Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rabe]

@wantrelief Thank you...Im not feeling proud.  I think I have to not see that therapist anymore.  I sometimes come away feeling so bad...like bad person, what I say is not right and doesnt matter, I texted the doctor when got back and he says he has no problems with what is going on...but thats not what she says.  It is just dysfunctional!  And I end up feeling like the issue. Thanks again.

I just have no idea which drug to taper and why..they both aren't good.  How much.  I leave there feeling so so lost.  And this sight is not credible to her.  IDK.. makes me angry.  People here dont really exist in their eyes...we make thing up...we cant handle things...on and on.  Makes me sad...

[wantrelief]

If you come away from therapy feeling worse and lost then it does not sound like this is a good fit.  It is understandable that you are feeling angry as it doesn't sound like you are feeling heard by your therapist.  I hope your day gets better, Rabe.  

[Rabe]

@wantrelief Thank you....just lots of tears on and off.  When she said you could be off the medications by Christmas and have a really nice Christmas with your kids...how would that feel?  You have so little left to taper.  I just stared at her.  She said when you quit drinking did you do it a little at a time?  No, you just stopped.  Of COURSE I would like to be off these medications...I wish I had never started them, especially the second.  They all interact which makes tapering harder...I noticed that when starting the Viibryd in treatment...it affected the Clonazepam and the hormones....but would the doctor hear me?  No.  Everyone knows best except we who are dealing with our systems.  

I have trust in nothing anymore.  One doctor error after another...saying you have to TRY!  Then, oh sorry...doubling the Clonazepam was too much so now taper it.  Oh sorry, the Lexapro caused a serotonin issue and your system to totally collapse.  Sorry about having you take the Klonopin wafer again and having you end up in the ER wheezing and sick.  No the rash and high BP and uncontrollable shaking you are having is not related to starting the Viibryd this week, and the rash is not a rash.  Lets taper half the Viibryd and some of the Clonazepam...oh my you're depressed so Im putting you in the hospital to get off these meds that are causing it.  The electrolyte issues you are having after the rapid taper are not related to the rapid taper.  Its all withdrawal and you need to just get off these meds!  Why are you resisting this?  You need to TRY!  

Im so angry I could ... I dont know what anymore.  TRY????  They have NO, ZERO clue what 'trying' is all about!!!  Not them, not friends, not family!  

Thank you want relief...and I thank everyone here.  Its the only place I can be me, feel what I feel, speak honestly and be heard and understood. And the only place where anyone has a clue what 'trying' is really al about.  Blessing to you and to everyone here. The tears will stop eventually.   I am grateful for being able to get the car in today...that was hard for me...I felt very very trapped without it today as I just wanted to run away somewhere. 💜  

[Rosetta]

A big hug, Rabe.  Your therapist is simply wrong.  You would not have a wonderful Christmas if you rapid taper.  It's sad that she is so misinformed.  I know what quitting the sertraline too quickly did to me.  Here I am 20 months -- 20! -- later, and I'm still struggling.  One of the Mod's mentioned that after tolerance there is no easy way out.  Tapering is hell and so is CT.  I tend to believe that tapering would not have put my life in danger.  I don't think it would have been easy.  

 

Your therapist doesn't believe that a fast taper can hurt you more than a slow taper.  She's listening to your pain.  The doctor isn't having to sit with you and hear it as she does.  I suspect she's hoping you will take her advice and she believes that if you do everything will be peachy.  She doesn't know what can happen.  That is her failure not yours.  

 

Do not let her make you feel bad for trying to protect yourself from her bad advice.  Cold turkey or rapid tapers only work when they work for certain lucky people.  And we have seen that even if they work the first time, the next time they may be disasterous.  In general, those of us who are all ready suffering from dysautonomia SHOULD NOT rapid taper.  It's extremely dangerous.  I think it might be true that we are guaranteed to feel worse.  

 

I'm not sure that seeing her is good for you.  Being told that you are not trying over and over again can't be useful.  I completely agree that getting down as low on your meds as you have is an amazing accomplishment!!  You are an amazing person, Rabe.  Never forget that.

