Tenacious Tinnitus Club – Ear Pressure, Noise and Hyperacusis

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I understand! I have no fear of death either! This is quite the crazy ride, always wondering what's next!

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Hi Birdy, Lab Rat #1

Sorry things are so rough for you right now. Keep hanging in there; it's going to get better. I still have my low grade T which can wax and wane. I also still get symptom flare ups depending on my circumstances.  This benzo bitch just seems to take a long time to go away for some of us. One day you will be just ducky again.

Bart, former Lab Rat #1

 

[[ih...]]

Sorry from me too, Bird. I still have some tinnitus but thankfully getting less frequent & mostly at an ignorable level if I distract.

 

I don't think that most of us can ever be our old selves after falling down the rabbit hole but it's most likely you will come to a "you" that you are happy with again. I am much closer to that now but it's been 2 full years.

 

:smitten:

 

[[Bi...]]

Thanks Bart and ihope for your kind words    :smitten:

 

It's scary how powerful these drugs are.  I never experienced anything like it.  Day after day and month after month, and now year after year.  When I wake up in the morning the first thought is "How healed am I today" and I start analyzing all my SXS.  I hope I can get to the point where the thought of this experience and it's baggage is totally forgotten.  If I could go 24 hours without it crossing my mind I'd consider myself healed.  As for now it's the first thought of the day and the last thing I think about falling to sleep. Very intense!

 

Wishing you well guys  :smitten:

 

 

[[...]]

I understand that Bird!

 

It seems that the only real symptom I'm left with is depression/anxiety (slight)/sadness/void feeling. This may not sound bad to others having different symptoms, but it is very difficult for me! I've nevre felt like this before, it's terrible! Seems like my good days, right now, are the void days, cause I would much rather feel nothing than the horrible negative feelings!

 

I hope you feel better soon!!

 

:smitten:

[[sn...]]

Hi Birdie. I hope you're feeling better today. I made a post about you the other day. I even included your picture. 

 

 

Get well soon

 

 

Love, Snowy

[[ba...]]

hello ppls has anyone had any success with vitamin L theamine *sp* or DHEA or zinc with releieving tinnittus or wthdrawals ? i seem to feel worse this evening i took a zinc tablet a few hours ago i dont know if that was the cause of it or something else

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Baby, I actually have researched zinc, and it can relieve tinnitus in some people! I also take it, but I can't really be a good subject here, because I had tinnitus before (why I was prescribed benzos), the zinc hasn't made my tinnitus worse, it remains about the same!

 

 

I haven't taken L-Theanine or DHEA, although I take several other supplements.

 

[[Bi...]]

Hi Birdie. I hope you're feeling better today. I made a post about you the other day. I even included your picture. 

 

Get well soon

 

Love, Snowy

 

Snowy I going to find it lol.  Got to keep my eye on you

 

Today is a good day.  Got to enjoy them when they happen.  I keep forgetting about waves and when I get one I feel so low :'( :'(  I have to try and remember this journey is filled with lots of ups and downs.

 

Hugs  xoxoxooxox

[[Bi...]]

Baby, I actually have researched zinc, and it can relieve tinnitus in some people! I also take it, but I can't really be a good subject here, because I had tinnitus before (why I was prescribed benzos), the zinc hasn't made my tinnitus worse, it remains about the same!

 

 

I haven't taken L-Theanine or DHEA, although I take several other supplements.

 

 

True GM,  there is more zinc in the ears than all other parts of the body 900% more.  People in the tinnitus forums at  www.tinnitustalk.com  swear by high doses of NAC, but it did not help me.  NAC is what they give people that OD on Tylenol so it is potent stuff!  Opens potassium channels and many things, interesting drug for an OVER THE COUNTER thing.  I'd research and google  NAC / tinnitustalk

[[Bi...]]

More clonidine is helping me.  I got to the upper clonopin levels in the last 24 hours and it has interesting effects at levels over 1mg a day.  This is a powerful medication so I had to work my way up slowly!

 

Here's the weird thing my tinnitus levels dropped to new lows this morning as I took .4 mg Clonidine last night before bed, my highest dose ever.  Today the tinnitus is still there but lower!!  The Doc also said it would help my high BP too.

