Updosing Support Group

[[Ba...]]

NJ,

You wrote and I di dnot reply but it was somewhere else... duh.

I was going to say your son's illness is certainly NOT your fault and I totally understand you want to fix it, but you have done so much and sometimes things are beyond our control. (Ha, I sure have learned that one).

 

So don't be so hard on yourself.

 

I have not updosed but wanted to ask here what is worse, if you have to take, lyrica or gabapentin or more valium or benzo?

 

I just have to get stable-- it has been SO long.

 

Frankly, after so many decades on I am thinking my brain is damaged and that just is how it is.

 

sigh

 

thx

[[va...]]

NJ,

You wrote and I di dnot reply but it was somewhere else... duh.

I was going to say your son's illness is certainly NOT your fault and I totally understand you want to fix it, but you have done so much and sometimes things are beyond our control. (Ha, I sure have learned that one).

 

So don't be so hard on yourself.

 

I have not updosed but wanted to ask here what is worse, if you have to take, lyrica or gabapentin or more valium or benzo?

 

I just have to get stable-- it has been SO long.

 

Frankly, after so many decades on I am thinking my brain is damaged and that just is how it is.

 

sigh

 

thx

 

Barbara I'm so sorry you've been suffering for so long. I wonder if you could afford a session with Baylissa to see what she thinks, or any other benzo wise therapist. I'm on gabapentin and it's no miracle drug. I haven't tried to come off so no idea about that. Before taking it I researched both gabapentin and lyrica. Lyrica had worse testimonies and more or them in the support FB groups, so I went with gabapentin. I was really in a bad place so my decision making ability was affected. I hope others chime in and help you.

[[NJ...]]

NJ,

You wrote and I di dnot reply but it was somewhere else... duh.

I was going to say your son's illness is certainly NOT your fault and I totally understand you want to fix it, but you have done so much and sometimes things are beyond our control. (Ha, I sure have learned that one).

 

So don't be so hard on yourself.

 

I have not updosed but wanted to ask here what is worse, if you have to take, lyrica or gabapentin or more valium or benzo?

 

I just have to get stable-- it has been SO long.

 

Frankly, after so many decades on I am thinking my brain is damaged and that just is how it is.

 

sigh

 

thx

 

Barbara,

 

Haven't been on much this week so sorry if I missed your . message.

 

I know it's not my fault my son is sick but it is hard that this just drags on and on now, a year and he isn't really stable. We all know how that feels.

 

I wonder what your doctor thinks. I don't know what to tell you. You have a lot going on and I think for you the best decision is what is going to get you stable for the long term, without thinking of tapering. I know you don't have any real life support and I think getting to a place where you can be out and functional is really important.

[[Ba...]]

Valium,

 

I spoke with Baylissa.  She said without a support source (family , friend, good dr.) it would be really hard.  It's not like you can manufacture family, or someone caring about you, you know?  ;(

[[Ba...]]

NJ, hi.

Yes I know about things dragging on and on and on.

 

Dr. said to try phenobarb to get off.  He rxed a tiny amount, like nowhere near enough to sleep.  I took half that one night... noticed nothing.

Took the whole little dose next night felt absolutely horrible.  Just the worst, was waiting to die.

 

Dr. has admitted he is not sure I should come off but then again he has no ideas how to get me stable.

 

Meanwhile, NJ, while I was on the phone with someone I took my teensy amt of clonopin (which i generally take separate from the valium).  Uh... I really went into withdrawal.  I could not think and hardly talk! (unusual for me).  Felt horrible.  Did not want to take any more so thought I ws on so little could maybe sotp it and bump up the valium.  Dr. said ok to that.  So I did... 3 days later I was throwing up and in total fear mode.

 

So went back to half the klon and the somewhat bumped up valium.

 

I just don't see an answer here.

 

And I'm really depressed.

 

wah

 

[[NJ...]]

NJ, hi.

Yes I know about things dragging on and on and on.

 

Dr. said to try phenobarb to get off.  He rxed a tiny amount, like nowhere near enough to sleep.  I took half that one night... noticed nothing.

Took the whole little dose next night felt absolutely horrible.  Just the worst, was waiting to die.

 

Dr. has admitted he is not sure I should come off but then again he has no ideas how to get me stable.

