What is happening in your brain?

[[pa...]]

Excellent post and thread, Parker!!  Certainly validates the "healing in progress" views we've gotten from both Heather Ashton and Bliss Johns.

 

I'm curious if you have tinnitus, as many of us do, and wonder what your "take" on it is.  This and the accompanying hyperacusis and "head noise" are my principal obstacle at 13 months off.  It was diminishing until I had a violent reaction to a single .1mg dose of clonidine 7 weeks ago which revved it up big time again.  I'm finally emerging from that setback; the tinnitus, etc. has calmed down a bit.  I am confident it will subside, but I also know it can take an extremely long time.  Not sure what to make of the "head noise" other than, again, a symptom of healing.

 

To echo many other responses, thanks for taking the time to write your initial post.  A tremendous contribution to both this forum and it's members!

 

 

Joe

 

 

Hey Joe,

 

Well - I'm no expert.  But I do have SOME background. My undergrad work was half speech and half audiology. I know just enough to be dangerous. LOL.

 

Yes  - I had it BAD - VERY BAD in the beginning.  It competed with my environment in terms of my hearing at that point.  Not anymore.  And now, it's variable - but what LITTLE I have of it, I'd have to be in an enclosed area like a quiet closet to even notice what I have left.  So mine has mostly gone and I could live with this forever compared to my remaining symptoms that are for more difficult for me.

 

Tinnitus is basically the perception of sound in the absence of external sound.  Temporary tinnitus is common when we are exposed to loud noise long term - like at a rock concert.  But it's also caused by a lot of drugs -and in particular, really common in benzo withdrawal and recovery. Mechanically, normally- extended exposure  to loud noise can cause temporary damage the little cilia (hair cells) that are attuned to higher frequences in the inner ear - and they will "fire off" causing sound to register in the brain in the absence of any sound.

 

But with drugs, we aren't getting exposed to loud noise... so why?

 

I'm not entirely sure, but I think that there are "other ways" that these tiny hair cells can be triggered to "fire" - thereby registering as sound.  One theory might be that in absence of adequate GABA, Glutamate is triggering the nerves (hair cells) to fire fire fire fire fire-- and you're hearing noise. Also - it's a scientific hypothesis that a low level of serotonin can cause this, but this is all so variable. 

Even still - why is tinnitus usually only high frequencies and not low-frequency? 

 

I don't know. I chalk it up to biochemical changes.  Mine has come and gone and been different on some days and the times of the day even. The fact that it's better in windows is encouraging, because it shows it's not "permanant" damage - just a temporary biochemical state of healing - one more thing that's just in flux as this goes away.

 

Does it lessen or leave for you at times?

 

 

[Guest [Jo...]]

Excellent post and thread, Parker!!  Certainly validates the "healing in progress" views we've gotten from both Heather Ashton and Bliss Johns.

 

I'm curious if you have tinnitus, as many of us do, and wonder what your "take" on it is.  This and the accompanying hyperacusis and "head noise" are my principal obstacle at 13 months off.  It was diminishing until I had a violent reaction to a single .1mg dose of clonidine 7 weeks ago which revved it up big time again.  I'm finally emerging from that setback; the tinnitus, etc. has calmed down a bit.  I am confident it will subside, but I also know it can take an extremely long time.  Not sure what to make of the "head noise" other than, again, a symptom of healing.

 

To echo many other responses, thanks for taking the time to write your initial post.  A tremendous contribution to both this forum and it's members!

 

 

Joe

 

 

Hey Joe,

 

Well - I'm no expert.  But I do have SOME background. My undergrad work was half speech and half audiology. I know just enough to be dangerous. LOL.

 

Yes  - I had it BAD - VERY BAD in the beginning.  It competed with my environment in terms of my hearing at that point.  Not anymore.  And now, it's variable - but what LITTLE I have of it, I'd have to be in an enclosed area like a quiet closet to even notice what I have left.  So mine has mostly gone and I could live with this forever compared to my remaining symptoms that are for more difficult for me.