 

 

Did research on  adrenaline / tinnitus.  Found lots of connections - see link

https://www.google.com/search?client=firefox-a&hs=mkB&rls=org.mozilla:en-US:official&channel=nts&q=adrenaline+tinnitus&spell=1&sa=X&ei=AVReVID5N6rdsASsl4HoBw&ved=0CBwQvwUoAA

 

Also found lots of info on how benzo w/d can elevate  adrenaline production for years later after quitting!!  Lots of the successful "JUMPED" members here like "Fliprain" still take and have had good luck with Clonidine so I am glad I tried it, one of the few things that worked and I have tried LOTS of other meds, LOTS (lab-rat lol)  When I first started it I could not stay awake and avoided taking it when I had to drive, one could easily fall asleep at the wheel when you first start this stuff!!  After a week I got used to it.  It's habit forming but tapers are classically quick and painless with insomnia and irritably being the most reported sxs BUT many people stay on it for life as a blood pressure medication and migraine headache stopper. (For now it's a good tool while my brain heals but I will want off when I heal 100%)

 

Clonidine mutes adrenaline,  hummm,  I wonder how much of BZ W/D is due to elevated adrenalin levels?  Adrenalin is easy to target with clonidine.  The ultimate post jump medication?  Maybe

 

Then I found this (below) so I am going to drink a few gallons for grapefruit juice this week and see what happens.  Turns out there are benzo like chemicals in all grain and starch foods and if you drink grapefruit juice they will stay in the blood stream 800% longer and give you a bit of relief.  (WARNING: IF YOU ARE STILL ON BENZO'S DO NOT DRINK GRAPEFRUIT JUICE AS YOU CAN OVER DOSE!!!!!  Your liver will not expel benzo's properly when on GRAPEFRUIT JUICE.  Ask your doctor if you are allowed to drink grapefruit juice!!!)  OK, I covered my ass

 

[move]On to the article of the day!![/move]

 

REF: http://www.ata.org/ian-punnett

 

Drink More Grapefruit Juice: My Journey with Tinnitus...So Far

Ian Punnett and his wife host a morning radio show called, appropriately, Ian and Margery on KTMY in Minneapolis-St. Paul. He is widely known for also being the regular Saturday night host for a popular late night syndicated radio program, called Coast to Coast AM, which attracts an estimated 4.5 million listeners every night, making it the most listened to talk radio show in North America. In December 2011, Ian announced that he would be stepping down as the regular Saturday night host of Coast to Coast AM due to his increasing struggles with tinnitus. Here he shares the story of his own tinnitus journey.

 

My neurologist (we’ll call him “Dr. Brown” so I don’t have to type “neurologist” over and over) listened closely as I described the biography of my pulsating tinnitus: when it was born, the growth of my fluctuating hearing loss (like having shaving cream in my ears), the occasional dizziness and the torture of a neverending, low-grade headache.

 

Dr. Brown turned and said the one thing I had come to expect from almost every doctor but then two things that were joyously out of character. “There is nothing I can do to treat your tinnitus.” Since 2009, that’s the typical line I have heard in most examination rooms just before the doctor refers me to somebody else.

 

Instead, Dr. Brown surprised me with his sense of humor. “So, I am going to kick you back to your ENT for the tinnitus – and those guys hate that, don’t they?” I had to laugh. Each of my well-respected Ear, Nose and Throat (ENT) specialists seemed to race to the part where they could refer me to somebody else. I loved Dr. Brown’s candor.

 

“Yeah, why do ENTs seem so bothered when it comes to tinnitus?” I asked. “Because ENTs are doers and they can’t do anything about it. Now neurologists,” he said with a smile, “We’re talkers. We love to talk. So, I cannot treat your tinnitus or your hearing loss but I am one hundred percent sure that I can treat your headache.”

 

One hundred percent? During almost two dozen tinnitus-related visits with three ENTs, two audiologists, a general practitioner, a TMJ specialist, a psychologist, a psychiatrist, a hypnotist, a holistic practitioner, a dizziness specialist, a pain clinic and a sleep clinic, nobody had said that they were “one hundred percent sure” of anything.

 

“I believe you are suffering from something called cervicogenic headaches – chronic pain that originates where the bony structure and soft tissue of the head and neck meet. I can treat that with a mild muscle relaxant before sleep as of tonight.”

