The Klonopin Klub#2

[[Tr...]]

TRY,

 

I had a few instances of DP/DR. Not long lasting. But maybe I was in it and didn't know it. I had a phase of existential realism, that's what I'd call it.

 

The weather is cool. My hands are freezing. I have pressure above my eyes.  tired, though I slept—no, I didn't sleep well last night—but usually get 6-8 hours.

 

Bennie

 

Bennie, I hope this wave passes soon.  Again, my apologizes for the link, it was not at all, in any way intentional.

 

TRY

[[Be...]]

TRY,

 

I had a few instances of DP/DR. Not long lasting. But maybe I was in it and didn't know it. I had a phase of existential realism, that's what I'd call it.

 

The weather is cool. My hands are freezing. I have pressure above my eyes.  tired, though I slept—no, I didn't sleep well last night—but usually get 6-8 hours.

 

Bennie

 

Bennie, I hope this wave passes soon.  Again, my apologizes for the link, it was not at all, in any way intentional.

 

TRY

 

I hope your wave passes soon too. And mine. I am deep breathing but man, so hard to get my breathe down into my belly. If it's not one thing, it's another. Jittery as all get out. Good thing I don't ice wedding cakes.

[[my...]]

Gilster, I had been thinking about you and the hurricane and hoping you would be alright.  Good to know you are. 

 

You know - and this is for anyone - I had really thought that the lower I went, the EASIER it would be as my sxs have lessened a great deal from what they were not only at the outset of my taper - eons ago, it seems... - but also during the first year, aside from the long hold last summer.  Really, I have felt better and better...feeling that I was healing as I went down.  Now, though, I'm actually scared that if I keep up this pace and this amount each cut, the percentages are going to begin to bite harder and harder until I will have to rethink the end of my taper and drag it out past the end of this year.

 

I REALLY don't want to do that!! I am not young, as many of you know, but this process has aged me beyond my years!  I so much want to get back the vitality that I had before the taper.  I've said it before and I'll say it again -- this taper has been the hardest single thing I have ever done.  Period.  And I have been through a lot of stuff in 68 years on this earth!  Anyhow...I want to get back to a full life with my husband, family, friends and myself!!

 

I don't think my plan is rushing it - but it is getting hard!  (I should add that it's not hard every minute, or even every day...)

 

WR - if you have a chance to read this, I'd love to hear from you on this topic as I've always said, I'm following in your footsteps -- just a slower version.  Or Clona...if you happen by... Any ideas you may have for me, any encouragement you can offer would be much appreciated right about now. 

 

And anyone else....

 

Many thanks,

 

Mana  :smitten:

[[my...]]

P.S.

Later on....feeling fine again  ...what a roller coaster...what's going on is more intense IDWD...that subside once I take the anticipated dose...really exhausting but at least the sxs recede...still open to encouragement. 

 

I'll be thinking of everyone this evening....I haven't joined in on this meditation/healing thoughts/prayer time but will tonight! 

[[Be...]]

Hi Mana,

 

Thinking of you this evening. Knowing how you've been on a roller coaster lately, I want to reassure you that all is as it should be, IMO. When sxs crank up, it would seem to me that your body is working hard for homeostasis. Toward the end, I would expect some of this. I am impressed that you are continuing to find ways to distract and calm yourself. I hope you find a measure of peace tonight.

 

Bennie

[[Co...]]

Hey buddies,

 

Mana, TRY, Burned, Bennie, Gilster.... Yup, all of the above weirdness. Hey CD!! 

 

It seems I had more Windows before, maybe I'm just getting very impatient.  This takes such an enormous toll on EVERYTHING!  I haven't walked or anything in over a week, which is not like me.  I can't even explain how I feel.  Symptoms come fast, hang around for a bit and take off.  All except the DR/DP and depression. 

 

 

 

[[Tr...]]

Hey buddies,

 

Mana, TRY, Burned, Bennie, Gilster.... Yup, all of the above weirdness. Hey CD!! 

 

It seems I had more Windows before, maybe I'm just getting very impatient.  This takes such an enormous toll on EVERYTHING!  I haven't walked or anything in over a week, which is not like me.  I can't even explain how I feel.  Symptoms come fast, hang around for a bit and take off.  All except the DR/DP and depression. 

 

 

Coyote, I can completely relate to everything!  Something has really shifted in this process.  The dp/dr I hate!!  We are all getting in the low dose range.  Foolishly, I thought things would offer a show of progress the less K we are on.  Now I'm trying to figure out what is what.  So many things changing, and feeling more disconnected. 

