12-18 month support

[[Co...]]

Sass,...I am so sorry to hear the challenges you are up against. You have my heart. I am sure that you are much....much more support to your wife than you think you are. She is not alone and that is so huge. And you are not alone either. We are all here for you.

.....I hope you can make your trip to Disney. Even on a trip your waves will wax and wane. Somehow we manage to get through the things that we have to.

..I hope your wave lifts and your anxiety and fear fades out. You have so much to carry besides w/d.  I hope there is support just for you in your life right now....Wishing you some rest and peace.  coop

[[Co...]]

Speaking of Peace....

.....Peace, are you out there?...Are you doing ok? ...I hope you are taking a break from the board because you are feeling good and busy having a life.  Miss you. ...coop

[[Co...]]

I caught a very good break today.  I slept last night like a normal person.. .woke up happy....Happy and smiling. No yuk.  No anxiety or cortisol or depression . No d/r .....I was clear as a bell. The sun was out bright and shiny . I spent so much of the day outside. I cooked and watched a movie, read a book, thought about all the things I want to do...as in thought about them with enthusiasm and belief that they are in fact not beyond me...that I will heal.  Just like Green and Nova keep saying.

  ....I would call this an effortless mind day. I had some short lived mild d/r in the afternoon that lifted .

    I wish I could wave a wand and spread some of the sun from my window over every one of you here. We are getting better.  we are all going to heal. And then we are throwing the biggest brightest celebration ever. Mrs is in charge of planning the party. .  I am so grateful for all of you. .I couldnt do this without the support and generosity found here.  coop

[[He...]]

Hi Coop,

I am so glad to hear about your break today!  What a gift!  

 

I am doing much better again.  I had such a bad night, with lots of physical symptoms that kept me from sleeping, and it felt like today would be equally as bad...but, guess what?  By the time I started moving around and was out of the shower, I felt pretty good....and by the time I got into my classroom, I felt really good.  My day was effortless and peaceful, with ZERO symptoms, until about 3:30ish when a few light things started hovering around the edges again.  Nothing too bad. 

 

Love to you!

[[Co...]]

HH,....sounds like healing to me!.  So glad for you!.. Your post has provided so much hope and encouragement to us.

    I am wishing you another one.  And 10,000 more after that. I have a feeling that you are going to be so ready for your trip....coop

[[pe...]]

Hi Coop (and the rest of the fam )

I'm here. I'm reading along, but don't have much to add to the song. I've got little pep for pep talks and I'm tuckered from my own lamenting. So, silence seems ok for right now.

 

But I will share this, I've entered this world of genetic testing. It's some wild and detailed stuff. But a few bb's have thought that the reason some of us fair worse on benzos is because of a genetic difference, specifically something called MTHFR. So, I like to know things and I went ahead and got tested. Just like all the other bbs who have had this checked out, I too have the mutation! Now, isn't that something? What it means, I'm not entirely sure. The little I've gathered is that this MTHFR thing has to do with many things including the body's ability to detox itself and also the body's ability to make neurotransmitters. I'm still learning and boy is there a lot to learn. I'm not sure it's anything I'll treat right now, but I do see how it could be useful. There are some key deficiencies involved with it - certain b vitamins, folate, other things. I just think it's an interesting link among some of us bb's.

 

That's all for now. I do love you and keep you in my heart. I'm rooting for you and wishing you peace and joy.

 

Peace2

[[sa...]]

Coop -- Thanks for the kind words. My only supporter is my wife. I find it hard at this poitent to lean on her much. She needs me to be strong, so I just downplay things and attend to her. My family is pretty weird about this. They act nice and seem ok, but I get the feeling they are all talking about me behind my back. I think they believe this is some kind of anxiety thing and I'm somehow doing this to myself, but no one is coming out and saying that.  I just don't think people believe this can happen or don't want to believe.

 

Anyway, it's good to come and vent sometimes. I'm struggling still with this wave, which is my longest since early September. I keep telling myself that I will see good healing when this passes. I find this is often the case. When the tinnitus is raging, I tell myself that's my brain repairing itself. Noisy elves busy at work up there.

[[Co...]]

