnitus but my fear is having the t come back and possibly worse? I can barely take it now. which brings up another question. Does this have the pontential to decrease over time on it's own or am I destined to be like this for the rest of my life? My wife has run off from me and friends too so I am all alone with this affliction and it is pure living hell without the drugs. Coping is difficult and fear is a huge component.
Frank

 

[Plucky]

Thanks for the lead on pregabalin. I will look into that.
F

 

[jazz]

Thanks for the lead on pregabalin. I will look into that.
F

Plucky,

Yes, you should look into the drug. It's good for anxiety, as Louise notes, and it's not addictive. That said, you need something to help you calm down. Everyone panics for a while--or longer! It's just normal. How else could anyone respond to a loud, annoying, unstoppable noise in their heads! But anxiety will make it worse. That's why--especially now--you need something to calm yourself down. Many people use anti-anxiety medications; others will use cognitive behavioral therapy or some other type of psychotherapy. Just know that you are not alone, and your response is normal. In time, you will adjust and get better.

I was a wreck for three months, then mine began to calm down, but it's still there. In the beginning, the most important thing I did was take time-released melatonin, 3 grams. It helped me sleep. Insomnia is common for most tinnitus sufferers, especially at the beginning. Not sleeping is another thing that makes tinnitus unbearable. You can't think straight when you're tired, and you focus more on negative thoughts. At least, I did. Just do a search on melatonin on the board. You'll find that other people benefitted, and there's been research studies on the drug. But if you take Pregabalin tell you doctor about any OTC drugs you're taking, including melatonin, if pertinent. Drugs will interact with each other, and it's better to be safe than sorry.

Be sure to enrich your environment with sound. Many people will play nature sounds on their iPods, computers, etc. You need something in the background that will help distract you from the noise. And most people I've spoken to sleep with background noise. I sleep with water sounds. Some people like crickets. Keeping yourself immersed in sound--especially at the beginning-- 24/7 is a big anxiety reducer. Just don't expose yourself to loud sounds, obviously! Keep the sound loud enough to distract, but not overwhelm.

Many on the board will say that tinnitus gets better over time. Mine did. But I still had spikes and many bad days. Lately, I've had another big improvement from getting hearing aids. They help about 40% of people, but in the tinnitus world--that's a lot. When you feel better, get your hearing examined. If you do have a loss, even if its considered 'mild,' then choose a hearing aid that helps people with tinnitus. I use Starkey Xino; but many others like Widex Zen. (The former is less expensive, but it's also a preference difference.) Hearing aids are one of many things to do to help your tinnitus. Plus, you're still early in the disease. Your ear might heal, and the sound might go away. You need at least six--some say 12--months before the tinnitus is probably permanent, and even then you will eventually habituate. When you habituate, the tinnitus will no longer matter. That's what I'm trying to do.

One more thing: how did you get the tinnitus? Was it from a drug or noise or barotrauma? I wonder if HBOT works for some injuries rather than others. In addition, you might look at the clinical trail for AM-101. This drug is supposed to stop tinnitus in its tracks. But it should be taken within three months of the trauma. That said, one person on this board took it a little later and still got good results, though is not cured. Just search for AM-101 on the board. There's so much great information at Tinnitus Talk !!

 

[Plucky]

Thanks for your reply. I got it over a long period of time while being exposed to loud music. I always recovered over night or at the most by the middle of the next day then one night it was just whoosh up to an intensity that I had never encountered- and it didnt go away. Now I sit here surrounded by theses guitars and the Vox amps I loved so much and will probably never play them again. I know that it is my own fault but what a cruel price to pay. Then I see these old cats on tv just wailing away in front of stacks, no earplugs, I just dont get it. It wasnt like I was out playing every night either. I have read that there is an emotional component to tinnitus that has to be recconed with, that it occurs as the result of an emotionally unhealthy brain and I can tell you that I have suffered great loss in my life over the past couple of years so maybe this is something that I should be dealing with simultaneously. Part of it was loosing my job and now cant afford all of the professional services that I require. This is a lonely place to be, isolated with conflicting opinions everywhere and a general lack of sympathy or understanding that makes me consider ending my life so your words of encouragement here at three o'clock in the morning are very valuable to me. I was a person who loved life and in spite of loosing my home and job was able to rise above it because music and literature saved me now even that is gone. Frank