 

How are you managing?

 

TRY

[[B ...]]

Saw Endocrinologist the other day, took 24 urine and blood to calculate cortisol. Before test he said he sometimes sees cortisol "as high as in the 30's" Called back and said that the #should be 10-20 and mine was 77. Said I need to do dexamethasone suppression test to see if possible pituitary or adrenaline tumor. Worried because I would have to take dexamethasone at night, a steroid, to run more bloodwork next day. Read about dexamethasone messing people up during and after taper.  But this is how they rule out tumors. Have any of you taken steroids during wd?

Thanks for any feedback.

 

Thinking of you all, prayers ....

B strong

[[Be...]]

Saw Endocrinologist the other day, took 24 urine and blood to calculate cortisol. Before test he said he sometimes sees cortisol "as high as in the 30's" Called back and said that the #should be 10-20 and mine was 77. Said I need to do dexamethasone suppression test to see if possible pituitary or adrenaline tumor. Worried because I would have to take dexamethasone at night, a steroid, to run more bloodwork next day. Read about dexamethasone messing people up during and after taper.  But this is how they rule out tumors. Have any of you taken steroids during wd?

Thanks for any feedback.

 

Thinking of you all, prayers ....

B strong

 

Bstrong,

I wish there were a way you could skip this test and go straight to a CT or MRI scan. But I guess this is necessary to rule out Cushings? I think there is a low dose test. I would ask the endo if the test did not suppress cortisol, how soon would they know, and would there be any treatment they could immediately give you to help you feel better? I am sorry you are going through this. I wonder how much Klonopin withdrawal factors into this. Have you had a normal Cortisol test previously?

Bennie

[[Bu...]]

thinking of everybody this evening,

 

Bennie:  hope your are having many better days now than not.  Sorry you are feeling bad-always something indeed

 

Mana:  I hear you on- how do we proceed at the end of our tapers!  I have a million questions/concerns like:  if the K isn't helping much, should I just jump?  Should I ride it down to practically 0 even though it's not doing much now?  Will it or won't it be a "soft" landing either way...and on and on...One of my doctors said the pharmacy that makes my compounded formula can dilute the solution even more to keep tapering...ugh.  Feel like I'm splitting hairs at this point.  My gut feeling is saying that since I'm having so many symptoms now, more waves and fewer windows, I should probably jump in the near future.  I have felt a lot of healing tapering down too and, hope I've given my body enough time to adjust to a very small amount  and that it won't be too much of a problem to stop at this point.  Fingers crossed.

 

CD:  hope you are doing ok and having some windows this weekend

 

Coyote:  "I can't even explain how I feel"...ditto!  What a crazy way to heal but, I'm relying on my body that it knows what it's doing at this point!

 

Try:  Big shift at the low dose range indeed...hang in there!!

 

B Strong:  Is there any other way to see if there's a possible tumor like an MRI or a CT scan?  Do you think a second opinion might helpful?  I haven't taken steroids during wd but, have read too that they have caused people problems.  Thinking of you as well. 

[[my...]]

Hey Bennie!

Thanks for the encouragement and support.  I DO try to distract and calm  ....walked this a.m. then shopped around town...Yesterday was hard b/c I tried to do "normal" stuff..clearly too much....I made a birthday dinner for our good friend and had her over...everything from appetizer, salad, main course (French recipe  ) to dessert (bought at local bakery)...I felt soooooo out of sorts, tense, just wanting it to be over...but my husband saved the day as they talked college football (she's a fan) and kept her laughing....I swear I couldn't tell you what they talked about, was just grateful that I didn't half to take up the slack...I wasn't happy with the result of my cooking but they said all was fine...Today?...better...already in jammies!!!    Glad I have no pressure this evening...glad, too, for your reply.  :smitten:

Mana

 

P.S

Does this ramp up in sxs sound normal to you?  Try...I guess you're dealing with a lot of the same...my sxs are different (ears,body/muscle tension/psychological tension...would give anything to be able to fully RELAX!!!!!  Luckily I'm able to sleep. 

[[Be...]]

Burned,

If you've been using .50 mg pills to cut from, and you are at .009 mg, that is equivalent of .003 grams. I jumped at that point. IMO: You're done.  Let recovery begin!

 

Mana,

Increased, rapidly cycling symptoms often happen at low doses. The dose is not enough to make you feel well, and it's enough to make you feel crappy. So best case scenario would be to keep cutting regularly, moving toward zero so you can join Burned and DisneyGirl. And take TRY with you. 