Peace, ..I totally get the no pep for the rah rah.  Sometimes we just have to take a break from all of it.

.....I have been hearing bits and pieces about genetic testing for medications in general to try to reduce bad medication reactions and individualize dose. It is fascinating. Someone in the success story site wrote about it too in her success story. ( I can't remember which success story it was). I have thought about it too.  Simply to avoid any further bad medications..The woman who spoke of it said she sent away for the testing kit and then sent it to the lab. It would be so beneficial for people to know which medications to avoid before the ' take it and see ' approach.

....It is nice to chat with you and know that you are ok and checking in....Thinking of you Peace and wishing you big healing......coop

[[Co...]]

Sass, it is good to vent. I think most people don't get this unless they have been through it. I have very good friends and my dil who just don't believe it can take 2 years to recover from benzos....and my dil is an RN. ...I can just watch the disbelief on thier faces when I say benzos can cause anxiety, people can become physically dependent in a matter of weeks and tolerance is not fixed by upping the dose....they just stare at me with ' the look' and nod thier heads.

It's ok...I don't expect them to get it...and I can't help what they think so I let it go.

  ..You have support here Sass ...and you are free to vent.. and vent some more.  Wishing you a better day tomorrow.  coop

[[Gr...]]

Speaking of Peace....

.....Peace, are you out there?...Are you doing ok? ...I hope you are taking a break from the board because you are feeling good and busy having a life.  Miss you. ...coop

 

I was thinking of Peace today, and hoping the very same thing.

[[Gr...]]

I caught a very good break today.  I slept last night like a normal person.. .woke up happy....Happy and smiling. No yuk.  No anxiety or cortisol or depression . No d/r .....I was clear as a bell. The sun was out bright and shiny . I spent so much of the day outside. I cooked and watched a movie, read a book, thought about all the things I want to do...as in thought about them with enthusiasm and belief that they are in fact not beyond me...that I will heal.  Just like Green and Nova keep saying.

  ....I would call this an effortless mind day. I had some short lived mild d/r in the afternoon that lifted .

    I wish I could wave a wand and spread some of the sun from my window over every one of you here. We are getting better.  we are all going to heal. And then we are throwing the biggest brightest celebration ever. Mrs is in charge of planning the party. .  I am so grateful for all of you. .I couldnt do this without the support and generosity found here.  coop

 

Coop, I am so very glad you're in a better place.  I think sun and nice weather helps, so I'm glad you had some of that.  Truth be told, in spite of my rah-rah,, this sh*t is getting on my nerves. Can't wait for spring.  although, realistically, I'm better off pacing myself.

[[dr...]]

Coop...what a great post to read about you feeling great today   I love reading those posts. 

 

I'm so exhausted I'm off to bed. Even though I just let the panic attacks and anxiety pass through me it's still exhausting. Nite all!

[[Sk...]]

I caught a very good break today.  I slept last night like a normal person.. .woke up happy....Happy and smiling. No yuk.  No anxiety or cortisol or depression . No d/r .....I was clear as a bell. The sun was out bright and shiny . I spent so much of the day outside. I cooked and watched a movie, read a book, thought about all the things I want to do...as in thought about them with enthusiasm and belief that they are in fact not beyond me...that I will heal.  Just like Green and Nova keep saying.

  ....I would call this an effortless mind day. I had some short lived mild d/r in the afternoon that lifted .

    I wish I could wave a wand and spread some of the sun from my window over every one of you here. We are getting better.  we are all going to heal. And then we are throwing the biggest brightest celebration ever. Mrs is in charge of planning the party. .  I am so grateful for all of you. .I couldnt do this without the support and generosity found here.  coop

 

Happy and smiling, sounds like you had a beautiful day. I had a nice day too, yesterday,  but today it's back to business, and my heart palps are really wild.

 

I had awful nightmares, that had me shrieking in my sleep......... I had not had such a bad night since acute in 2014. And my bladder seem to get worse which is so counterintuitive,  but there you are, that's benzo wd for you.

 

HAng in there everybody, and have a better day. 

 

[[Sk...]]

Hi Coop (and the rest of the fam )

I'm here. I'm reading along, but don't have much to add to the song. I've got little pep for pep talks and I'm tuckered from my own lamenting. So, silence seems ok for right now.