 

[Plucky]

I am surrounded by sound machines. In every room there is a different version of a waterfall or waves crashing. What woman is going to put up with this? I had intended to shut off cable tv because it was just junk and costing 150 a month but now must rely on that nonsense to some extent too. I am thinking that sattelite radio might add some intelligent conversation to the room. It has been cold here since jan. and confining. I take long walks when the T is bad and I can swish the arms of the coat fabric against the body of the coat to create a distracting noise. I walk around in the bitter cold like this for as much as eight miles sometimes just to exhaust myself. I have to get a job in order to survive but how can I work if I have not slept or am groggy from this drug. I hit a tree with my car yesterday, no big wreck but proved to me that I should not have been driving then a minute later I hit a garbage can. It's good to have this forum where people like you are understanding and helpful. I had read about am 101 but thought it was only in trial and not available. Do you know how to get it? I am certainly interested. The hospital seems to want to steer me toward neuromonics which is five grand which, because of the other treatments I've tried, I no longer have. Plus I have read here or on some other thread that it is "useless" so I am wary of that too. In the meantime my funds are getting low so I am selling off my lifes posesions on ebay. The unpaid bills are piling up. I cant stay ahead of them. I was considering moving back in the house I grew up in with my parents but they dont seem to want to lift a finger to facillitate the move, as I asked them to fix one of the showers at least and get the washer and dryer repaired. When I offered to have it done I was told to 'stay out of it" so I'm staying out of it and three months have gone by so looks like no help on that front. I am afraid of being institutionalized by the state at some point once this spiral reaches bottom.

 

[Plucky]

i tried to find reference to am 101 here but got an error message, any advise?
Frank

 

[Louise]

Hi Frank, its heart-wrenching reading your pain. We do have a lot of similarities. The financial difficulties, loss of job and dealing with everything alone (except for the good people here) also the cause - noise trauma that could easily have bben prevented.

I'd like to try and help by talking about several of your points....

The easiest is the search for Am 101 on here, there's validation in the search field that it has to be a minimum number of characters. Try Am101 with no spaces, that should work better but may not bring up all references. I dont know if they are still trialling this drug. You could Google it and try to find out there or our member Fish has had it so he might chip in.

Music is obviously important to you and I know you feel like you wont play again but there are many, many musicians on here who have gone through that feeling and then started to play again, albeit with proper earplugs in. They still enjoy it like they used to. Its not over! You dont feel like doing it now that's all. But, in time you will. Also the literature. Many T people cant concentrate at first and so reading is difficult. But with time it comes back. One guy on here said that one day he found he could do complicated maths again without any trouble at all, but in the beginning he couldnt.

I've also read about the emotional component of tinnitus and that people who are already depressed etc are more susceptible to it. I too had a lot of stress/heartache before I got it (from one night of overly loud music) and do wonder if that made me more vulnerable to it. Its a good idea to do anything to help the mind. I had something recommended to me recently and it really makes sense, although I havent bought the book yet, its called 'Living Well With Pain and Illness'. Its based on 'Mindfulness' which some guy is using in the UK to help tinnitus people. You might not be into that sort of thing but I thought I'd mention it. There is another guy here in the UK who uses Cranio-Sacral Therapy to help T people and he's written an e-Book which I have. He puts the emphasis on getting things into your life that enrich you and make you feel better rather than concentrating on getting the T out.

I laughed a little when I read about the coat swishing whilst walking, I have used that exact technique to mask the noise. Perhaps we should patent it?

I am out of work too and for 3 months couldnt work I was so bad. But, then came Pregabalin and now I just about feel up to working. I also need to work as there is no-one else to support me. You said that fear was a large part of this for you. Pregabalin took that away for me, for the most part. It may even reduce the noise (it didnt for me) as its an anti-convulsant.

