DaveB: trying to stop a roller coaster year

[DaveB]

Also if I do cut the vitamins, how long would that usually take in order to see a positive difference? Kind of struggling again today, a week ago I felt like although everything wasn’t great, it was all manageable.  That lasted for a full week of manageable anxiety, now I feel like it is as bad as ever again. Such a fun process!

[Rosetta]

A whole week of managable anxiety!! That is wonderful!  I'm sorry it's over, but this can only get better!  Good idea to ditch the vitamin.  It can't hurt, I don't believe.  Thinking of you, R

[RachelSusan]

Dave,  you can. Stop taking the multi vitamin or you can move it to a different time and take it solo, see if you still get the same anxiety.  Then you would have a better idea if that is what is causing it. 

[DaveB]

3 hours ago, RachelSusan said:

Dave,  you can. Stop taking the multi vitamin or you can move it to a different time and take it solo, see if you still get the same anxiety.  Then you would have a better idea if that is what is causing it. 

 

That is a good idea to move it later in the day to see if that helps anything. I didn't take it yesterday and certainly didn't notice any benefit, another pretty crappy day to be honest. I know I sounds like a broken record but "I was doing so much better, WHAT HAPPENED!" Slept pretty good last night, woke up today with some pretty strong anxiety, hoping it doesn't last all day. Last night was actually really good after a really tough day. @brassmonkey being a had semi-stabilization for a full week, that has to be a good sign right?

[DaveB]

Rough day again...ugh!

[Carmie]

3 hours ago, DaveB said:

Rough day again...ugh!

 

Hi Dave, 

 

Sorry you’re having a rough day. Definitely no fun! 

 

I was happy to read you had a week of manageable anxiety. It shows that healing was taking place. It’s like a roller coaster, isn’t it? Up, down, up, down.

 

Hope you have lots more manageable days.

 

Sending hugs🤗

 

 

[DaveB]

12 hours ago, Carmie said:

 

Hi Dave, 

 

Sorry you’re having a rough day. Definitely no fun! 

 

I was happy to read you had a week of manageable anxiety. It shows that healing was taking place. It’s like a roller coaster, isn’t it? Up, down, up, down.

 

Hope you have lots more manageable days.

 

Sending hugs🤗

 

 

Thanks Carmie, it really is SO up and down. Having a good day so far today!

 

So I have a really embarrassing problem, I debated even posting this but despite my mortification at it, I can’t help but think someone may have heard of this and help me out. So...the last two night I have actually wet the bed...yes just like a 3 year old. I have no idea why, obviously nothing like this has ever happened to me and it is kind of freaking me out. Could it be diabetes from the Zyprexa? Maybe the Zyprexa just puts me in such a deep sleep that I am not waking up? What other symptoms would I have if it was diabetes. The 1st night I slept right through it and figured it was my 4-year-old that was sleeping with us that was the cause...then last night, it woke me up and there was no 4-year-old to defer to. I welcome any thoughts and expertise, hopefully someone has some knowledge on this as I am dumbfounded and unbelievably embarrassed by this.

[brassmonkey]

"being a had semi-stabilization for a full week, that has to be a good sign right?"  That's a very good sign Dave.  How are the swings to the dark side, have they been getting milder?

 

As for the new development, it seems that .2% of zyprexa users have reported similar problems.  It's not an official side effect, but there have been a good number of reports.

 

There are very good screening procedures for diabetes. There is a reported connection between antipsychotics and diabetes  so if you are really concerned the it would be best to have it checked out.

[DaveB]

6 hours ago, brassmonkey said:

"being a had semi-stabilization for a full week, that has to be a good sign right?"  That's a very good sign Dave.  How are the swings to the dark side, have they been getting milder?

 

As for the new development, it seems that .2% of zyprexa users have reported similar problems.  It's not an official side effect, but there have been a good number of reports.

 

There are very good screening procedures for diabetes. There is a reported connection between antipsychotics and diabetes  so if you are really concerned the it would be best to have it checked out.

 

When I swing I still swing really hard and bad to the dark side, is that a bad sign? The good times last longer, used to be an hour here and there, now I can have decent days and then weekends, and the one whole week, so I think that is a good sign.

 

As for the other thing, it is terrible and bizarre. Seriously what a “side effect” to get. Hopefully it was a fluky thing, but I simply can’t keep taking a med that does that, so I would need to taper right away even if not stable if it continues. Thank you for your input and knowledge as always. I will for sure get blood work done to rule out diabetes.