 

But I will share this, I've entered this world of genetic testing. It's some wild and detailed stuff. But a few bb's have thought that the reason some of us fair worse on benzos is because of a genetic difference, specifically something called MTHFR. So, I like to know things and I went ahead and got tested. Just like all the other bbs who have had this checked out, I too have the mutation! Now, isn't that something? What it means, I'm not entirely sure. The little I've gathered is that this MTHFR thing has to do with many things including the body's ability to detox itself and also the body's ability to make neurotransmitters. I'm still learning and boy is there a lot to learn. I'm not sure it's anything I'll treat right now, but I do see how it could be useful. There are some key deficiencies involved with it - certain b vitamins, folate, other things. I just think it's an interesting link among some of us bb's.

 

That's all for now. I do love you and keep you in my heart. I'm rooting for you and wishing you peace and joy.

 

Peace2

 

When I have a brain, I so want to know more about this !!! Peace, do you think it might connect to other issues as well ? do you know ? I mean, for future knowledge, for our wellbeing.

 

And if it is genetic, does that mean we pass it on to our children ? Peace, I hope you will let us know if there are any updates in  this ?

 

Sorry to hear you are suffering so much. I too, feel like I am posting always the same things, and I am tired of only complaining all the time.

 

Sending healing thoughts  your way .

[[Co...]]

Green,..... It does knaw on our nerves.it's such a daily challenge. My RA is a pinic compared to this. A few more months and we are going to be on the upside of this. My window is dimming with some insomnia. I knew it would happen as my windows never last more than 24-36 hours, but they are becoming more frequent even if they are only half days or a couple of hours. ..

.......Spring is right around the corner..I know you are still shoveling and scaping snow...that alone has to be chewing on your nerves....it has to end....the snow and the w/d. ..We are going to get through this.. Wishing you some big sunbreaks....coop

G

[[Gr...]]

I caught a very good break today.  I slept last night like a normal person.. .woke up happy....Happy and smiling. No yuk.  No anxiety or cortisol or depression . No d/r .....I was clear as a bell. The sun was out bright and shiny . I spent so much of the day outside. I cooked and watched a movie, read a book, thought about all the things I want to do...as in thought about them with enthusiasm and belief that they are in fact not beyond me...that I will heal.  Just like Green and Nova keep saying.

  ....I would call this an effortless mind day. I had some short lived mild d/r in the afternoon that lifted .

    I wish I could wave a wand and spread some of the sun from my window over every one of you here. We are getting better.  we are all going to heal. And then we are throwing the biggest brightest celebration ever. Mrs is in charge of planning the party. .  I am so grateful for all of you. .I couldnt do this without the support and generosity found here.  coop

 

Happy and smiling, sounds like you had a beautiful day. I had a nice day too, yesterday,  but today it's back to business, and my heart palps are really wild.

 

I had awful nightmares, that had me shrieking in my sleep......... I had not had such a bad night since acute in 2014. And my bladder seem to get worse which is so counterintuitive,  but there you are, that's benzo wd for you.

 

HAng in there everybody, and have a better day. 

 

Sky,

 

I'm so sorry you had that bad night, and I must have been channeling you across the Atlantic.  I didn't even get to sleep for the nightmare.  I couldn't sleep, so I'm like okay, but then the awful thoughts, and not my normal intrusives, came along, weird, evil scary, like my mind is unhinged, I'm going to crack up, I can't explain, like my sanity was a very slippery slope, and I had that evil voice in my head that hasn't been there, as you said, since 2014.  fell asleep early morning and slept through my alarm, therapy.  I was the last one on the bus for this wave, and I'm hoping it's done for all of us very soon

[[Gr...]]

Hi Coop (and the rest of the fam )

I'm here. I'm reading along, but don't have much to add to the song. I've got little pep for pep talks and I'm tuckered from my own lamenting. So, silence seems ok for right now.