 

Bennie

[[my...]]

Burned...of course you are much lower than I am -- easily 3-4 months ahead of me.  Only you can decide, but I probably would have jumped already...in a way, you effectively have done and your body is adjusting to life without K.  In time you will be fine.

 

Wishing you the best no matter what you do...

 

Mana 

[[my...]]

Bennie,

Our posts crossed....

We agree...Burned: You are done!!!

 

And thanks for the reality check....yeah...pretty much what I thought...glad you think I should just keep on going.  And YES...it will be a good day when I can join everyone. 

 

Mana

[[B ...]]

Bennie and Burned,

Thanks for responding. I've had the cortisol test run before, it was high but not this high. That's why they re-ran. I've had 3 CT's on my mid section since last Nov because of my auto immune disease, which shows the adrenal and MRI and CT on the pituitary already but not conclusive. Cushings is indeed what he is mainly doing the test for. Appreciate the input.

Took since February to get in with Endocrinologist....not many around here.

Already have enough anxiety, not sure if the cortisol is the cause or effect. Catch 22. Worry test would make it even worse, but may need to find answers.  I'm sure the K is at least partly involved.

 

B strong

[[Tr...]]

Hey Bennie!

Thanks for the encouragement and support.  I DO try to distract and calm  ....walked this a.m. then shopped around town...Yesterday was hard b/c I tried to do "normal" stuff..clearly too much....I made a birthday dinner for our good friend and had her over...everything from appetizer, salad, main course (French recipe  ) to dessert (bought at local bakery)...I felt soooooo out of sorts, tense, just wanting it to be over...but my husband saved the day as they talked college football (she's a fan) and kept her laughing....I swear I couldn't tell you what they talked about, was just grateful that I didn't half to take up the slack...I wasn't happy with the result of my cooking but they said all was fine...Today?...better...already in jammies!!!    Glad I have no pressure this evening...glad, too, for your reply.  :smitten:

Mana

 

P.S

Does this ramp up in sxs sound normal to you?  Try...I guess you're dealing with a lot of the same...my sxs are different (ears,body/muscle tension/psychological tension...would give anything to be able to fully RELAX!!!!!  Luckily I'm able to sleep.

 

The rapid cycling of symptoms sounds normal, body is getting less K, everything is working hard to normalize.  My sxs have shifted greatly in 24hrs.  Majority of my symptoms seems to be psychological at the moment. My eyes are dry, and the left eye keeps watering, crying spells, doomed feeling, general feeling of being unwell, heart palps.  My sleep one night will be minimal, another night 7 hours sleep.  I don't take anything for sleep.  Don't want too many things in the mix.  I'm all over the place. 

 

[[Be...]]

Hey Bennie!

Thanks for the encouragement and support.  I DO try to distract and calm  ....walked this a.m. then shopped around town...Yesterday was hard b/c I tried to do "normal" stuff..clearly too much....I made a birthday dinner for our good friend and had her over...everything from appetizer, salad, main course (French recipe  ) to dessert (bought at local bakery)...I felt soooooo out of sorts, tense, just wanting it to be over...but my husband saved the day as they talked college football (she's a fan) and kept her laughing....I swear I couldn't tell you what they talked about, was just grateful that I didn't half to take up the slack...I wasn't happy with the result of my cooking but they said all was fine...Today?...better...already in jammies!!!    Glad I have no pressure this evening...glad, too, for your reply.  :smitten:

Mana

 

P.S

Does this ramp up in sxs sound normal to you?  Try...I guess you're dealing with a lot of the same...my sxs are different (ears,body/muscle tension/psychological tension...would give anything to be able to fully RELAX!!!!!  Luckily I'm able to sleep.

 

The rapid cycling of symptoms sounds normal, body is getting less K, everything is working hard to normalize.  My sxs have shifted greatly in 24hrs.  Majority of my symptoms seems to be psychological at the moment. My eyes are dry, and the left eye keeps watering, crying spells, doomed feeling, general feeling of being unwell, heart palps.  My sleep one night will be minimal, another night 7 hours sleep.  I don't take anything for sleep.  Don't want too many things in the mix.  I'm all over the place.

 

Try,

How has your sleep been throughout your taper? And hasn't your left eye been the problem eye for a long time?

 

My head feels like mush and I'm vibrating tonight up onto into my head. This is an oldie. It can go now....

[[B ...]]

