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DMV64: reinstate Saphris?

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JanCarol

I'm sorry - when I posted it last night (it was late) I wondered, "Was that clear?"  Apparently not!

 

So - you want to take one klonopin in the AM, 

Geodon at noon

and the next klonopin at dinner time?

 

So your proposed plan separates the 2 klonopin doses?

 

That's what I'm looking for - to space the klonopin out more widely.

Please give me the times you want to take things - and when do you take your Saphris?  Isn't it a daytime dose, too?  You don't want to take Saphris and Geodon together.  Loop-de-loop stuff for your brain.

Please tell me the times you are taking your doses, and the times you want to take them...and we'll work it out.

 

I hope you see the sun today!

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DMV64
1 minute ago, JanCarol said:

Please tell me the times

So...currently I take the klonopin at 9 and 10am.

Geoden at noon

Saphris at bed 10PM

 

I would like to split the Geoden to take second dose closer to bedtime to have "coverage" for the morning dreads.

Maybe:

klonopin 9AM

geoden 11AM

klonopin 3Pm

geoden 6Pm

Saphris stays the same

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JanCarol

I'm so sorry it took me so many days to get back to you D!

How about this:

Klonopin 9 am

Geodon 11 am  (full dose)
Klonopin noon 

 

You can make this change right away.

 

Then, you can gradually keep moving the 2nd klonopin back by an hour until it is at 9 pm.  

When the klonopin is split by 12 hours we will know if some of your anxiety is breakthrough anxiety from the klonopin.  If this doesn't work, we'll talk about splitting the Geodon, but I'd like to see the Saphris gone (or very low) before you do that.  It is usually taken 2x a day, but I'd like to keep it away from the Saphris.  Please update your signature so that I know where your Saphris taper is?

 

Again, I'm so sorry it took me so long to get back to you.  I imagine you waiting and checking, and finding nothing for 3 days, and I am so sorry for that.

 

I hope you see the sun today!

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DMV64
On 1/3/2018 at 1:04 AM, JanCarol said:

I don't know why my computer automatically picks a place to quote but that is what it is doing. Anyway, I seem to be in a rough wave so I am going to wait to do anything else. Seeing doc tomorrow as well. Really digging deep into the toolbox to deal with the fear/anxiety DP/DR. Sometimes it is really hard not to feel like giving up.
 

 

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JanCarol

Why are you seeing doc?  Is this a regular appointment?  

 

Or are you worried about symptoms? 


Please take care with that - if you tell them about your symptoms - even if they are withdrawal related - they will be obligated to "do something."

 

Hang in there.  You've got the deep toolbox.  Waiting is the hardest part (recommend:  pleasure and distraction!)

How's the knitting?

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DMV64
2 hours ago, JanCarol said:

appointment?  

My new doctor I see once a month so tomorrow is the scheduled regular appointment. I’m just going to tell them about my symptoms and I don’t think that they will want to do anything because they haven’t been pushing me to take any additional meds. So I just might be having to hold a little bit longer or maybe this is just a difficult wave. The knitting is going OK. I’m starting to get somewhere making my first hat. 

Hanging in there using the Claire weeks book and lots of re-reading of Tara Brock. Doing therapy and crying when I need to. Floating through much of my day where I need to just do the next right thing

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JanCarol
55 minutes ago, DMV64 said:

where I need to just do the next right thing

 

Hey D - I survived a lot by asking:

 

"What's next?"

 

Okay, this problem or that problem, I got out of bed - what's next?  Okay, I got out of bed and managed to make a bite to eat - what's next?  Okay, I've hung out some laundry, what's next?  Okay - I have an appointment to get to, what's next?  Okay, I survived the appointment, my hubby needs a thing, what's next?

In tiny little pieces, the day becomes manageable.

"What's next?" became a sort of survival mantra for me.  I've had a lot of pain in the past month, and it's been - magnesium bath, okay, what's next?  Physio exercises, okay, what's next?  Back to bed, what's next?  So I still use this tool!