 

But I will share this, I've entered this world of genetic testing. It's some wild and detailed stuff. But a few bb's have thought that the reason some of us fair worse on benzos is because of a genetic difference, specifically something called MTHFR. So, I like to know things and I went ahead and got tested. Just like all the other bbs who have had this checked out, I too have the mutation! Now, isn't that something? What it means, I'm not entirely sure. The little I've gathered is that this MTHFR thing has to do with many things including the body's ability to detox itself and also the body's ability to make neurotransmitters. I'm still learning and boy is there a lot to learn. I'm not sure it's anything I'll treat right now, but I do see how it could be useful. There are some key deficiencies involved with it - certain b vitamins, folate, other things. I just think it's an interesting link among some of us bb's.

 

That's all for now. I do love you and keep you in my heart. I'm rooting for you and wishing you peace and joy.

 

Peace2

 

Wow, that's so interesting.  I had the 23andMe testing done.  Do you know what the SNP is for that deficiency?  I've heard of it before, but in relation to chronic fatigue.  it's so good to know if we have this stuff, for future reference.  Funny, my doctor was very condescending when I said I was having it done.  which is dumb, because I think genetics is the future in medicine.

[[Gr...]]

Green,..... It does knaw on our nerves.it's such a daily challenge. My RA is a pinic compared to this. A few more months and we are going to be on the upside of this. My window is dimming with some insomnia. I knew it would happen as my windows never last more than 24-36 hours, but they are becoming more frequent even if they are only half days or a couple of hours. ..

.......Spring is right around the corner..I know you are still shoveling and scaping snow...that alone has to be chewing on your nerves....it has to end....the snow and the w/d. ..We are going to get through this.. Wishing you some big sunbreaks....coop

G

 

Coop, I hate to be negative, but I had a brutal night last night.  I wrote about it replying to Sky, the post is somewhere around here.  I had that soft, mushy head/brain feeling?  what is that?  it hurts, but it feels like swelling.  is that why you and Nova were asking about meningitis?  or was that from the stiffness in the neck and shoulders?

 

Meantime, I am trying to put it behind me.  I'm making  a conscious effort to get dressed and get out the door.  I have a ticket for You Can't Take it With You.  Just me, I'm going.  Life goes on, it sure does, lol.

 

Love you, Coop

[[Lo...]]

Hey everyone, praying all is well. Did any of you deal with poor balance and leg weakness/jelly legs? Poor balance just seems to not want to leave me and I'm experiencing jelly legs again. I have these weird sensations in my legs.

 

Its taking me a lot to not scream and cry at my desk at work.

 

I don't want to stop walking...ever! I've read horror stories on bb's of folks not being able to walk, severe weakness, etc.

 

Anyway...pray for me. I sometimes feel like this living nightmare will never end.

[[dr...]]

LM I get the same things and I get the scary thought of being bed ridden too.  I then remind myself I haven't read of one person becoming bedridden this far out as a new symptom.  It has been a constant symptom for you that waxes and wanes but you haven't been not able to walk yet.  It is the benzo brain causing the irrational fears so you have something to panic about.  Hope you feel better soon. 

[[dr...]]

Hi all...this am I woke up with the "does it get any better than this? "thought.  I just feel so worn out of feeling worn out   The chronic fatigue is ridiculous.  Not much to add.  Not freaking just soooo tired.  Haven't been sleeping well so I am dragging through every day. 

[[Co...]]

Green,once again we are on the same bus of hell out of w/d. Ye,.  the awful head stuff is exactly what Nova and I talk about. The swelling /pressure sensation ...you describe it perfectly. I refer to it as head pressure .I get moderate to crazy d/r with it. ..and of course the health anxiety...Nova calls it " meningitis worry"... I call it stroke / brain tumor lies.

...It is my worst sx right now....and sure enough, after an effortless mind day yesterday.. it's back with the boaty feeling .. 2 hours of sleep last night....I am on the bus with you today....I am so mad....mad mad that benzo is causing you ....and Sky and Drew...and Sass..and HH ..and Peace so much pain and worry....

....Yay to you for going  to the play anyway...I am borrowing courage from you today. I am tring not to dissolve into anxiety because my great window closed...slammed. ...you are right ...life goes on and this will end.  On days like this I just thank God that I am not in taper.. or the first 6 months. or the first year anymore.

