The Klonopin Klub#2

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Sounds like you have a good plan DMW, and  great outlook on things. I think we can all learn  from your valuable tips. Thank you for such details. !

 

Hi Dmms ......

Are you using vodka in your liquid? 

 

I am thinking about liquid for tapering as k is hard to cut even with a scale . I thought of doing small cuts and holds , but I think if I can tolerate liquid it'd be easier .

A couple of questions ....

I'm thinking I'd just use water and shake it well .

I'd probably have to mix it every day , does anyone know if K will keep in water in the fridge for a Couple of days ?

 

Oh , I feel like I'm in a mess , I haven't had a break in so long and my symptoms have been unrelenting . I knwo I have to be patient some more as I just made another change . But I think I've only had one window In a year and half since starting my Valium microtaper last June . It's been bad the whole time . It got worse too after I made that small cut in June this year . Very confusing . I wondered if I became tolerant to the V for some reason after that small cut .

Something changed that's for sure .

I kept holding thinking it would get better , but it never did . I was improving before that 1/16 th cut , and then it all went to sh*t .......

 

Poor brains ....

Oh well , at some point , maybe in a few weeks I'll try a small cut . If things don't improve it may be my only option . Getting ahead of myself here , first things first ..... See if I can stabilize on the K

 

 

MiYu 

[[do...]]

Yes Miyu, sorry, not sure how to do the "quotes".  I use the formula builder gave me.  1mg benzo + 2ml Vodka, wait till dissolved, add 8 ml water ( this is multiplied, according to your desired batch size).  I mix 3Mg benzo at a time.  I dose a.m. and p.m.  I put my a.m. dose in a 5-hour energy bottle at night, so I can take it discreetly at my desk at work the next day. Works like a charm.

[[...]]

Yes Miyu, sorry, not sure how to do the "quotes".  I use the formula builder gave me.  1mg benzo + 2ml Vodka, wait till dissolved, add 8 ml water ( this is multiplied, according to your desired batch size).  I mix 3Mg benzo at a time.  I dose a.m. and p.m.  I put my a.m. dose in a 5-hour energy bottle at night, so I can take it discreetly at my desk at work the next day. Works like a charm.

 

Thanks DM .....

You use the little quote box at the top right corner of the post , just click on that and it'll open a message with the quote you want in it 

 

.I can't believe people can work through this process !

I'm housebound mostly .... 

 

MiYu

[[...]]

Hi MiYu,

 

Sorry to hear of the Snafu and hope that it doesn't cause too much of a setback for you. I agree with you that you should just hold for awhile. My pdoc would say hold for at least three weeks as that's how long it takes a cut of K to go through the w/d cycle. I'm not sure with the Valium though. Maybe a little longer.

 

I sure know what you mean about starting to taper even though you aren't feeling well. I was doing really well until that generic change smacked me. I had a week where I felt better but now I'm back to feeling awful again. I'm housebound right along with you. I don't know how people work during this either. I suppose they have different symptoms.

 

I use liquid to taper my K. Turns out it's fat soluble so it dissolves in milk. I use cashew milk which is really high in fat but only 25 calories for a cup. I use this spreadsheet to calculate my dosage. K won't dissolve in water and I've heard that people who have used water struggle with keeping their doses equal. I also space my daily dose out by eight hours.

 

https://docs.google.com/spreadsheets/d/1BOT83q-Avb9NDlIQ-WC5lT8jk_9-RrUDFz1ArGAi51s/edit#gid=0

 

I downloaded it and then put my own information into it. It has been a great help. I hope some of this info is helpful.

 

I also hope that you are having a better day today.  :smitten: :hug:

T

[[...]]

Hi DMW,

 

Welcome to the Klub   I really like a lot of your comments. I hope you don't mind but I think I'm going to copy and paste them and print them out for myself. I already do some of them but it never hurts to have reminders!!

 

I found the vagus nerve being triggered by your anxiety and acid reflux to be fascinating. Sorry you have to deal with it though. That vagus nerve is pretty important so you have to take care of it!

 

I tried propranolol when I had akathisia. It worked like a charm but immediately made me super depressed. Next....I'm glad it works well for you though. I've heard it is easier to taper off of than these benzo's in any case.