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DMV64
On 1/3/2018 at 1:04 AM, JanCarol said:


 

Feeling I might have to updose the Saphris. This is pretty severe.

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JanCarol

I don't know where you are in your Saphris taper.  70% of what?  Please list your actual doses, as the tapers should get smaller as you proceed.

 

Have you been doing a straight line taper?

 

We take the 10% off the LAST DOSE, not of the total original dose.

 

For example, from Dec 12, your taper should have been:

Dec 12 2.5 mg ----> 2.25 mg  (less 10% of 2.5)

Jan 12 2.25 mg ---->  2.03 mg (less 10% of 2.25)

Feb 12 2.03 mg ----> 1.82 mg (less 10% of 2.03)

 

So that your tapers become smaller with every taper.  This is important.

 

70% of 2.5 is 1.75.

 

So if you updose, I suggest you consider 2.0 mg.  And hold for at least a month.

 

Remember - do not taper when you are having symptoms!  Hold, hold and hold some more!  The temptation to keep going on a schedule, to the calendar when you are suffering is like pouring oil on a fire.  Wait for the fire to go out!

I'd like to split your Geodon into 2 doses, but you've got Saphris in the way.   

 

What did the doctor say?

Edited by JanCarol

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DMV64

Yes 1.75. I am holding. I still haven’t decided about updose. Doctor is today. 

I will fix my signature.

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DMV64

I  don’t know somehow I have messed this up.  And now I’m in this crappy place and I don’t know what to do about it. I will wait to see what the doctor says I guess. 

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DMV64

I have made a mistake. I have gone too fast. I am fixing my signature. I don't even know where I really am.

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DMV64

oh!  I was doing what my doctor said, it sounded reasonable to go 10% a week......but I see now that has caused more intense symptoms.....it seemed like a good idea at the time.......

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JanCarol

OKAY from our private talks you say a tablet weighs 25 mg for a 2.5 mg tablet.  Have you weighed the tablets to verify this?  Weigh 3-5 tablets and get an average weight to be sure.

 

From our private talks it sounds like you have been taking 1.1 mg, based on the tablet weight.

 

I'm sorry that the doc has done this to you.  I know how hard it is to trust disembodied voices on the internet when a doctor sounds so authoritative and sure of him/herself.  Even when s/he is wrong!  (hint:  they always taper too fast, because they can't believe that these drugs are so awful - otherwise they'd never be able to prescribe them!  I am of the belief that a doctor should not prescribe something they have never taken themselves!)

 

So - now you know - doctor is wrong, and SA protocol is right.  Doctor's way = more symptoms.  SA way = less symptoms.  It's good that we caught this early before you got into too much strife.

If you were tapering by our methods, you would be at 1.82 mg, which would be 18.2 on the scale for your tablet.

 

Why don't you try 1.5 mg  (that's 15 mg total tablet weight)  for 4 days, and see if that eases your trouble?  If, at the end of 4 days, you are still in strife, you can try another updose and increase to 1.82.

 

What do you think?  Does that sound like a plan?

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DMV64

Yes your calculations sound right. I really apologize for my math disability, it is a true disability and I have a terrible time understanding numbers. I did weigh several of the sub lingual wafers and they do you weigh 25 on the Gemini 20 scale. So I could Aptos from what is now 7 to 15. I was kind of hoping just to Aptos to 11 but do you think that’s too little?  I’m really willing to go with whatever plan will help me stabilize. I’m feeling really upset with the doctor and myself and I need to see him today and somehow speak to him about this. I just finished the mini video shoot and I’ll see if I can get a copy! 

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DMV64

I really do need help with the math. I don’t know if you’re able or have the time to make me a chart. I tried using that spreadsheet but it got a little confusing. It’s hard not to feel like a little bit stupid and embarrassed about not being able to understand things that other people seem to get

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DMV64

Sorry I forgot to ask this… Should I add in the extra dosage now or just wait till tonight and take the whole new dose

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JanCarol

Wait till your regular time.