 

Tinnitus is basically the perception of sound in the absence of external sound.  Temporary tinnitus is common when we are exposed to loud noise long term - like at a rock concert.  But it's also caused by a lot of drugs -and in particular, really common in benzo withdrawal and recovery. Mechanically, normall - extended exposure  to loud noise can cause temporary damage the little cilia (hair cells) that are attuned to higher frequences in the inner ear - and they will "fire off" causing sound to register in the brain in the absence of any sound.

 

But with drugs, we aren't getting exposed to loud noise... so why?

 

I'm not entirely sure, but I think that there are "other ways" that these tiny hair cells can be triggered to "fire" - thereby registering as sound.  One theory might be that in absense of adequate GABA, Glutamate is triggering the nerves (hair cells) to fire fire fire fire fire-- and you're hearing noise. Also - it's a scientific hypothesis that a low level of serotonin can cause this, but this is all so variable. 

Even still - why is tinnitus usually only high frequencies and not low-frequency? 

 

I don't know. I chalk it up to biochemical changes.  Mine has come and gone and been different on some days and the times of the day even. The fact that it's better in windows is encouraging, because it shows it's not "permanant" damage - just a temporary biochemical state of healing - one more thing that's just in flux as this goes away.

 

Does it lessen or leave for you at times?

 

The intensity varies.  Right now I have several simultaneous sounds going on, one of which is a "chirping" that started during the Clonidine reaction.  I usually get headaches when my T flares up.  Also, when I'm experiencing near windows, the sounds and discomfort are less intense.  During a wave, the T intensifies.  However, even when my T is at a lower level, certain sounds can cause it to flare up: fans, sirens, horns... grocery store visits almost always antagonize it.  In fact, road noise while in a car for more than 20 or 30 minutes causes a flare up.  I really can't drive very far right now or travel in general.

 

I know this is a result of Benzo withdrawal so I'm confident my hearing issues will diminish.  It was much worse in the beginning, but the ambient sound induced flare ups seem to be worse.  Basically, I can't be in noisy environments.  When I am, I put cotton in my ears which helps somewhat.

 

 

Thanks, Parker!

 

 

Joe

[[ih...]]

Parker,

 

This is one of the most informative write ups I have ever read, could you tell me how many of these chemicals can be detected in a blood sample? Not sure but are some chemicals unable to be detected in blood?

 

Your write up delivered hard to understand material in a manner that even I could comprehend it!

 

Thanks

 

Serotonin levels can be detected via blood test & norepinephrine & dopamine via urine , however ,tests are really only useful where tumour or similar abnormalities are suspected.

This is because NT levels are constantly changing so a snapshot won't tell you much, except to detectabnormally high levels.

 

Studies have been done comparing clinically depressed people with control group & failed to find any significant differences in serotonin levels. Some happy people had low serotonin so it's more complex than raising the levels of one or more NTs.

[[he...]]

http://ghr.nlm.nih.gov/gene/MTHFR

[[Ho...]]

Parker & Joe...Every few months I try taking omega 3's but they really rev up my physical symptoms, with burning stinging skin all over for at least 12 hours. It seems to take a few hours for this to start but then it just builds after that.

 

The reason I keep trying is that I have a condition with my retinas where they are thinning and forming holes that put me at risk of a retinal detachment. I have had this for years. When I started taking the omega 3's a few years ago the thinning stopped and stayed that way. Last fall I took the benzos and went into wd and have been there ever since. Now I am unable to tolerate the omega 3's

 

The reason I am mentioning this is that every time I have tried taking them my tinnitus would completely disappear 2 days later, but just for that day. I'm not sure what this is about, but it has happened every time and I believe I've tried them about 4 times. I sure hope that I will be able to tolerate them soon, both for the sake my retinas and the tinnitus.

 

Bill

[[Be...]]

bump

[[ve...]]

How are you doing today BenzoJax?

 

V

[[Be...]]

vertigo... much much better..

"organic" fear gone...

 

recognize anxiety for "organic" anxiety...