[DaveB]

Woke to some strong anxiety again today after a really pretty great day yesterday (I take my Paxil and Zyprexa pills together at 11PM). Cheated yesterday and had a Dr Pepper at Mother's Day brunch. Had another at about 11AM today and my anxiety has been much better since. Has anyone heard of this before? Am I an anomaly and that a small amount of caffeine and/or sugar actually helps me and calms my CNS down a bit? All I know is the effect is quite startling, really struggling through my morning, had a Dr Pepper and am feeling MUCH better now. As always I welcome all opinions and advice, but right now I am inclined to think I should keep a little Dr. Pepper in my diet in the morning to see what that does. 

[DaveB]

So I was just going over my notes and things, and honestly from my daily log it doesn't really look like I am doing much if any better than I was in January...I was up and down then, much like I am now with big swings and my "anxiety scores" I keep track of were similar. Does that mean I am not stabilizing because of these large swings? Do I really just need more time even after over 4 months? @brassmonkey am I doing something wrong? Shouldn't I for sure be feeling more stable than I was in January?

[Rosetta]

Hi, Dave,

 

I wish you could finish stabilizing.   I'm sorry it's taking so long!

 

I'm not sure about the Dr. Pepper, but for me I think my blood sugar is a big issue.  If I don't eat more regularly than a normal person, I feel bad, and after I eat enough, I feel better.  I have to eat more protein, too.  Have you tried something besides Dr. Pepper such as lemonade to see if it's the sugar that is helping you feel better instead of the caffeine?  That's an experiment you might try to find out. If Dr Pepper does help you, I suppose you could keep it.  I wonder if caffeine is a problem for me only in waves and not otherwise.  So, I don't like to be hooked on it.  I'm still having decaf coffee or one cup of tea everyday.

 

I hope you are feeling better now that it's later in the day.

 

--Rosetta

[DaveB]

5 minutes ago, Rosetta said:

Hi, Dave,

 

I wish you could finish stabilizing.   I'm sorry it's taking so long!

 

I'm not sure about the Dr. Pepper, but for me I think my blood sugar is a big issue.  If I don't eat more regularly than a normal person, I feel bad, and after I eat enough, I feel better.  I have to eat more protein, too.  Have you tried something besides Dr. Pepper such as lemonade to see if it's the sugar that is helping you feel better instead of the caffeine?  That's an experiment you might try to find out. If Dr Pepper does help you, I suppose you could keep it.  I wonder if caffeine is a problem for me only in waves and not otherwise.  So, I don't like to be hooked on it.  I'm still having decaf coffee or one cup of tea everyday.

 

I hope you are feeling better now that it's later in the day.

 

--Rosetta

 

Yes I have tried non-caffeinated soda and lemonade, it doesn't have the same effect. Still not sure what to do with the Dr. Pepper, I just wish I was more stable. I am still having HUGE swings, thought things would be better by now with this extended hold. 

[Waterfall]

Oh Dave, 

I was just readig throughh your threaad.  

Ack.  I cut my finger, and apparently i am having trouble typing now.  

Another frustration.  Going to try harder, though, so you can actually read it.  🙄

 

I was so happy to read that you had a weak that was more manageable.  

That was so wonderful.  

I think the last time i stopped by your thread, 

you had just had something similar.  

You'd just had a better stretch, and were upset that you were in a wave again. 

 

I know exactly how frustrating it can be.  

You're holding, why isn't it getting better faster?  

Well, here's one way to think about it, maybe.  

I'm just guessing... 

 

But while you are holding right now, 

your title is about a roller coaster year, right?  

So it's not like a case where someone has just made one little change, 

and then they hold for several weeks, before they make another little change. 

 

You went through a bunch of changes.  

And your system got pretty unhappy. 

So it's going to take longer than, say, one step in a taper, 

that someone else is doing, 

before your system stabilizes again.  

 

I could be wrong, but that seems logical to me. 

I'm struggling with a similar sort of thing. 

I'm only one one drug still, that I wish I was off. 

The last time I made a change, was to half my dose of Clonazepam at New Years. 

That was over 4 months ago.  

 

Well, first of all, that was a bigger step that I should have made. 

Second of all, there are a lot of things causing stress in my life right now. 

Third, which I think applies to you as well, 

it's easy to forget all the crazy things that happened to my system before that. 

After I CT'd my AD at the beginning of last summer, 

I crashed in the fall.  

Well, along the way, I took St. John's Wort.

Tried to reinstate my AD, more than once, unsuccessfully.  

Took a benzo.  At an 'as needed' dose, which is irregular.  

Tried this supplement, and then that one.  