Sleep is important and especially if you have to work. I use Remeron. I take 7.5mg and after taking it for 4 months, still within one hour of taking it I am falling asleep. It drops you like a stone and mostly keeps you asleep all the way through the night. I hate taking drugs as much as anyone but there was no way around it for me. I'm not groggy with any of the drugs I take, except for Clonazepam.

Like you, I also feared institutionalisation as I spiralled down. I couldnt believe what was happening to me and I was very scared of how I'd gone. I thought I was losing my mind. Thats when I took Clonazepam regularly (0.5mg) at night, but before the effects of that wore off (as they do after not too long as your body builds a tolerance to the Benzo) I was on Pregabalin.

You could try the Clonazepam, just 0.5mg at night though not 3 times a day, and maybe take it once or twice a week when you need a rest from it all. Its a Benzo like Xanax and you've already taken Xanax in the past. I tried Xanax and thought it was rubbish. Clonazepam works though. But, unfortunately not forever

Good luck Frank and you are definitely not alone with all these thoughts and feelings you're having. Not alone at all. I really think Remeron and Pregabalin (Lyrica) would help you a lot.

 

[Plucky]

Thank you dear for taking so much time for me. I know you have been on this site for a while and know the ropes. I will do what you recommend because it seems like we have the same story only you are a bit ahead of me. So the Clonazepam is similar to Xanax, I will expect nothing more. and you don't suggest taking it 3X per day over 45 days. I got that from a study somewhere on the ATA site. You have to sift through everything you read, and being in a desperate state you think you are finding the miracure cure each time. Now my obsession will be am 101, which I had read about but only as a closed study, nothing about results or availability. Heres something else to ponder. I believe that the longer I am in my car, the worse the T gets. I noticed that on the train too. I took another car out of storage yesterday to drive it is a 55 yr old car so I am hoping there is less electronic interferefnce, influence on the T . Am I nutty or is there possibly some relevance to this? I hope your day goes well. I have to craft a resume, something that might land me a job within walking distance of my apartment because I, at least for now, cannot see myself as a responsible driver after nights of hell or drugs. I will look for Pregabalin and Lyrica, and I thank you for you kind words
Frank

 

[Louise]

No problem Frank. We are all here to support each other. Can I pick up on a few points from your post....

We do have a very similar story. Thats why I'm really hopeful that what worked for me will also work for you. I'm not out of the woods completely but I am in a far better place than I was. And its through the drugs.

I think taking Clonazepam 3 x a day would quiten the T right down and leave you in a blissed out state. But what happens after 45 days? All Benzos start to lose their efficacy as the body compensates. So, its not a therapy that can be used long-term. Its a shame I know! The trouble with Benzos also is that you can get 'rebound disinhibition' which means that once the Benzo is gone the neurons get even more hyperactive than they were before the Benzo. This is because the body compensates for the Benzo action by reducing the number of GABA receptors. So once you get off the Benzo you are left with less GABA than you started with hence the greater hyperactivity.
Pregabalin is supposed to be non tolerance building so it keeps working at the same dose.

I dont blame you for trying for AM-101. Why not? Although I think its more useful in the one-off type of trauma like I had or like someon would have in a blast. Yours is a gradual build up. But, you should still seek it out.

Another thing we have in common - 'reactive tinnitus'. This means that the T reacts to noise. I have to be careful. Even noise that was 'normal' before affects my T. For example a bustling, noisy restaurant. Cant go there now. Or if I did I would have to wear earplugs. I wear plugs in the car if I'm going on a motorway or other fast road as the noise is too much. So, you're not going nutty. Its bad for T to go over the top with earplugs and when you become calmer you'll know when they are needed and when not.

"I, at least for now, cannot see myself as a responsible driver after nights of hell or drugs."
Remeron and Pregabalin dont make me feel drowsy so you may be ok on these and you wont have the hell when you're on them so driving might come sooner than you think.

