Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rabe]

they have already sent the .9 Viibryd capsules...got them yesterday and I have no others...

[Rabe]

also messaged the doctor about the dose consistency...there is none whether I split them in half or quarters...only if compounded, which pharmacy cannot do, or if I make a liquid which is a scary thought but that may have to be...thank you for that information.  The pharmacy does have Spironolactone.  I will leave it up to him.  Also will make an appt with him because we need to talk about how to do this in a way that makes some sense with other meds.

 

I do want you to understand that I never worried about consistency before...I just took a half Clonazepam years ago or half a Viibryd last year when tapering and it didn't seem to matter.....but now everything seems to matter and I am REAlly learning that lesson in a most unpleasant way.  I feel pretty stupid actually...and believe I often am.  Thank you for the patience you have afforded me...I am truly grateful!!  

[Altostrata]

5 hours ago, Rabe said:

seems to ebb n flow...while can think better

 

do you think the viibryd taper can be affecting things?

do you think it better to taper the Clonazepam first?

dO you think not taking a consistent dose of AMiloride each day makes difference...cant cut pills evenly

if stop it and try eating/drinking more K but have to restart...would/could restarting it be problem do you think ? 

 

If you don't understand why consistency is important -- which I have explained a half-dozen times or more -- or if you are not able to be consistent with your dosing, you are not ready for tapering your psychiatric drugs.

 

We take adjusting drug dosages very seriously here. We are well aware that people might feel very, very sick from drug changes. Please come back when you have gotten your hypokalemia treatment in hand. There is no point in our monitoring your amiloride side effects, that's your doctor's job.

 

I gather you missed this post, for which I spent hours in research:

 

7 hours ago, Altostrata said:

For example, from Dr. Google https://www.drugs.com/sfx/amiloride-side-effects.html

 

You are having recognized adverse effects from amiloride.

 

If you cannot tolerate 1.25mg, if you must take it, the next step would be to make a liquid from it so you can take less, such as 0.5mg. You can get a prescription for a compounded liquid from your doctor or make your own.

 

See https://sites.ualberta.ca/~csps/JPPS9_3/MS_973_Review/MS_973.html

 

Amiloride hydrochloride (84)

• Tablet modified to an oral liquid mixture (solution/ suspension)
• 2 vehicles: Glycerin BP 40 % w/v and sterile water; Glycerin BP 40 % w/v, sterile water and 0.1% Compound hydroxybenzoate solution APF.
• 4a. 1 mg/mL mixture, with or without preservatives, stored in the dark was stable for 21 days at 5 ºC and < 7 days at 25 ºC. Mixtures prepared from pure powder are stable for 60 days at 25 ºC.
• Mixtures prepared from pure powder were more stable than those prepared from tablets.

Amiloride liquid is light-sensitive. Keep it in a dark-colored container in the refrigerator, discard after a few days.

 

 

[Rabe]

I did see that post and responded..thanked you for it and pasted it to my desktop with other information from here.  

 

I am taking the 1/4 dose but recognize thats not totally consistent either...which is why have contacted doctor. 

Thank you again for everything.  I am very grateful.  This is an amazing site...you are doing God's work for sure.

Take care.  Thank you for the well wishes.  Please thank other moderators as well.  You are all amazing!!!

[Rabe]

I did want to say thank you...the symptoms journal you had me do helped me to really see the connection between the med and the symptoms and I am grateful for that.  I knew I didn't feel well with it but had not seen it so profoundly...and even then thought well

maybe its the color puncture I had on Monday that heightened the reaction Wednesday, or the Viibryd tapering, or a new food I ate, etc.  I'm Grateful.  

Also did not know about the NYT article...a wonderful tribute to this gift you have offered to so many lost in the sea of 

psych meds.  Take care of yourselves as you take care of others...

Blessings

RABE

[Altostrata]

You're welcome. Please don't taper the psychiatric drugs until the amiloride issue is settled.

