Plucky's Life

[Plucky]

Ok Markku, so how do I talk to Louise now. I guess I don't really know how to navigate the site

 

[Plucky]

Also how do you receive response as email? thanks

 

[Louise]

Hi Frank.

Maybe Markku can split the last posts off into a thread in the Support forum for us and then we can carry on there!

If you 'Watch' this thread (its top right) then you get the choice to receive an email or not when someone makes a post.

I hope you are feeling ok today? Did you take any more Clonazepam? Did you think about Pregabalin?

I've unwittingly made my T worse yesterday so its been pestering me a lot today. It can still F off though, it aint ruining my life

Signing out for tonight (its 22:15 here) so speak soon.

 

[click]

Also how do you receive response as email? thanks

Hi Frank

If you click on Louise's picture to the left of any of her messages you will see a 'pop up' box.

Inside that box it gives information including the following:

Member Since: Aug 19, 2012 Messages: 869 Likes Received: 46 Trophy Points: 231

If you click on the number next to 'Messages' (ie. 869 if it was today) then you will be shown a full list of all Louises messages. Click on the one that you would like to see or reply to and you will be taken straight to the thread.
Alternatively, when you are on the first page of the site there is a link to 'Members' - you can click on Louise's avatar (picture) from there too and again reach her messages.
Another way, from the first page of the site, is to click on 'Recent Activity' - see arrow below - this will give you all the latest postings... just look for Louise.

We are merged and moved to the correct landing spot by the head man - but it's mostly painless ... ouch

 

[Markku]

Plucky: you now have your own thread. Feel free to discuss anything you want in this thread... chronicling your daily endeavors.

 

[Louise]

I have an email in my Inbox saying Click replied to the Clonazepam thread, when I took the link to view it it took me to the Clonazepam thread where Click indeed has not posted. Just found this by looking at my alerts.

Anyway Frank, how are you today? My T is UP, in BOTH ears so its not peachy for me at the moment. It can still F OFF though

 

[Louise]

And thinking about it, Frank probably wont be able to find us on this thread. I'm going to PM him.

 

[Markku]

He doesn't seem to have been online today (Last seen: Yesterday).

 

[Louise]

I've PM'd him and told him where this new thread is. He wouldnt necessarily know where to find it. Clicks post mailed me under the 'Clonazepam' thread still. Hope he hasnt been put off by being booted off that thread. Its a bit worrying he's not been on.

 

[Markku]

Hope he hasnt been put off by being booted off that thread. Its a bit worrying he's not been on.

I hope not. It wasn't the intention.

Thinking now, I could have let the talk continue there and move the posts at a later date once Plucky would have learned the ins and outs of the forum platform.

Well, I hope he returns and didn't take it the wrong way.

 

[Louise]

Well, he was very vulnerable. I knew we were off topic but he needed help so I wasnt going to mention it. Hopefully he'll be back, at least when that link to the PM lands in his email

 

[click]

Hope he's ok. He seemed to kind of panic when he thought he wouldn't be able to find you Louise. That's why I posted the things above but I probably confused him even more.. if he found them!

Don't worry Markku - I'm sure he'll find his way back in.

I can't do it... stay on topic... one thing drifts to another and there you go ... off topic.

 

[Plucky]

Thank you for finding me. There I was telling my mom about my new friends when you all vanished on me. I am not very website savvy so forgive me if I'm off course at times. I gave in to Clonaz last night because, well, basically I was falling apart. I received a call from my doctor this morning concerning the Pregabalin and Remeron that Louise recommended and he told me I would have to see a neurologist because he only prescribes xanax and clonaz for tinnitus. So I gave in last night, took the pill and slept and I still woke up during the night . I had left the radio on and then it kept me awake but I couldnt get up to turn it off. Then I was so groggy this morning just laid on the couch till ten. I was supposed to be putting a new resume together today, but realized that I am in no shape to go to work,to interview, to work for anyone. So what do I do? I have all of these issues job, relationship, rent, all compounded by the T in a vicious way. I talked to my audiologist at Jefferson Hospital today and she suggested I might benefit from a hearing aid , said there was a chance because of deficient hearing in my left ear. It would cost 5,000 so I guess I'll be selling my car. The other program she was talking to me about was Neuromonics, also 5,000. I wonder if any or either of these are the route to go. I'll go down there to be evaluated and hear more detail on april 29, but she insists I see their psychiatrist first. I'm also going to a psychiatrist here who uses hypnosis, going to see what he's all about on april 19th, So a lot has gone on since I've been away from you guys. What are you up to?