[Rabe]

@Rosetta Than you Rosetta...as always what you have said makes much sense.  I am just whipped today.  Smoke alarms were beeping last night and a neighbor helped me with them this morning but they continued even with new batteries and disassembling.  I think I am just exhausted from yesterday.  I was ok this morning but after the viibryd and eating I just was so so tired.  I dont know what I am in..tolerance, such paradoxical things...I just dont know but wish I did.  I hope you are feeling better...been thinking about you so.  Thank you again and take care. 💜

[neroli]

 

Dear Rabe

 

So very sorry to hear about your aweful experience with the therapist - and the litany of misinformation, misguidedness, invalidating, frankly disastrous medical nonsense you have been put through.  No wonder we all feel so alone in this - it's virtually the same song sung every time one gets near the medical establishment and we end up feeling like we are numpties, bashing our heads against a brick wall and doubting our own experience.  It's so very not right and I feel for you.  I know how it feels, been there, still there.  We are the human guinea pigs, finding our way through a maze with different openings and dead-ends for each person and no support from the med. establishment.

 

And as for TRYING, flipping heck, if only they would occupy our shoes for a short time, experience it, and see just how much we try, and try, and try and keep on going, slugging through.  It's what makes me nervous about going to therapy - that there will be some sort of Key Performance Indicator that I have to reach, when in reality I don't have the strength or resources at the moment - that I will be classified as just being negative.

 

You have done so well to get to where you are - incredibly well and it's not been a walk in the park.

 

I hope you see some good days/moments soon.

 

Neroli 💜

[Rosetta]

HI, Rabe,

I hope you are doing ok. -R

[Rabe]

@neroli @Rosetta Wanted to thank you SO much for your support.  I am grateful!!! You are both such an inspiration and I feel so grateful, if we must take this walk, to be taking it along with you.  I hope that you both are doing okay...even though not here, I think about all of you daily.  I see my doctor Thursday and am no looking forward to that.  But my system seems to have settled some and I feel blesses...for now in any case.  Eating more foods though still no gain really but if can continue perhaps will.  Just not much hungry.  Love to you both and to all. 💜

[Carmie]

Hi Rabe, 

 

Struugling to think much today but just wanted to say I’m m thinking of you n Sendng big hugs🤗🤗🤗

[Rabe]

@Carmie Oh thank you Carmie.  I just said hi to you!  Wish I was able to distract as well as you are!!  I used to at home...so much to do!  Fish out of water here...just feel so alone.  But working on that.  Take care!!! 💜💜

[Carmie]

13 minutes ago, Rabe said:

@Carmie Oh thank you Carmie.  I just said hi to you!  Wish I was able to distract as well as you are!!  I used to at home...so much to do!  Fish out of water here...just feel so alone.  But working on that.  Take care!!! 💜💜

 

Hi Rabe, 

 

Once again I have to say you are such a sweetheart. The fish out of water metaphor is something all of us can understand on this site. 

 

I would really love for you to reach inside your heart n find something creative you’ve always wanted to do n do that despite the waves n anhedonia etc. I like to paint, crochet, knit, write n do a million art n craft projects. I love nature, music, movies etc etc. 

 

I know it’s hard. I’ve had so much narcissistic abuse in my life, where people crush you n in the end you don’t know who on earth you are, but you’re still there. You need to find you, you can do this Rabe. Don’t let other people crush you. 

 

Sending you big, big hugs and remember you really matter💚💚💚

[wantrelief]

Hi Rabe - Thank you for stopping by my thread to say hi.  It sounds like you are feeling a little bit better today - so wonderful to hear that!  💗

[Rabe]

@Carmie Oh, Carmie...I am in tears!  Thank you for what you said...yes it is hard for me to get into anything...I just have no interest.  I used to be very creative and did a lot.  Guess right now I want to creatively get off the meds...I think.

34 minutes ago, Carmie said:

where people crush you n in the end you don’t know who on earth you are, but you’re still there. You need to find you, you can do this Rabe. Don’t let other people crush you. 

 

Thats what I have been feeling for 3 years.....it has just been one thing after another....trying to do what is 'right', what the doctors say is right, what your family says is right, what the therapists and all say is right...and in the end I lose sight of what I know is best and right and I have so lost sight of any semblance of me...in the mirror or in life...and I get to a point where I want to just curl up and give up.  I have had so much fatigue lately.  I too was long ago diagnosed with CFS and it has always been hugely exacerbated by stress, so it has reared its head often.  Thank you for saying I am still here...I dont feel that way.  You are right about not letting other people crush you...just so hard when you are in a position of relying on them...I so dont like being in that position.