[Rabe]

I don't know what to do...my doctor is in Rome which is why he wrote the rx and sent it to the compounding pharmacy before he left. But that is not your problem.  I am sorry.  Thank you again.  Im sad this had to happen.  My mind is so not what it was and I neither speak nor hear clearly it seems...get so confused.  I already miss the people here.  But if its one thing you taught me it is to look elsewhere for information and help.  Thank you for that as well.  I hope you will take care of yourself...you deserve it!

[Rabe]

Alto, wanted to thank you.  Dr replied to my text and he said to hold steady on Viibryd for now...was NOT expecting that!  Maybe Im helping him understand.  I am SO grateful!  So will get more of .95 capsules made today.  Also going to try to split Amiloride more evenly myself with knife or razor n if not make a liquid or get a liquid.  I am do grateful the Dr. is on board!  And thank you again for suggesting I hold on the taper! Praying gets better.  In past kept pushing and reacted to every med and even food so again am so very grateful! Would appreciated any other thoughts.  

[Rabe]

9.5 not .95...I wish!

[Rabe]

Didn't know what psych dr would say so found some organic coconut water with nothing else added and got more high potassium foods (they said 15 to 20meq more/day) and am going to start there...if doesn't hold will go back to med.  Will give me time to trial doing splitting and liquid.

[Altostrata]

Rabe, I know you need help with the amiloride but we cannot hold your hand regarding the dosing. Please let us know when you have gotten to a steady low dose of amiloride with minimal symptoms that do not change from day to day.

 

If that doesn't work, you'll have to discuss treatment of your hypokalemia with your doctor.

 

Please use Google to find high potassium foods. You are not the first person to have to boost potassium intake.

[Rabe]

if it came across as asking for that it was not my intent.  But I know what I say and read are so often off.  

have discussed with him....he stopped the Amiloride...will do diet and check labs often again.  Have list of

foods from past googling...thank you. 

If and when labs are stable without med or with a med if need be will let you know...

Mainly was so happy the doctor was ok with holding...I reread and realizing I ramble..

[Carmie]

12 hours ago, Rabe said:

9.5 not .95...I wish!

 

Yeah, wouldn’t that be great Rabe, 

I’m on 7.5mg and the way I’m going I’ll be tapering for another ten years😜. 

Wishing you all the best in your taper, sending hugs🤗

[Rabe]

It sure would be!!!  But look at where you started Carmie!!! Wow!!  You are doing so so great!!!  Yay!!!  

 

Thank you for the support...I sure appreciate it Carmie!  I was just SO excited today that my doctor is ok with holding longer...SO grateful!!  I think he is beginning to understand there truly are sensitive systems and I feel blessed for that!  Take care!!!

[Altostrata]

On 5/21/2018 at 7:37 PM, Rabe said:

if it came across as asking for that it was not my intent.  But I know what I say and read are so often off.  

have discussed with him....he stopped the Amiloride...will do diet and check labs often again.  Have list of

foods from past googling...thank you. 

If and when labs are stable without med or with a med if need be will let you know...

Mainly was so happy the doctor was ok with holding...I reread and realizing I ramble..

 

The doctor was okay with holding what?

 

How are you feeling now? Amiloride is out of your drug cocktail?

 

Good to hear you have a list of potassium foods. Now all you have to do is eat them.  Please join forums where natural treatment of hypokalemia is being discussed and learn safe techniques to boost your potassium. If you see anyone here with hypokalemia, you can share what you've learned.

[Rabe]

holding Viibryd taper where iis for now...9.5mg

 

Yes, Last Amiloride last Friday

 

I am feeling quite bit better for now I think....

 

 

[Carmie]

On 5/25/2018 at 4:12 PM, Rabe said:

holding Viibryd taper where iis for now...9.5mg

 

Yes, Last Amiloride last Friday

 

I am feeling quite bit better for now I think....

 

 

Hey Rabe, so glad you’re doing okay now while holding.

