DMV64: reinstate Saphris?

[Carmie]

Hi DMV, 

 

I just wanted to say I’m sorry you keep getting those cortisol spikes. Hope your day has been bearable today. 

 

Sending hugs🤗

[DMV64]

Thank you. They really stink. I am hoping they lessen. Today is not too bad. 

[Carmie]

5 minutes ago, DMV64 said:

Thank you. They really stink. I am hoping they lessen. Today is not too bad. 

 

Hi again, I’m glad they’ve been a bit better today💚

[JanCarol]

Hey D!

 

On 8/23/2018 at 6:31 AM, DMV64 said:

Ok. I am at the beach on a short vacation. But the change in routine has my anxiety through the roof. It can be so hard to do anything different in WD!

 

LOL that one may be true for awhile.  I'm 2 years 8 months out of my last dose (who's counting?), but still struggle with change.

Maybe I always struggled with change, and that's why I got drugged to begin with?  I struggle with going from asleep to awake, and going from awake to asleep.  

I used to love to travel, but I took a little 3 day, 2 night trip to a town 1 hour from here (to take my tai chi certification) and it messed up - everything!  Meals, sleep, meds (I screwed up big time and ended up taking morning supplements at night and wondering why I wasn't falling asleep and had more pain - I was taking no magnesium!)  I got sick!  I had to rest for a week!  

You do a lot - the things that you do - like your doula work - would knock me for a loop.

Appreciate what you have - and a question:  was it anxiety?  Or just your body firing at you?

Learn to distinguish between your body firing (chemical) and actual anxiety.  Back to Claire Weekes:

Quote

 

If your body trembles, let it tremble. Don't feel obliged to try to stop it. Don't try to appear normal. Don't even strive for relaxation. Simply let the thought of relaxation be in your mind, in your attitude toward your body. Loosen your attitude. In other words, don't be too concerned because you are tense and cannot relax. The very act of being prepared to accept your tenseness relaxes your mind, and relaxation of body gradually follows. You don't have to strive for relaxation. You have to wait for it. When a patient says, "I have tried so hard all day to be relaxed," surely he has had a day of striving, not of relaxation. Let your body find its own level without controlling it, directing it. Believe me, if you do this, you will not crack. You will not lose control of yourself. You will float up from the depths of despair. 

 

The relief of loosening your tense hold on yourself, of giving up the struggle and recognizing that there is no battle to fight - except of your own making - may bring a calmness you have forgotten existed within you. In your tense effort to control yourself you have been releasing more and more adrenaline and so further exciting your organs to produce the very sensations from which you have been trying to escape. 

 

 

Read more here:  http://survivingantidepressants.org/index.php?/topic/10964-the-dr-claire-weekes-method-of-recovering-from-a-sensitized-nervous-system/ 

 

 

On 8/31/2018 at 6:38 AM, DMV64 said:

@JanCarol  @manymoretodays I am starting to have paranoia. At least I think that is what it is. Beyond social anxiety. Is this normal in WD???? 

 

Yes.  You've been here at SA for awhile now - have you read about  Neuro-emotion ?  Maybe you need to review how our emotional states can get ramped up in withdrawal.

 

It may mean that you are doing too much, going too fast - or - with a holiday at the beach, and daughter moving out, and whatever else is going on, it's overwhelming you.

 

The only way I know to stop overwhelm is to stop, and listen, and try and find out what my body is telling me.  Often rest will help.  Me-time.  Or maybe it's the ear of a friend I need, or a laugh over a pet or with a neighbor.  Maybe I'm not getting enough sun, or maybe I need to set a goal and work towards it.

Paranoia can be a chemical response - induced by the drugs, or it can be a signal from our inner selves that something needs adjusting.  In my experience, paranoia in particular tells me that there is an area of my life where I don't feel safe.

 

If you do indeed feel safe in most areas of your life, then perhaps it is all chemical.  Or perhaps the signal is amplified by withdrawal.