Bless you Carmie!  I am so grateful for you!!  Much love and many hugs!! 💜  

[Rabe]

@Shep @SkyBlue @brassmonkey Hi.  Saw PCP today.  Blood work came back good except it seems my WBC bounces up and down.  Stress can cause that I think and there seems to be a correlation though she is unsure....she believes things are very good overall.  Unfortunately she is leaving and I will have to find another doctor!  Yeesh!  Liked her.  She said taper those meds slowly!  Bless her!  The toe looks good she said, and it does...soaking and Emu Oil is quite fabulous!  No outward signs of infection and I can wear a shoe and walk bit again.  The stress of last Friday with the therapist and car laid me up over the weekend but have been able to eat more foods, get some walks, get out better so am grateful.  

IN general I'm tired in AM but clear, anxiety pretty regular 1030, V at 1130, better bout 1230 or so, anxiety rises gain round 3 to 330 or so...better at 5 and can usually walk...then take the .2 Clonazepam and sometimes worse or neutral.   Anxiety around 8 830.  Premarin often helps that. Feel good usually around 11 or so...clearer.  Clonazepam 1130 makes me tired.  Seems to set my kidneys off...has been case since started tapering the doubled dose.

Up often at night getting rid of it via kidneys seems.  She said to drink less water but then is so concentrated that burns.  

I see the psych doctor Thursday and feel would help having one or two options to present to him if you could help me with that?  If decrease the Clonazepam would be easy to drop by .1 or .5...can I use the compounded capsules or do I get others or a liquid?  Would prefer to take smaller drops and see how goes....can do the slide? 

If decrease Viibryd how would that look?  Use compound capsules?  Get a liquid? Slide as well?  

Dropping the Viibryd seems to affect the Clonazepam more so than other way around...dont know why.  And PCP wants me to taper Premarin! Thoughts?

I am thinking more frequent smaller drops would be better for my system...I hope in any case.  So need to try to stay as stable as can so can continue to eat and not upend electrolytes etc.  Thank you all more than I can say!!!

Have scale, capsules and some clonazepam and viibryd tablets as well. 

[Rabe]

@SkyBlue @Shep @brassmonkeyThank you all for the advice to hold!...huge difference though still so sensitive. Believe it is more therapist than doctor pushing this.  He sees the difficulty in tapering and i think, for my sake, wants it just to be over.  

He did well when took the slide in while back...so believe he will be receptive this time as well.

 

The Clonazepam seems to dry me out...and after I get up at night to use toilet my heart is racing...that started after the dose increase and tapering at home as well....so dont know.  Also wonder if was in tolerance but didnt know it longer ago..had depression later afternoon and  at night often, had couple episodes of bad temper(not me at all), was really animated and active some days and then down, frequent headaches bad, high AM cortisol, scaly inside ears which I think is skin issues have since was doubled, would wake about 6 hours after took it, as do now, sweaty and bit anxious and I thought it was worry re work... (I find I get depressed in between doses now along with the anxiety.  Anyway, ) Trust your advice.  Blessings!

Have thought the later afternoon anxiety was the Viibryd which would be only issue with it though become more sensitive to it too when tapering. But wonder if that afternoon anxiety is the Clonazepam as well cause I had it in the residential facility and they said it was WD....

For what any of this is worth...bless you all! 

[Rosetta]

Shep would know better, but I believe that tolerance is inevitable with benzos.  My understanding is that after about two weeks most people need a higher dose to get any "effect," and that the subsequent doses are simply staving off withdrawal.  This, as I understand it it, is why it is complete folly to prescribe benzos for regular consumption in the first place.  (Prescribing them to be taken on a regular basis to someone who is not yet addicted is beyond outrageous.). So, just in case my comment about tolerance has you worried, that's the basis of the comment. I didn't mean to imply that tolerance was a factor with the Viibryd although I have no idea.  

 

Your body is using the same liver enzymes to metabolize both Viibryd and Clonazapam, correct?  My hope is that once you get to a low enough dose for both drugs you will have enough enzymes to completely metabolize the two drugs, and at that point a taper of one will not effect a taper of the other.  Getting there is, of course, the hard part.  

 

I wish you could find a therapist who is able to support you in your taper without expressing opinions about dangerous methods of getting lower in your dose.  I think that support could be very useful.  

