Plucky's Life

Good luck with the appointments. And you're right you really can spend a lot of money. I have.
And is it worth it? Psychiatrist visits seem to help and the sound machines and thats about it. I see the psych/ hypnosis guy on the 19th and the big appointment at Jefferson is the 29 where I expect to hear them sell the neuromonics program. I'll have tests and try a hearing aid at that time too. I am going to try to push these appointments up, It's too long to wait. Clonaz worked for me last night but only for four hrs. do you think .5 is enough? I don't feel too bad today, I am sure its wearing off soon though
 
I have the same question about my existence Plucky.
I was on 0.5mg Clonaz when this started for me 20months ago. I took it so I could
get to sleep, otherwise I could absolutely not. The drug stopped having any effect after 3 months at
that dose, so I tapered off. For me it did not do one iota for the volume of my tinnitus.

Does it actually lower your volume?
Is your t both ears?
 
It does in volume, and gravitates to the left at times. It has turned my life horrible, I question my ability to exist like this. People here are helpful and the rest of the world doesnt seem to care

Dont want to raise your hope but it fluctuating in volume and moving location (between ears) I have been told is a good sign.
 
And is it worth it? Psychiatrist visits seem to help and the sound machines and thats about it. I see the psych/ hypnosis guy on the 19th and the big appointment at Jefferson is the 29 where I expect to hear them sell the neuromonics program. I'll have tests and try a hearing aid at that time too. I am going to try to push these appointments up, It's too long to wait. Clonaz worked for me last night but only for four hrs. do you think .5 is enough? I don't feel too bad today, I am sure its wearing off soon though

Well, I can say I tried cant I? If I hadnt tried some of the things then Id always be wondering. The visit to the Psychiatrist who prescribed Pregabalin was the best money I've ever spent. I'm actually still waiting for my NHS psychiatrist appointment, no wait, when I called about it last week to see what was happening I was soet of told over the phone that it had been cancelled as i'm seeing a CBT counsellor!! Like they are the same thing. No-one even let me know it had been cancelled. That's the shambolic NHS virtual out-sourcing for you. But, I digress....

Hearing aids are a good bet for you and Im glad you're doing the Jefferson thing.

Clonaz gives you soon relief at least and I wouldnt go beyond 0.5mg, not yet anyway. It doeshave a long half life and that's why you wont be feeling too bad. If you cant get Pregabalin then maybe take the Clonaz every night. But, promise yourself you wont go above 0.5mg.
 
I have the same question about my existence Plucky.
I was on 0.5mg Clonaz when this started for me 20months ago. I took it so I could
get to sleep, otherwise I could absolutely not. The drug stopped having any effect after 3 months at
that dose, so I tapered off. For me it did not do one iota for the volume of my tinnitus.

Does it actually lower your volume?
Is your t both ears?

Have you tried Mirtazapine (Remeron) for sleep Dan? It really is good. As we know Benzos stop working, Remeron and Pregabalin (Lyrica) dont seem to .

I used to get a volume reduction from Clonaz, a big one actually. Not any more. I'm going to taper off the 0.5mg I take each night starting next week.
 
No I haven't tried Remeron. Does it make tinnitus worse when u take it or upon withdrawl?
I've been sleeping from 6am to about 11am for the last 6months. Its just too loud. Its just as loud as a masking machine on low volume right next to my head, so I don't even bother most of the time.
My life used to be good and then one morning it is over. I don't mean to steal your thread Plucky, I'm just saying I have severe disabling tinnitus and I hope yours isn't as bad, because I'm ready to go.
 
Dan, hold your horses. You havent even tried some of the drugs that can help! No-one likes taking them, me included, but I'd put up with other side-effects to EITHER reduce the T volume or cope with it a lot better.

Please try Remeron for sleep. The lowest dose is 15mg, I've been chopping that in half for over 4 months and it knocks me out. Not like a Benzo, its weird, you're awake watching TV (or trying to, trying with all your might to pretend you cant hear that anoying noise in your ear/s, head) then all of a sudden this grog comes on and you literally have to get to bed because then you're out! Its an antidepressant which has this making you sleep side-effect. it also keeps you alseep throughout the night. It has no history of making T worse either by taking it or upon withdrawl.

You'd be better off trying that before axing yourself wouldnt you say?

I can hear mine all the time in my normal living conditions. You do need sound around you, even if the T gets through it (which I know it does and mine does too). It stops the brain completely homing in on that one sound and makes it listen externally.
 