And then stopped, and started a different one.  

So.  It may be a while since my last change, 

but that doesn't mean my system doesn't need more time.  

Because it's more than my last change that it's dealing with. 

Does that make sense?  

I think your system is going to take a while to 'get over' all that it's been through.  

It will take time to heal, from all the changes it's trying to adjust to.  

 

And thank you, because it's a good reminder, that so will mine.  

I'm having a rough time right now too.  

I wish I could make it easier on you. 

And me.  And everyone else.  

 

I know you don't see it, but I think you are handling this setback, 

better than the last time I read about you having one.  

And hey, having a whole manageable week!?!  

Oh, I can't wait until I have a week like that again.  

They keep telling us, if you have a window, you'll have another. 

They'll get longer, and more frequent, until all you have is window. 

 

Oh, how I long for that day.  

I long for the next window. 

I long for a longer window.  

And it's so hard, after a window, to come crashing back again. 

But hey, at least we get windows.  

Imagine if we didn't!  

 

Anyway, I really hope that was helpful.  

I hope you have a brighter day tomorrow Dave!

I really wish you all the best.  

[brassmonkey]

Dave-- you seem to be doing a good job on everything.  Being on the inside is will be harder for you to see the improvements, but there have been a lot of positive changes since the first of the year. It does take a very long time to stabilize and can be very frustrating while waiting it out. But keep it up, you're getting there.

 

Have you googled "Dr Pepper Addiction"? very interesting stuff. It seem possible that a small "updose" might take the edge off as you have seen.  But you would have to be very careful not to slide back into "using" again.  I suspect that the stress from stopping the caffeine and Dr Pepper is causing things to improve a bit slower, it's a hard addiction to break and can take many weeks to months to do so.

[DaveB]

5 hours ago, brassmonkey said:

Dave-- you seem to be doing a good job on everything.  Being on the inside is will be harder for you to see the improvements, but there have been a lot of positive changes since the first of the year. It does take a very long time to stabilize and can be very frustrating while waiting it out. But keep it up, you're getting there.

 

Have you googled "Dr Pepper Addiction"? very interesting stuff. It seem possible that a small "updose" might take the edge off as you have seen.  But you would have to be very careful not to slide back into "using" again.  I suspect that the stress from stopping the caffeine and Dr Pepper is causing things to improve a bit slower, it's a hard addiction to break and can take many weeks to months to do so.

 

Yeah I have felt much better the last few days I have had my "fix." I wonder if my system just wasn't ready fox the shock of giving it up. I think I may go back to having some every day and see if that continues to help. So weird, but let's be honest, what is normal in any of this. I am going to google Dr. Pepper addiction as I agree, from my experience it feels very real. Maybe I should taper off of this like any other med, after I have stabilized and slowly. What do you think @brassmonkey?

[DaveB]

20 hours ago, Waterfall said:

Oh Dave, 

I was just readig throughh your threaad.  

Ack.  I cut my finger, and apparently i am having trouble typing now.  

Another frustration.  Going to try harder, though, so you can actually read it.  🙄

 

I was so happy to read that you had a weak that was more manageable.  

That was so wonderful.  

I think the last time i stopped by your thread, 

you had just had something similar.  

You'd just had a better stretch, and were upset that you were in a wave again. 

 

I know exactly how frustrating it can be.  

You're holding, why isn't it getting better faster?  

Well, here's one way to think about it, maybe.  

I'm just guessing... 

 

But while you are holding right now, 

your title is about a roller coaster year, right?  

So it's not like a case where someone has just made one little change, 

and then they hold for several weeks, before they make another little change. 

 

You went through a bunch of changes.  

And your system got pretty unhappy. 

So it's going to take longer than, say, one step in a taper, 

that someone else is doing, 

before your system stabilizes again.  

 

I could be wrong, but that seems logical to me. 

I'm struggling with a similar sort of thing. 

I'm only one one drug still, that I wish I was off. 

The last time I made a change, was to half my dose of Clonazepam at New Years. 

That was over 4 months ago.  

 

Well, first of all, that was a bigger step that I should have made. 

Second of all, there are a lot of things causing stress in my life right now. 

Third, which I think applies to you as well, 

it's easy to forget all the crazy things that happened to my system before that. 

After I CT'd my AD at the beginning of last summer, 

I crashed in the fall.  

Well, along the way, I took St. John's Wort.

Tried to reinstate my AD, more than once, unsuccessfully.  

Took a benzo.  At an 'as needed' dose, which is irregular.  

Tried this supplement, and then that one.  

And then stopped, and started a different one.  