I was listening to Madness Radio today, http://www.madnessradio.net/ and it was Bruce Levine and Will Hall talking about the ways to get out of a funk (the topic was depression, but Will Hall had a broad definition of depression which included intensity) - and they talked about reaching out.  MMT's advice to go outside, call someone, is wise.  Will Hall said, that sometimes he would just call someone up to say - "I don't really have anything to say, I just wanted to reach out to you right now.  I'll talk to you soon, goodbye."  and that was the whole phone call.  He said, just doing that was often enough to help him shift.  When you are serving food to people less fortunate than yourself, or listening to others - perhaps you can shift your perspective enough to focus less on your own state of mind / emotion, and more on others'.  Walk in their moccasins, and then yours don't hurt so much.

I hope you see the sun today!  

[DMV64]

11 hours ago, JanCarol said:

pile symptoms upon symptoms.

No thank you! Ok I will monitor the spikes and see what I think.

[JanCarol]

Hey D!

 

On 9/10/2018 at 10:22 PM, DMV64 said:

@Shep I know this is probably no, but any possibility of tapering my benzos while I am tapering Saphris? I know some people multiple taper.

 

I know you asked this of Shep, who is our benzo mod - but we try and help each other out.

 

We've been through this before - you are having symptoms.  Do you wish to make them worse?

 

That is the simple answer.

 

Even the people who multiple taper, take turns.  You're not ready for that yet.  There may come a time that you will need to taper benzo one month, and Vyvanse the next, because they counter balance each other.  But let's get rid of the Saphris first!

Then, we'll do an exercise again to see which drug needs to be reduced first.  Maybe it will be that you take the Geodon down to half what it is now before tapering anything else.  Maybe you want to eliminate the benzo before you do that.  There are too many variables, and we need to only move one variable at a time to keep you steady, stable.  Simple.  (KISSS principle:  3 KIS's Keep It Simple, Slow, Stable )

 

On 9/12/2018 at 4:46 AM, DMV64 said:

I am really wondering if I need that Cogentin at this point. Can I just stop  it?

 

No, it will need to be tapered, too.  We don't really have protocols for Cogentin, it may be that you can go faster - when the time comes.

But you are still on 2 neuroleptics (Saphris and Geodon) - I don't want to touch the Cogentin until you are done with Saphris, and maybe halfway down on the Geodon.  You went on the Cogentin because you were having tardive symptoms - dystonias / dyskinesias.  We don't want those to return.

 

Really, you are doing incredibly well.  I'm going to remind you again that people who fast-tapered one drug (like what happened with Saphris in December) can become bed-bound, light averse, sensitive to food and sound, unable to be productive human beings - sometimes for up to 2 years, and then, when they pick activities back up again, they are still slow and gradual.  

 

If you want to give up work, or give up doula, or simplify your life in some way - and accept the disabilities that come with multi tapers, or faster tapers - then you could consider going faster.

 

If you want to maintain your high level of functioning, then simple, slow and steady is the way to go.  KISSS.  

* * *

I've been thinking about your paranoia - and thinking about you being alone in your home.  I wonder - when was the last time you lived completely alone?

A house which is emptied of other people can feel - threatening in a way.  Sometimes just having another warm body - even if you never talk - in the house, helps you feel safer.

I would encourage you to do an Autumn cleaning.  Go through and clean and own everything.  Use a manual broom to get the cobwebs out of corners and behind doors can help you feel safe. Allow yourself to take possession of YOUR home, and bless each corner and thing.  This is mine, this is my space.  This practice often helps with paranoia.  If you still feel unsafe (for whatever reason), there are other practices which can improve your sense of safety in your home, at the very least.  Some people use sage, and use the smoke to "chase the bad stuff" away.  Other possibilities are to set up a spiritual space, with symbols that comfort you.  My little sister calls them "my little things," and they include articles from different times in her life to remind her of her Mother, her Grandmother, her Aunties, this or that cat, me, the time she went to Virginia, etc. etc., and she keeps them all over the house so that everywhere she looks, one of her little things reminds her that this is her space, and she is supported in it.  A friend of my mother's took it to another level, and placed carnival glass items on every windowsill, as a sort of burglar alarm - the shattering of glass would let her know of any intruders.  There are many things you can do to ensure that you have a safe space at home, and having ONE place you can go and feel safe, helps immensely with paranoia.

 

I'm still waiting to hear your question from our PM - it's a good question, and I'm certain that others here are asking it themselves.

