DMV64: reinstate Saphris?

[Glosmom]

Hi DMV,

My daughter was put on prednisone (steroid) for hives....made her completely psychotic after a couple days. My vote is, "yes" the steroid nasal rinse could absolutely make you feel anxious or many other things.  Wishing you a speedy return to normal.  Glosmom

[Rabe]

I think it could DMV...you will know.  Take care!!!💜

[neroli]

Hello DMV64

 

I'm hoping you are getting some relief from the anxiety.

 

You're doing really well, what with all the surgery and allergy stuff and extra meds.

 

Wishing you as well as can be

 

Neroli 💜

[DMV64]

4 hours ago, neroli said:

really well,

Thank you. Some days it doesn’t feel that way. But I have been meditating and that is helping some. 

[DMV64]

My husband has been helping me with the meditation technique of just observing our thoughts and feelings. I think it is helping. This morning when I woke up with the usual anxiety I just though: anxiety. And let myself kind of slip past it. I did it every time I felt it. It helped!

[JanCarol]

This is brilliant.  It's very much along the lines of what I'm writing to you in PM...

 

I challenge you to NOT call it "anxiety."  That's a diag-nonsense word.  Describe what it feels like in your body, in your feelings, in your thoughts.  In that order.  Because the bodily sensations create feelings and thoughts.

Cortisol spikes is one possibility - but there are others, too.

The more mindful you are, the more you pay attention, the more chance you have to learn something from this.  Forget about classes - your body is trying to teach you something now.  If it's going to be a long haul (and I suspect it will be, though I hope not for your sake) then you might consider strategies to optimise the experience.

 

"I AM ALIVE!" is one reminder.  That you are breathing means there's more right with you than wrong with you in this moment.

 

And Breathing.  Breathing is awesome good.  Good for your partner for bringing up - how to be in the moment when these sensations come.

Because that's all they are:  sensations.  They can't hurt you unless you *react* to them.  And if they're going to be there every day for the next mmmmm months mmmm years - then see them as an opportunity to learn more about yourself, your body, how it works.  And possibly use the energy produced by these sensations for something positive.

Are you still tapering as you have been through surgery and stuff?  Or did you take a break after March 25 (when your sig says was your last taper)?

Soon the Saphris can be gone, and you can work on another drug.  Won't that be amazing?

At some point, you will be grateful that you went so slowly and carefully.  You are managing your descent down the cliff (rappelling) very carefully.

I hope you see the Sun (and Zelda) today!

[DMV64]

16 minutes ago, JanCarol said:

NOT call it "anxiety.

This is good. As is all of your post! I am going to not name it but just notice the feelings physically. 

It does feel like a long haul. Sometimes overwhemling. I have to bring myself back to the moment. 

I am holding for now on taper. Few more weeks. I can’t wait to be complete on one of my drugs. 

Yes yes to breathing! I have also been using dbt skills. 

Thank you for all your ideas❤️

[DMV64]

I started a four hour a week volunteer job at a hospital. I feel a little overwhelmed by my first day. I am hoping I did not make a mistake. That it is not too much for me. My job is to work in the family lounge as they wait for their loved one to come out of surgery. Talk to them. Sometimes walk them to one of three elevators. I was having a hard time remembering where I was going in the hospital maze. My memory and brain fog are making me nervous that I might not be able to get to know my way around. I want to be able to do it. I hope I will be able to. 

[Rosetta]

Hi hope so, too, DMV.  No shame in using a map!

[neroli]

5 hours ago, DMV64 said:

I started a four hour a week volunteer job at a hospital. I feel a little overwhelmed by my first day. I am hoping I did not make a mistake. That it is not too much for me. My job is to work in the family lounge as they wait for their loved one to come out of surgery. Talk to them. Sometimes walk them to one of three elevators. I was having a hard time remembering where I was going in the hospital maze. My memory and brain fog are making me nervous that I might not be able to get to know my way around. I want to be able to do it. I hope I will be able to.

 

Oh wow DMV64!  That is so amazing.  Sounds like a pretty good job as well, a real support for the people who are waiting for their loved one after surgery - what a lovely thing to do.  It's got its challenges at the moment but remember you are just beginning, the first day, where you cannot be expected to know everything from scratch.