 

I hope that you are able to taper over to the K without much further fainting. It's amazing all of the different things these meds can do to us. There is a person on another thread who found that the PPI's were causing his anxiety/panic attacks and when he tapered off of them the attacks went away! Who knew.

 

I have to admit to you that what I've had to go through in w/d is worse than anything I went through in boot camp. I think part of it is due to it not having an end date! At least in boot camp we knew we would be done at a specific date and then we could move on with our lives!! No guts no glory though so we'll just keep on pushing through 

 

:hug:

T

 

 

[[fl...]]

I was going to post this morning but I decided to freak out over starting my taper instead. Last night when I went to bed I thought I was going into it so calmly and coolly, but my subconscious felt different, waking me up at 2:00 to tell me I should be panicked instead.  "The mind is its own place in itself, and can make a Heaven of Hell, a Hell of Heaven."  Sigh.  I've done so much more of the latter than the former in my life.  I've never been someone who believes that things are meant to be, but if I were, I might think that this was the push I needed to make me wake up, accept, be grateful, stop judging.  At any rate, my mind was so muddled with different tapering plans---do I take a little out or leave some at the end, weight or volume, dry cut or liquid---that it took me two hours to figure it all out.  So, I'm on my way, slowly and surely, .002mg a day, and so hoping that steady wins the race.

 

Thanks, tntd! It feels strange to be sleeping alone, but also right, right now.  I've noted the book you mentioned, The Miracle Mindset, and will read it.  I am really drawn to stories of people overcoming adversity right now, not surprisingly.  I've gotten on a kick of watching documentaries about extreme climbing.  Interesting parallels with our predicament, because of the lack of oxygen at high altitudes affecting the brain and causing physical and behavioral changes that can be catastrophic  Oh, and I'm interested in your cortisol information; could you tell me where that is, please?

 

I'm so sorry that you've been struggling for so long, MiYu!  It must've been so awful switching to V and then not knowing if it was the thing that was causing your problems and then having to switch back to k.  A heartbreaking setback.  I am rooting for you.

 

DMW206, I found your intro very interesting; welcome! from someone who's only been here a day a two herself.  There's a lot to take in in your story so I will make a longer reply later.

 

Wishing you well, dmms!  And a wish for all a good night's sleep (if it's night where you are).

 

 

[Guest [Fu...]]

Hi everyone. If you guys and girls have been following my posts for a while you probably know I've been struggling but lately things have gotten so much worse. I dry cut down to 2.375 from 2.5 but was bedridden and freaking out so bad that after having a long conversation with someone from a benzo Facebook group whom I trust and who has helped many people get off this horrible drug she convinced me to updose to 3 to try and stabilize. Except I not only didn't get any relief but I actually somehow felt a worse. Waking up in extreme terror everyday. DP/DR so bad that nothing feels real. CNS is completely shot. She said to give it some time but after 6 days I just went back to my original dose of 2.5 mg's Klonopin and still feel absolutely atrocious.

 

So I'm assuming I'm in tolerance withdrawal since updosing had no positive impact for me? I feel like I'm completely stuck. I can't cold turkey or do a rapid taper but the prospect of doing a microtaper in this state also feels impossible. Has anyone been in tolerance or in a similar situation and stabilized? I'm just holding for now but also literally holding. As in by a thread. I'm a bed ridden, terror stricken mess and I can't do simple things like watch TV or listen to music and I feel like I'm on the precipice of some sort of breaking point even though I know I do not want to end up in a psych ward or a detox facility. I just don't know what to do.

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Hey MiYu! I'm a Klonopin taperer too! This is my third time on Klonopin so I am taking it super slow in coming off this time. It does get much harder each time. I have been on and off 3 or 4 times in the last 10 years. I'm reducing about 5% every 2 weeks. The lower I get the better I feel. It was terribly toxic to me on the full dose I was on. I wish you success in your cross! We are all here for each other! Good to meet you!

 

Hi BBalmom....

Sorry for the delay in responding to your post , things have been rough and I just missed it .....

I'm glad you are feeling better as you get lower..... I have heard that alot with k people also .

 

I so want to start tapering but am very unstable still from  my cross . The k doesn't make me feel better , but i don't  feel ready to taper yet . The cross turned out to be a huge shock to my system and brain . Like a huge cut . I'm really praying for stabilization . Did you feel stable when you started this last( I hope) taper ?