 

Sending a a big hug, R

[Rabe]

@Rosetta Thank you!  I had a better day yesterday but today was hard again.  Nina wanted me to come over Friday and babysit while they go to two games and out and then stay overnight for next day.  I could not even believe she asked...and then when I said IDK..her texts were short and sharp...SHE is frustrated.  It breaks my heart...it is what you said...life is happening around me.  Just feeling very sad today.  I feel I have lost everything that had any meaning what so ever to me....including me.  

In hindsight I probably have been in tolerance...I am grateful for the years I had without the horrible anxiety and panic...I hang on to those and all the good memories.  This, not years I care to hang on to.  

I have nothing to take to the doctor tomorrow...was hoping to hear.  I dont know what anyones thoughts are.  I should probably hold a bit more until the toe is solid....and I have no idea which drug to do first.  I do feel the Clonazepam is an issue...I just feel quite lost.  Thank you for your insights.  As always I can make sense of them and I am grateful!  Bless you!  Hope you had a good day!💜

[Rabe]

10 hours ago, Rosetta said:

our body is using the same liver enzymes to metabolize both Viibryd and Clonazapam, correct?  My hope is that once you get to a low enough dose for both drugs you will have enough enzymes to completely metabolize the two drugs, and at that point a taper of one will not effect a taper of the other.  Getting there is, of course, the hard part.  

 

 

Yes...all three...premarin, and others but mainly the Clonazepam and Viibryd...sensitive substrates they say so when take both what you do to one can affect the other and juste taking them together can be different daily I guess.  Yes...getting to a lower dose is the hard part...though have to be grateful to be as low as am on both I guess...so wish had not started the V.  

Hope you're right that once get lower they wont affect each other so much.  Th Clonazepam doesnt seem to affect the V as much as V affect benzo when taper it....but maybe its both.  IDK really.

[Rabe]

@Rosetta I just dont want to see the doctor tomorrow at all...but with nothing in hand leaves me open to the therapist and her influence on him which is scary.  But we'll see.  Love and hugs!💜

[Rosetta]

Rabe,

 

You want to hold, I know.  You should hold, we all know, but you are afraid he won't go along with that?  He will ask how you are, and you say, not well, but hanging in there.  Just look at him then and see what he says.  If he asks what you want to do tell him you feel that holding is best right now.   

 

If a Mod recommends something, of course, do what the Mod says.  If a Mod does not chime in this is the best I can do:

 

If he won't let you hold then: You really can't taper the benzo by more than 0.05.  If you taper by anything such as a 0.1 amount that would be more than 10% of your 0.9 total day's dose.  What you really want for a 10% taper is to end up with a total day's dose of 0.81, but the pharmacy has said it has a 3% error margin.  So, it's safer to taper by an amount of 0.05.  This is because with a 3% error margin your capsules might have only 0.7857 of the drug inside them if you try to decrease a precise 10%.  That would be a 13% decrease (I think).  Too much.  If you decrease by 0.05 then the decrease will be less than 10% even with the 3% margin of error.

 

Now, which dose to take that decrease from -- the 0.7 or the 0.2?  Which one did Shep recommend last time?  I think I would choose that same dose, and it's probably the 0.7?

 

You are not ready to taper Premarin period!!  Premarin should not be on the radar of the Doctor.  Don't bring it up.  Pretend your PC never mentioned it.  This doc might be worried about being called on the carpet for prescribing the benzo long term, I suspect.  No one should care about Premarin.  I have no idea why the PC would bring that up, but that is the Last thing you need to mess with.  It's not - that I am aware of -- a problem drug that is causing overdoses and suicides.  (A bit of a joke.  I'm sure it's commonly prescribed to women over 50 long term.  Why is that even an issue for your PC, did she say?). Tapering it is apparently not fun.  No need to be messing around with your hormones right now.  And you can say that if he brings it up - Look, doc, I don't need to rock that boat right now, do I?  With everything else?  Why go there now?

 

 

[Rabe]

@Rosetta Thank you Rosetta.  

This doctor did not prescribe the benzo initially...that psych at home retired after a stroke...then my PCP at home took it over and she did me the doubling dose favor and the Lexapro debacle.  The PCP here and the oB/GYN want the Premarin gone cause of heart and stroke risks.  I understand that.  I tapered half it before I had a broken bone and had to stop.  Lowest dose and I cant worry about it now.  No, wont bring it up. 

My heart went off again tonight at around 8/830 (benzo close to 6) and before I just did not feel well and was anxious until bout 11.  My gut says the benzo is big issue and I am WDing from it daily.  But what I know.  In hindsight I dont think it ever was a good drug for me...many odd things long way that no doctor ever connected to it, but could just be my crazy system as well which I had long before the benzo. 