So.  It may be a while since my last change, 

but that doesn't mean my system doesn't need more time.  

Because it's more than my last change that it's dealing with. 

Does that make sense?  

I think your system is going to take a while to 'get over' all that it's been through.  

It will take time to heal, from all the changes it's trying to adjust to.  

 

And thank you, because it's a good reminder, that so will mine.  

I'm having a rough time right now too.  

I wish I could make it easier on you. 

And me.  And everyone else.  

 

I know you don't see it, but I think you are handling this setback, 

better than the last time I read about you having one.  

And hey, having a whole manageable week!?!  

Oh, I can't wait until I have a week like that again.  

They keep telling us, if you have a window, you'll have another. 

They'll get longer, and more frequent, until all you have is window. 

 

Oh, how I long for that day.  

I long for the next window. 

I long for a longer window.  

And it's so hard, after a window, to come crashing back again. 

But hey, at least we get windows.  

Imagine if we didn't!  

 

Anyway, I really hope that was helpful.  

I hope you have a brighter day tomorrow Dave!

I really wish you all the best.  

 

This is great Waterfall! Exactly what I needed to hear!

[Waterfall]

3 hours ago, DaveB said:

This is great Waterfall! Exactly what I needed to hear!

 

You're welcome, Dave.  

 

Hey, in all fairness, thank you to you too. 

You helped me to think through it and give myself hope too.  

Sometimes -I- need to read the things I write.  😋

 

I hope you've had a better day today.  

Wishing you all the best. 

[DaveB]

Twice Monthly Update:

 

I am hoping that I am beginning to stabilize. I stopped trying to cut Dr. Pepper until I am more stable. I think it was making things more unstable and worse overall, I am going to limit the Dr. Pepper, but not cut it out entirely until I am more stable, then I will wean down on it. Does this sound like a good plan @brassmonkey? I am having pretty good days that can stretch into multiple days, which I don't remember happening much if at all before now. When the anxiety monster hit though, it still hits as hard as eve, I haven't seen a reduction in severity of swings from windows to waves.  

 

Symptoms:

 

Anxiety - Seems to swing really hard from good to manageable to terrible. I THINK the good times are getting longer when they come, but they can still swing quickly and terribly to the bad.

 

Inability to concentrate or enjoy things - Pretty simple, when the anxiety lets up I have no problem enjoying things or getting things done. When it doesn't it is hard to handle.

 

IBS - Still very much an issue.

 

Oily Skin - Still a thing, but I haven't noticed it quite as much.

 

Face Flushing and feeling "hot" - Pretty much gone.

 

Pins and Needles - Pretty much gone.

 

Negative Thoughts - Mostly just worry about not making progress and going backwards.

 

Sensitivity to Sound - Gone.

 

Sensitivity to Smell - Gone.

 

Shaking (especially in the hands) - Pretty much gone.

 

Burning Eyes - Gone, and was actually a real problem at one point.

 

OCD/Intrusive Thoughts - Not a huge issue anymore, pretty much gone.

[brassmonkey]

Sounds like a good plan Dave.

[Carmie]

Hi @DaveB

 

Yes, that sounds like a great plan. 

 

Stabilize first and then slowly cut out Dr Pepper. 

 

When youre going through a wave trying to get rid of something else you’re addicted to doesn’t sound like a good plan. 

 

Slow and steady does it Dave, one step at a time.

 

Sending hugs 

 

 

[DaveB]

I know neither option is great, but if my body craves the little bit of caffeine in Dr. Pepper (and I do think it is the caffeine and not the sugar as caffeine free sodas have little to no effect). Should I switch to Diet Dr. Pepper (or at least try it) to cut down on my sugar intake? I know aspartame in some ways is scarier than high fructose corn syrup, but I am scared of developing diabetes and it would be easier to lose my Zyprexa/Paxil weight if I could get my small caffeine "fix" in a zero calorie way. Any thoughts?

[Rosetta]

I'm not sure aspartame is a good idea consider you are in WD.  I would taper the Dr Pepper instead.

[DaveB]

I continue to do much better, I am even considering a Zyprexa taper. I want to give it more time before I start to make sure this stability isn't just another mirage, after the last 18 months I am always hesitant to believe any kind of progress. Is Zyprexa available in liquid, or do you have to make your own? The 2.5mg tablets are VERY small and will be tough to cut any smaller than 4ths, so a 25% decrease which I would never want to attempt based on my roller coaster. Maybe best would be a Gemini scale and just file off 10%? I guess I don't like the idea of making my own liquid, and wondering who has come off Zyprexa, and how you did it. Seems like there are many horror stories, including developing schizophrenic symptoms in previously healthy patients. 