It seems it's so much better to start from a. Stable place if possible , but soemtimes we have to do it regardless .... I dread that truthfully ....

I don't expect I'll feel well when I start , but I do hope to feel a little stronger .

 

I'm trying to figure out how I will proceed when I do taper .... I'd like to do liquid as it's more accurate than the scale ,which is more like a micro cut and hold .  but I don't want to drink a lot of even nut milk , and I'd need to drink at least 200 mls per day to start . How is it for you with the scale ? Do you crush your pills? And do you reduce by .001 at a time ? I'd love to hear how you do it , thanks!

 

I'm glad we have a few buddies here now ! I'm grateful for the support of this group .

 

Love to all , MiYu 

 

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Hi everyone. If you guys and girls have been following my posts for a while you probably know I've been struggling but lately things have gotten so much worse. I dry cut down to 2.375 from 2.5 but was bedridden and freaking out so bad that after having a long conversation with someone from a benzo Facebook group whom I trust and who has helped many people get off this horrible drug she convinced me to updose to 3 to try and stabilize. Except I not only didn't get any relief but I actually somehow felt a worse. Waking up in extreme terror everyday. DP/DR so bad that nothing feels real. CNS is completely shot. She said to give it some time but after 6 days I just went back to my original dose of 2.5 mg's Klonopin and still feel absolutely atrocious.

 

So I'm assuming I'm in tolerance withdrawal since updosing had no positive impact for me? I feel like I'm completely stuck. I can't cold turkey or do a rapid taper but the prospect of doing a microtaper in this state also feels impossible. Has anyone been in tolerance or in a similar situation and stabilized? I'm just holding for now but also literally holding. As in by a thread. I'm a bed ridden, terror stricken mess and I can't do simple things like watch TV or listen to music and I feel like I'm on the precipice of some sort of breaking point even though I know I do not want to end up in a psych ward or a detox facility. I just don't know what to do.

 

Fuzzy , I want to get back to you before any other posts ..... I'm so sorry you are having such a rough time . I'm kind of in the same boat as far as being stuck and very unstable . I honestly don't know if I'm tolerant , but I don't feel well at all and can't even imagine tapering from where I am . I feel all the things you said.

 

I think you made a wise choice to go back to your lower dose, IMO .

At least there you know , even if your symptoms are awful , you aren't going to have to taper from a higher dose .

Like you , I am just holding in the hopes of getting more stable . It's so hard to know what's tolerance and what's just instability , or toxicity ...when was the last time you felt stable ? Was it a cut that threw you into this state ? Or holding for a long time ?

Keep posting , Perhaps just holding where you are for now as you've made a couple of changes with updosing and then going back would be best ?

 

I to am afraid of having to taper from an unstable place . It may be what we have to do in the end , I don't know.

Hold on to the fact that you will heal , you will get there .... And come here for support as much a s you can . I hope things get better for you .

 

MiYu 

 

[[...]]

I was going to post this morning but I decided to freak out over starting my taper instead. Last night when I went to bed I thought I was going into it so calmly and coolly, but my subconscious felt different, waking me up at 2:00 to tell me I should be panicked instead.  "The mind is its own place in itself, and can make a Heaven of Hell, a Hell of Heaven."  Sigh.  I've done so much more of the latter than the former in my life.  I've never been someone who believes that things are meant to be, but if I were, I might think that this was the push I needed to make me wake up, accept, be grateful, stop judging.  At any rate, my mind was so muddled with different tapering plans---do I take a little out or leave some at the end, weight or volume, dry cut or liquid---that it took me two hours to figure it all out.  So, I'm on my way, slowly and surely, .002mg a day, and so hoping that steady wins the race.

 

Thanks, tntd! It feels strange to be sleeping alone, but also right, right now.  I've noted the book you mentioned, The Miracle Mindset, and will read it.  I am really drawn to stories of people overcoming adversity right now, not surprisingly.  I've gotten on a kick of watching documentaries about extreme climbing.  Interesting parallels with our predicament, because of the lack of oxygen at high altitudes affecting the brain and causing physical and behavioral changes that can be catastrophic  Oh, and I'm interested in your cortisol information; could you tell me where that is, please?