 

Here's a tip on the maths...

 

25 mg total tablet = 2.5 mg.

 

So all you need to figure your dose is to move the decimal point.

1.1 mg = 11 mg of tablet.

 

So you are on 0.7 mg?  (7 mg of tablet).  You can try going to just 1.1.  Sometimes I split the difference.  You would be on 1.8 mg if you were doing an SA 10% of previous dose taper.   Splitting the difference would be 1.25 or 12.5 mg of tablet. 
 

Let's see if 1.25 mg will cover it?

 

Why not start there?  Hopefully it will cover the worst of your strife.

 

Does that help?

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DMV64

Yes. That helps. Thank you. I will try tonight for 4 nights right? And then reassess. Hopefully will stabilize me. I appreciate all the help with the math too. 

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DMV64

I do feel Like I will need help to calculate from this point on. I feel totally lame saying that but I don’t want to mess up.

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DMV64

Bac

2 hours ago, JanCarol said:

Wait till your regular time.

Back from the doc. The resident was wonderful. Listened intently, took notes, initiated conversations. Totally was willing and in agreement I needed to go slower. I mostly saw her. The main doc is a well respected research based university guy. I think I have said that here before. He just pops in at the end of the visit. I do not really feel he is hearing me all the way. Resident and I (and hubby was there for clarity and support) decided to go with updosing saphris to the 12.5 (although my scale just does 12 and 13 so I guess I will just pick one). Seeing how I feel in 3 or 4 days and checking in to see if I need to make another change. Holding everything else. If all is well, holding there for 3-4 weeks and then dropping 10% of that dose. 

Main doc came in and after addressing I was having trouble said he is considering or maybe suspecting saphris is not the drug to lower, that maybe it was "working" in some capacity and perhaps we should look at another drug. I really felt blindsided by this and counter proposed the above as gone over with resident. He agreed to this but I am thrown now wondering if he is right. If I should be starting somewhere else, with a different drug. He was also talking about lowering my drug load as much as possible but that Saphris might not be a zero, which also kind of freaked me out. I mean, of course it gets harder the lower I go right? That does not mean stop, this is your correct dose, does it?

Not really a day for me to make major decisions like that.

He also mentioned in passing rapid withdrawal in a hospital setting, which I have heard of but have no idea what is actually done. While appealing in some way, this terrifies me. All experiences and opinions welcome.

So for right now I am updosing tonight saphris. And hoping to stablize in a few days.

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DMV64

Wondering now if I should go back to Geoden taper? After what doc said. I am confused.

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JanCarol

Hey DMV - 

 

Resident doc may be understanding and listen to you,  but may still not understand how these drugs work.  It's hard to get someone to believe something which opposes his/her livelihood!

 

Is It Withdrawal or Relapse? Or Something Else?

 

Most of what they call "relapse" is really withdrawal symptoms.  You can have withdrawal symptoms - sometimes up to 2 years after quitting the drug (more if you CT) so - your doctor doesn't have a clue.

 

What you have is symptoms from tapering too fast - not that the Saphris was "working."  The doctor is invested in believing that these drugs work.  We at SA tend to believe that they perturb neurotransmitters, and cause effects - but those effects are only changes - not "working."  There is no such thing as a "Saphris deficiency."  (so don't buy into the "like insulin for diabetes" pitch, either).  The doctor is not likely to believe that a doctor- prescribed taper is too fast, either (especially if The Professor prescribed it).  BUT IT WAS!  I could see that from 14,000 miles away - but he can't see the nose on his face, because he is educated by the drug companies, and invested in believing that his job of prescribing is an "important service to mankind."