Saw Endocrinologist the other day, took 24 urine and blood to calculate cortisol. Before test he said he sometimes sees cortisol "as high as in the 30's" Called back and said that the #should be 10-20 and mine was 77. Said I need to do dexamethasone suppression test to see if possible pituitary or adrenaline tumor. Worried because I would have to take dexamethasone at night, a steroid, to run more bloodwork next day. Read about dexamethasone messing people up during and after taper.  But this is how they rule out tumors. Have any of you taken steroids during wd?

Thanks for any feedback.

 

Thinking of you all, prayers ....

B strong

 

Bstrong,

I wish there were a way you could skip this test and go straight to a CT or MRI scan. But I guess this is necessary to rule out Cushings? I think there is a low dose test. I would ask the endo if the test did not suppress cortisol, how soon would they know, and would there be any treatment they could immediately give you to help you feel better? I am sorry you are going through this. I wonder how much Klonopin withdrawal factors into this. Have you had a normal Cortisol test previously?

Bennie

Bennie,

Are you familiar with Cushings? If so what do you know?

 

Thanks,

B

[[Tr...]]

Bennie and Burned,

Thanks for responding. I've had the cortisol test run before, it was high but not this high. That's why they re-ran. I've had 3 CT's on my mid section since last Nov because of my auto immune disease, which shows the adrenal and MRI and CT on the pituitary already but not conclusive. Cushings is indeed what he is mainly doing the test for. Appreciate the input.

Took since February to get in with Endocrinologist....not many around here.

Already have enough anxiety, not sure if the cortisol is the cause or effect. Catch 22. Worry test would make it even worse, but may need to find answers.  I'm sure the K is at least partly involved.

 

B strong

 

BStrong,

 

I'm sure K is playing a part.  I hope you get some clear answers to help ease your mind.  I'm sure a great majority of people here have cortisol issues.  This process is so intense, it takes such a toll. 

 

TRY

[[Bu...]]

Mana and Bennie:  Thank-you so much for your votes of confidence :smitten:  Not much longer now

[[Tr...]]

Hey Bennie!

Thanks for the encouragement and support.  I DO try to distract and calm  ....walked this a.m. then shopped around town...Yesterday was hard b/c I tried to do "normal" stuff..clearly too much....I made a birthday dinner for our good friend and had her over...everything from appetizer, salad, main course (French recipe  ) to dessert (bought at local bakery)...I felt soooooo out of sorts, tense, just wanting it to be over...but my husband saved the day as they talked college football (she's a fan) and kept her laughing....I swear I couldn't tell you what they talked about, was just grateful that I didn't half to take up the slack...I wasn't happy with the result of my cooking but they said all was fine...Today?...better...already in jammies!!!    Glad I have no pressure this evening...glad, too, for your reply.  :smitten:

Mana

 

P.S

Does this ramp up in sxs sound normal to you?  Try...I guess you're dealing with a lot of the same...my sxs are different (ears,body/muscle tension/psychological tension...would give anything to be able to fully RELAX!!!!!  Luckily I'm able to sleep.

 

The rapid cycling of symptoms sounds normal, body is getting less K, everything is working hard to normalize.  My sxs have shifted greatly in 24hrs.  Majority of my symptoms seems to be psychological at the moment. My eyes are dry, and the left eye keeps watering, crying spells, doomed feeling, general feeling of being unwell, heart palps.  My sleep one night will be minimal, another night 7 hours sleep.  I don't take anything for sleep.  Don't want too many things in the mix.  I'm all over the place.

 

Try,

How has your sleep been throughout your taper? And hasn't your left eye been the problem eye for a long time?

 

My head feels like mush and I'm vibrating tonight up onto into my head. This is an oldie. It can go now....

 

Bennie, my sleep throughout my taper reflects whats going on currently in my taper.  If, I'm in a window or sxs have lessened I can sleep 7 hours.  If I'm in a bad spot, it is broken.  My dreams seem to play a part in how I will feel that day.  My sleep pattern from the night before really plays a role in how I feel the next day. 

 

I used to get the left eye twitching thing like Ninj.  Now it waters.

 

I had the vibrating head yesterday, it went away.  Just as it came it will go!

 

TRY

[[Tr...]]

Mana and Bennie:  Thank-you so much for your votes of confidence :smitten:  Not much longer now

 

Burned! So Proud of You.  You Got This!!

 

TRY

[[Tr...]]

BStrong, maybe there are some holistic things they can offer to help.

 

TRY

[[Be...]]

Have we switched from kaffeeklatsch to pajama club?

Sweet dreams, compadres.

Bennie

[[Bu...]]

You too Try