 

[just1morething]

I'm 5' 9 ". I am not sure how tall Louise is lol. Louise is 6 hours ahead of CST in UK. Pardon the joke.
Glad your back Plucky ! I hope you are coping OK and were all here to help each other. Did you figure out the inbox for Louise ?

 

[Plucky]

Ok, Now I've got it -this "thread" See? I'm really really not with it and sorry for breaking with the protocol the other day. I get to rambling on about my issues as if I own Ttalk, sorry. Nice to be back on and I just read the previous posts, and wonder how you are, Louise. I hope better. let me know

 

[Karen]

Plucky,
We're so glad you're back! I've been following your story, too, and am glad you are looking into so many different possibilities. With hearing aids, you would at least get a free trial, to see if they might work for you before you would spend any money. For some people, they work very well. I don't know much about Neuromonics, so I'll let others comment on that.

You're doing the right thing by checking out various treatments, and having a support system (like Tinnitus Talk) is good for you at this stage, too! We all understand what you're going through. We care!!

 

[Louise]

Ok, Now I've got it -this "thread" See? I'm really really not with it and sorry for breaking with the protocol the other day. I get to rambling on about my issues as if I own Ttalk, sorry. Nice to be back on and I just read the previous posts, and wonder how you are, Louise. I hope better. let me know

You're back, phew!! Thought we'd lost you there for a second, but we tracked you down, there's no escape from us now Frank!

Dont worry about any protocol or any 'rambling', you are not rambling, you are talking about something that's brought most of us to our knees just about at some point. You just carry right on, tell us what you like. And if you ever think you're rambling again just check out my previous posts, all 800 and something of them!!

 

[Louise]

Thank you for finding me. There I was telling my mom about my new friends when you all vanished on me. I am not very website savvy so forgive me if I'm off course at times. I gave in to Clonaz last night because, well, basically I was falling apart. I received a call from my doctor this morning concerning the Pregabalin and Remeron that Louise recommended and he told me I would have to see a neurologist because he only prescribes xanax and clonaz for tinnitus. So I gave in last night, took the pill and slept and I still woke up during the night . I had left the radio on and then it kept me awake but I couldnt get up to turn it off. Then I was so groggy this morning just laid on the couch till ten. I was supposed to be putting a new resume together today, but realized that I am in no shape to go to work,to interview, to work for anyone. So what do I do? I have all of these issues job, relationship, rent, all compounded by the T in a vicious way. I talked to my audiologist at Jefferson Hospital today and she suggested I might benefit from a hearing aid , said there was a chance because of deficient hearing in my left ear. It would cost 5,000 so I guess I'll be selling my car. The other program she was talking to me about was Neuromonics, also 5,000. I wonder if any or either of these are the route to go. I'll go down there to be evaluated and hear more detail on april 29, but she insists I see their psychiatrist first. I'm also going to a psychiatrist here who uses hypnosis, going to see what he's all about on april 19th, So a lot has gone on since I've been away from you guys. What are you up to?

I gave in to Clonaz in the end too Frank. I toughed it out for 2-3 months on just one or two a week. Then when I couldnt bear the panic feelings anymore I started to take it every night. I had no choice. Luckily before the effects of it wore off I found Pregabalin.

Its a psychiatrist you need to see for the Pregabalin, and in fact for any of the other drugs that are know to help T, normal doctors seem unwilling to prescribe, and psychiatrists love to prescribe drugs. Thats what all the others on this board and the other T forum seem to have done so I followed suit. I saw a 'private' (ie. I had to pay for it) psychiatrist to prescribe what I needed as I couldnt wait for the NHS to come up with the appointment. I was able to see this guy next day. Its a good job I did it as 2 months later I still dont have an appointment for an NHS psychiatrist and have found out that my referral was cancelled as Im already seeing an NHS counsellor for CBT!!! I'm outraged to say the least, CBT and psychiatry are not the same thing!

Anyway, you should be able to get Remeron from a normal doctor with no problem as its 'just' an anti-depressant. The effect it has on sleep is quite something and you get it at low dose (I cut a 15mg in half). It still working to 'put me to sleep' 4 months later. It really should give you your sleep back, it did for me and it does for another one of our members. If you can get the sleep sorted that will be a big support to you.