 

I do hope it's something that you will settle into and get to know the ropes so you are less overwhelmed.

 

And even if it's a bit of a stretch and you aren't sure you can keep it up in a few weeks - you have still had a go and will have learned what you can cope with at this stage in your WD.

 

I take my hat off to you.

 

Lots of warm wishes

 

Neroli 💜

[DMV64]

@neroli @Rosetta thank you for your kindness an support. I really want to be able to do it and  some part of me is really afraid of it, and afraid that if I can’t do it I would have to quit and that would feel terrible to me. Also there’s a weird flip side of this that I guess is that feeling when you just don’t care about anything. Adhedonia?  I can’t remember how to spell it.  For today I’m going to  try not to worry. I woke up feeling kind of sad and so I’m going to try to work on a few things so that I don’t fall into depression today. 

[neroli]

9 hours ago, DMV64 said:

and afraid that if I can’t do it I would have to quit and that would feel terrible to me

 

I understand this DMV64 - I am facing similar feelings about my work, whether I can keep up with it (or want to, it is quite stressful especially with the damaged CNS symptoms).  I am also concerned that if I can no longe cope and have to drop the work that it would feel terrible for me as I hate giving things up that I've committed to.  But what I am trying to keep front of my mind is that any decisions I make are coming from a choice to assist my healing as much as possible - and if that means that work is too much for me, I will be making a decision from a place of healing, rather than because I have "failed".

[DMV64]

Thanks Neroli.  It’s good to remember I’m not failing but I am taking care of myself. It’s hard not to be able to do all the things I want to do. 

[DMV64]

@JanCarolThese benzos are depressing me. I really think so. I have to start tapering them I think. 

[DMV64]

Also pretty sure I have hit tolerance. Not working like it used to. Having lots of symptoms. 

[Rosetta]

(((DMV))) I'm thinking of you. - R

[DMV64]

Thank you Rosetta! Me too you. Xo

[Rabe]

Hi DMV...Was just catching up.  I liked JanCarols post on anxiety as well...copied it.  I find it hard to describe the anxiety...except that that is what it is.

But Im going to try.  

Your job sounds wonderful...such a support for those people!  How kind of you!  I agree with Neroli...try it and if ti doesnt work you will have learned more and will know that you are taking are of yourself...though I too understand the feelings and fears of 'failing'...pretty much daily. 

I find I dont deal with the CLonazepam the way I did before either...very different.  But you are almost off the one drug and can tackle the benzo when that is complete dont you think?  One at a time.  

As I remember reading your texts you go through times when you want to do more and question your ability to handle it...I feel that is intuitive  and maybe worth at least noting when it speaks to you?  Just a thought DMV.  Take care!  I too hope you see Zelda!! 💜

[DMV64]

Hey Rabe!

@Rabe So good to hear from you. Yes I hope I can continue to do my job. My husband has noticed, even though it has only been two times that it does seem to be taking a lot out of me. But maybe it’s just an adjustment.  I’m going to try to Just pay attention to it. Also I do feel I’ve hit tolerance with the Clonopin. I don’t know if it’s next on my list but I think it’s going to have to be. I am almost off the Saphris, the ending is a little rough here with getting these very tiny microdoses out of a sub lingual wafer then dissolve in water taper. 

Anyway, tell me how you are?

[JanCarol]

Hey D - Thinking of you!

 

Sort of forcefully thinking of you, as I've just learned that I'm allergic to my bedroom!  It stinks of mold and must, and I cannot sleep there!

I'm imagining what you went through - with your baseline and struggles, and pup dog and surgery and all of that.  Empathy!

 

When you remediated the mold,  what did they do?  Did you hire professionals?  Did it cost a lot?  Ours is likely in the foundation, so hubby will have to re-do the paving outside the room to keep water away from the foundation - but what to do about what is already there?  I'm also up against the "imaginary" aspects of this; hubby doesn't perceive it, so it's not pressing for him (and it's his money we'll be having to spend!).  I currently sleep in the hallway on a foam mattress...so many things need doing, and I have no idea when it's going to happen.  I'm reduced to baby steps, as I attend to my schedule (LOL I get 5-10 hours of work a week, and it's taxing enough!  I don't know how other people do it!)