He wants to get rid of the .2 dose.  Or the Viibryd...he changes with my symptoms which are fairly irrelevant in that who knows whats what?  The capsules are new but Ive been on them for over week.  Some of the capsules aren't even full!  That is new.  Will call the pharmacy...with the benzo esp that is concerning.  

I am hoping to hear of at least an idea to take to him from the mods...Shep mentioned a small drop in the Viibryd after everything settles from the head and toe injuries and the new capsules across the board of meds and doses.  So I can take those things to him.  The therapist thinks the benzo should go...

Thank you again so much for your thoughts because sometimes I think still think, small think, maybe they are right...maybe would feel better without them...it is so crazy how it pops up tho I know it is crazy.  When they both are promoting that it is hard.

Ill let you know...thank you so much again!!!!!  💜

 

[Rabe]

@Shep

Shep, I see the doctor today.  

Was wondering...options you mentioned along way are small decrease in Viibryd after am stable....or small decrease in Clonazepam.  Do you have thoughts on sizes of those cuts?  And can I use the compounded capsules that I see many aren't even filled completely! Scary.

Would appreciate any thoughts on what to present to him.  I will tell him about accidents and that those definitely revved up my system which si settling slowly, gratefully.  I am willing to cut after feel more stable, knowing it will not be easy...I can try a small cut.  How small would you say?  Thank you as always Shep.

[Shep]

47 minutes ago, Rabe said:

Was wondering...options you mentioned along way are small decrease in Viibryd after am stable....or small decrease in Clonazepam.  Do you have thoughts on sizes of those cuts?

 

You'll need to decide which drug you wish to taper first. I would reduce the Viibryd, as we've discussed before, but this is up to you. If you really feel that the benzo is problematic, then you should taper that first. Just be mindful that removing a benzo while on a potentially stimulating AD can make insomnia worse. 

 

As far as how much, we've discussed various ways to go with this, including the Brassmonkey Slide. This is from our discussion about reducing Viibryd.

 

On 7/29/2018 at 7:00 AM, Shep said:

The Brassmonkey Slide Method of Micro-tapering

 

You could modify it for a 2% monthly reduction. The reduction schedule looks like this:

 

            Week 1 reduce .5%

            Week 2 reduce an additional .5% (for a total of 1%)

            Week 3 reduce an additional .5% (for a total of 1.5%)

            Week 4 reduce an additional .5% (for a total of 2%)

            Weeks 5,6 Hold at the last reduction level

 

This will be a more gentle way of reducing Viibryd, especially with the concerns about it affecting the clonazepam. 

 

 

 

We keep going through this conversation again and again and I think it's your anxiety that's driving it. Try to use your non-drug coping skills for self soothing so you're not so worried. We're here to help walk you through your taper, but you're going to have to make the decision of which drug to taper and by how much. The mods can give you the basic guidelines and Rosetta is also giving stellar advice. But at the end of the day, this is YOUR taper and YOUR body, so I hope you can dig deep down inside and become an advocate for yourself with your doctor. At this point, you already know much more than most doctors when it comes to coming off these drugs. YOU did the research, YOU found Surviving Antidepressants. Most people aren't able to do this and continue on with these drugs. 

 

You've already made amazing progress, regardless of what your therapist and doctor say. I hope you can realize this so you're not so intimidated by them and can make the best decision for yourself. 

 

I would choose a drug to taper, pick a safe amount like the 2% Brassmonkey Slide I posted, and get into the rhythm of tapering without second guessing yourself. You're going to have waves and windows regardless which drug you choose to taper and the skills you build while tapering one drug are the same skills you'll need for the other drug. So either way, you're making progress. 

 

59 minutes ago, Rabe said:

And can I use the compounded capsules that I see many aren't even filled completely! Scary.

 

 

This is another conversation we're having again and again. I would use regular pills because they are cheaper (you've mentioned cost being an issue) and you don't have to worry about that 3% or so variance in the compounded pills. If you're able to get a prescription for liquid, that will make it even easier. I'm not sure about Viibryd, but I do know that clonazepam comes in a liquid. If the pills aren't filled completely and you're concerned about the dose, please double-check it with your compounding pharmacy.

