12-18 month support

[[je...]]

 

Nova- Vit D deficiency seems to be very common in benzo w/d. Thanks again for all your info yesterday, it really helped me.

Hi Drew, good to see you

Coop--Let us know how your dr. visit goes.

 

 

Also, I got sick with the flu when I was on benzos and stopped taking them for about 10days. I kept getting sicker everyday--had no clue it was due to w/d. So, basically I c/t myself without knowing it. So, um yeah I really did a number on my poor brain.

[[pe...]]

Hi Folks ... this is going to be long-winded and I hope interesting ...

 

Met with a sleep disturbance specialist this morning ... why did I do that? ... because I am a wimp ... well, that's part of the reason anyway ... turns out that moron I saw in internal medicine a couple of months ago regarding the blood pressure issue I had a couple of months before that ... wrote back to my GP that I had sleep apnea and needed to go back on the pap machine without delay ... this was the guy who told my I had no issues with clonazepam ... I was old, over-weight and he really didn't have any time to go over any more with me because he was very busy ...

 

Anyway, my GP got me to agree to be tested for sleep apnea again ... and she knew my utter reluctance and told me it would be two or three years before they got around to me ... so I agreed ... the wimp strikes again ...

 

So, the sleep clinic called late yesterday and told me they had a cancellation and would I come in ... I said okay ... wimp strikes again ...

 

Went in, they gave me several pages of forms to fill out ... which I did ... and wrote across the top of each one ... "Do not come to any conclusions until you show me the courtesy of talking to me first" ...

 

Well, the sleep doc came out and got me ... took me back to her lair and introduced two med students whom she asked my permission to be involved in the consult ... okay by me ...

 

Two and a half hours later ... actually had to have a pee break ...

 

1. clonazepam contributes to sleep apnea as a muscle/facia/tissue relaxant, especially on a high dose ... can actually cause it sometimes ...

 

2. clonazepam can set the stage for pedal edema ... which is then triggered by mid to high dose beta blockers ...

 

3. it is dangerous and counter productive to be on all benzos and ssris long term ... and ... they have no proven long term efficacy ... to be used only short term as an adjunct therapy ...

 

4. unless otherwise needed ... slow tapering is the best way to come off these drugs ...

 

5. however you come off the drugs ... stay off them permanently ...

 

6. recovery can take 18 months to as much as three years ... remembering that everyone is unique ... nothing is written in stone ...

 

7. everything I presented to her from the last 25 years is benzo related ... tolerance, withdrawal, and recovery ... every damn symptom ... digestive, heart and bp, muscle pain and spams, head pressure, mood stuff, intrusive thought stuff ... the entire nine yards ...

 

She is a sleep doc with a degree in psychopharmacology from Britain ... small world ...

 

When we were done ... she turned to the med students and asked if they had any questions for me ... they both sat there with kinda stunned looks on their faces ... maybe a little shell shocked ... they had said nothing during the whole process ... the entire conversation was between the doc and I ...

 

She said to them ...

 

1. the first thing you have to do is listen ...

 

2. the second thing you have to do is validate his story ...

 

3. then you can begin the process of diagnosis ...

 

Then she asked them, "how would you recommend we proceed?" ... silence ...

 

Then she asked me that question ... I said that I would consider doing the sleep apnea test again if she felt it worthwhile ... she asked me why ... I said that because I am still out of shape, overweight, and a smoker that it would probably be a good idea ... she said okay ... she would get back to me in a while ... she had to consider how she would go about the testing ... we will talk again ...

 

I am still in shock ... my whole world has been turned upside down ... somebody actually listened ... when she told the med students they must validate the patient's story I actually wept ... for a while I felt a lot of the anger, rage, releasing out of me ...

 

She asked what was happening for me just then ... I told them being seen, being heard, is so very, very necessary ... and that this was the first time anyone listened ...

 

So, I had a very good morning ... and ... you just never know ... the old adage ... showup, be present, tell the truth ... really means something ...

 

Have a good day Folks ...

 

What a blessing to the world, this woman who listens. What a blessing to us, our brave Nova who tells the story so that she can hear.  :smitten: :smitten: :smitten: :smitten:

[[pe...]]

Conferences completed, home from our family trip, a few days off and I can be on the boards a bit more for catching up. Some of the reason I've been doing so much is because my husband is out of sorts in a major way. He is completely worn out and tired of being in charge of all of us. I think we can weather this, but there's part of me that's just not sure. I am still fighting this fight and I also feel like I have to fight for my marriage and my little family. That's a lot of fight for this very tired body. I feel like my head is going to roll off of my body. Plunk on to the floor.

 

HH- It sounds like you are getting there! I'm so glad you had a great trip! I'm going to look up your posts so I can read more about it.

 

Sky- 17 months is so much closer to healed than you were even a month ago.

 

Kisses to you all-

Peace2

 

 

[[sa...]]