* * *

Tapering:  Don't worry about what's next, like Rabe said, one thing at a time, eh?  

When you've finished the Saphris, we'll do an exercise to determine what is the next best thing.  It's good to wait a month or two in between to get a new baseline and see if we can determine which of your poly-drugs is the worst offender.

Keep your chin up, you're a champ!  You survived so much in the past year - it may feel like treading water with no land in sight - but I assure you that you're developing strengths and skills that will serve you for whatever you choose to do.

I hope you see the sun today!

[Rabe]

Hi DMV...I think your plan is a good one.  Just listen to your body and intuition and I know you will make the right decisions...you always do, you know?  

Look where you are!  You have come such a long way!!  And so much has been going on in your life along the way that has been stressful and you have 

stayed the course.  I for one think that's pretty incredible!  If the job goes ok...great...if not then that's ok too.  It will just be ok...as it is with Miss 'Z".

 

I know the feeling about the tolerance and all.  The drugs affect me differently each day it seems....as well as food and everything else.  I never know what is going to happen it seems which is hard in the sense of any commitments.  Feel badly for my children...my daughter asks me everyday how my day was...I think so waiting to hear great!!  I could say that but it is not so now and I am not going to say that and then have expectations skyrocket and fall short again.  So I just said that every day is a challenge and every day is different..do the best I can.  

I just have two more capsules in the crossover...so that is a good thing.   The Clonazepam spacing I think causes issues in that I feel worse as day goes on so thinking the farther away from the two evening doses from the previous day the worse things get...and I think that contributes to reactions to meds and foods etc...but may be wrong. The more I know the less I know. 🤔

 

Take care DMV...hope work goes ok! 💜

 

 

 

[DMV64]

6 hours ago, Rabe said:

.my daughter asks me everyday how my day was

Oh I relate to this! My daughter asks me and how I LONG to sat GREAT! I know she wants me to feel better. Just last night she asked me how much longer and I had to say probably years. It was HARD.

I am with you on the Clonzepam. I am pretty sure it is causing problems. I have split the dose in two but still feel something isn't working.

Many days I just cry.

Hoping you feel good today.

XO

[DMV64]

6 hours ago, JanCarol said:

When you remediated the mold,

@JanCarolMy husband did it. He went to the hardware store and they gave him mold killer ( I will find out the name) then he painted on top of it. It was hard to get the mold killer into the cracks but he did it. It was the basement so I had less disruption. He did something also with the existing water, I'll find out. He's currently running around like a mad person trying to catch his train!

So sorry you are going through this! It stinks!

[DMV64]

@Rabe @manymoretodays @neroli @Rosetta @JanCarol

 

There is a story I haven't told I think. Its been a bit of chaos around here. 2 weeks ago daughter had a meltdown and wanted to go inpatient at the behavioral hospital for suicidal thoughts. We wound up at the crisis center and after many hours she decided she would instead come home with us (rather than going to her apartment) and stay for two weeks and maybe do partial hospitalization or IOP. She also decided to go back on 5mg Lexapro. She has been off since November. The meltdown was very much related to an abusive relationship and a guy she is addicted to, but I can't discount the longer term withdrawal effects of the Lexapro. She does not really believe this although she is a psych major. Anyway she is 21 so makes her own decisions.

So now its two weeks later and she is much better. We took her to her place Sunday. She spent most of her time here wanting to sleep in the bed with me (we used to family bed). 

It has taken a lot out of me. I think thrown off my taper and also thrown me because I had a hard time originally letting go when she moved out and now I have another mini-detachment.

Sigh. Just wanted to update everyone here.

I hope she is ok. She is still ruminating about the guy, although less.

 

[JanCarol]

39 minutes ago, DMV64 said:

My husband did it. He went to the hardware store and they gave him mold killer ( I will find out the name) then he painted on top of it. It was hard to get the mold killer into the cracks but he did it. It was the basement so I had less disruption. He did something also with the existing water, I'll find out. He's currently running around like a mad person trying to catch his train!