 

One day before I had been in pain and despair. Because of Dr. Brown, in just 24 hours I went from telling my wife that I wanted to have a head transplant to being ninety percent pain-free since I first started trying to get doctors to appreciate how disruptive tinnitus can be.

 

One might think that a lifetime of daily headphone use as a radio personality might be enough to give my tinnitus some automatic “street cred.” Despite my share of rock concerts and a family predisposition to hearing loss, one ENT had still said to me, “I’m not saying you

don’t have tinnitus, but I recommend you see a psychiatrist to make sure it’s real.”

 

Since my therapeutic strategy has been to follow up on every lead, I made an appointment with (let’s call him “Dr. White”) a psychiatrist. As an old school shrink, Dr. White asked me questions about my mother and my sex life and finally concluded that if the tinnitus was not organic, my mind could be creating “a delusion” to provide an excuse to end my successful but demanding media career.

 

“But I have one boy in college and another on the way. I love my work and I like being successful,” I protested.

 

Dr. White countered, “When a soldier is shot in the leg in battle, the adrenaline is pumping so much that he doesn’t even feel the pain until later when he finds some shelter.”

 

“Point taken,” I replied, “but how is that analogous to my tinnitus?”

 

“I don’t know,” Dr. White admitted, “But I like that story.”

 

I’m not sure how much his advice cost my insurance company but I can tell you that the biggest break might have come for free a few days later. A radio listener named “Mike from Santa Monica” sent me a postcard encouraging me to drink more grapefruit juice.

 

I had gotten so many thoughtful yet off-the-mark home remedies since revealing my tinnitus struggles on the air (like eat more pineapples, use magnets, use refrigerator magnets shaped like pineapples – you get the idea) that I was ignoring my mail. For some reason, though, my wife pulled Mike’s postcard out the pile and read it to me. Grapefruit juice? Curious and committed to following every lead no matter how improbable, I Googled a minor miracle. In a chat room where fellow sufferers discussed the grapefruit juice “cure” I saw a description of cervicogenic tinnitus.

 

All at once it made sense! If I have cervicogenic headaches, wouldn’t it figure that I also have cervicogenic tinnitus? With its characteristic pulsating sound, imbalance issues and fluctuating hearing loss, described in the literature as “fullness in the ear,” why had nobody mentioned it before?

 

Fortunately, the experts at the Mayo Clinic have agreed to give me a work-up for tinnitus and my headaches. I’ll let you know what I learn about cervicogenic tinnitus.

 

 

 

This brings me to the lessons learned from my adventures so far:

 

Trust yourself. Outside opinions are informative but only you can decide if they are definitive.

Never give up on hope. Try whatever you can afford. Sound therapies can help but don’t stop there. We know the scientific community is still learning much about the various types of tinnitus, and that will surely lead to new viable treatments.

And drink more grapefruit juice. I don’t think it cures tinnitus but I feel I owe it to “Mike from Santa Monica” to pass that along.

 

To connect with Ian and stay up-to-date on his progress with tinnitus he invites you to follow him on Twitter at @deaconpunnett.

 

 

 

 

 

[[Bi...]]

hello ppls has anyone had any success with vitamin L theamine *sp* or DHEA or zinc with releieving tinnittus or wthdrawals ? i seem to feel worse this evening i took a zinc tablet a few hours ago i dont know if that was the cause of it or something else

 

Hi baby, I tried all that stuff, it does not work for me.  People in OUR realm need something with more "KICK"  did you ever try clonidine?

[[sn...]]

Hi Birdie. I hope you're feeling better today. I made a post about you the other day. I even included your picture. 

 

Get well soon

 

Love, Snowy

 

Snowy I going to find it lol.  Got to keep my eye on you

 

Today is a good day.  Got to enjoy them when they happen.  I keep forgetting about waves and when I get one I feel so low :'( :'(  I have to try and remember this journey is filled with lots of ups and downs.

 

Hugs  xoxoxooxox

Hi Birdie :) I'm glad you feel better today. Hey, did you ever find that beautiful red head I posted? 

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I don't take anything for the tinnitus! Because I had it before, I don't see the point! I do take supplements for health reasons! Part being that I did genetics testing and I have found that some supplements have helped because of gene mutations!

 

[[mi...]]

Birdie.....

 

I just wanted to let you know that my tinnitus is now only with me about 2 days a week....:):).....I lost the ability to use icons I am lost...lol!!!!