Dan, realize that you are not alone. This is a healthy, smart, caring group of people who will help you when times are tough. I can relate completely to what you are saying and you are welcome to stay right on this thread and write back ok? To answer your question, I dont think there is a permanent reduction in the volume with Clonaz but while I am on it , it is down, doesn't go away completely, but there have been times when I was sitting outside and couldnt hear T. I was actually startled by the absence but then fear set in as I began to worry that it was coming back, which it did, I suspect as clonaz wore off. When I take the .5 clonaz at night it is as if I flipped a switch then I am out for around four hrs and then immediately up with moderate level T but really drowsy for about another four hrs. Then I get up, get to moving around and that is the best part of my day, annoyance wise. T stays down till mid afternoon and I push it aside, stay busy and then a headache starts to creep in which I use tylenol against. I was prescribed three clonaz a day but trying to do one max, at night. I tried Nyquil fri night for sleep but the T was max loud the next day so I think amplified by the alcohol. There are lots of therapies you can consider so look into them and there are links from this site. There is also promising research and trials going on so there is hope for you, as for all of us, so read up. I was with my two nephews today and they depend on me for fun and I like to play the cool uncle part. Today there was no pleasure in any of it. I played along but was only pretending to enjoy it, was totally miserable from T
 
Well, I can say I tried cant I? If I hadnt tried some of the things then Id always be wondering. The visit to the Psychiatrist who prescribed Pregabalin was the best money I've ever spent. I'm actually still waiting for my NHS psychiatrist appointment, no wait, when I called about it last week to see what was happening I was soet of told over the phone that it had been cancelled as i'm seeing a CBT counsellor!! Like they are the same thing. No-one even let me know it had been cancelled. That's the shambolic NHS virtual out-sourcing for you. But, I digress....

Hearing aids are a good bet for you and Im glad you're doing the Jefferson thing.

Clonaz gives you soon relief at least and I wouldnt go beyond 0.5mg, not yet anyway. It doeshave a long half life and that's why you wont be feeling too bad. If you cant get Pregabalin then maybe take the Clonaz every night. But, promise yourself you wont go above 0.5mg.
Right Louise, There was that window of opportunity with hyperbaric oxtgen so I went for it because I didnt want to regret missing the chance. I knew it might not have any effect from just reading around and I knew I would regret spending the money on the other side of it if it didnt work, which it didnt and I'm out 1350.00
 
No I haven't tried Remeron. Does it make tinnitus worse when u take it or upon withdrawl?
I've been sleeping from 6am to about 11am for the last 6months. Its just too loud. Its just as loud as a masking machine on low volume right next to my head, so I don't even bother most of the time.
My life used to be good and then one morning it is over. I don't mean to steal your thread Plucky, I'm just saying I have severe disabling tinnitus and I hope yours isn't as bad, because I'm ready to go.

I hear you Dan, mine is way louder than any of my sound machines on low, they really have to be cranked up to drown out the T then how does one sleep when it's all so loud? Answer; you don't! I have been stuck inside my apt in a lousy NE USA winter with this for almost three months, pushed to wits end with this and I am as close as you are to giving up. I'm told that it gets better with time or that it could even resolve itself and that is what I hang on to through each day
 
Oh yeah Plucky, I meant that putting my machine on low makes no sense because my tinnitus is louder and I would have to, crank it up to about 85dB's (measured on phone app) to drown the tinnitus out....and we all know that sleeping to an 85dB racket is nonsense. What I meant was that surely my tinnitus is NOT 85dB in loudness, but in order to drown it out I would need that much external noise. That's why its not fun for me to go outside because nothing masks it and I get depressed even more looking at things that I used to enjoy. I just go outside to get some fresh air and get my blood flowing a bit. I haven't spent any money on expensive T treatments yet, so I blow money on pizza, ice cream and feel good foods - its the only part of my brain that I can get some serotonin going. I used to have sex also, but my gf decided I'm crazy and stopped answering my calls.
Well, you get it...
I don't know about getting better with time, for me its only gotten worse :arghh: over since onset 20 months ago.
I am going to have a hearing test up to 12khz on Tuesday so I will compare it to the one I had back then which only went up to 8khz and I had mild hearing loss 35dB in left ear at 8khz and about 10-15dB loss at all others in both ears.
I am sure I lost some more hf hearing.

Have you considered rTMS? There are a couple of people starting treatment tomorrow with Dr.Stubberman neuronavigated rTMS clinic in Los Angeles. Its has been said to be very successful and permanent relief.
He also uses a multi-disciplinary approch and prescribes an anti-depressant if needed in addition to rTMS.
It will be interesting to see how they fare...I would say their tinnitus is moderated to low end severe.
The downside is that selling your car would only cover about 10% of total treatment cost. :eek:
 
yeah remeron is sounds nice, but wouldn't it stop working just like Clonazepam did?
I know how it feels like to be knocked out - I had that effect with Clonaz - I took it and in about 10 minutes I'd better be lying down in my bed.
 
There are a couple of people starting treatment tomorrow with Dr.Stubberman neuronavigated rTMS clinic in Los Angeles.

Keep us up-to-date if you can on how well rTMS performs for the people you know trying it. My gut feel is that rTMS, HIFU surgery, or Acoustic CR Neuromodulation will be the treatments of the future for tinnitus.
 