 

You can continue to use compounding, of course, but if you go with the Brassmonkey Slide, there are weekly reductions. Please discuss this with your compounding pharmacy if this is the route you wish to take. 

 

1 hour ago, Rabe said:

Would appreciate any thoughts on what to present to him.  I will tell him about accidents and that those definitely revved up my system which si settling slowly, gratefully. 

 

Just my take on it, but I would limit any conversations involving accidents. A lot of times, when doctors are treating patients on benzos and they are having accidents, the doctor will attribute it to the benzo and want to take their patient off it - and usually way too fast!  Coming off too fast can lead to even more accidents. 

 

On 10/17/2018 at 2:17 AM, Rabe said:

Thank you all for the advice to hold!...huge difference though still so sensitive. Believe it is more therapist than doctor pushing this.  He sees the difficulty in tapering and i think, for my sake, wants it just to be over.  

 He did well when took the slide in while back...so believe he will be receptive this time as well

 

Do you feel that you are feeling better overall now? If so, you may want to continue to hold for a bit longer before tapering. Also, do you have to see this therapist? The therapist sounds like she's doing more harm than good. 

 

Below is what I posted last month over on your benzo thread. Did you have any luck reaching out to anyone listed?  

 

On 9/21/2018 at 6:19 AM, Shep said:

Here is information on recommended doctors from the Mad In America Provider Directory for your state of Wisconsin: 

 

MiA - Provider Directory - Wisconsin

 

There is one medical doctor listed, but you may also wish to reach out to the psychologists listed to see if they may be aware of medical doctors in the area who are up on psychiatric drug withdrawal. Definitely worth a few phone calls. 

 

And below is the link to the recommended doctors here on SA. Scroll down to "US Central". While I don't see anyone for Wisconsin, do you live close enough to the border of any of the other states listed? Are you open to Skype calls? 

 

SA - Recommended doctors, therapists, clinics

 

Please let us know what you find out. 

 

 

 

 

 

[Shep]

Forgot to add this information on talking to doctors. You may want to re-read these links to prepare for your appointment. It will help to get a refresher in what to say and how to handle yourself, as well as help ease your anxiety. 

How do you talk to a doctor about tapering and withdrawal?
 
What should I expect from my doctor about withdrawal symptoms?

 

EDIT: adding the cartoon version:

 

Withdrawal dialogues & encouragement

 

The links in that first post are cartoons that you may find helpful. 

Edited October 18, 2018 by Shep

[Rabe]

On 8/19/2018 at 6:45 PM, Rabe said:

  On 8/7/2018 at 9:53 PM, brassmonkey said:

Previous dose is 9mg

Week one reduce    9mg         by 1.25% to  8.775mg

Week two reduce    8.775mg by 1.25% to  8.555mg

Week three reduce 8.555mg by 1.25% to  8.336mg

Week four  reduce  8.366mg by 1.25% to  8.127mg

Week five hold at    8.127mg

Week six hold at     8.127mg

 

This gives a total reduction of 5% over a span of 6 weeks. The next series of reductions start to taper off of the 8.127mg

 

Week one reduce 8.127 by 1.25% to 7.923mg

and continue with the same pattern used above.

Just copying this to take with me again.

[Rabe]

The active substance is clonazepam. Each 5ml contains 0.5mg clonazepam. The other ingredients are ethanol, saccharin, levomenthol and medium chain triglycerides.

I had looked at the liquid and steered from it because of the added ingredients and my sensitivity to so much...hence the compounding.  I could, however, get it in liquid compound form and have used that in the past.  Probably still variables.

I can get both tablets from him...think he would do that.

 

I have read the information on talking to your doctor more than once...taking information does help.

 

I went over the doctor information when you sent it and thought had replied but perhaps not.  There were none in the area so went the route of trying to work with one have.  

 

I think feel better overall...up and down still, but less reactive to foods etc.  Still yes very anxious and triggered...my system seems to handle no stress what so ever.  Have been able to do some yoga and short walks some days.  Lots of fatigue.

 

Thank you Shep.  My apologies for asking what already asked...yes probably anxiety a part and brain retaining nothing is another.  Have to find a better way to locate all this...copy it before I cant find it in all the days.

[Rabe]

@Rosetta @Shep @brassmonkey

 I talked to my doctor and he was wonderful.  I would actually begin to recommend him to people in the area...think he is willing and wanting to learn more.  Am feeling the therapist has been pushing not he.