I was in exactly the same position as you re work. I had lost my contract in November as the boss didnt like me taking time off for the T (he was well known to be a pretty nasty person). Then I just crashed. Crashed. It was impossible to work then, I couldnt even go out on my own and I was shaking all the time. That lasted for nearly 3 months, with the odd Clonaz when I just could not take anymore. I was alone too, (as I live alone), with just a couple of friends helping out during the daytime when they could. Then, as you know, along came Pregabalin and within a week I felt I might be able to work again. I got stronger and have been looking for work for the last month. I have updated my CV again just this morning I do fear that I may not be able to concentrate well enough to do my job anymore (Im a computer programmer) but I have to brush those thoughts aside.

You will get to the point where you will be able to work again. You will. I went through not being able to and came out the other side. One of our Moderators had to take time off when he got T and then went back to work and now can completely ignore the T. I just want you to know that what you are going through is a well-trodden path and there is a corner to that path that you will turn, like others here have.

Im so glad you're thinking of hearing aids. Do you have hearing loss? Even if its minor hearing loss, aids can help T. Aids for T are normally 'combination aids' which means they also can play soothing noise into the ears. This is normally something like White Noise but which has been tailored to your own T to make it really comfortable and soothing. It can smooth out the T and for some reason is easier to listen to than the T. It also trains the brain to ignore the T and listen to something else. Starkey Xtinos are a good choice if you get the chance of those.

Anyway, I'll stop my rambling now, do let me know how you are getting on.

 

[Plucky]

Yeah, I'm back and good to hear from you. It's inspiring to hear you say you can go back to work. I don't know what I could do at this point workwise. I went down to the hospital and applied for a job taking trays (food) up to the floors and retrieving them afterward, I thought that would be ideal, no heavy responsibility or stress albeit low paying but they never called me back. That has been my only real effort and at this point I honestly don't think there is much else beyond that type of job that I can do. I felt so bad last night the T got so loud as the night came on and I had to go for the clonaz which was only minimally effective. It got me to sleep but only for four hrs. and I was filled with nervous anxiety when i woke up because the volume had not gone down. I put a sound machine next to me on the bed and turned it up and managed to half sleep until the sun filtered in then became too aware of the T again and got up, only too groggy to move so I went back to the couch and put the tv on, just layed there with my face buried in between the couch cushions. This is a battle and the bad days are bad and the good days are filled with fear of the next bad one approaching. I have things to do around this apartment. I have neglected things like never before so there are new unpleasant traits that I am recognizing in myself that were not there before. It is like I have given up on cleaning, cooking ,paying bills, throwing things away and corresponding with people, returning calls. I don't play music except to create background noise and I don't read anymore. I am not the same person i used to be. You said your T was up in both ears did it go back down? I hope so

 

[Plucky]

Plucky,
We're so glad you're back! I've been following your story, too, and am glad you are looking into so many different possibilities. With hearing aids, you would at least get a free trial, to see if they might work for you before you would spend any money. For some people, they work very well. I don't know much about Neuromonics, so I'll let others comment on that.

You're doing the right thing by checking out various treatments, and having a support system (like Tinnitus Talk) is good for you at this stage, too! We all understand what you're going through. We care!!

Yes, Karen, Thanks for the encouragement. I need it and all of the support from the good people here.The best people. I live with hope that something will work for me, willing to try almost anything to get my life back or at least some portion of it. It's a long wait here for everything medical plus lots of money that I am quickly running out of but the money hardly matters at this point. I would be quite content to live out of my car if it meant not having tinnitus.

 

[Louise]

Yeah, I'm back and good to hear from you. It's inspiring to hear you say you can go back to work. I don't know what I could do at this point workwise. I went down to the hospital and applied for a job taking trays (food) up to the floors and retrieving them afterward, I thought that would be ideal, no heavy responsibility or stress albeit low paying but they never called me back. That has been my only real effort and at this point I honestly don't think there is much else beyond that type of job that I can do. I felt so bad last night the T got so loud as the night came on and I had to go for the clonaz which was only minimally effective. It got me to sleep but only for four hrs. and I was filled with nervous anxiety when i woke up because the volume had not gone down. I put a sound machine next to me on the bed and turned it up and managed to half sleep until the sun filtered in then became too aware of the T again and got up, only too groggy to move so I went back to the couch and put the tv on, just layed there with my face buried in between the couch cushions. This is a battle and the bad days are bad and the good days are filled with fear of the next bad one approaching. I have things to do around this apartment. I have neglected things like never before so there are new unpleasant traits that I am recognizing in myself that were not there before. It is like I have given up on cleaning, cooking ,paying bills, throwing things away and corresponding with people, returning calls. I don't play music except to create background noise and I don't read anymore. I am not the same person i used to be. You said your T was up in both ears did it go back down? I hope so

I just cant let it stop me working. There'll be more ambient noise at work though as well, hopefully.