 

I'm so sorry that you've been struggling for so long, MiYu!  It must've been so awful switching to V and then not knowing if it was the thing that was causing your problems and then having to switch back to k.  A heartbreaking setback.  I am rooting for you.

 

DMW206, I found your intro very interesting; welcome! from someone who's only been here a day a two herself.  There's a lot to take in in your story so I will make a longer reply later.

 

Wishing you well, dmms!  And a wish for all a good night's sleep (if it's night where you are).

 

Hi flibberty ,

Thank you 

I'm glad your night time rousing brought you to a place of figuring out your plan . This becomes an all encompassing occupation for mind and body ! 24/7 a lot of the time.

I was wondering if you calculated a percentage at .002 mgs per day ? Did you decide on dry cut or liquid ?ill have to look at your signature.....if it's there .

 

The book sounds interesting tNTD , thanks for mentioning it . I just read a piece from Mad in America last night , by the guy who was / is a climber and ended up on benzos ..... Interesting that he started getting anxiety from climbing , then came benzos , and WD , which is what he write s about .

 

Ok , having some anxiety .... Need to do some breathing .........

 

This morning I woke at 3 am with cortisol rushes , even with darkness and phosphatydylserine.....I actually took my morning dose in nibbles every couple of hours as I kept waking up with this . It would calm the surges for about 1-1/2 hrs , then I'd take another bit and go back to sleep ..... I don't knwo if this is wise , but it worked anyway . I'm wondering if anyone has ever dosed like this ..... When I take my dose all at once it feels awful , and makes me so tired . I think I'm going to split my other two doses in half, take them an hour a part or something . It seems like the antianxiety effect only lasts a couple of  hours for me , with k anyway ?... Valium just made me feel ill and kicked me out completely , even 1/4 mg!

So strange how our bodies can react , I think one thing about these meds that is so infuriating is this unpredictability of it all......

 

Anyway , I digress.....

 

I'll be watching your progress and I'm glad you're here ,

MiYu 

 

 

 

[[...]]

Yes Miyu, sorry, not sure how to do the "quotes".  I use the formula builder gave me.  1mg benzo + 2ml Vodka, wait till dissolved, add 8 ml water ( this is multiplied, according to your desired batch size).  I mix 3Mg benzo at a time.  I dose a.m. and p.m.  I put my a.m. dose in a 5-hour energy bottle at night, so I can take it discreetly at my desk at work the next day. Works like a charm.

 

Hi DM ,

I was just wondering .... So you make a batch and it keeps for a few days? Do you keep it in the fridge ?

Hope you're doing well .....?

MiYu

[[...]]

Hi tNTD 

How are you doing?

I wanted to ask you , when you make a cut , how long before you feel the WDs from it ?

And what kind of symptoms do you tend to get ?

I feel more anxiety and head stuff with the K than I did with the V .

 

It's probably too early to tell how things will go with K for me ..... More patience and holding , ugh ....

 

Hope you are doing ok ,

Love, MiYu 

[[...]]

Hi DMW , How are you doing?

 

I wondered if you remember how long it took for you to stabilize after you crossed from Ativan to K?

I know we're  all different , but just for interest and hope !

 

MiYu

Ps , I read something about lying on ones right side being best for balancing the vagus nerve , and Lying on ones back to be the worst ...... Any thoughts ?

[Guest [Fu...]]

I haven't felt completely stable in a very long time but this is the worst I have ever felt. I *think* my CNS is in a state of disarray if not complete shock from all of the changes I've made this year. I had a failed taper last year and ever since I updosed and reinstated it seems like things have gotten so much worse. I'm so scared. I can't live like this, it's torture.

[[do...]]

 

Hi DM ,

I was just wondering .... So you make a batch and it keeps for a few days? Do you keep it in the fridge ?

Hope you're doing well .....?

MiYu

 

miYu, yes I make .30 ml at a time which equals 3mg, at first, I made every 3 days, but since I am on a lower dose, its last at least 6 or so. I use the vodka formula, so I do not keep it in the fridge.  I bought the syringes from amazon. I'm about to start using the smaller ones.  This is easier than the cutting and weighing method for me. Much quicker for sure.

[[do...]]

Fuzzy, I sure hope you get to feeling better. I know, this is not fun, for sure.

[[...]]

Hi tNTD 

How are you doing?

I wanted to ask you , when you make a cut , how long before you feel the WDs from it ?