 

controlled OCD looping that  i was using sub-consiously to relieve the anxiety..YES!!!!

 

used LOGICAL brain.. to stay in the moment...and "sit" figuritly with anxiety..

 

 

and just feel the anxiety... and not try to escape it ...YES!!!

 

there is hope!!!

 

felt pain at night>>>>YES!!!! means flight/fight getting better... YES!!!!

 

morn anxiety has passed.. for now... YES!!!!

yes!!!!!!

[[pa...]]

Jax,

 

  It makes me smile to see what you just wrote.  It's not a perfect road, but I'm glad you have a way to measure progress - and that you shared it here.  Today was a day *I* needed to read that. So it's a beautiful thing to read.

 

Thank you,

:)Parker

[[Be...]]

parker... bless you...you are such a supportive person...

 

i have a baseline... after 1 year of tapers...

 

yes!!!!!

[[Be...]]

bump

[[Hi...]]

You went deep with this one...thanks a bunch for this detailed explanation it really provides an enlightening look into recovery.

[[be...]]

Hi Parker.....do you thinkip it would be a good idea to share some of this with family members that just dont believe i could be this bad?  I am so frustrated with some of them...i have tried to explain what i am goong through but they just dont care to believe it....they are not supportive....what do I do with that?

 

BB.

[[sa...]]

Betty, Cedartree posted a link to a great, well researched Wikipedia article about benzo withdrawal over in the Chewing the Fat forum.  Maybe you could print that up and show it to them?  That's what I was going to do anyway.

[[be...]]

Thx Sage...i will go and ck it out right now.

 

Have a great day....

 

BB.

[[pa...]]

Hi Parker.....do you thinkip it would be a good idea to share some of this with family members that just dont believe i could be this bad?  I am so frustrated with some of them...i have tried to explain what i am goong through but they just dont care to believe it....they are not supportive....what do I do with that?

 

BB.

 

Hi Betty,

 

I think from what others have shared, the family support issue is common.  I dont' know how our families could fully understand what we are going through. It's incredulous to even me, and I"m in it.  But I think that sure - sharing anything could be a help.

 

I'm going to list several sources that I like - I shared them with my family and doctor.

 

WIKIPEDIA article on "Benzodiazepine Withdrawal Syndrome"

(includes 100+ research articles at the bottom - is printable - includes a list of symptoms, the average recovery time period, and the severity of things)

http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

 

Bliss Johns' Recovery-Road Website (Bliss is the author of the famous "Benzo-Wise" and "Recovery and Renewal" (2nd edition of BenzoWise)

(includes pamphlets to print for family and providers)

http://recovery-road.org/

 

"Beyond Benzodiazepines -Helping People Recovery from Benzo Dependence and Withdrawal" - Australia's national PDF Pamphlet for providers

(this is well packaged and shows the reality of this situation)

http://www.nevdgp.org.au/files/programsupport/mentalhealth/2010/Beyond_Benzo%20Manual%202010_Reconnexion.pdf

 

These should all point to credibility. 

They might be things you can give to those that are closest to you. They may still not completely understand, but perhaps it's more insight than they had before.

 

:)Parker

[[Lo...]]

Hi Parker, just read your twin towers post and it was great, I think this post should be posted to every member on this site and to new ones too. It certainly makes sense of it all and should allay any fears/ panic  that are associated with the symptoms of recovery. Well done and thanks for the time and effort you put into it. The response you had was testimony to what demand there is for explanation in lay mans terms. On a lighter note, I had a fit of the giggles looking at all the questions fired at you from members wanting advice wandering if you we're coping with it all, yeah it made me laugh first time in ages, especially when one member remarked they couldn't send you a pm because your inbox was full !!!! Come on Parker,.....full inbox, play the game!!!  Thanks again.

[[pa...]]