 

I had the terrible T for 71/2 mo with no let up:(:(...so it does go away!!

 

I have not done much of the tone listening....so even though I am sure some things help I believe we just have to wait it out:(:(

 

Your time is coming Birdie.....Take care my friend...m....

[[Bi...]]

Birdie.....

 

I just wanted to let you know that my tinnitus is now only with me about 2 days a week....:):).....I lost the ability to use icons I am lost...lol!!!!

 

I had the terrible T for 71/2 mo with no let up:(:(...so it does go away!!

 

I have not done much of the tone listening....so even though I am sure some things help I believe we just have to wait it out:(:(

 

Your time is coming Birdie.....Take care my friend...m....

 

Hi Mini,  Every morning for 14 years I stand in front of a 60 foot tall pine tree in my back yard and look up and listen.  I remember 14 years ago being able to marvel as the wind blew through all the needles and I could here them all in the dead silence of the early morning.  My brain is so full of noise now from benzo w/d my world seems 'destroyed'.  I did look up at that big beautiful pine tree this morning and I have really healed a lot from last year so I am healing but I am still shocked at how slow this process is.  Our brains where never designed to handle this kind of drug.

 

My mistake was c/t  BIG MISTAKE.  I think it really upset my CNS in ways that will keep me protracted for a while longer.  I am also cutting my remeron and feel so sad lately, lot's of tears.

 

Mini your icon's look fine    I am happy to hear you are healing   so far I have only been T free for 5 or 10 minutes at a time and it was nice but short lived.

 

I guess I keep looking for answers since somehow I know I am always going to have some baggage from this ordeal.  Most likely my hearing.

 

Amazing the simple things we take for granted. Silence is a beautiful gift until we lose it  :'( :'( :'(

[[mi...]]

Birdie.... my heart goes out to you...... I so get it.....words just cannot express my symphony for what you feel you have lost....but I do understand the desperation....:(

 

I really believe yours will end.....I also c/t.....and I feel I am almost there....so keep looking up that tree and try to just enjoy its beauty....and one day soon your silence will return....

 

Best wishes to you my friend....m....

[[pe...]]

Amazing the simple things we take for granted. Silence is a beautiful gift until we lose it  :'( :'( :'(

 

There is so much truth in this simple statement Birdie.  I miss silence.  And when I had it, I didn't realize how beautiful it was.  I'm not giving up hope yet.  My tinnitus seems to keep diminishing very, very slowly...with some days better than others.  I believe that the information about adrenaline and anxiety being closely tied to tinnitus is true.  The information I read by Julian Cowan Hill that explains how these are tied together, certainly seems to fit my situation.  I have been working with a craniosacral therapist as he recommends, which I believe is one thing that has been helping me to decrease stress and calm down my nervous system.

 

I thought I would also mention that I recently started taking zinc.  Some lab work my doctor did showed that I was low in zinc.  So who knows...may be that is one of the things that is helping me.

 

Lab Rat #2 

[[Bi...]]

Amazing the simple things we take for granted. Silence is a beautiful gift until we lose it  :'( :'( :'(

 

There is so much truth in this simple statement Birdie.  I miss silence.  And when I had it, I didn't realize how beautiful it was.  I'm not giving up hope yet.  My tinnitus seems to keep diminishing very, very slowly...with some days better than others.  I believe that the information about adrenaline and anxiety being closely tied to tinnitus is true.  The information I read by Julian Cowan Hill that explains how these are tied together, certainly seems to fit my situation.  I have been working with a craniosacral therapist as he recommends, which I believe is one thing that has been helping me to decrease stress and calm down my nervous system.

 

I thought I would also mention that I recently started taking zinc.  Some lab work my doctor did showed that I was low in zinc.  So who knows...may be that is one of the things that is helping me.

 

Lab Rat #2 

 

Thanks for stopping by PD! :smitten: :smitten:

 

I am sure as our minds "REV DOWN" it will end but it's SO LONG!!!

 

This is really torture  :'( :'( :'( :'(

 

Hugs Birdy  :smitten:

[[Dr...]]

You "ain't" kiddin' Birdman.  :'(

[[do...]]