 I took the calculator again, the 1.25% and 2% slides, and Rosetta and Shep I took your information as well.  

He said he did not explain well last time.  He felt I was stuck and like having to prick your own finger for a blood test he felt it would be easier if he just made a decision and moved ahead, though getting rid of everything is bit much and he seems to know that.

I did not speak of any accidents but said I injured my toe and also rolled out of bed which he laughed at and that those revved up my system.  We talked about all the compounds coming due at same time and starting those all together makes a difference, and changing dose forms, etc. We talked about interacting meds r/t the enzymes.  I told him what you said Rosetta about getting to lower doses and then hopefully there are enough enzymes to metabolize both and he nodded like he knew that and/or agreed with that.

He said to hold as long as need and then we could start.  He does feel it would be helpful to start something so I dont feel so stuck and living in the fear of my past experiences.  Said would like to by maybe next appt which is a month though I said I would like not to be more of a train wreck for holidays. 

He would like to lower either the .2 or .7 of Clonazepam just because he feels it has been an issue, but understands about the Viibryd as well.

He asked if we can work on both meds....not at same time but alternate?  I told him I would ask and shared what I have read about that here...not recommended though it works for some, issue being working on two or more brain systems at time.  We did do that last fall before inpatient....maybe why ended up there....but we did both very quickly and half of Viibryd so that may have been bigger issue.  

He also asked about a liquid rather than my weighing..he was concerned about the scale accuracy and problems with doses there as well as my having to do that.  He wondered if diluting it myself or having a compounded liquid made would be a better route and said to ask you about that as well.  He wondered how long a liquid you make at home lasts....do you have to do a new one each time or can you make some and keep it a while?

He said to let him know.  Talked way more than my 15 minutes....was a good thing and I am grateful to all of you!

[Rabe]

@Rosetta @Shep @brassmonkeyHe said to talk to a pharmacist about the liquids etc, I said Ill just ask here.  I believe he is starting to have great respect for this sight and the knowledge here.  I told him to visit and read some of the articles and all...we'll see.

[Carmie]

 

On 10/17/2018 at 2:47 PM, Rabe said:

@Carmie Oh, Carmie...I am in tears!  Thank you for what you said...yes it is hard for me to get into anything...I just have no interest.  I used to be very creative and did a lot.  Guess right now I want to creatively get off the meds...I think.

 

Thats what I have been feeling for 3 years.....it has just been one thing after another....trying to do what is 'right', what the doctors say is right, what your family says is right, what the therapists and all say is right...and in the end I lose sight of what I know is best and right and I have so lost sight of any semblance of me...in the mirror or in life...and I get to a point where I want to just curl up and give up.  I have had so much fatigue lately.  I too was long ago diagnosed with CFS and it has always been hugely exacerbated by stress, so it has reared its head often.  Thank you for saying I am still here...I dont feel that way.  You are right about not letting other people crush you...just so hard when you are in a position of relying on them...I so dont like being in that position.

Bless you Carmie!  I am so grateful for you!!  Much love and many hugs!! 💜  

 

Hi Rabe, 

 

Im sorry you have been so extremely stressed. I just read your latest post and it looks like you have a plan now. It’s good that the doctor is of help n that he even recommended using liquid. I’ve been doing water titration for years, I find it a good way to go. I’ve never kept the water until the next day when I was titrating tablets. I’d just dissolve the tablet n take out what I wanted n throw the rest away and then I’d start again the next day.

 

I’m water titrating the compounded capsule now but won’t be lowering the dose until I stabilise. Im just going to keep using a 7.5mg compounded capsule n take what I need from it every day n throw the rest away as per usual. 

 

From this message you wrote to your latest one you sound so much more upbeat. I’m soooo happy for you. I’m glad your doctor is helpful. My doctor doesn’t have a clue n couldn’t care less about my tapering but he has always given me what I’ve asked for and that’s the main thing. I’m the one that needs to figure out how to do it anyway as my body tells me what to do next or if something didn’t work.

 

I really don’t know how I managed to get down from 300mg to 7.5mg on my own as I wasn’t on this site at the time. Onwards and upwards now. It’s great to have so much more info.

 

Again, I want to say I’m so extremely happy that you have a plan now and that your doctor will help you. That will certainly take some of your fear away.

 

Sending hugs🤗💚

 

 

 

 

[Rabe]

@Carmie Thank you Carmie.  I am relieved he was more interested and actually talked with me and explained his thoughts etc.  He said I think you do better when you understand things better and i nodded.  Though not sure Ill ever understand this entirely.  