I hope you see the sun today!

 

 

[DMV64]

6 hours ago, JanCarol said:

If you want to maintain your high level of functioning, then simple, slow and steady is the way to go.  KISSS.  

Ok..I wait. I want to remain functioning. Somedays I am barely doing it but alot of days I am ok. So that is good. I like the idea of the housecleaning, I wonder if I am actually up to it???

I am pretty sure when I am a bit lower I can stop the cogentin....

 

[DMV64]

Also, I have hardly lived alone in my life. Family. Roomates, lovers. Short stints of aloneness

[JanCarol]

Hey D!

 

55 minutes ago, DMV64 said:

I am pretty sure when I am a bit lower I can stop the cogentin....

 

Please taper it when you do.

 

If nothing else, it may affect the uptake of some of your other drugs, and we want your changes to be nice and easy.

 

Cogentin works on acetylcholine, a neurotransmitter, and is an anticholinergic drug.  Anything that affects your neurotransmitters is a candidate for tapering.

 

50 minutes ago, DMV64 said:

Also, I have hardly lived alone in my life. Family. Roomates, lovers. Short stints of aloneness

 

Then this is an opportunity to get to know yourself.  The people I know who have never ever spent time alone, in silence and stillness - only ever get so deep, only ever get so self sufficient.

 

We are social creatures, and designed to live in tribes, but in my experience, those who can learn from their times of solitude, are the ones who achieve lasting wholeness.  

After solitude, your relationships are more real.  Your tolerance for bulldust is diminished.  You become clear and know what you want.  Solitude is a great winnower of chaff.  What you don't need will fall away.  What you really desire will become much more clear.  You will have nobody to blame for your emotional states, and learn to take responsibility for them.  You will learn how to entertain the thoughts you want, and let go of the ones you don't.  Your meditations will deepen, your practices can become a cherished relationship with yourself.

 

I know it doesn't feel that way now, but I am speaking a truth that I have observed in my life.  My best growth happened in my years alone.  My friends who are the most amazing, talented, creative, productive people - are the ones who cherish their solitude.

 

If you can approach it as an opportunity, then perhaps it won't feel so threatening.

[DMV64]

1 hour ago, JanCarol said:

I know it doesn't feel that way now, but I am speaking a truth that I have observed in my life. 

This is helpful. I am hoping it can be a growth opportunity and in some ways it already is. I have just started IOP and it is bringing up a lot of things about self love. Hard to look at.

Hard to know if I really love myself...Really.

[Rosetta]

Hey, DMV,

We wuv you!  (((DMV))). Hang in there, 

R

[DMV64]

Thank you Rosetta! It really means a lot!

[Carmie]

Hi DMV, 

 

Thanks for dropping by my thread. I hope you continue to have fun with your knitting. Amazing distraction! Keep it up! 

 

Sending sunshine your way ☀️☀️☀️

[DMV64]

 @manymoretodaysI am finally getting to posting this schedule and symptoms. Its really pretty consistent with the occasional window(s) and bad days.

6:30 wake up with cortisol spike and anxiety

6:45 vyvanse 5mg

7am go for a run

7:30 .5mg klonopin

8 am fish oil, probiotic anxiety a little better

8:30 6mg geoden (now compounded and split in 3 daily doses) with breakfast

9 am 100mg gabapentin

11:30am 6mg geoden with lunch. 300 mg magnesium

1pm tired. Nap then feel good

3pm 100 mg gabapentin

7:30pm 6mg Geoden with dinner. 300 mg magnesium

8pm .5 klonopin waves of sadness 

9:30pm .25 cogentin, 100mg gabapentin

10pm 20mg omezerpole and 1.2 mg Saphris

 

 

6:30 bigger cortisol spike and anxiety

6:45 vyvanse 5mg

7:15 am go for a run

7:45 .5mg klonopin

8 am fish oil, still anxious

8:30 6mg geoden (now compounded and split in 3 daily doses) with breakfast

9 am 100mg Gabapentin

11:30am 6mg geoden with lunch. 300 mg magnesium

Noon headache. Lay down short nap.