So sorry you are going through this! It stinks!

 

hey D - thanks for this.

I just had a long talk with hubby.  He can smell it but still doesn't understand.  He's like "dust, we'll dust the room and it will be better."  I told him - I can sleep in the spare bedroom that never gets vaccuumed or dusted, and it's fine.  It's the wet, the damp and the mold.

We laid out a plan.  Keep in mind, he's 66, I'm 57, and I have a lot of physical pain, he has had cancer and a stroke, and has a bad back.  So . . . we first reorganise the spare bedroom so that we can move into it while we remediate.  I don't sleep in there now because I got some spider bites - it really is a half-abandoned room, full of my stuff from the USA, poorly organised, and books, and a queensized bed which is used to stack boxes on.  We cleared off half the bed so that one could sleep, but I am afraid of spider bites (or bed bugs, or lice - or whatever!).  This is Australia after all.  So clean the spare bedroom.

Then we have to move everything out of the main bedroom, he can sleep in the spare bedroom (we'll get rid of the spiders), and I'll still sleep on the floor (like I have been, anyway)...then we rip up all the carpet tiles (probably throw them away) and we can clean, bleach and mold treat the floor...)  THEN he has to rip up pavers outside and concrete to change the water flow so that it definitely goes AWAY from the house...and no guarantees that it will fix it!  I asked him, "can we hire a strong back?" and he said, "I think we'll be fine."  I don't think he gets it!  He's been very patient with my weaknesses and challenges to this point, and very supportive of my activities, even doing all the cooking, helping with laundry and kitchen cleaning, and he does 90% of the shopping and errands, plus he keeps the house running (bills, insurance - he notified me today that both of my passports have expired!)...

I'm beginning to wonder how soon we can move into retirement villa.  And - we sprawl through a 3 br house right now - how could we possibly downsize?  Then there's the garden . . . 

Sorry for hijacking your thread - but thank you for encouraging me that we can do it ourselves instead of spending $$$$ on a professional!

Sorry to hear about your daughter.  Sigh.  I know how you feel - so many of my besties are drugged right now, and 2 of them are as drugged as you are.  It's hard to compete with the "common wisdom" of the TV, media, and drug company propaganda that if you are having feelings, you need to be medicated....my friends look at me like, "Mad Jan, she hates all drugs...."  

I was just talking to someone about how, the propaganda machine has got these phones & devices which offer dopamine hits every few minutes or so.  The TV does it, too, keeps you in a suggestible alpha state...so - facts don't matter.  We can talk until we're blue in the face, but we don't have the zing! of the propaganda machine.

Thoughts and prayers!

Edited May 28, 2019 by JanCarol

[manymoretodays]

Ha!  Signed in whilst I wait for the plumber......toilet leak in the basement!

I can so relate through......must do some mold control in a few areas!

 

Oh DMV,

It's so painful when they go through it......our kids.  Mine is a son and refuses to touch any psycho/pharmacological/ biological- and oh I hate that descriptor  anything.  Not after what he saw with me and over medication and adverse effects.  He does go through it ......the lows, the social difficulties sometimes. 

He's a support to me though, which is very cool.  And does not go for the propaganda, media hype, etc.  Is critical of it all.

It's good, I think, when they come to us and talk about their lows.

 

Man, my Lexapro WD was pretty immediately intense.  Maybe due to my history with meds/drugs.  Many do get the months later WD , from what I see here.

 

Plumber is here.  $$$$ !!!!!!

L, P, H, and G,

mmt

Oh, I did have to do some empowering handy-woman stuff on my own, with this recent plumbing problem......as it was a holiday weekend! 

Nice that you two, JC and DMV, have built in helpers, for that stuff anyway.  I honestly don't mind.  I'm into it even again!

Hope my garden thrives.....just getting going with that.

Edited May 28, 2019 by manymoretodays
took out a few thoughs!

[DMV64]

@JanCarol @manymoretodays Thank you for popping by. It really is hard watching our kids go through this stuff. But she keeps telling me she’s an adult and she can handle it.