Will decide between compounded liquid or just dissolving a liquid here.  What do you use to dissolve in and then you just bought a syringe?

It is amazing to me that you dropped all that essentially on your own!!  Just speaks to your inner core strength.  And the happy wall of course! 

Once make final decisions will be nice.  I am going to pay even closer attention...have been making notes... to the meds and see how each goes.  I certainly get WD from the Clonazepam .... not sure if it or the Viibryd cause the afternoon anxiety but do feel the Viibryd helps in AM with things so hard to choose.  He talked about alternating which may be an ok idea...see what people here think of that.  

This just has been a long wave that is some better,  but having really talked WITH him helped.  Anxiety is up and stiff and you know it all...but yes grateful.

Hope things are good Carmie!  Take care!!! Thank you again!💜

[Carmie]

2 minutes ago, Rabe said:

@Carmie Thank you Carmie.  I am relieved he was more interested and actually talked with me and explained his thoughts etc.  He said I think you do better when you understand things better and i nodded.  Though not sure Ill ever understand this entirely.  

Will decide between compounded liquid or just dissolving a liquid here.  What do you use to dissolve in and then you just bought a syringe?

It is amazing to me that you dropped all that essentially on your own!!  Just speaks to your inner core strength.  And the happy wall of course! 

Once make final decisions will be nice.  I am going to pay even closer attention...have been making notes... to the meds and see how each goes.  I certainly get WD from the Clonazepam .... not sure if it or the Viibryd cause the afternoon anxiety but do feel the Viibryd helps in AM with things so hard to choose.  He talked about alternating which may be an ok idea...see what people here think of that.  

This just has been a long wave that is some better,  but having really talked WITH him helped.  Anxiety is up and stiff and you know it all...but yes grateful.

Hope things are good Carmie!  Take care!!! Thank you again!💜

 

Hi again, 

 

Yes, if we can get things a little clearer in our brain n actually have a plan a lot of the stress n ruminating in our brain can settle down a bit. If you get stressed already maybe just getting a compounded liquid might be the way togo for you. You won’t have to think too much. about it and it will be less stressful for you. I’ve been water titrating for years n it’s second nature to me.

 

Now that I’m using a compounded capsule I have one less chore at night, I no longer have to crush a tablet with my mortar n pestle. I just open up the capsule n put it in water. Easy, peasy. 

 

I just dissolve my medication in water, and yes, I use a syringe. I’ve been using a 5ml syringe throughout my whole taper. I’ve stocked up on them.

 

When you stabilise again you can decide what you want to do, but at least now you have some direction. That must feel great. 

 

I was sorry to hear you have CFS too. A lot of people have gotten over it. I’ve learnt in the last few years it’s a CNS illness. While taoering these meds we can’t calm down our CNS but once we stabilise there is hope. I’ve read a few stories recently of people with CFS who calmed down their autonomic nervous systems by doing all sorts of things n they over it in three or four years. I’ve had it for about 24 years. 

 

You mentioned you think you’ve lost yourself because of all the people around you trying to control your life. You’re still there n you can take your life back one step st a time.

 

Wishing you sunshine today Rabe☀️☀️☀️☀️

 

 

 

[Rosetta]

I'm so happy to read this.  What a relief.  He knows you are serious about getting off the C.  That's good.  I'm impressed that he is willing to listen to you and let you feel heard.  So important.  I've been very worried, and now I feel better knowing that you are being forced to taper today.  Ahhhhhhh!

[Rabe]

@Carmie I so empathize with the CFS for you.  Mine started 30 some years ago and yes definitely r/t to the ANS/ CNS...get all sorts of things going off...sweating too much then not sweating at all, heart in crazy rhythms, skin issues, arthritis issues, lung issues, headaches, BP, cortisol, ... just

so many things not in sync.  It is a challenge for sure and tapering on top of it is truly a challenge and I think about you so often.

Bless you and take care Carmie!  You are such a lovely soul and everyone here is blessed to have you on this journey!💜

[Rosetta]

I meant aren't being forced to taper!!!

[Rabe]

So I went to open the gel capsules I ordered a bit back because I want to learn how to use the scale.  Inside the little package were not gel caps but Day of the Dead Sugar Skull Tattoos! 💜Freaky!

[Rabe]

😳