I think even a job like the one that you describe is better than not working. It would get you out and be distracting from the T.

I hate to hear about your awful night. Do consider Remeron. It could take care of that problem for you.

I also couldnt do the cleaning and bills paying at one stage. Its anxiety and depression. And, they are common with this affliction. The drugs do help. I could function again once I got on the Pregabalin.

You're right that its a battle. A battle of wills almost. My plan is to do TRT. I was PMing with someone from here who has done it and he said that now he hardly ever hears it and if he does he doesnt care. I asked if it used to really bother him and he said "it tormented me all the time", I asked if he was able to ignore it and he said "it was impossible to ignore". So, there's my hope, that I can get to that point too.

Yes my T is up and I dont have fluctuations, I've found when it gets worse it stays worse. So, I guess this is it. A new level of noise. Its coming in strange waves at the moment. I mustve relaxed a little too much when I played some music on Sunday. It was loud, but louder than I play the masking music. Must've been that. I'm upset about it but because of the Pregabalin I cant feel anxiety, which is great!
Just going to have to work extra hard at ignoring it and just carrying on.

 

[Plucky]

Hi Louise, Wow, why up- and staying? I don't get this, I am sorry to hear that from you. Just hang in there , like you told me to - hang in there for you, for your sister, for me and for all of us. I hope there is someone close by who can give you a hug. I know it sounds simple but sometimes I feel like it would be the best thing sometimes. Did you look into Plasticity? It is like a training session using sounds and, so it says, can reprogram our brain away from the T. I think I might try that before the neuromonics as a sort of trial run. I am just not sure about any of it, and you are right about the job, i really dont care what it is I do and I can get by here on very little, money wise, no too quiet work environment though. I am sorry to hear your volume is up and mine is too. I think what happens is that clonaz wears off over 24 hrs. and the intensity comes up to where it will always be. I pray not, It is very uncomfortable. You are right about changing the medication too and I will just hope it works long term, otherwise I don't know what to do besides digging for answers and hoping for a cure. I dont know what TRT is but will look into it. My T is really loud right now and I can spend more time outside today because its warmer, walk around which helps somewhat but the trouble is you know you are always coming back inside to face the noise. I have a plan to try to sleep outside on the porch when the weather gets warmer. What music were you playing sunday? What is pm ing ? like IM ing?, sorry for the dumb ?s, Write back ok? Frank

 

[Plucky]

Something else I forgot to tell you. Now, as the day wears on (and I guess the clonaz wears off) A headache creeps in, compounding everything else, not a massive one , feels like a tennis ball is stuck somewhere behind my nose. I have to wonder what potential effect this has long term on one's brain. I just received rough drafts of a last will from my lawyer, a sobering moment to say the least. Ive got to go now, put dinner together, fish, egg roll, salad. Frank

 

[Karen]

Hi, Frank,
I'm back home from work now, and I just wanted to tell you that I went through the same thing, when my severe tinnitus first started, about not being able to pay bills, run errands, read books, etc. I was so depressed, I felt that my whole life was over. Now, however, three years later, my tinnitus is certainly not gone, but I have found ways to cope with it.

I took a leave of absence from work because my tinnitus/pulsating tinnitus was so bad back then (2010). I'm back at work now, and it has really been good therapy for me. You're right; it helps to find work in some sort of sound-enriched environment. My office has some background noise (the heating and cooling system, I think) that makes it easier to concentrate and not really notice my T. Also, I love to read, and I am back to reading novels again! Try different therapies, drugs, and supplements that folks on here suggest, and I believe you'll find something that works for you!

I'm currently going to a chiropractic neurologist (it's a new field) where he is working on the neuroplasticity of my brain to help me control my tinnitus. My tinnitus is not gone, but it has definitely improved. Stay strong, and hang in there! Things will look better soon!!