 

Meanwhile, NJ, while I was on the phone with someone I took my teensy amt of clonopin (which i generally take separate from the valium).  Uh... I really went into withdrawal.  I could not think and hardly talk! (unusual for me).  Felt horrible.  Did not want to take any more so thought I ws on so little could maybe sotp it and bump up the valium.  Dr. said ok to that.  So I did... 3 days later I was throwing up and in total fear mode.

 

So went back to half the klon and the somewhat bumped up valium.

 

I just don't see an answer here.

 

And I'm really depressed.

 

wah

 

Well of course you are depressed. You have been sick for a long time! I don't know what the answer is. I have always found some measure of relief by updosing but I don't know what will work for you. Wish I could be more helpful!

[[Ba...]]

Thanks, NJ.

I realize I am a hard case.  I imagine genetics is part of the problem.  ;(

[[va...]]

Valium,

 

I spoke with Baylissa.  She said without a support source (family , friend, good dr.) it would be really hard.  It's not like you can manufacture family, or someone caring about you, you know?  ;(

 

Yes Barbara of course I know. My family is not something I can count on and on top of that I'm raising a daughter on my own. That's why I updosed. I wouldn't focus on tapering as NJ says. Did Baylissa have any idea on what could help you stabilize?

[[Ba...]]

No she really won't give taper advice of any  kind.

 

She is a lovely person, though.

If all one was needing was a little support, I would not hesitate to recommend her!  She's been at it a long time, too.

[[va...]]

Barbara have you thought of holding your meds, all your meds, for one year? As I see your Valium goes up and down and you're never stable, I don't know if trying to maintain the same dose of all your meds would help you gain some stability over time. And I repeat I DON'T KNOW, but you seem to have tried everything else.

[[Ol...]]

Just hopping in here after being away from BB for a year.. Barbara, it is good to hear from you and I'm sorry you are suffering.. I just want to mirror VNM's suggestion, I just completed a year and a half hold.. I didn't really mean for it to go on so long but I really wanted to truly stabilize before tapering again, and my doctor was ok with it in fact he is the one who suggested it. It was a real game changer. I have started tapering again and so far it has been easy breezy in comparison to the hell I was in 2 years ago when I was tapering. Of course everyone is different but for me the long long hold was really successful (So far! Crossing fingers)

Love to all of you.

[[va...]]

Just hopping in here after being away from BB for a year.. Barbara, it is good to hear from you and I'm sorry you are suffering.. I just want to mirror VNM's suggestion, I just completed a year and a half hold.. I didn't really mean for it to go on so long but I really wanted to truly stabilize before tapering again, and my doctor was ok with it in fact he is the one who suggested it. It was a real game changer. I have started tapering again and so far it has been easy breezy in comparison to the hell I was in 2 years ago when I was tapering. Of course everyone is different but for me the long long hold was really successful (So far! Crossing fingers)

Love to all of you.

 

Thank you Oliver kitty this gives us all hope. I'm holding and in January after six months holding I will reassess. I'm improving but the fear is still there. I don't want to taper until the fear lets up a bit. I hope it does.

[[NJ...]]

Just hopping in here after being away from BB for a year.. Barbara, it is good to hear from you and I'm sorry you are suffering.. I just want to mirror VNM's suggestion, I just completed a year and a half hold.. I didn't really mean for it to go on so long but I really wanted to truly stabilize before tapering again, and my doctor was ok with it in fact he is the one who suggested it. It was a real game changer. I have started tapering again and so far it has been easy breezy in comparison to the hell I was in 2 years ago when I was tapering. Of course everyone is different but for me the long long hold was really successful (So far! Crossing fingers)

Love to all of you.

 

Olive Kitty: Thanks for sharing your experience. I have now been holding a year and think I will try to taper eventually but not sure when ... so so happy you are having an easier time.

[[Ol...]]

Thanks VNM and NJ.. in my experience I just knew when it was time to start tapering again. When I originally decided to updose and hold, I had no idea how long it was going to last.. about 6 months into the hold I tried to start tapering again and instantly got hit with horrible sxs.. so I just went back to 2mg and waited.. then a year later I finally felt truly stable and ready to taper again, and that was just about 3 weeks ago. No problems so far. Hoping for a successful hold for you!

 

 

[[va...]]

Thanks VNM and NJ.. in my experience I just knew when it was time to start tapering again. When I originally decided to updose and hold, I had no idea how long it was going to last.. about 6 months into the hold I tried to start tapering again and instantly got hit with horrible sxs.. so I just went back to 2mg and waited.. then a year later I finally felt truly stable and ready to taper again, and that was just about 3 weeks ago. No problems so far. Hoping for a successful hold for you!

