12-18 month support

[[No...]]

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 ...

[[Fi...]]

Wow.  Interesting, Nova.  So glad  these guys got to hear the truth of what we're all going through. 

 

Hey, my husband sleeps with a Cpap mask.  I think it's helped him be less fatigued during the day and it's an ENTIRELY DRUG FREE Rx!  By the way, he would have sworn he was sleeping perfectly fine, but I insisted he get this checked with his doc and a sleep test.  His score was miserable.  This is one reason why I continue to be a person who doesn't keep my mouth shut when I think I see something going on.

[[Co...]]

Nova, first of al PLEASE PLEASE never ever again refer to yourself as a wimp.  You are so very brave.

.  Second of all.. I am so happy to hear that you are ok.

....And God Bless you. This post will get me through another day of anxiety... without begging the universe to deliver a 'dafe' drug to me to make this all go away.  Thank goodness we have 16-20 months done ..those of us who jumped on the thread last summer.

..Nova...what a wonderful windfall that you encountered this physician....

..I hope this visit eased your mind a thousand times over..and thank you from the bottom of my heart for taking all the time to type that out and share it with us....love to you...coop

 

[[je...]]

Nova,

This is such great news! To be validated must have felt beautiful and those tears were a release of everything you've been feeling... simply beautiful. Im so happy that this was a pleasant Dr apt and we all benefitted from it too, so thank you for that.  If Im honest with myself I think Im going to take at least 3 years to heal, I just have too many lingering sx. That is not to say I will be miserable the whole time, but I still have a lot of healing to do. I think the timeline she gave you was pretty accurate. Hugs my friend, Jenny

[[Sk...]]

Nova, thanks.

 

Btw, my friend is no wimp !

 

I am so happy to hear you had this moment, some validation. Heaven knows you deserve it. Big hugs.

[[No...]]

Hi ... it was quite a curious experience ... I expected another "medical appointment tussle" ... and another one I would walk away from ...

 

I guess you just never know ... I really felt she "saw" me and the stuff I was going through while I was answering questions and relating my story ...

 

At one point she said "you look like you are going through recovery" ... and she said that people who can get this far out are truly remarkable ... she said in some ways this is the hardest time for several months ... and ... all I have to do is keep going ...

 

To hear that face to face is such a blessing ... it ices the cake of all the encouragement and support I have receive here on BB ...

 

Not a bad day ...

[[Co...]]

Thank you Nova for sharing her comments with us.  A collective sigh of reassurance can be heard throughout.  Enjoy your day dear friend.  coop

[[No...]]

Coop ... sorry to hear you are in the soup again ... I had a pretty lousy night and this morning was pretty messy ... the guts and head pressure stuff running around ...

 

Last night's snow melted ... now they just have to melt the stuff from the last two months ... 

[[No...]]

Hi Sky ... how are you doing? ... hope you day is pleasant ...

[[No...]]

Jenny ... seems we get to this 90% plateau and hang out there for a while ... which is okay ... and also frustrating ... have never seen or heard a good explanation for that phenomena ...

 

Be Well ...

[[Co...]]

Thanks Nova...yep this is a hard one...cascading anxiety /panic.. Wishing like heck there was something to take.  Just have to get through it. I could literally crawl out of my skin. I went through this in month 6 ...what the heck.. here it is again

......your post is helping....coop

[[Sk...]]

Hi Sky ... how are you doing? ... hope you day is pleasant ...

 

Hi, I am ok, not too bad. Today is my no vibrations day. I am at my mother's place, it takes me a long time to adjust to the change.

 

I feel I can  measure my healing to how I react to coming to my hometown. If things still evoke horror, catastrophe, if I still feel terrified about my mother's health, then that means there is still quite some healing to do.

 

So many thoughts, most of them sick thoughts, this is not me yet.

 

I missed you guys.

 

Nova, it must have felt  so liberating and I am  so glad  you got this moment.

[[No...]]