  ..I also am fascinated by the genetic testing for drug sensitivities .. I think it can save alot of agony.  and loss of life. It is the big deal right now for individualizing chemo. Why wouldn't we do this? ...It makes so much more sense than..." here, take this... call if you have side effects".  I  am definitely going to find out how to get it done. I have had bad reactions to practically every pain med known to man.

...Hold on Green.. We are going to get through this. The head stuff is w/d.. It wouldn't come and go if it wasnt. Minnie started a head pressure thread ...her posts ( you have to go back to June/July and earlier ) are very encouraging. She had it every single day for 7 straight months and then it went away. ....She was absolutely resolute in believing that it would leave... way stronger girly than me...

....Love to you too Green...I am thinking of you today. You are out in the world with sx and I am resisting the impulse to go back to bed ....so tired of this... ...coop

[[Lo...]]

LM I get the same things and I get the scary thought of being bed ridden too.  I then remind myself I haven't read of one person becoming bedridden this far out as a new symptom.  It has been a constant symptom for you that waxes and wanes but you haven't been not able to walk yet.  It is the benzo brain causing the irrational fears so you have something to panic about.  Hope you feel better soon.

 

Your reassurance means a lot to me. My legs were seriously worked in 2 days. Going up and down a flight of steps 3 times for laundry, cleaning off the snow off of my SUV, climbing over mounds of snow today then I did a light workout last night.

 

I'm feeling a little shaky too (anxiety/panic/fear).

 

This is a lot. Drew we have to make it. Sorry you aren't feeling well.

 

Sending you lots of healing & love!

[[Co...]]

Sky,...so sorry to hear this. It is so cruel to have a good day dissolve back into w/d... it's really a wonder that we are still marching on with this. My very good day went to hell too...I knew it would, but every time I have an effortless mind day I am tempted to think , "this is IT, I am healed".  to wake up the next day back in w/d thinking, " This is IT...I am dying for sure"..  It's so very difficult to have any kind of life like this.

.....So so sorry Sky that you are on the bus with me and Green. Wishing you some sunbreaks ...and a ton of better sleep....coop

[[pe...]]

Hi Coop (and the rest of the fam )

I'm here. I'm reading along, but don't have much to add to the song. I've got little pep for pep talks and I'm tuckered from my own lamenting. So, silence seems ok for right now.

 

But I will share this, I've entered this world of genetic testing. It's some wild and detailed stuff. But a few bb's have thought that the reason some of us fair worse on benzos is because of a genetic difference, specifically something called MTHFR. So, I like to know things and I went ahead and got tested. Just like all the other bbs who have had this checked out, I too have the mutation! Now, isn't that something? What it means, I'm not entirely sure. The little I've gathered is that this MTHFR thing has to do with many things including the body's ability to detox itself and also the body's ability to make neurotransmitters. I'm still learning and boy is there a lot to learn. I'm not sure it's anything I'll treat right now, but I do see how it could be useful. There are some key deficiencies involved with it - certain b vitamins, folate, other things. I just think it's an interesting link among some of us bb's.

 

That's all for now. I do love you and keep you in my heart. I'm rooting for you and wishing you peace and joy.

 

Peace2

 

Wow, that's so interesting.  I had the 23andMe testing done.  Do you know what the SNP is for that deficiency?  I've heard of it before, but in relation to chronic fatigue.  it's so good to know if we have this stuff, for future reference.  Funny, my doctor was very condescending when I said I was having it done.  which is dumb, because I think genetics is the future in medicine.

 

I agree, Green. I think it's the future too. I think doctors are scared for some reason, maybe scared of becoming obsolete? I ran my results through genetic genie, they have a free way to decipher results which will tell you if you have the MTHFR mutation. I can't be of too much help. most of it is over my head.

I am working with a big bucks lady who came recommended to me. I want to figure some of this out, more for my future wellbeing than for right now. The woman I'm working with said 40% of the people she works with come to her because of an adverse reaction to a medication. But she's an ND who also has the mutation. It seems like it's her main focus, helping people understand their genetic results and treat any symptoms. Again, not thinking this cures benzo brain damage. But I'm hopeful it will help in the future.

 

Love,

Peace2