Good luck x

 

[Plucky]

Ok, then I need to rethink my whole strategy and rather than to try and cure it with clonazepam I will try to just endure without taking it, taking what you suggested instead because in the long run the clonazepam has no real benefit. This is disappointing to say the least but at least now I have a clear plan. I question why my doctor didnt explain this in the first place even after my explaining to him that xanax seemed to make it worse. I , we, have to question everything, every move, because ultimately we could be making a big mistake. I am composing a resume today. I will be applying for a job in a rather quiet environment. Now I wonder if I should even try for the job. Everything simple now seems potentially fraught with peril. I pray that yours just spontaneously goes away
Frank

 

[Louise]

No, Clonazepam wont cure it. Where did you read that it could? It does reduce the noise in some people (did for me) but definitely doesnt keep working. You could always try one just to get a break from it. Just dont take it every night. There are some others on here who use Benzos like that.
Doctors arent experts in anything I've found. We know more about some subjects than they do because of the amount of research we do.

I know what you mean about making a mistake, Ive made some with noise and made the T worse than when it started. Then there the fear of taking drugs in case it makes it worse. Life can centre around tinnitus. The thing is that we are supposed to do the opposite of that. I think that's only possible after a while though and after anxiety is in check.

You could try for the job, get some money in and then buy some over the ear maskers for the quiet environment. That's what I plan on doing. You might then be able to buy hearing aids with maskers in. Thats what I want, I want the Starkey Xtinos. Something to aim for Frank. We have to keep strong buddy!

 

[Plucky]

I appreciate you here, Louise, so far away and helping me. It is another lonely night here with T and I am going to try to sleep without taking anything. The T is loud but not too loud so maybe I can do it by laying next to the "ocean waves" sound simulator. I did look up the guy who was trying the am 101 and there was never any follow up from him. I couldnt figure that out, no conclusions from that. Here's something interesting that happened to me about a month ago. I was sleeping- and under the influence of xanax and steroids and I was having this very vivid dream and at the same time I became aware that the T was gone- in the dream it was completely quiet and then the next thing you know I woke up and it turned on just like a switch. It made me wonder about how this is connected to thought process and subconsious thought and made me wonder if hypnosis would work. I know the Kevin Hogan book promotes that avenue as a treatment. What have you heard? I am trying to keep strong my friend. It was another day confined by cold weather but I took another marathon walk in spite of it. People are commenting that I look like I am losing weight. I've lost around 16 lbs from the walks so far I guess and maybe not eating enough either.I am losing people around me friends don't understand it and just fade away, don't call. None of the guys from my band ever write or call either so I guess I was just a tool for them. The singer even had the nerve to email me and ask did i know any other guitar players who play 90s rock. I couldnt believe it. Nobody takes this seriously as serious as it is, and I heard my dad telling someone that Im having pain in my ear, no understanding whatsoever in spite of me dropping off ATA pamphlets for them to read. They probably didnt even read them. When I get to the audiologist I will ask about the hearing aids, see what they say. I go to Jefferson Hospital in Philadelphia and it seems like they are pushing the Neuromonics masker there. I have read that that is worthless too somewhere on the internet. Maybe your approach is best, go without drugs, try to acclimate and just wait it out and keep searching but there are times, and today was one of them, where I was feeling like my life is completely ruined now. The last vestiges of enjoyment, music and reading, now taken away from me and my peaceful environment now filled with strange background noise and tv movie dialogue. Sorry if I am rambling. How was / is your day going? Do you do anything that is distracting and fun? I have been cooking more and it seems to be pretty good therapy. Plucky

 

[mick]

Plucky,

You might try self hypnosis. I believe Kevin Hogan did that, and I've read of many others who have found it beneficial. I have not tried it, but I talked to someone who does provide hypnotherapy for a variety of things. Even as a practitioner he said he does not really know how it works, but for some people it works wonderfully. He said really all hypnosis is is relaxation, so you might even try working on that first. Walks are definitely good for that.

I'm sorry to hear that your people support system is not where you would like to be. That is something too that can help keep stress and anxiety at bay. Stay plugged into this forum, and I think you'll find plenty supporters. It is such a shame that the general population, and doctors in general, don't understand how devestating T can be.