Olive kitty our experience with tapering are so similar. You can see in our signatures. I'm planning to start tapering in January after a six month hold after my updose. What intolerable symptoms did you have when you started tapering after six months?

 

[[Ol...]]

Heya Vali! We do have similar paths. My main symptoms were nausea and acid reflux, which are really hard for me bc I have an extreme fear of vomiting.. have had it my whole life but only through benzo w/d did I discover this phobia and realize how much it had affected my life. My symptoms in general have almost all been physical, complete loss of appetite, I lost almost 20lbs and I did not have that to spare! Now I have gained it all back and am on a pretty good eating schedule, even while tapering this time, thankfully.

[[va...]]

Heya Vali! We do have similar paths. My main symptoms were nausea and acid reflux, which are really hard for me bc I have an extreme fear of vomiting.. have had it my whole life but only through benzo w/d did I discover this phobia and realize how much it had affected my life. My symptoms in general have almost all been physical, complete loss of appetite, I lost almost 20lbs and I did not have that to spare! Now I have gained it all back and am on a pretty good eating schedule, even while tapering this time, thankfully.

 

Olive kitty I'm glad you're feeling better and I hope you have a successful taper 

[[Ba...]]

OliveKitty,

Well I am glad you are doing so much better!! yay

 

Well I did hold quite a long time... was in the long hold support group til I realized my issues were kinda worse than what I saw going on there.  And of course I have the pre-existing sleep problem that is unlike others I have seen plus have been on these... decades.  And not just one-- on and off and kindled and all that.

 

I would sort of like to get off my spec of klonopin to at least be on just valium and ambien, ya know?  Pretty annoying to be taking that speck.  It is like .045 mg, so like equivalent to like .9 valium.

 

I have been able to go out if I take a bit of Lyrica (seems to work better for me than gabapentin, altho I know its profile seems worse).  But think it makes my tinnatus worse, possibly having an allergic reaction to it (have had eyelids swell and be red and even puffy under eyes... then skin flakes off and is real sore).  And yes, it can do this.  ;(

 

You know I wound up on klonopin as nothing else helped me... and now kind of don't believe klonopin could possibly be good for me as wehn I took my tiny dose and was on phone with someone, I went right off into withdrawal when I took it.  Now that is not normal!  sheesh.

[[Ol...]]

Thanks Vali, I hope so too! You never know with this non linear healing...

Barbara, I was on the long hold support group too but it's kind of crazy over there! I love everyone on there so much but it is such an active page I have a hard time keeping up. I'm sorry to hear of all of your troubles, I do hope you can get off that speck of Klonopin soon. Much love.

[[Ba...]]

Hey, Olive!

Yes, agree,  I found the group moved too fast for me and people were doing a lot and felt a bit overwhelmed.  Then again, it does not take much to overwhelm me.

[[Da...]]

If I increase my dose after completely reinstating is that considered an updose?

[[Ol...]]

I would say yes, though I don't have much information. What was your original dose? And what are you at now?

[[Da...]]

I would say yes, though I don't have much information. What was your original dose? And what are you at now?

I was at 3mg originally dropped down to 1 mg now back at 3mg

[[Ol...]]

Yes that is an updose. Also when you go back to your original dose you might call it reinstating. It's ok, just try again and maybe go a bit slower.

 

[[Fi...]]

BUMP .. Just thought it might be prudent to push this "More Support" -->"Support Groups" --> "Other Support Groups" --> "Updosing Support Group" thread up the list in the event an unfortunate sole or an experienced person is searching for or wishes to contribute to: anecdotal evidence &/or evidence obtained through the scientific method related to Updosing of Benzodiazepines.

 

Best Wishes

 

Edit:

 

I'll quote a brief synopsis I posted earlier of my tapering and cessation attempts and suggest that you search and observe to aid you as you choose your own path:

 

"Tapering was awful for me and for those that are close and still depend upon me. I up-dosed and am doing fine again. I take Xanax 4 times/day, every 6 hours (it has a relatively short half life). I do start to notice some minor symptoms about 5 hours after my previous dose but, I and my loved ones can much more easily cope with that than the debilitating, persistent and indefinite symptoms I was experiencing during my tapering & another previous cessation effort."