And what kind of symptoms do you tend to get ?

I feel more anxiety and head stuff with the K than I did with the V .

 

It's probably too early to tell how things will go with K for me ..... More patience and holding , ugh ....

 

Hope you are doing ok ,

Love, MiYu 

 

 

Hi MiYu,

 

It has been about seven months since I made a cut but it got to the point that even with the smallest cuts I would feel them the next day. I can't remember exactly how quickly I would feel it originally, somewhere between a week and a week and a half I think. Then after about three weeks the symptoms would start to fade and at four weeks I would be doing ok. After I CT'd off the AD everything was different though. I started out with a daily liquid micro taper of .0019mg a day. After ten days I hit the wall but it only took five days to get back to my baseline. I probably shouldn't have started to taper yet though as I was still really struggling from the CT. I'm hoping things go better when I start to taper this time since I held for seven months, well six if you count the month I changed to generics as a cut.

 

I'm going to start tapering again but this time I'm going to taper .0019mg every other day and as soon as I feel an increase in sxs I'm going to hold. I'm rather anxious about starting to taper again but it helps to know that I can hold and feel better pretty quickly.

 

I am only using 66mL with 1.25mg of medication to make my solution and I am tapering from that. The excel spreadsheet has been amazingly helpful with knowing how much I'm tapering from my solution. As of tonight I'm taking out 4.4mL and I started tapering back in November! Turtle slow you know  I'm currently struggling with being homebound again but I've heard so much about people feeling better the lower they get in the K that I have to give it a try. I just hope the CT from the AD isn't still complicating things too much.

 

I hear you with the anxiety. That and agoraphobia are my main symptoms. If I get really bad other stuff pops up, pain from previous injuries, GI issues, headaches, crying for no reason. I don't know if those are some you got with V or not. I also do get verigo off and on. Makes me wonder if my Vagus nerve is getting involved after reading what DMW is going through. So many unknowns! So interesting to hear other people's stories and know we aren't alone.

 

I've started making blankets for the homeless again so I feel like I have a purpose while I'm housebound. We're planning on giving them to a program for homeless Veterans. I'm really grateful that my husband is supportive with all my stuff. Just trying to stay functional enough to be able to keep working on them  

 

How are things going for you as you're working through the c/o? Are things starting to calm down at all yet?  :smitten: :hug:

 

Hugs and healing,

T

[[...]]

I was going to post this morning but I decided to freak out over starting my taper instead. Last night when I went to bed I thought I was going into it so calmly and coolly, but my subconscious felt different, waking me up at 2:00 to tell me I should be panicked instead.  "The mind is its own place in itself, and can make a Heaven of Hell, a Hell of Heaven."  Sigh.  I've done so much more of the latter than the former in my life.  I've never been someone who believes that things are meant to be, but if I were, I might think that this was the push I needed to make me wake up, accept, be grateful, stop judging.  At any rate, my mind was so muddled with different tapering plans---do I take a little out or leave some at the end, weight or volume, dry cut or liquid---that it took me two hours to figure it all out.  So, I'm on my way, slowly and surely, .002mg a day, and so hoping that steady wins the race.

 

Thanks, tntd! It feels strange to be sleeping alone, but also right, right now.  I've noted the book you mentioned, The Miracle Mindset, and will read it.  I am really drawn to stories of people overcoming adversity right now, not surprisingly.  I've gotten on a kick of watching documentaries about extreme climbing.  Interesting parallels with our predicament, because of the lack of oxygen at high altitudes affecting the brain and causing physical and behavioral changes that can be catastrophic  Oh, and I'm interested in your cortisol information; could you tell me where that is, please?

 

I'm so sorry that you've been struggling for so long, MiYu!  It must've been so awful switching to V and then not knowing if it was the thing that was causing your problems and then having to switch back to k.  A heartbreaking setback.  I am rooting for you.

 

DMW206, I found your intro very interesting; welcome! from someone who's only been here a day a two herself.  There's a lot to take in in your story so I will make a longer reply later.

 

Wishing you well, dmms!  And a wish for all a good night's sleep (if it's night where you are).