 

I am sitting around 75% of back to normal, and have felt this way for about a week now, so though I am not ready to taper, I want to start formulating a game-plan. 

[DaveB]

Also, I am on the lowest clinical dose of Zyprexa, what should be a target "jump off dose?" If I go slow enough will my CNS continue to heal during my taper, or will the continuous change pretty much put my CNS in constant scramble mode again?

[Rosetta]

That's wonderful that you are feeling better!!

[DaveB]

28 minutes ago, Rosetta said:

That's wonderful that you are feeling better!!

 

It really is, I am not 100% or even all that close, but I am having full days and even weeks without the CRUSHING anxiety. I am sure I still have a lot of stabilizing to go, but it is all much more manageable. 

[Hazel]

53 minutes ago, DaveB said:

 

It really is, I am not 100% or even all that close, but I am having full days and even weeks without the CRUSHING anxiety. I am sure I still have a lot of stabilizing to go, but it is all much more manageable. 

That’s awesome Dave and gives me so much hope😊

[Carmie]

3 hours ago, DaveB said:

 

It really is, I am not 100% or even all that close, but I am having full days and even weeks without the CRUSHING anxiety. I am sure I still have a lot of stabilizing to go, but it is all much more manageable. 

 

Hi Dave, I’m so happy for you. It’s great having full day windows. I’m getting them too here and there.

 

Are you going to try to try and get off the Dr Pepper while you’re doing well?  I know it was hard for you to do when you were in the midst of waves.

 

Again, Im very happy that you’re getting some reprieve right now. It feels great, doesn’t it? When we’re in a wave we never feel we will end up getting windows again but they always come, sending hugs 

 

 

[wildchild93]

😃

[DaveB]

14 hours ago, Hazel said:

That’s awesome Dave and gives me so much hope😊

You should have hope, you will be ok. It takes more time than is fair or even seems possible, but it will be fine. 

 

11 hours ago, Carmie said:

 

Hi Dave, I’m so happy for you. It’s great having full day windows. I’m getting them too here and there.

 

Are you going to try to try and get off the Dr Pepper while you’re doing well?  I know it was hard for you to do when you were in the midst of waves.

 

Again, Im very happy that you’re getting some reprieve right now. It feels great, doesn’t it? When we’re in a wave we never feel we will end up getting windows again but they always come, sending hugs 

 

 

 

Thanks Carmie, glad things seem to be going better for you too. I am not going to attempt another Dr. Pepper cut until I am much more stable, and probably not until after I get rid of the Zyprexa. I am debating a trial switch to Diet to see if I can get my "fix" in a zero calorie way. It does feel great and just like life is much more manageable. 

[Dalalea]

On 5/21/2018 at 4:00 PM, DaveB said:

I am sitting around 75% of back to normal, and have felt this way for about a week now,

That's a nice report to read!

Dalalea

[DaveB]

Well it seems like it is still windows and waves for me. Had a god run where things were much more manageable, but it turned on me yesterday afternoon and so far today has been a struggle. Cruel reminder that the process isn't linear, I am sad I may not be as close to starting a taper as I was hoping. 

[Hazel]

1 hour ago, DaveB said:

Well it seems like it is still windows and waves for me. Had a god run where things were much more manageable, but it turned on me yesterday afternoon and so far today has been a struggle. Cruel reminder that the process isn't linear, I am sad I may not be as close to starting a taper as I was hoping. 

Hi Dave,

as you have reminded me many times, this wave will pass and you will be fine-better than fine, you’ll be amazing!  It sounds like overall you have been making a lot of progress.  These bumps in the road are to be expected for a while now I suppose.  It’s just impossible to predict, but you are healing and getting better every day even if you don’t feel like it.  I hope this passes for you very soon.

Hazel

[Rosetta]

Aww. Hugs, Dave.  

[DaveB]

3 hours ago, Hazel said:

Hi Dave,

as you have reminded me many times, this wave will pass and you will be fine-better than fine, you’ll be amazing!  It sounds like overall you have been making a lot of progress.  These bumps in the road are to be expected for a while now I suppose.  It’s just impossible to predict, but you are healing and getting better every day even if you don’t feel like it.  I hope this passes for you very soon.

Hazel

 

Thanks for the reminder!

 

1 hour ago, Rosetta said:

Aww. Hugs, Dave.  

 

Thanks Rosetta.

 

I have got to think having another week of manageable anxiety is a good sign, but back in a wave is tough!