Peace,

 

This is hard on our families. It's amazing how much they pick up the slack, but it is very draining on them as you are now seeing. I get the rolling eyes and  "when will you be better" looks.

 

When we go through this, they are putting their lives on hold as well, and they feel fine. The frustration just builds for them and when we can't do things or have to cancel plans, they get deflated. I just keep telling my wife that I'm better than a few months ago and give her examples of things that we did that I could not have done this time last year.

 

They are so close to this that they don't see the little month to month progress. Hang in there. Hopefully our families will be still there when we get better. They will love the new you once you are cured. You'll be able to do things you never could do before on the stupid drugs.

 

Stay strong

~ Sas

[[Sk...]]

Conferences completed, home from our family trip, a few days off and I can be on the boards a bit more for catching up. Some of the reason I've been doing so much is because my husband is out of sorts in a major way. He is completely worn out and tired of being in charge of all of us. I think we can weather this, but there's part of me that's just not sure. I am still fighting this fight and I also feel like I have to fight for my marriage and my little family. That's a lot of fight for this very tired body. I feel like my head is going to roll off of my body. Plunk on to the floor.

 

HH- It sounds like you are getting there! I'm so glad you had a great trip! I'm going to look up your posts so I can read more about it.

 

Sky- 17 months is so much closer to healed than you were even a month ago.

 

Kisses to you all-

Peace2

 

Peace, I know what you are talking about. Even mr Sky, he keeps  telling me it will take as long as it takes. But sometimes, I can see how tired he is of having to always be the one in charge, the one to have to worry about things and planning our expenses.

 

Some times, I feel so guilty, I almost wonder if I am hiding behing my wd. But it's not the case, that too is a benzo lie perhaps, I too am tired of having to depend on somebody else for almost every single thing. Nobody could want this, I want to be  in charge again, to be able to have a credit card in my wallet and many other  practical things, the list is long.

 

Hang in there, you can do it.

[[No...]]

Hi Peace ... glad to "see" you ...

 

Yes, this stuff does take its toll on our families ... this journey is hard on all those around us ... 

[[No...]]

Coop ... how are you doing? ...

[[No...]]

Running out of steam ... shutting down for the night ...

[[pe...]]

Thank you Sky and Sas. YOur responses are just the kind of thing I needed to hear. Oh how hard and long for us all! My husband has been amazing through this. He tells me all the time that he doesn't think I'm crazy, that it's all the drugs and that he's seeing lots of improvements. But he's tuckered out from working full time, managing our household and doing most of the parenting for our little boys. It's been this way for 2.5 years.  :'(

But I had the day off from work today and I cleaned and shopped then did yard work with my children when they got home from school while he rested. I'm hoping some breaks will help him relax and get the next wind he needs to see this thing through.

 

Thanks for being so sweet and lovely.

 

Goodnight Nova.

 

Peace

[[je...]]

Peace, it really is so very hard on our spouses. Consider yourself very lucky to have such a supportive husband. My husband won't talk to me about my w/d.. ..at all. He says he believes me, but he gives me "the look" whenever I bring it up, so now I just don't talk to him about it ever. That alone has put such a strain on our marriage because well, I'm very alone in this so it really makes me resent him at times. Other times I feel guilty he has to deal with a very moody wife who has a hard time doing things. Its all very hard and complicated on both parts, but I think in your case you will both end up with a stronger marriage because of all of this. Glad you are feeling better. 

 

P.S. on a positive note he thinks the genetic testing is a good idea, so I'm going to be doing it soon. Love ya

[[dr...]]

Hi all...I just tell my gf when things are really bad or good.  She's understandably tired of all this.  I wish she could be more supportive but she's stuck w me through all of this so that says something   I really don't blame her.

 

On a happy note I feel the best in six weeks.  No anxiety or headache. 

[[je...]]

Drew-- told ya so

[[ga...]]

Drew....very happy to hear you're doing better.  Nice to have the support of family and friends through this.

 

My sleep has (#(($)@ the past few nights.  Really hit hard with sleep deprivation at this point.  Usually and can do some exercise but today was different.  Just moped around the house not feeling like doing much other than watch T.V.  Not my norm even after not sleeping.  Last night I just wished something would happen to put me out of my misery.  Very disturbed night pacing around tossing and turning.  Hope for better for everyone that has been dealing with sxs.

[[Co...]]

Peace...Hi Mighty Girl...Happy to see you here tonight..So glad it is Spring break...you really sound good except for your head plunking on the floor. ...Our poor families...they didn't sign up for any of this and it can be such an invisible thing. We look kind of like the person they know, but we act like zombies or space aliens. You sound like you are all going to come out of this beaten up but strong. If I had to have someone fighting for me I would want someone as tenacious and determined as you.

.....hope you rest well tonight ...love to you.  coop

[[Co...]]

Hey Drew ...health fear cell mate....you sound really good!.  So happy to hear that.  You give me heart to keep going. No headache...no anxiety.. so good.

....thanks for dropping by to say hi....we love you....coop

[[pe...]]