 

Hi Flibberty, We sure do understand the struggle with deciding how to taper and then the fear of tapering. Glad you were able to work your way through it and get things going. I started with tapering about the same amount daily and quickly started having sxs. One thing that's nice about the daily taper is that you can stop for a few days until you feel a bit better and then start up again. It really allows a sxs based taper instead of having to ride out the cut. Definitely wishing you luck and hoping you can taper daily until you are through

 

Those extreme climbing documentaries sound interesting and kind of scary! Speaking of breathing my daughter has been telling me about a guy who developed some method for breathing that allows him to hold his breath for a really long time. It also is supposed to be very calming. She's supposed to write his name down so I can look him up and see if I want to give his method a try. I can't figure out how to spell it when she says it to me so I'll have to wait for her to remember and then I will share it with you

 

I'm glad you are interested in the book I mentioned. There are so many amazing stories out there.

 

The cortisol information I found on Surviving Antidepressants (SA). I put a link in the post but I haven't checked to see if it works or not. All you have to do is use a search enging and type in Surviving Antidepressants cortisol and it should pop up. The lady who started SA posted the information I copied. She was a former medical research journalist if I remember right. I also looked up a lot of the information on my own but this is the place I have found easiest to share from as it has all sorts of info all together.

 

http://survivingantidepressants.org/topic/33-waking-with-panic-or-anxiety-managing-cortisol-spikes/

 

Hugs and healing,

T

[[...]]

Hi Fuzzy,

 

I'm so glad to see you here. I hope that we can be of some help and if not at least some support. I know you've been in a bad place for a long time. I think of you often and hope that things are improving for you but I see that they haven't been and I'm so sorry.

 

Did you ever talk to KGirl? She decided to start tapering because she was in tolerance. She said as she got lower in dose she started feeling better. If I remember right you feel worse when you taper. Though I don't know how low she was before she started feeling better.

 

I really feel for you and wish there was more that I/we could do. Keep hanging in there. Once you are through this "The Best Is Yet To Come"!!

 

Thinking of you.

 

Hugs and healing,  :smitten:

T

[Guest [Fu...]]

Thanks. Yeah I tried microtapering and felt even .001 g cuts. But I feel just as bad after reinstating so I don't know what to do. Starting to feel completely hopeless to be honest. Nothing I do works and just makes things worse. I can only take so much before it just becomes unbearable.

[[fl...]]

Oh, god, I just lost the post I spent the last 1 1/2 hours writing... : (  Tomorrow...

[[...]]

Thanks. Yeah I tried microtapering and felt even .001 g cuts. But I feel just as bad after reinstating so I don't know what to do. Starting to feel completely hopeless to be honest. Nothing I do works and just makes things worse. I can only take so much before it just becomes unbearable.

 

Fuzzy , have you checked in with SA lately ? I so understand how you're feeling. I am so unstable at the moment its truly awful .

My cross was too sudden , even tho I was sick on the Valium , and was desperate to change , I should have done it in steps .

Hang on , you will get through this .... I do feel a post to SA might be useful to see if they can help. I don't feel qualified to knwo what would be best for you .

I can only send you love and support and pray that you'll feel better soon .

Love, MiYu

[[...]]

Hi tNTD 

How are you doing?

I wanted to ask you , when you make a cut , how long before you feel the WDs from it ?

And what kind of symptoms do you tend to get ?

I feel more anxiety and head stuff with the K than I did with the V .

 

It's probably too early to tell how things will go with K for me ..... More patience and holding , ugh ....

 

Hope you are doing ok ,

Love, MiYu 

 

 

Hi MiYu,

 

It has been about seven months since I made a cut but it got to the point that even with the smallest cuts I would feel them the next day. I can't remember exactly how quickly I would feel it originally, somewhere between a week and a week and a half I think. Then after about three weeks the symptoms would start to fade and at four weeks I would be doing ok. After I CT'd off the AD everything was different though. I started out with a daily liquid micro taper of .0019mg a day. After ten days I hit the wall but it only took five days to get back to my baseline. I probably shouldn't have started to taper yet though as I was still really struggling from the CT. I'm hoping things go better when I start to taper this time since I held for seven months, well six if you count the month I changed to generics as a cut.

 

I'm going to start tapering again but this time I'm going to taper .0019mg every other day and as soon as I feel an increase in sxs I'm going to hold. I'm rather anxious about starting to taper again but it helps to know that I can hold and feel better pretty quickly.