Hi Parker, just read your twin towers post and it was great, I think this post should be posted to every member on this site and to new ones too. It certainly makes sense of it all and should allay any fears/ panic  that are associated with the symptoms of recovery. Well done and thanks for the time and effort you put into it. The response you had was testimony to what demand there is for explanation in lay mans terms. On a lighter note, I had a fit of the giggles looking at all the questions fired at you from members wanting advice wandering if you we're coping with it all, yeah it made me laugh first time in ages, especially when one member remarked they couldn't send you a pm because your inbox was full !!!! Come on Parker,.....full inbox, play the game!!!  Thanks again.

 

 

 

LOL, Lotzy.  RIGHT?   That's the risk I think I ran posting this.  I need to put a disclaimer on there somewhere - that I'm not an expert  - and that I'm still recoverying, too - and benzobrain is still with me.  But the whole thing is funny in a way, because we are ALL benzobrain here trying to support each other.  When I even think about a bunch of brainfog people groping in the dark with each other, bumping into each other - in a dark humor kinda way, it IS kinda funny.

(not really, but I have to keep some kind of humor around it to survive it!)

:)Parker

[[zo...]]

I think from what others have shared, the family support issue is common.  I dont' know how our families could fully understand what we are going through. It's incredulous to even me, and I"m in it.  But I think that sure - sharing anything could be a help.

 

I'm going to list several sources that I like - I shared them with my family and doctor.

 

WIKIPEDIA article on "Benzodiazepine Withdrawal Syndrome"

(includes 100+ research articles at the bottom - is printable - includes a list of symptoms, the average recovery time period, and the severity of things)

http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome

 

Bliss Johns' Recovery-Road Website (Bliss is the author of the famous "Benzo-Wise" and "Recovery and Renewal" (2nd edition of BenzoWise)

(includes pamphlets to print for family and providers)

http://recovery-road.org/

 

"Beyond Benzodiazepines -Helping People Recovery from Benzo Dependence and Withdrawal" - Australia's national PDF Pamphlet for providers

(this is well packaged and shows the reality of this situation)

http://www.nevdgp.org.au/files/programsupport/mentalhealth/2010/Beyond_Benzo%20Manual%202010_Reconnexion.pdf

 

These should all point to credibility. 

They might be things you can give to those that are closest to you. They may still not completely understand, but perhaps it's more insight than they had before.

 

:)Parker

 

Hello Parker. I would add to your list a book which actually describes the user's personal experience of the symptoms.  The Benzo Book by Jack Hobson-Dupont has some nice illustrative descriptions which may allow non-sufferers to understand what it feels like. The PDF is free here ......  http://www.thebenzobook.com/benzo/pdfs/the-benzo-book10.pdf

 

-Zoner

[[sa...]]

Hi Parker, just read your twin towers post and it was great, I think this post should be posted to every member on this site and to new ones too. It certainly makes sense of it all and should allay any fears/ panic  that are associated with the symptoms of recovery. Well done and thanks for the time and effort you put into it. The response you had was testimony to what demand there is for explanation in lay mans terms. On a lighter note, I had a fit of the giggles looking at all the questions fired at you from members wanting advice wandering if you we're coping with it all, yeah it made me laugh first time in ages, especially when one member remarked they couldn't send you a pm because your inbox was full !!!! Come on Parker,.....full inbox, play the game!!!  Thanks again.

 

 

 

LOL, Lotzy.  RIGHT?   That's the risk I think I ran posting this.  I need to put a disclaimer on there somewhere - that I'm not an expert  - and that I'm still recoverying, too - and benzobrain is still with me.  But the whole thing is funny in a way, because we are ALL benzobrain here trying to support each other.  When I even think about a bunch of brainfog people groping in the dark with each other, bumping into each other - in a dark humor kinda way, it IS kinda funny.

(not really, but I have to keep some kind of humor around it to survive it!)

:)Parker

 

:laugh: It makes me laugh too.  The blind leading the blind....but only the blind understand what it's like to be blind, right?  I mean even if we ARE bumping into walls. 

[[ga...]]

I love you Parker. thank for your compiling this for us. you must have a much deaper understanding of our clients now. no doubt.

[[2w...]]

Thank you Parker. This is information is very important for all of us to have. Thanks so much for putting this all together.