 

[Plucky]

Thanks, Karen, That is all very encouraging, very. How long have you been going to the chiropractic neurologist? What degree of improvement did you attain and over what period of time? I have not heard of this in my area but will look into it along with everything else I am sifting through Frank

 

[Louise]

I dont know why mine goes up and stays there Frank. its happened just a few times since it started and its always been related to too much noise. Not too loud like we would have thought pre-T but evidently too loud for damaged, T ears. For my T ears anyway. I doesnt seem to spike then come back down like other peoples. Well, we will see wont we. But, I am determined Frank, and I mean determined not to let it drag me back down. I will continue to ignore it as much as possible and purposefully relax when I hear it (which is like all the time!). It can just F off, excuse my language. I've come too far for it to stop me now. There's a line in Hogans book (which I havent read but do possess) which says "All T sufferers must reach the point where they say "This is perfectly acceptable and it is not worthy of consideration"" Trying to get there!! I'm hanging on mate, Im hanging on dont worry. TRT says ANY noise can be habituated. That's what Im holding on to. Looking to the day when I wont be able to hear it because its habituated. TRT is 'Tinnitus Retraining Therapy' and it was masterminded by Pawell Jastreboff and Jonathon Hazell. They wrote a book called the same. Their 'Model' of T has never been seriously challenged. They explain how the limbic system & autonomic nervious system get involved and keep tinnitus there. There's a methodology of habituating using TRT which involves counselling to explain whats going on and remove fear and the wearing of over the ear maskers to partially disguise the noise and also to train the brain to ignore noise.

Oh, the music I was playing was Youtibe vids of Guns n Roses, Live & Let Die and Sweet Child O Mine. Wish I hadnt. I dont think I had it on loud really, maybe there's something about music played above the T noise that my T doesnt like.

Thats a good point about the Clonaz. I raised it myself on another thread. I think it gives 'Re-bound Disinhibition' where the neurons have been held down and then the Clonaz wears off and they bounce back with a vengeance. I realised that was happening when I was taking it piece-meal. Then I started taking it every night about 7 weeks ago and now it does nothing for me really. I intend tapering down but I think I will get the rebound disinhibition and the noise will get louder. I dont fancy tapering right now when its got louder all by itself

I know what Plasticity is as in neural plasticity but havent heard of a program called that? I have never read anything good about Neuromonics on the boards. If anyone reading has then please tell.

PMing is just Private Messaging where you send one/more people messages that no-one else can see. I sent you one to track you down!

Your plan to sleep on the porch sounds cool!

Better sign out now, its nearly 10pm here. Gonna try to concentrate on TV and hope I can forget the stupid whistling that's going on in my ear.

Ciao fella

 

[Louise]

Something else I forgot to tell you. Now, as the day wears on (and I guess the clonaz wears off) A headache creeps in, compounding everything else, not a massive one , feels like a tennis ball is stuck somewhere behind my nose. I have to wonder what potential effect this has long term on one's brain. I just received rough drafts of a last will from my lawyer, a sobering moment to say the least. Ive got to go now, put dinner together, fish, egg roll, salad. Frank

Hey, I hope this will thing was just routine, nothing to do with T and how you've been feeling? We're not doing that one right?!

 

[Louise]

Hi, Frank,
I'm back home from work now, and I just wanted to tell you that I went through the same thing, when my severe tinnitus first started, about not being able to pay bills, run errands, read books, etc. I was so depressed, I felt that my whole life was over. Now, however, three years later, my tinnitus is certainly not gone, but I have found ways to cope with it.

I took a leave of absence from work because my tinnitus/pulsating tinnitus was so bad back then (2010). I'm back at work now, and it has really been good therapy for me. You're right; it helps to find work in some sort of sound-enriched environment. My office has some background noise (the heating and cooling system, I think) that makes it easier to concentrate and not really notice my T. Also, I love to read, and I am back to reading novels again! Try different therapies, drugs, and supplements that folks on here suggest, and I believe you'll find something that works for you!

I'm currently going to a chiropractic neurologist (it's a new field) where he is working on the neuroplasticity of my brain to help me control my tinnitus. My tinnitus is not gone, but it has definitely improved. Stay strong, and hang in there! Things will look better soon!!

I didnt realise these chiropractic neurologists are able to rewire the brain Karen?! Thats going on my list for tomorrow!

Goodnight x

 

[Karen]

Hi, Frank,
I'm in the Atlanta, Georgia area, and my doctor is was trained at Life College in Marietta, GA under a Dr.Carruth, who is very well-known in this field. I've been going to his understudy since May of last year. When I first started going there, I also had balance problems. My balance problems are now better, and we are working on my tinnitus. On a scale of 1 - 10, my tinnitus was probably about an 8 when I first started going there, and it is now mostly a 5. I have two types of tinnitus: ringing/hissing tinnitus and pulsating (heartbeat) tinnitus. I'm a difficult case, but he's continuing to work on me.

 

[Plucky]

No, but, Louise, I don't know ultimately what is going to happen to me. There is a point, if there is, where I give up ,I have to have this figured out, It's something I should have done anyway even before the t. The t just gave it a sense of urgency that was not there before because I always felt so healthy and invulnerable