Have you read "Anatomy of an Epidemic" by Robert Whitaker?  Can you read right now?  (sometimes people can't when the symptoms are too bad).  If that one is too hard - it's full of facts and figures and damning evidence - there is another good one, called "The Pill that Steals Lives," by Katinka Blackford Newman which is more of a personal story about how a woman got ruined by antidepressants, and she happened to be a journalist, so she researched and found out that all of these drugs are not what they claim, and that many people have "psych diagnoses" from the drugs, not from their "mental illness."  I strongly suggest you scuttle to your nearest library and get one or both of these books and start reading (if you can) - because what you're hearing from your doctors is not based in science.

 

I wish there was a short version to get this across to you about how the drugs work.  The best I can do is show you a video of Robert Whitaker talking about his book, 11 minutes:

 

Unfortunately, even though this is one of the shorter of his talks - he talks mostly about psych drug induced violence, not about withdrawal.  He does address the chronicity of symptoms that the drugs also induce, starting at about 5:45.  At 9:15 he says, "Time and time again, we find that the unmedicated patients do better."


Where are the tests to say that you have this or that diagnosis?  How are the diagnoses determined (hint, a bunch of pharma-paid p-docs get together and take a vote)?  What do the drugs actually do?  What are the long term effects of the drugs?  None of this is anywhere near what your doctor understands.

 

So - here is a quote from me, that I wrote to someone years ago who was tapering too fast.  The goal of tapering is to sneak out from under the drug.  To do it so slowly and carefully that the symptoms of the taper don't wreck your life (I was talking about Saphris then, too):

 

Quote

Think of the Saphris (or any drug for that matter) as a wolf or a bear.

 

When you are in the wild and you encounter one of these things, the FIRST thing you must do is: KEEP CALM.  (yeah, I know, the meme and all, but it's true)  The next thing you do is DON'T MOVE!

 

If it is a total standoff and you want to get away, you CANNOT run.  It's you and the bear.  If you run, the bear and wolf have a hard-wired instinct to chase, and you will lose.

 

The goal in a standoff with a bear is to sneak.

 

That's what a taper is.  Sneaking away from the wolf.  You've seen a cat stalk - it waits until the prey is not looking, then moves a bit (maybe 10%?)  then it waits.  And waits.  And waits.  Holding will save your life, when you are in a standoff with a bear.  And Saphris and olanzapine are a bear and a wolf respectively!

 

Before, you dropped your berries and ran away, and the bear caught up to you.  Didn't work. 

 

The goal is to sneak the drug out of your system sooooooo slowly that your brain hardly notices it's gone.  And doesn't chuck a wobbly like before.

 

See also - http://survivingantidepressants.org/topic/4463-how-do-you-talk-to-a-doctor-about-tapering-and-withdrawal

 

 

Updose and see how you go.  Wait 4 days at the new dose to see if you get relief, and if it's still too intense, updose again (maybe to 1.5 mg?).  Then, when you get to a less painful symptom pattern - hold.  Hold some more.  Hold until the symptoms are relieved, and then hold another month.

 

I don't recommend you switch back to the Geodon taper - I suggest that you should now hold until your symptoms subside (after updosing to the minimum possible dose to cover your symptoms).  This is from too many changes, too fast - and the best way to stop digging that hole is to stop making changes.

 

These drugs are far stronger, far more addictive than the doctors understand, and changes in these drugs cause all kinds of upset in our nervous, endocrine, brain and emotional systems.  No doctor is going to believe that your 10% per week taper is "too fast," but it is.

You say your scale only goes to milligrams - but my Gemini-20 is a microgram scale to 3 decimal points.  I just played with mine a little bit.  There's a button called "MODE"  You want it set to g at the top for grams.  You may have it set to oz, gr (grains), or dwt (I'm not enough of a science nerd to know what that is).  You keep pushing the MODE button until it's just the little g at the top.  If this is the case, you will want to re-weigh your tablets so that we can do good maths conversions.  