Sky ... what, no vibrations today? ... you must be so disappointed ... 

 

Enjoy your visit ...

[[No...]]

Coop ... wanting to get out of my skin ... haven't been there in a while ... that is really lousy ...

 

If I remember ... and that can be doubtful at times ... I would try to really slow down ... real, real slow ... and go to the sensory place ... touch - smell - sight - taste ... and exaggerate the slowness ... focus all my attention on whatever I had chosen ... music never helped because I would try to follow it and I would start speeding up again ... usually went with smell ... teas - flowers - lavender ...

[[Co...]]

Thanks Nova...the panic from hell...seems like it's been going on for hours and hours...but just 3 hours...can't believe this

[[No...]]

Coop ... okay ... how about tea time ... let's take the next hour to have a real slow cup of tea ... won't fix the panic ... but I might help you leave it alone for a while ... create a little space between you and it ...

 

Getting the teapot ready ... putting some water on ... choosing a teabag ... slow and deliberate ... listen to the water warming up ... anticipating the smell of the tea ...

 

Then ... no sipping yet ... smell the fragrance of the tea ... take your time ... real slow ...

 

After a while take a sip ... no swallowing yet ... feel it ... the warmth and the fragrance ... then swallow ... then again and again one sip at a time ... real slow ...

 

All your attention on the tea ...

[[Co...]]

Thank you so much Nova...will give it my best...

[[No...]]

Coop ... no trying ... just doing ... whatever happens is your best ... nothing to be achieved here ... just a little soothing perhaps ... I will stick around for a while ... 

[[No...]]

Coop ... just trying to create a little room, a little space ... for the panic to be here and for you to be here ... nothing has to disappear for the soothing to come ... there is room for everything ...

[[Co...]]

It's ok Nova, you don't have to be chained to this.  I am lying still and flat .  It has gone from 10.8 to 8.5...you are such a friend Nova....I will log back on if it escalates again. 

[[No...]]

Coop ... good ... and I don't feel chained to this ... I can do a jigsaw puzzle and talk with a buddy at the same time ... my mind is ambidextrous ... 

 

Take some rest for a while ... if that is where you are ... 

[[Co...]]

I made an appointment to go in tomorrow and have my thyroid checked . I have an enlarged thyroid with nodes. The nodes can be ' hot'  meaning they secrete extra thyroid which can cause anxiety. .. probably just w/d... but really!  17 months out. 

[[je...]]

Thanks Nova...the panic from hell...seems like it's been going on for hours and hours...but just 3 hours...can't believe this

 

 

Coop, I'm right there with you today. My mom callede today to tell me she thinks my dad might be having more heart problems ( he had a triple bypass 10 years ago) well her saying that triggered some serious health anxiety-- I just started telling myself that I must be having heart problems and circulation problems which is the real reason I have so much nerve pain. Its taking everything i have to to not start googling heart problems.... I'm still sitting here freaking out over this... I pray this passes quickly for us Coop. Love to you, jenny

[[No...]]

Jenny and Coop ... we are all connected ... and this is really hard stuff for us ...

 

Jenny ... I am sorry to hear about your dad ... and googling will not help either of you ... we know that ... and it is really hard to sit with it ... not knowing ...

 

[[Co...]]

Jenny bless your heart...literally bless your heart. I have the same 0-60 trigger. I was dizzy this morning and my b/p was climbing ( because of the anxiety) ...My head had that panic pressure and d/r.  and then I was off and running with wild thoughts of strokes and heart attacks. When I am rational I tell myself that I am doing everything possible to protect my heart...Meticulous nutrition ( no processed, next to no sugar, mostly vegetarian...don't drink...although I could start...jk, don't smoke.  ) When I am rational that helps...I am so sorry Jenny that you have health fear it is just a torture. I hope your dad is ok.. remember.. you probably are more health conscience than maybe he was as a young man. We know so much more now. ...Have you had a heart evaluation to reassure yourself that your heart is healthy?

....my heart is with you Jenny...coop