Hang in there and keep the faith. The vast majority of T suffers find things get better with time. I am not saying that the volume/severity of the T itself will noticeably diminish, though for some people it does, but most likely you will find your ability to deal with it improves with time. Mine is like that. At first I thought I would never be able to live with this sound in my ears/head, but I have, and it has become easier with time. I still wish I didn't have T, but it is no longer the big awful beast that it was at the beginning.

mick

 

[Louise]

Thanks Frank. No problem on the 'helping'. I am trying to help, we all do, but for me with you it's that you sound so similar to me. What you're going through is what I have gone through. But, I've used medication, (it makes me feel slightly better to call it that than 'drugs' it seems a kinder term and makes me feel less sort of guilty!), to get away from that place. I had to. Did you manage to sleep with the ocean waves? Do you feel strong enough to carry on trying to sleep without aid? I use Remeron for that (just 7.5mg) it works very well. When I first started with it and it worked then the sleep issue was solved and that was a big weight off me. Its also an anti-depressant and a psychiatrist told me "a very, very good drug". Though 7.5mg isnt enough to give the anti-depressant effect.

The dream thing that you mention and the mind connection.... I've had something happen just a few times that has made me question the mind connection and whether I'm keeping this alive myself..... Very infrequently I've had a morning where I've woken up and T doesnt happen to be the first thing on my mind and in that half and half state between being asleep and awake I've been sort of thinking about something else and I dont hear the T until I remember I've got it and almost 'look' for it. Its only for a few seconds that this happens and it hardly ever does happen. I think that must be what habituation is like. Are you familiar with Habituation Frank? Amongst all the things I've investigated, now its Habituation that gives me the most hope and comfort. That one day this noise wont bother us at all even though its still there but we wont consciously hear it as the brain doesnt care about it anymore.

Hypnosis can work well for some people with T. Its definitely worth a try. I've tried it in the past for other things and found that I'm a terrible subject for it, I am too aware and never 'go under' enough. But some people respond to it fantastically well. I'd give it a go Frank. But, you'd need to have a few sessions to give it a good chance (I am always too quick to dismiss something if it doesnt work immediately! No patience ).

It sounds like your walks are doing you some good! You must eat though. When I 'crashed' I didnt eat for 3 days then I had to force myself. The Remeron sorted that out as it stimulates the appetite.

Its sad that the people around you dont understand the condition. People can be so self-centred and cant put themselves in the position of another human being ie. no empathy. I wonder if the people who are drifting away from you would like the noise in their head 24/7? Makes me angry! You'll end up with a small core of real friends, the rest dont matter. Reach out to this small core, dont be afraid to do that. They could think that you want to be left alone otherwise and you dont. Make that clear!
That lead singer has a nerve!! How insensitive!! You'll get back into your playing one day, you will, lots of others on here have done Frank. You will too, its just a matter of time. I know time will be passing slowly, but it is passing. You'll come to your point of being able to cope and then go on to put things back into your life that were there before T.
I wonder if your Dad thought it simpler to just say you had a pain rather than go into what tinnitus is? A lot of people have never heard of it.

I too have to fill the rooms with sound. I have always disliked noise and enjoyed the quiet. I have a lovely view and I used to like sitting in the quiet looking out. That's gone now. But, since the Pregabalin took hold I just feel that I have to make the best of what I've got. I think there is a 'mourning period' with T where we grieve for what's been lost. That takes time to pass. Then you pick up and 'get on with it' just making the best of what you have. I wanted to die, I was thinking of it properly and thought it was the only way. I really thought it was the only way and was thining about it in real terms. I think because I went through that I am now more appreciative of what I do have left, if that makes sense.

Another coincidence, I like cooking to take my mind off T! When I have the fan oven and other appliances going I cant hear it either so I do like to spend time in the kitchen! My sister always comes to me for Sunday Lunch so I always do a starter and a main so that I am in the kitchen for as long as possible!

Do you have another marathon planned for today?

 

[Plucky]

Plucky,

You might try self hypnosis. I believe Kevin Hogan did that, and I've read of many others who have found it beneficial. I have not tried it, but I talked to someone who does provide hypnotherapy for a variety of things. Even as a practitioner he said he does not really know how it works, but for some people it works wonderfully. He said really all hypnosis is is relaxation, so you might even try working on that first. Walks are definitely good for that.