3pm 100 mg Gabapentin

7:00pm 6mg Geoden with dinner. 300 mg magnesium feeling washed out and kind of hopeless, tired of depression

8pm .5 Klonopin 

9:30pm .25 Cogentin, 100mg gabapentin

10pm 20mg omezerpole and 1.2 mg Saphris

 

[manymoretodays]

Hi DMV,

That looks good.  Good job.

And I did see this on my introduction, your post:  Wow. This is awesome. Thank you. I really need it now as I am full of fear and feeling unable to do my work lately and teach.

I'm glad it helped.

Yes, I really like Matt Licata and his words.

 

I just listened to the Claire Weekes, very short video that JanCarol posted for you.  Try that a few times........her voice is quite soothing.   

I had listened to another of hers.......sometime back, and thought her voice was more coarse.......not to be in this one.  Focus on her words and know, that even she, Claire Weekes got through it...... and then to the other side. 

The madness radio piece might help as well.

I know it can feel like a lot of work at times........using coping skills.  And then.........other times not so much.......it all just flows.  Trust me on this.  That the other times......when it all just flows, will return, or come again.........cherish those times.

 

DMV, no problem if you need a break from work now and again.  Don't be so hard on yourself.  I'm only guessing, but my guess is that you didn't miss a bit of work......just missed out on the serenity and peace that fear will take from us if we don't keep after it........with our practices, and our skills.

Doing well here......in my world today......  My Muma just got a pacemaker.  This is my 91 and 1/2 year old Muma!  She's doing great today.  Back home.  And best thing.......and sorry to hijack here and go on about me.........but, best thing is that all that I do now.........has paid off...........I got through all the inter-family communications, around dear Mum just fine.  And now am entertaining.......well, not entertaining, but doing a bit of sponsorship with the younger gals in AA too.  It's rewarding to me in those ways that are priceless. 

So.....moral of that story is........use your AA skills too........as the BB says:  Fear is like stealing........something like that, as it steals the life from us.  Secondary only to resentment.

 

Just hold tight DMV.  HOLDING IS work.  I'm not seeing anything in your notes, that would give any reason for any changes right now.  I'm sorry I mentioned the Cogentin before.  Stay put with that too!  (I'll let JC know, to take a peek at your notes as well)

 

Love, peace, healing, and growth,

mmt

 

 

 

 

[DMV64]

I went to a psychic medium today. It’s somebody I know. I’m just so upset because part of the information she said that she got was that I’m actually not getting better. And I feel like I’m trying so hard to get better. Maybe too hard. With all of the tools and therapies and everything. I just don’t know what to make of it.

[FarmGirlWorks]

Hi @DMV64: an astrologer at a conference, after looking at my chart, told me that it was "surprising" that I was still alive and obviously I must have found a life purpose (I haven't). I flipped and was upset and had nightmares for a couple days. And then I understood why it is suggested that astrologers (or psychics) steer clear of "bad news." They may be wrong and it affects a person so much. And, I am still here even with occasional SI and confusion, so he was "wrong."

 

I am sorry that happened to you. People who haven't gone thru this just cannot understand the ramifications of "normal" information or supplements or therapies or whatever. They may help but in the end it is time, time, a long long time. Take care and shake it off.

[DMV64]

Thank you so so much for this. I am not alone. Your words really have helped. I can’t believe really that she said this. Shaking it off 

[JanCarol]

Hey D - how long are your runs?  

 

Many folks here have found that - while running helps in the short term (it spends that cortisol and calms you down) that too much running can be depleting (and the anxiety returns).

 

The symptom schedule you posted here doesn't seem to point to that - but I thought I would ask.  A 10-30 minute run (1-3 miles) is probably the most I'd recommend.  Because you seem to be very driven and (perfectionist?  are you a perfectionist?  There is a huge correlation between perfectionism and anxiety!) - I worry about you overdoing.

 

Another shocking thing is that you awaken with cortisol and knock down a vyvanse...egads.  I know - you've been given this stuff over time and it's built up, but I can't imagine taking speed in the middle of a cortisol spike.  It's so hard - looking at your schedule - to see what is the "worst offender," there is so much going on with your drugging.