Oh Coop,

I am feeling very beaten and scared. I hust had a twinge of the ugly thing that haunts me. I guess it's depression. Like nothing good in the world will or has ever existed. It's the thing that makes it impossible to even look at my children. I hope it's exhaustion. I hope it doesn't stick. It's been gone a good long time and I sure don't know what I'll do if it comes back.

 

Bath then bed. Will check in in the morning. Hoping I wake to anything but that darkness.

Peace2

[[Co...]]

Sky... how are the vibrations ? .. Are you back home now?

...You are probably in bed as I think this is the middle of the night in Italy.  I hope tomorrow is your no vibration day. Are you still getting some sunbreaks? ...they are such great little promises of healing....coop

[[Co...]]

Ohhh Peace...I am hoping with you that it just dies away. That's exactly how I feel about my anxiety and panic.  Sending prayers your way.. and wishing you sleep....coop

[[Co...]]

Jenny, ...I am so sorry your hubby is burned out ...my daughter is showing signs too of .."  again? ..still ?...can't you just stop thinking about it?"...and I am particularly careful not to say anything too graphic to her. ..It's so important to be able to talk about this and have support. I would be lost without BBs.. Jenny, pm me anytime you want to.

....You are making your way through this...you can only do what you can do. .. How is your anxiety? .. Wishing you good sleep and sunbreaks tomorrow.  coop

[[Co...]]

Goodnight Nova.  Sleep good...talk to you tomorrow...coop

[[Co...]]

Just a catch up.. My physician appointment went fine...it was just a blood draw and a consult. My thyroid is off and I will have an ultrasound on it. It's not off a lot and I don't have antibodies to it ( some funky thing about thyroids that I don't understand)...

  .The consult part was not as positive as Nova's physician visit. ...My pdoc is supportive of my w/d, but I can tell he doesn't agree with me that I can still be having sx at 17 months. He was very politely condescending. He gave me the obligatory " you know there are many very good antidepressants that we could try".  I let him know that I wouldn't agree to any psych meds...he seemed to accept that and didn't push for the antidepressants from that point. He doesn't want to believe that my panics are w/d but he's not insisting on further evaluation. He did recommend an antihistamine for panic since don't want the ativan.  Got the standard on that, " you know many people take it all thier lives and are just fine on it".  I must look like a crazed woman  ( actually I am, but I thought I was doing a pretty good job of pretending to be just a run of the mill old girl). I know believes  I want to be be drug free and he isn't pushing ( too much). ..he is just not ' with me.

.  .This is the part that upset me:...He gave me the same lecture others have been handed about the forum. ...We talked briefly about strategies for sx and I talked up the forum .. I think he audibly clucked .. really. I was told that I needed to develop "actual social relationships with real people" I heard, " You are already a little unhinged ...having imaginary friends will not be a good thing".. They must all have a special highlighted passage in thier texts because he also insulted people on support forums with, " Most people on support forums are people who are unable to have successful social relationships in thier lives".  What the hell is all that about..I told him I have met wonderful people here ..that I couldn't have come this far without them...He dropped the subject  by pretty much dismissing what I had to say

    So.  that was that.  Some anxiety today but no panics. d/p/r in and out.  Maybe an 80% baseline.  I will take it.

  So blessed by every one of you.. thank you for all the support.. Wishing everyone restful sleep .  coop

[[mr...]]

Drew-- told ya so

 

[[Co...]]

Garton...what are we going to knock you out with? ...jk...Sorry you are sleepless again. It's amazing what we can do on little to no sleep. I never in a million years thought 5 hours of sleep would be a good night....I hope your night is better tonight.  coop

[[je...]]

Jenny, ...I am so sorry your hubby is burned out ...my daughter is showing signs too of .."  again? ..still ?...can't you just stop thinking about it?"...and I am particularly careful not to say anything too graphic to her. ..It's so important to be able to talk about this and have support. I would be lost without BBs.. Jenny, pm me anytime you want to.

....You are making your way through this...you can only do what you can do. .. How is your anxiety? .. Wishing you good sleep and sunbreaks tomorrow.  coop

 

 

Coop- you are such a sweetie, thank you so much for all your support. I'm glad your Dr appt went well and you didn't have any panic. Too bad he's not benzo wise, but we all  know that the majority of them are not. Funny how they all seem to think support forums aren't a good idea...I hope I can one day get to a Dr without a full blown panic.. My son has a appt with a specialist in a few weeks so we can figure out his breathing issues, and I'm already feeling nervous about it-- its crazy I know the appt isn't even for me, hope I can handle it better than the last one. Have a good night coop, jenny

[[Gr...]]

Green....HAPPY HAPPY 17 Month Anniversary....♡♡♡♡.

....I am wishing you huge windows and progress in this month. Thank you for  being here with us.. your presence here is invaluable...."Nobody gets left behind".. thank you so much for all the support along the way. 

.. ...love love to you.  Coop

 

that would be Sky's 17th, Coop!