As far as the mold goes, my husband did say that it really wasn’t that bad taken care of it so hopefully that’s one good aspect of it. I think downsizing to a villa sounds great! I love the Chuck thing so for me that would be great!

[DMV64]

As things are going well with the  Saphris taper I am going to go a little faster. 3 week drop. : )

[DMV64]

@JanCarol I REALLY REALLY feel I am suffering tolerance withdrawal from my benzo. And I want to start tapering. I KNOW not many taper two at once but I want to start now if at all possible. I have been over on the Benzo boards looking around. Can I start? I know you posted to wait but I am really eager to get this going.

-D

[DMV64]

Gosh sorry, I forgot to ask if I need to put my water Saphris in the fridge overnight (since I am only using it two days)

[Shep]

1 hour ago, DMV64 said:

As things are going well with the  Saphris taper I am going to go a little faster. 3 week drop. : )

 

11 minutes ago, DMV64 said:

@JanCarol I REALLY REALLY feel I am suffering tolerance withdrawal from my benzo. And I want to start tapering. I KNOW not many taper two at once but I want to start now if at all possible. I have been over on the Benzo boards looking around. Can I start? I know you posted to wait but I am really eager to get this going.

-D

 

DMV, I saw your post over in the Benzo Tolerance thread, but I'm going to respond here in your thread because I don't want to advise anything without the approval of JanCarol, ManyMoreTodays, and the others who have been helping you along with your Saphris taper. They are more familiar with how you're doing and I don't want to interfere with their advice on tapering the Saphris first. 

 

You posted "things are going well with the Saphris taper" and then less than an hour later, "I REALLY REALLY feel I am suffering tolerance withdrawal from my benzo."

 

What symptoms are you having? 

 

 

[DMV64]

@Shep I have been having pretty severe morning anxiety/panic consistently for awhile now, if not the whole time. I spilt my Klonopin dose awhile ago, it did not help. I do not want to updose. The anxiety really never goes totally away. Also pretty significant memory loss. And I keep dropping things, weird. What do you think? I DO think Saphris is going well. Both are true. This symptom has been consistent. 

[DMV64]

Another thing, and I don't think I posted this at the time it was a while ago, (I realize now I should have) is that one time I accidentally doubled up on a dose of Klonopin and anxiety was practically gone. Of all my unfortunate updosing of my other poly drugs here, that has never happened.

[DMV64]

I feel so bad. I’m so sorry, I realize now this information is probably really significant. And between my brain fog and just be embarrassed about making the dosage mistake, I just failed to post it. And I know everybody’s trying to help me. So I’m really really sorry. I feel afraid that people will be really mad at me and nobody will help me.

[manymoretodays]

3 hours ago, DMV64 said:

Gosh sorry, I forgot to ask if I need to put my water Saphris in the fridge overnight (since I am only using it two days)

 

3 hours ago, Shep said:

What symptoms are you having? 

 

Hi DMV64,

Nobody is mad at you.  (((((DMV)))))

And I am really glad that the Saphris taper is going well.  And even see it listed in your signature!!!  You are doing marvy for marvelous!

 

I think that it's a good idea to keep your second dose of Saphris protected from light and in the fridge.

Also, I did see your descriptor of symptoms above to Shep.

It might be good too, now, to post a day of two of the logs that you keep.  Some current ones.  Note the day.  Then the time on the left.  On the right side note your drug(s) by name, then dosages, include any supplements.  On the right as well you can note symptoms as they occur throughout the day.  Use ratings(1-10 works well).  Also note sleep.

 

You know the drill.  I for one, need a refresher of all your med(s), and when you are taking them from time to time.  And I think that will help, the logs will, get a better look at symptoms and relation of symptoms to your med(s). 

 

For now.  For today.  For right now.  Keep it Simple, Slow, and Stable, the rule of 3 KI's

I also thought I read something about you having to use some steroids post sinus procedure too.  And you are just barely past the six weeks from that, the procedure, I believe.

So.....Wow!  You are doing very good right now, all things considered.

 

L, P, H, and G,

mmt

 

[DMV64]

Thank you ❤️ About to teach will say more later