 

The other thing that stands out for me with your symptom notes is the punishing schedule of drugging that you have to keep.  I know why you do it that way - I'm just offering compassion for how hard that must be.  Do you set timers on your phone or what?  I have only ever gotten up to 4 doses of anything in a day (and made mistakes, I'm now back down to 3 for my supplements), and you are having to track - 11 dosing times per day!  OMG, how do you do it and keep from making mistakes?

Keep tracking these for yourself (on paper) - please!  Then when you get a chance, review them (a week at a time might be best) and make notes about BIG STUFF (births, changes in your schedule, stressors, etc.) that might also affect these daily notes.  As you review them, look for changes.  And if you make mistakes - look to see what effect that might have.  Like - forgot to take something or took it late or whatever - and if that changes something.

If after 3 weeks you are coming up with same - same - same - same, then we'll know you're pretty stable.   Brassmonkey calls that "Withdrawal normal."   brassmonkey on "Withdrawal Normal"

 

On 9/26/2018 at 7:06 AM, DMV64 said:

I went to a psychic medium today. It’s somebody I know. I’m just so upset because part of the information she said that she got was that I’m actually not getting better. And I feel like I’m trying so hard to get better. Maybe too hard. With all of the tools and therapies and everything. I just don’t know what to make of it.

 

Oh I used to be that person.  I loved reading for friends because I felt I could "tell it like it is," and not pull any punches.  When you read for money, you have to smile and tell them about the job they want or the tall dark handsome stronger.  Really, those kinds of readings are so boring.  I quit reading for money because of that.

 

But a good reader won't say "you're stuck," a good reader will tell you WHERE you are stuck and offer remedy.  Same with shamans (didn't I tell you something about this before when you went to a shaman?)  A good reader will tell you - "there's something emotional you are avoiding" or "perhaps that relationship needs examining" or  "in 6 months time, look for this" or "this time of waiting seems like a holding pattern, but this, too will pass". . . . there are a zillion ways that people can say things to help you look in the mirror and feel empowered like there is something you can do.

Again, I quit reading for money because readers are expected to be dramatic and sometimes even shocking ("Hey, I went to this reader and they absolutely blew my mind!").  It feeds the ego and becomes a trap for the reader, as they begin to believe in their drama.  Have you ever met a Buddhist or Advaita Vedanta card reader?  Yeah, pretty rare.

Additionally - any reader worth their salt will say, "This may not mean anything to you, but the way I see it . . . " acknowledging that not even the best psychics are right 100% of the time.  

And this is drug withdrawal.  There are factors here that even a superskilled 90th percentile psychic might not understand.

And that's if you even believe in psychics.  There are psychological and empathic skills that people can use to be extremely convincing that seem "psychic" but are a different sort of insight.

 

I thought I would drop by and say hi.

I hope you see the sun today!

[DMV64]

1 hour ago, JanCarol said:

A 10-30 minute run (1-3 miles) is probably the most

I run about 20 minutes every morning. It helps shift my focus away from the anxiety. I know the Vyvanse is crazy. I would like to just drop it to be honest.

Thank you for the validation of my drugging schedule. It is really a challenge. Especially with Doula work and trying to stay on schedule. Birth doesn't really work that way. I can't just stop the labor to taper. Ugh.

The person who "read" me is also my biz partner. Another medium I know (much deeper) feels that it was not a clear channel read which could be true. My biz partner is not exactly thrilled at my lower functioning level due to withdrawal. Either way, it really affected me. Thanks for stopping by! Also hey I made a cut last night to 1.1 Saphris!

[Carmie]

Hi DMV, 

 

Just checking in to say hi. How have your cortisol spikes been lately? 

 

Take care💚

[DMV64]

Thanks for checking in. They have been pretty much the same. How are you?

[Carmie]

11 minutes ago, DMV64 said:

Thanks for checking in. They have been pretty much the same. How are you?

 

Sorry to hear that DMV, 

 

Im still in a windows n waves situation but the windows are longer now. Here’s to taking an hour at a time💚

 

 

[JanCarol]

Hey D!

 

On 9/30/2018 at 6:12 AM, DMV64 said:

Also hey I made a cut last night to 1.1 Saphris!

Alright then!  Well done!  You've been steadily decreasing - and no other changes for nearly 5 months!

 

Oh - yeah - one other change - have you noticed the difference with dosing Geodon 3x a day instead of 2?