 

I am only using 66mL with 1.25mg of medication to make my solution and I am tapering from that. The excel spreadsheet has been amazingly helpful with knowing how much I'm tapering from my solution. As of tonight I'm taking out 4.4mL and I started tapering back in November! Turtle slow you know  I'm currently struggling with being homebound again but I've heard so much about people feeling better the lower they get in the K that I have to give it a try. I just hope the CT from the AD isn't still complicating things too much.

 

I hear you with the anxiety. That and agoraphobia are my main symptoms. If I get really bad other stuff pops up, pain from previous injuries, GI issues, headaches, crying for no reason. I don't know if those are some you got with V or not. I also do get verigo off and on. Makes me wonder if my Vagus nerve is getting involved after reading what DMW is going through. So many unknowns! So interesting to hear other people's stories and know we aren't alone.

 

I've started making blankets for the homeless again so I feel like I have a purpose while I'm housebound. We're planning on giving them to a program for homeless Veterans. I'm really grateful that my husband is supportive with all my stuff. Just trying to stay functional enough to be able to keep working on them  

 

How are things going for you as you're working through the c/o? Are things starting to calm down at all yet?  :smitten: :hug:

 

Hugs and healing,

T

 

HI T  :smitten:

Things are re pretty rough right now , I'm scared I won't stabilize , or that I've added huge amounts of time onto my taper, or worse I won't be able to stabilize ever ! oh well , you know all about that don't you ?

I'm sure I will be as turtle paced as you . My nervous sytem is way destabilized .

I posted in SA yesterday , they felt the all at once cross was not good advice from my doc , I agree .

And now I need to change my dosing from 3 to 4 X day as I'm getting interdose WDs at 3 doses .

Any suggestions ? I had planned to do it all at once , but now I don't knwo , it'd be another change , and we are so sensitive to these changes ,as you discovered with your generic 

 

I wasn't stable before I made the cross . I guess time is all we have .

 

I cut my doses into four equal parts for today , and took the first one six hours after last nights dose . But if course it wasn't the usual amount, it was less, so six hours later I am in WDs again . I took the second dose . I'm very confused as to how to do this without further destabilizing. SA says to only move by one hour at a time , but I don't knwo how that would work when making more doses .

Anyway , I have the question in to them .

 

What an ordeal for all of us , most of us .

I'm sorry about your AD cold turkey..... I had a steroid CT and that really destabilized my nervous sytem , so I understand. .

I wish we had known all these things , it's so wrong that we are left to figure it all out ourselves . And suffer the consequences.

 

You offer me hope though , that you have made progress with your long hold , and I do hope fro you that tapering , however slow , will be easier now fro you . We keep trying . It's most important to be stable , I know that now , I didn't before and wish I had .

 

About your liquid ..... Do you make it yourself or have it compounded ? If compounded , does it keep ?

And do you knwo what's in it ? I think you must make your own as you had that problem with change of generic pills ? If you do are you using water or milk or ?

 

 

Sorry lots of questions .....

 

Feeling some relief after taking my second dose of K , but 3 .30 pm is a long way off ,and it will be a smaller dose . Oh dear ..... Don't know how to do this .....

 

I hope you have a good day and I wish you all the best with your trial cut ... You will be alright I think . You have reached a much more stable place now ...

 

Love , MiYu  :smitten:

 

Hi everyone else , I hope you're doing ok today 

 

 

 

 

 

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Thanks to you, tntd and MiYu, for your words of support!  I wanted to get back to you, MiYu, about my tapering; longer post later.  I'm doing a liquid titration with propylene glycol.  I may have said this already, but I was planning to do .001 a day but I just couldn't stand the thought of dragging it out so long; I will see how I go along.  Third day, so far, so good.  It's hard not to feel guilty about feeling better when so many of you are suffering.  My thoughts go out to you today.  Last night I wrote about what has helped me, but I lost the post.  I kept going back and forth to see what different people had said so I could refer to it, and when I returned to what I was writing, it was gone.  I may try to write people individually to avoid that or do quotes, if I can figure it out---just tried, but need to go back and read how to do it.  Any advice welcome!  Best to you all, Flibberty

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I should say that I am thoroughly reveling in feeling good because who knows what tomorrow may bring...and I'm trying to cut some feel good pathways in my brain...