I'm sorry to hear that your people support system is not where you would like to be. That is something too that can help keep stress and anxiety at bay. Stay plugged into this forum, and I think you'll find plenty supporters. It is such a shame that the general population, and doctors in general, don't understand how devestating T can be.

Hang in there and keep the faith. The vast majority of T suffers find things get better with time. I am not saying that the volume/severity of the T itself will noticeably diminish, though for some people it does, but most likely you will find your ability to deal with it improves with time. Mine is like that. At first I thought I would never be able to live with this sound in my ears/head, but I have, and it has become easier with time. I still wish I didn't have T, but it is no longer the big awful beast that it was at the beginning.

mick

Thanks, Mick for writing. The only attempt I've ever made with hypnosis failed and it was in a show, onstage and I was one of the first people that they pulled from the group so I wonder if i would be a good candidate. There is a guy over here who uses it as part of his psychiatric practice but the intake appointment costs 250 which I don't have right now but will be saving up funds to give it a go. Yes it is a shame about people especially the ones youve been with in their time of need, sat and held their hand at their bedside and now it's like it is all forgotten. My brother comes to mind laying there near death we thought after a car wreck and he hasnt even called or emailed me once. I guess people just don't perceive the seriousness of this affliction. I would rather think that than to think that they don't care. Either way it is no help when you are suffering with this. As far as acclimating to this loud noise, I believe what you are saying but I don't believe ,ultimately, that I will be able to continue living with this at this volume. That is the way I feel now but I do appreciate your words of encouragement. There are good people on this site and I hope we all get better at some point

 

[Plucky]

Thanks Frank. No problem on the 'helping'. I am trying to help, we all do, but for me with you it's that you sound so similar to me. What you're going through is what I have gone through. But, I've used medication, (it makes me feel slightly better to call it that than 'drugs' it seems a kinder term and makes me feel less sort of guilty!), to get away from that place. I had to. Did you manage to sleep with the ocean waves? Do you feel strong enough to carry on trying to sleep without aid? I use Remeron for that (just 7.5mg) it works very well. When I first started with it and it worked then the sleep issue was solved and that was a big weight off me. Its also an anti-depressant and a psychiatrist told me "a very, very good drug". Though 7.5mg isnt enough to give the anti-depressant effect.

The dream thing that you mention and the mind connection.... I've had something happen just a few times that has made me question the mind connection and whether I'm keeping this alive myself..... Very infrequently I've had a morning where I've woken up and T doesnt happen to be the first thing on my mind and in that half and half state between being asleep and awake I've been sort of thinking about something else and I dont hear the T until I remember I've got it and almost 'look' for it. Its only for a few seconds that this happens and it hardly ever does happen. I think that must be what habituation is like. Are you familiar with Habituation Frank? Amongst all the things I've investigated, now its Habituation that gives me the most hope and comfort. That one day this noise wont bother us at all even though its still there but we wont consciously hear it as the brain doesnt care about it anymore.

Hypnosis can work well for some people with T. Its definitely worth a try. I've tried it in the past for other things and found that I'm a terrible subject for it, I am too aware and never 'go under' enough. But some people respond to it fantastically well. I'd give it a go Frank. But, you'd need to have a few sessions to give it a good chance (I am always too quick to dismiss something if it doesnt work immediately! No patience ).

It sounds like your walks are doing you some good! You must eat though. When I 'crashed' I didnt eat for 3 days then I had to force myself. The Remeron sorted that out as it stimulates the appetite.

Its sad that the people around you dont understand the condition. People can be so self-centred and cant put themselves in the position of another human being ie. no empathy. I wonder if the people who are drifting away from you would like the noise in their head 24/7? Makes me angry! You'll end up with a small core of real friends, the rest dont matter. Reach out to this small core, dont be afraid to do that. They could think that you want to be left alone otherwise and you dont. Make that clear!
That lead singer has a nerve!! How insensitive!! You'll get back into your playing one day, you will, lots of others on here have done Frank. You will too, its just a matter of time. I know time will be passing slowly, but it is passing. You'll come to your point of being able to cope and then go on to put things back into your life that were there before T.
I wonder if your Dad thought it simpler to just say you had a pain rather than go into what tinnitus is? A lot of people have never heard of it.