[[pa...]]

I love you Parker. thank for your compiling this for us. you must have a much deaper understanding of our clients now. no doubt.

 

OH YES, Garuda.  I DO understand now how it feels to be brain-damaged and autistic. I felt BOTH in this. My recovery was SEVERE. I am out and about doing things today, walked an hour, drank coffee.  IT IS GETTING SO MUCH BETTER!  I am so thankful.

There is going to be a happy ending for us!

 

And I love you, too, Garuda!

 

:)Parker

[[St...]]

Hi Parker,

 

Glad to hear you are doing so well.  Oh how we appreciate the little things in life again, to take a walk and to drink coffee - makes a big day in this benzo world doesn't it.  I so understand, even though I'm a tea drinker, love the smell of coffee but never acquired the taste. 

 

Take it easy Parker, I know you must be getting tons of messages from all of us.  Please don't feel compelled to have to respond to all.  We don't want this to stress you nor cause you revved sxs. It is sad at how little information is out here so when someone as you who as you said are still in recovery yourself, comes forth with info - it brings you forth as a star in this benzo world. I know from myself how I have copied and printed your posts as I have Bliss, or Dr Ashworth. You give such encouragement and something for people to hold on to as we travel thru this hell. You make it more real and personal because of you going thru it with us, if that makes any sense. I guess cause in a way you are touchable, where Bliss and Ashworth aren't really.

 

I hope your sxs are few.  Thanks for providing so much support, I hope you find it for yourself also.

Healing to you and all of us,

hugs,

Sally 

[[pa...]]

Hi Parker,

 

Glad to hear you are doing so well.  Oh how we appreciate the little things in life again, to take a walk and to drink coffee - makes a big day in this benzo world doesn't it.  I so understand, even though I'm a tea drinker, love the smell of coffee but never acquired the taste. 

 

Take it easy Parker, I know you must be getting tons of messages from all of us.  Please don't feel compelled to have to respond to all.  We don't want this to stress you nor cause you revved sxs. It is sad at how little information is out here so when someone as you who as you said are still in recovery yourself, comes forth with info - it brings you forth as a star in this benzo world. I know from myself how I have copied and printed your posts as I have Bliss, or Dr Ashworth. You give such encouragement and something for people to hold on to as we travel thru this hell. You make it more real and personal because of you going thru it with us, if that makes any sense. I guess cause in a way you are touchable, where Bliss and Ashworth aren't really.

 

I hope your sxs are few.  Thanks for providing so much support, I hope you find it for yourself also.

Healing to you and all of us,

hugs,

Sally 

 

Thank you for such kindness, Sally.

 

I have not really gotten many emails. Some. But I am happy to help out anyone in this, because my suffering was SO bad and still is sometimes bad.  I figure God didn't give me a big mouth and a big heart to go through this and then just "sit on my candle".  This little light of mine -  I'm gonna let it shine!

 

This past week was hard for me. Pain and all kinds of symptoms. Then - today, my period started, and I may as well be Dorothy waking up in Oz.    Like everyone else, I cannot WAIT until this is over. But today is miraculously better.  I am learning not to worry about tomorrow and JUST being glad for today.

 

If anyone sends me an email, and if I don't have any idea, I will definitely say so. I would rather someone love me and tell me "I don't know" than to make up an answer. "I don't know" or "That's a good question" are great answers to me. They are honorabe, in that they honor the person asking.  And they deserve an answer, whether or not there IS one.

 

I love you all.  I was thinking about everyone on my walk today....how there are all these people out there in our houses just waiting and holding on to each other to heal.  In SOME ways, it is a blessing - to come back from EXTREME suffering.  But there is no way I would wish it upon myself or want to ever do it again.  Still- as that song by Frou Frou goes...

 

"So let go. Let go. 

Jump in.

Oh well, what you waiting for?

It's all right.

Cause there's beauty in the breakdown.

Let go. Let go.

Just get in.

Oh it's so amazing here.

It's all right.

Cause there's beauty in the breakdown."

 

Yep.

:)Parker