I guess I'll look into rTMS that's a new one on me. My car should bring 15K how much is rTMS? Louise said Remeron keeps working. I'm trying to find it. I know what you mean about your GF leaving mine is long gone too. Who is going to put up with this? Best bet would be to find someone with it, or someone deaf maybe, I just don't know the answer. being alone with it makes it worse
 
Well since the LA rTMS is VERY new (like anything for tinnitus is nowadays)...I'm talking about less than 10 patients treated so far (with very good results), the cost is skyrocketing (like any new treatment). I was quoted by telephone:
$30,000 for mild case
$60,000 for moderate case
up to $90,000 for severe cases!
I am part of the latter group:banghead:
 
I guess I'll look into rTMS that's a new one on me. My car should bring 15K how much is rTMS? Louise said Remeron keeps working. I'm trying to find it. I know what you mean about your GF leaving mine is long gone too. Who is going to put up with this? Best bet would be to find someone with it, or someone deaf maybe, I just don't know the answer. being alone with it makes it worse

Frank, Did you give Dr. Shulman a holler ? I had a bad joke about GF for you and Dan, but decided to engage the brain before the mouth. I thought it maybe could increase your serotonin levels. I was trying to improve from my Frank joke.
I am curious if anyone would respond from Martha E. I did have a respite from my T while under sedation for my neck facet joint injection today. I don't know what was in the IV, but it shut my T off for awhile. It was amazing to me, but short lived. I will update on Chiro thread day by day.
 
I guess I'll look into rTMS that's a new one on me. My car should bring 15K how much is rTMS? Louise said Remeron keeps working. I'm trying to find it. I know what you mean about your GF leaving mine is long gone too. Who is going to put up with this? Best bet would be to find someone with it, or someone deaf maybe, I just don't know the answer. being alone with it makes it worse

Yes, Remeron keeps working. Well, it has done for me for 4 months.

I dont think you'll have to narrow your search to only deaf people Frank :)
 
I agree with Louise that Remeron is great for sleep. Great dreams, too. Put on those adventure pajamas when you pop that pill.

(I have been very surprised to read two accounts of people who said they did not like Remeron. My doctor prescribed me Remeron specifically because it would have no effect on my tinnitus. No effect on my "T" at all.)
 
Well since the LA rTMS is VERY new (like anything for tinnitus is nowadays)...I'm talking about less than 10 patients treated so far (with very good results), the cost is skyrocketing (like any new treatment). I was quoted by telephone:
$30,000 for mild case
$60,000 for moderate case
up to $90,000 for severe cases!
I am part of the latter group:banghead:

I can only wish I had that kind of money and I would readily spend it to rid me of this and have my life back
 
Yes, Remeron keeps working. Well, it has done for me for 4 months.

I dont think you'll have to narrow your search to only deaf people Frank :)

Ok maybe not , but to someone that is understanding of my taking drugs and wandering around town all day with my brain hollowed out by this noise. Plus willing to listen to radio or tv, and white noise machines 24/ 7.
 
I'm sure there are some. After all some women put up with getting beaten to a pulp by their men dont they? So I'm sure there's someone out there for YOU! :)
 
I'm sure there are some. After all some women put up with getting beaten to a pulp by their men dont they? So I'm sure there's someone out there for YOU! :)
Yeah but Louise, the reason for this is they "just don't listen". Not true, just a joke I heard long ago.:) Just to be clear, I am not that way and nobody should be.
 
Frank, Did you give Dr. Shulman a holler ? I had a bad joke about GF for you and Dan, but decided to engage the brain before the mouth. I thought it maybe could increase your serotonin levels. I was trying to improve from my Frank joke.
I am curious if anyone would respond from Martha E. I did have a respite from my T while under sedation for my neck facet joint injection today. I don't know what was in the IV, but it shut my T off for awhile. It was amazing to me, but short lived. I will update on Chiro thread day by day.

I did not, yet, Dale. I had to make rent and really had to work to get the funds together, which I did do. I have to get past a few other appointments this month and pay for them before I can make any more. I'm hoping to be able to find a job too in the meantime.
 
I agree with Louise that Remeron is great for sleep. Great dreams, too. Put on those adventure pajamas when you pop that pill.

(I have been very surprised to read two accounts of people who said they did not like Remeron. My doctor prescribed me Remeron specifically because it would have no effect on my tinnitus. No effect on my "T" at all.)

Hi, Are you taking it currently for sleep, on a regular basis too?
 
Hi, Are you taking it currently for sleep, on a regular basis too?
Plucky -
I take Remeron for sleep. When I got tinnitus, I couldn't sleep. Remeron fixed that.

The only bad thing I've found about the drug is, I've put on weight. I've gained about 10 pounds, I think.

This could also be from drinking Charles Shaw Merlot, but not sure.
 

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