I too have to fill the rooms with sound. I have always disliked noise and enjoyed the quiet. I have a lovely view and I used to like sitting in the quiet looking out. That's gone now. But, since the Pregabalin took hold I just feel that I have to make the best of what I've got. I think there is a 'mourning period' with T where we grieve for what's been lost. That takes time to pass. Then you pick up and 'get on with it' just making the best of what you have. I wanted to die, I was thinking of it properly and thought it was the only way. I really thought it was the only way and was thining about it in real terms. I think because I went through that I am now more appreciative of what I do have left, if that makes sense.

Another coincidence, I like cooking to take my mind off T! When I have the fan oven and other appliances going I cant hear it either so I do like to spend time in the kitchen! My sister always comes to me for Sunday Lunch so I always do a starter and a main so that I am in the kitchen for as long as possible!

Do you have another marathon planned for today?

Hi Louise! Yes! it will be marathon time at some point. I try to walk away from the center of town (where I live) and out toward a little pond where there are ducks and geese to admire then I take any of a number of circuitous routes to get back- always including a few hills. The ambient sound outside is helpful and you know about the sleeve swishing one can add if needed. Last night I slept ok but never made it to bed, I just got really tired on the couch and shut the tv off and heard the radio on the classical station in the next room and I made it, didnt take a pill and slept, not entirely sound, but slept through. How was your night?

I know about habituation and to me it is like the doctor who first told me to go home and learn to live with it. I am not sure if that is going to work for me. To me, at this point anyway, life, as it is defined now, is physically unbearable and has no point. Everything I do includes this tremendous interference and it saddens me, there seems to be no quality to life at all if everything I do from here on out is going to include this horrible noise. So- my approach is not to give in to it but to be completely proactive and determined to either beat it or eliminate it or go. I find hope in what I read about in medicine and research and hope too in the off chance that it will die down or go away one day completely by itself. In the meantime my day is an affort at trying to work around it while it is here. I have had days that were better than others, some that were actually pretty good probably through the residual effect of the drugs but there was always the fear that the T was coming back and it always did so then it was time for another pill. My next strategy is to get through the rest of this weekend and then go shopping for the pills you recommended to me to have here when needed. Today is already difficult.

I am thinking that I am not a good candidate for hypnosis because in the one and only attempt I had with it failed but that was a long time ago so I will try it again. It's the money issue here that has prevented me from trying that and other therapies.

I hope that this is not a violation of T talk etiquette but I want to express my gratitude to you for what you have done for me here by helping me in the most difficult time in my life. I hope it is not a burden to you to listen to so much of what I say that is negative as it is all mostly negative. I can assure you I was once a happy and normal guy with varied interests who enjoyed life and all of it's great gifts to us and very aware and able to express my joy for it all. It is only now that that part of my personality is submerged by and preoccupied with this terrible affliction.

As your T is the result of one event it is likely that it could just resolve itself as I am sure you have read . I hope that happens for you. Lets just keep at it , keep reading and learning and supporting each other.

My big plan for today, aside from creating a resume is to make a big green salad with some fresh veg and including apples, maybe with blue cheese even.
Frank

 

[Louise]

There's honestly no need to thank me, but thankyou anyway Its not a burden at all to listen to how you are feeling. A lot of us have been there, are still there. We all understand it Frank.We understand how T can make life feel unbearable and ruined. But, your 'good days' are evidence that it wont always be this bad for you. You are doing the right things by being completely proactive and having the fighter attitude.
T took my personality away for months before I got the Pregabalin. It was one of the worst parts of it. I'd always been one to have laughs and deliver good one-liners, humour meant a lot to me, but it went completely. Then I couldnt believe it when I started to have little quips with my fellow man when I was out shopping or something and when I once again could share the laughs I have with my sister. T does get me down still and nowadays I swear at it but I seem to be coping now. One day your personality will shine through again and there wont be as much preoccupation.

About the Pregabalin though, you have to take it continously, its not like Xanax etc in that respect, you cant do it ad-hoc. I thought thats what you might be thinking from what I read in your post.