Haven't been on here in a while but I wanted to share some things I have recently experienced and wanted to see if anyone else has experienced this....I have had tinnitus for 1 1/2 years...it started in my left ear then moved to both and now is more so in my right ear.  It started out as a light ring, then changed to a hissing sound (high pitched), and now is more like  high pitched sizzle.  I have had some slight tmj symptoms for years....I would say 8 years.  After going to my second ent/audiologist it was suggested to me by the second audiologist that tmj could cause tinnitus.  Keep in mind all of my hearing/audiology tests were fine...so I gave it a few months because I thought he was crazy and in July of this year I went and saw a neuromuscular dentist.  He did extensive tests with computer imaging, ultrasound, xrays, etc.  I definitely do have tmj.  He also said that tmj can cause tinnitus and in some cases successful treatment of tmj can relieve the tinnitus.  I started wearing a splint in August and also started seing an atlas chiropractor.  Tinnitus did not improve for first 6 weeks if anything it got worse.  I also have been taking Flonase for Eustachian tubes since July which seemed to help my tinnitus a little.  In September family doctor prescribed 10 days of prednisone and after 2 days of taking prednisone my tinnitus was almost gone.  Two days after stopping prednisone tinnitus returned.  I shared this with my neuromuscular dentist and he feels the reason the prednisone helped was because my tmj muscles are inflamed with pull on muscles of the middle/inner ear.  In the last 3 weeks I have been taking zinc (which also helps a little with inflammation), ginkgo biloba (which helps with blood flow), and boswellia (also helps with inflammation)...these are natural supplements and do seem to help.  I have also started seeing a physical therapist that does intraoral therapy on trigger points in my tmj muscles.  I don't know if that is helping yet or not.  My tinnitus for the past week has been a lot better.  I take most of my supplements one time a day in the morning and once I do I notice the tinnitus is better until the evening and that is when I take the second boswellia tablet.  I do notice after I eat (even when I wear my orthotic splint) the tinnitus and jaw muscles hurt more about 15  - 30 minutes after I eat and the tinnitus is a little louder which leads me to think my muscles do play a role in my tinnitus.  I think through my 1 1/2 years of trying to come off of klonopin and antidepressants and other medications put me into withdrawal for so long and so severe that I held tension in my entire body especially in my face and neck and this aggravated any existing tmj I had which I feel has brought on or made what would have been tinnitus due to withdrawal worse.  I type this because I hope it will help someone else.  I am not saying I am cured and I have fear of my tinnitus getting worse all day long every day but I have seen improvement over the past couple of weeks.  Can anyone else relate to my experience?

[[do...]]

Has anyone tried Tinnitus Retraining Therapy, Neuromonics, or Zen Therapy by Widex for their tinnitus?  These are all expensive $3K plus range mp3 type/hearing aid type therapies to help you habituate to tinnitus?

[[pe...]]

Yes, I used neuromonics for several months.  It was loaned to me by the audiologist who was counseling me for tinnitus.  I think it did help me a little.  Mostly as a distraction.  I understand that the idea behind it is if you where it consistently for a year that it is supposed to help decrease the perception of tinnitus.

[[ba...]]

wow i just noticed something , i didnt have any tinnittus after smoking awhile ago im gratefull for my tinnitus finally going away , that bothered me the most in my xanax withdrawals , in 1 week it will be exactly 3 months since i quit taking xanax

[[NN...]]

Amazing the simple things we take for granted. Silence is a beautiful gift until we lose it  :'( :'( :'(

 

There is so much truth in this simple statement Birdie.  I miss silence.  And when I had it, I didn't realize how beautiful it was.  I'm not giving up hope yet.  My tinnitus seems to keep diminishing very, very slowly...with some days better than others.  I believe that the information about adrenaline and anxiety being closely tied to tinnitus is true.  The information I read by Julian Cowan Hill that explains how these are tied together, certainly seems to fit my situation.  I have been working with a craniosacral therapist as he recommends, which I believe is one thing that has been helping me to decrease stress and calm down my nervous system.

 

I thought I would also mention that I recently started taking zinc.  Some lab work my doctor did showed that I was low in zinc.  So who knows...may be that is one of the things that is helping me.

 

Lab Rat #2 

 

Thanks for stopping by PD! :smitten: :smitten:

 

I am sure as our minds "REV DOWN" it will end but it's SO LONG!!!

 

This is really torture  :'( :'( :'( :'(

 

Hugs Birdy  :smitten:

how is the Potiga experiment going?