I'm sorry this is so long, but I wanted to counter the misinformation and confusion that the doctor filled your head with.  They sound so authoritative, so right, so confident, and yet they are often so misinformed, so wrong, and cause harm with their prescribing.

I hope you see the sun today!

 

Edited by JanCarol

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DMV64
4 hours ago, JanCarol said:

hope you see the sun today!

I hope I see the sun too.

Thank you for all this good information. I will have to do the reading on my brain is a little more on the working side. 

 I did the first night of updose  and I feel a little better already. Hopefully this will be enough and I can hold here. 

 I am going to take a look at my scale. All I know is that one Saphris wafer Wafer 25 on my scale and is 2.5 mg dose.   So I am already starting pretty low as far as the milligram weight. It does not show a decimal point but is set to grams. (g).

-D

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DMV64

Checking in. This morning feels like yesterday, better but still a little shaky. A lot less panic though. Holding and waiting. Have a sense of my brain sucking up the drug, its not really a great feeling but it is what it is.

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DMV64

Well today’s taking a bit of a dip. Sticking with the plan to hold for four days and see if this is enough or I need to go up further. 

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DMV64
On 2/14/2018 at 3:11 AM, JanCarol said:

Updose and see how you go

So far: Day 3 of updose going pretty well. Day 1 was really good. Day 2 was mixed, more symptoms than day 1. day 3 is better than day 2 with a slight dip right now at 2pm. Hoping I can hold at this dose. 

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DMV64

I feel a lot more stable. But for some reason this drug always wakes me up pretty early. Maybe a bit of a paradoxical effect, I don’t know. Also I feel kind of chemical. 

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DMV64

  I also noticed that this medicine generally makes me feel like crying. I know it is better than Feeling terrorized but it’s still not a great option, although it seems like the one that I have right now.

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JanCarol

This sounds promising, D!

I think you got enough of an improvement to keep holding there.

 

Consider it a baseline, and use your non-drug techniques to improve the baseline before you even think about tapering again. 

It may be 3 months of holding to recover from the doctor's too-fast taper.  You can use this 3 months to keep separating the klonopin doses.

Oh, we have sun here alright, another sunny day downunder.  Here in Brisbane, the weather is supposed to be:  "Sunny one day, Perfect the next."  (hint:  the perfect days are not the sunny ones!)

 

I hope you see the sun, too!

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DMV64

 Sounds good. I feel better but the only thing that really is not working out so well is I’m sleeping less. This drug is very activating for me. So I seem to keep waking up at about 530 in the morning. Where before I was sleeping until at least 630 or sometime seven. Last night I woke up one hour after I went to bed. I did fall back asleep but when I woke up I felt like I was wide-awake.  Then woke up a bunch through the night and finally just got up at 5:23. 

-D

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DMV64
On 2/18/2018 at 1:22 AM, JanCarol said:

It may be 3 months of holding

I think my Vyvanse is bringing symptoms in the morning. I don't know what to do about it, because I don't want to make changes that will make me worse off. Ideas? 

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DMV64

Hard day today. Feel like my body "gets use to" the updose really fast and then wants more. Or maybe it was not enough. I cannot tell.

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DMV64

Hello everyone and anyone! I really would love to have a health buddy. Someone to share stories and track each others days. Anyone willing???

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Kristine
15 minutes ago, DMV64 said:

Hello everyone and anyone! I really would love to have a health buddy. Someone to share stories and track each others days. Anyone willing???

Hey DM, Thank you for dropping by my thread and reaching out.  A health buddy sounds like a great idea. I'm not sure if I'd be the best "health buddy" but I'm willing to give it a go! I'm so sorry you are suffering through this mess. You are not alone.  I see you have multiple drugs to deal with. I understand this only too well.  Biggest of hugs. K xo

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DMV64
2 hours ago, Kristine said:

'm willing to give it a go

Great!! Willingness is all it takes. I will message you!

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