I understand what you are saying about habituation and when I first got T and started all my research I laughed and sneered at it and binned it completely. I wanted this noise GONE and nothing else but that was going to do. But, after nothing I tried worked and I had my 'crash' I would rip someone's arm off to have Habituation. Not being bothered at all by the noise is good enough for me. People go for hours and days not hearing the T. I emailed the TRT centre to ask about my own noise, as its very irregular sounding, not a constant tone, it moves like a snake or something. Jonathon Hzell himself replied and told me "TRT works on ANY noise, regardless of type or volume". I have to believe that. I've also been told by a very good hearing therapist that "the natural course of tinnitus is one of habituation" that its just natural that in the end we will habituate it. When you are ready this might give comfort.

There was a poster on here called Laperson who wrote a post that gave me heart during the bad time and he explains the suffering very eloquently. I cant find the post on here anymore to just post the link but I copied the text to my desktop to re-read and so will paste it here for you at the end of my post.

Enjoy your walk and ducks & geese, swing your arms and hopefully there'll be some nice wind noise too

Speak soon x

Laperson's post.............

I've had Tinnitus for about 8 years. It is truly the strangest thing I have ever encountered and for some the onset of it will send you threw a life you could never imagine. A lot of people wont understand what you are going threw and the only time they may try to relate is when you talk about it with them. The moment the conversation ends about what you we are going threw is the moment we continue to suffer alone with the ones we love separated by a sound that puts a wedge in our relationships.

Relationships are bound by understanding each other and the affinity of thoughts we share, once the onset of my tinnitus began no one could understand why I was so depressed and miserable. I lost a lot with tinnitus my job, my wife, my friends and my love for certain things in life. Everything that I understood about life and related to in life had to be relearned and newly appreciated with a new constant. A constant high pitched noise

Sound is one of the senses closely related to emotion and when we don't understand where a sound is coming from and why it is happening we fear it. A startling sound we may hear resolves after a moment and once we understand any startling sound we fear it less or understand what to do when it presents it self to us.

I understand what everyone is going threw with tinnitus 100%. I wanted to kill myself and hit one of the deepest depressions a human can endure, living minute by minute hoping it would go away and constantly suffering anxiety contemplating the ability to endure this sound for the rest of my life.

YOU WILL SURVIVE THIS AND YOU WILL BE HAPPY WITH OR WITH OUT IT, I PROMISE.

You must know I'm here with tinnitus and it has become a small stress in my life compared to what I prepared to do years ago to end the noise and many of you know exactly what I am talking about. There are many things that stress us in life and this may very well be one of the hardest things a person can endure besides a constant strong physical pain that only morphine can ease but with the severity of this condition there is truly a way to live life happily with it and find it normal.

Sometimes it will get louder sometimes it will get softer and sometimes it will seem like it's not there. Concentrating on the fix or what we did at the moment it seemed less is just chasing our tails looking for the answer and piles on more stress. I suddenly let go of that and said I don't want it to go away I want to learn to live with it because if I can then I am certainly strong and know that I have overcome something many cannot and if I do then I will surely let others know that it is attainable to feel good even with it right by my side

I will not hate my tinnitus nor will I love it but slowly I have become indifferent to it just like I am indifferent to the t cells that roam within my body. We will not forget it but we can pay it more attention. I use to be afraid to say to someone "you must accept this" knowing I would have to live by my word and do just that, start to accept it as my tinnitus. I will have it now, I will have it a few minutes from now, I will have it an hour from now, I will have it tomorrow, I will have it next week and next year and if I don't well my life as I know it now will not be normal.

I will have it with all of you and that is why I titled this Hello Family

God Bless Us All!

Michael Lapers

 

[Plucky]

If you can accept that, Louise, you are stronger than I am. I live with hope that this will get quieter or go away. That is the only way I am able to live at this point. I don't see any compromise or accepting it as a way to have any quality of life that would be worth living. This day went bad. I think I was still operating with some of the clonazepam in my system and as it goes, severe anxiety plus louder T is returning. It's funny how I felt so confident after sleeping through last night and now half way into this day I am completely desperate once again.
Frank