Have you noticed a difference between the compounded formula and the pharmacy medicine?  That's actually 2 changes - change in dosing pattern, and change in formula.  (bet you didn't think of that!)

 

I'll see the sun today if you will!

[DMV64]

I have not noticed a difference in the formulation. But I did notice a difference in the dosing schedule. I’m not sure if it was a good idea to split it into three. I have considered going back to splitting it into two. I just feel like I felt a little bit better during the second half of the day when it was split into two. And now I sort of have more of a straight line With drawl feeling throughout the day. I welcome your opinion.

[JanCarol]

Hi D!

 

I don't know what to say on this one.  Geodon is very short half life - only 4-5 hours - but it only hits on a few receptors, while your Saphris hits on a lot.  That's why I didn't object when you split it into 3 - it is very short acting.

 

Maybe that 7 pm Geodon is too close to the 10 pm Saphris?  Maybe you don't need to cover every hour because of the Saphris?

 

The 3 doses might be handy later, when the Saphris is gone.

 

Here's the thing, it's a change - be sure and allow at least 2 weeks between your taper and changing it back.  Maybe wait until you are ready to get it compounded again, and get it made into 2 doses?

 

I'm putting a lot of question marks in because I don't know.  We're heavily into the "Maybe" section!

 

Whatever you decide - remember - don't make multiple changes together, and make the changes as slow and simple as possible!

 

I hope you see the sun today!

[DMV64]

Serious anxiety spike.

Lasting all day. Not sure why.

Tapering mysteries.

[DMV64]

@JanCarol @Carmie @Rosetta @wantrelief  My friends...I am here in tears. My studio is closing. We can't keep going on. We just can't make rent. Landlord let us out. So that's good. But I feel so much loss. Trying not to feel like a failure. This is ANOTHER big change. I feel like I can't take anymore. Need support. : (

[DMV64]

I just don't even know what my life is about anymore

[wantrelief]

I am so sorry about your studio, DMV.  You must be feeling many emotions at the moment.  This isn't a failure at all - it was so brave of you to even try such an endeavor.  Sending you big hugs - WR.

[DMV64]

Thank you. Yes many emotions. Sad. Overwhelmed. Not sure what’s next. 

In part I feel it is due to withdrawal. Even though I have a business partner, I haven’t really been able to be totally present you know. And that hurts. 

[Rosetta]

Oh, DMV, I'm sorry about that.  I can imagine how you feel.  Semding big hugs.  -R

 

[Carmie]

2 hours ago, DMV64 said:

Thank you. Yes many emotions. Sad. Overwhelmed. Not sure what’s next. 

In part I feel it is due to withdrawal. Even though I have a business partner, I haven’t really been able to be totally present you know. And that hurts. 

 

6 hours ago, DMV64 said:

@JanCarol @Carmie @Rosetta @wantrelief  My friends...I am here in tears. My studio is closing. We can't keep going on. We just can't make rent. Landlord let us out. So that's good. But I feel so much loss. Trying not to feel like a failure. This is ANOTHER big change. I feel like I can't take anymore. Need support. : (

 

Oh DMV, 

 

I am so very sorry about your business. It’s hard going through withdrawals n trying to keep a normal life going. 

 

Just wanted to say im thinking of you n sending a big hug🤗

[Rabe]

I am so sad for you as well DMV.  You have had a lot of change it seems.  But you are also so strong and so resilient.  I know you will get through this as well and there will be another endeavor waiting for you!💜

[DMV64]

Friends, What do you think of me checking into a hospital to be tapered off Klonopin in 9 days?

Has anyone done this?

I feel I know the answer here is don't do it.

But it sounds so good.

[Rabe]

Been there done that....felt great for couple weeks or so then absolutely crashed and haven't been same since.  Nervous system doesnt seem to have a clue what to do anymore.  I couldnt eat, lost weight, felt on fire in my head and gut, SO anxious, in ER repeatedly with electrolyte issues... Was tapered off about 9mg in about 2 weeks.  

IDK...everyone is different, but can only share my experience.  Am I glad that part of drug is gone...yes.  But very sad as to where it has brought me.

Take care DMV!!!!💜