 

 Hope all goes well now you’re no longer on Amiloride. Must check that out. Time for google. Don’t know what that is. Hope the withdrawals from that won’t be too bad. 

 

Sending hugs🤗🤗🤗

On 5/22/2018 at 2:30 PM, Rabe said:

It sure would be!!!  But look at where you started Carmie!!! Wow!!  You are doing so so great!!!  Yay!!!  

 

Thank you for the support...I sure appreciate it Carmie!  I was just SO excited today that my doctor is ok with holding longer...SO grateful!!  I think he is beginning to understand there truly are sensitive systems and I feel blessed for that!  Take care!!!

 

 

Yes, our symptoms are really so sensitive. The last couple of days I was using the syringes that didn’t match the other syringes I was using. The discrepancies are ridiculous!! 

 

Im so glad your doctor is okay with you holding. My doctor lets me do whatever I want n he just gives me the scripts I want. I feel so sad for those people who have doctors that aren’t cooperative.

 

💚💚💚💚

[Rosetta]

I'm very happy that you are feeling better, Rabe.  That's nice to hear. -R

[Rabe]

Well, had some good days in a row and am very grateful!  Fell off the cliff this morning after taking the Viibryd but am some better now and hope to be able to get out and run some errands.  SO grateful to have gotten to my daughters and to have had number of good days with her and the baby...I even baby sat!  Something I never would have trusted my body with before.  Wasn't for very long but did it none the less and it felt good.

Always hard to be yanked back into this reality....like seeing something so so beautiful in nature or life that your heart gasps a bit in awe and wonder and appreciation...and then it is gone....

But the memories remain which is a precious thing...

Love and thoughts to all!

[Hazel]

Glad to hear you had a pretty good day Rabe.  It is really hard to be yanked out of a window, but you have a really positive way of looking at it with enjoying the memories of it.  I will have to try to adopt that attitude.

[Rosetta]

Yes, that feeling of being pulled back down . . . Ugh . . . It's so painful.  I'm glad you had good time with the baby, and yes, the memories remain in there somewhere.  They are accessible again at times.  That something I didn't realize until recently.  You are coping, Rabe!  You are learning to cope and succeeding.  It will keep getting better!

[Rabe]

Thank you @Rosetta and @Hazel...yes, it has been a difficult day with both body and mind but it's ok.  Just difficult to lose the freedom of symptomless choices...somehow I tell myself THIS time I will continue to feel this way...it was this that I ate or the breathing I didn't do or the weights and exercise I did or didn't do...but I know it just is the way it is right now...

The break was nice while it lasted...the hardest part is what this does to my daughter...I think I want to believe the good days will remain because she so needs and wants them...

Thinking of you both!!!  Thank you again! 

[Rabe]

No wonder people get put on AD's in WD!!!  It can be quite upending...well it IS quite upending...to everyone. 

[Rabe]

I wake up in the morning and feel good...except that my bladder burns.  After the Viibryd I don't...has anyone else had that?  Yesterday was not long after took it I felt crazy...but usually bout 2 to 3 hours after it Im dizzy and vision is funny....just get to point where think is worth it to keep taking it and slowly drop or does one drop it faster because being on it is so icky....hate this

[Rosetta]

Wish I could give you a hug, Rabe.  I'm afraid that if you don't have severe symptoms that are life threatening the advice would be to drop slowly.  Are vision and dizziness issues signs of electrolyte imbalance?  

[Rabe]

Well...hard to say cause everything ran together it seems...I would say thirst, rapid change from anxiety to HUGE anxiety with pallor, severe weakness, headache,

no stamina, breathing differently...cant remember exactly...just remember felt awful.  I have it journaled.

Thank you Rosetta, I know you are right but sometimes I just want off these meds...and as awful as the rapid Clonazepam taper was in Sept, at least that much of it is gone.  I SO want to be off these medications...they mess with body and mind and there is nothing can of...at least that's how feels.  

How are you doing? ♥️ 

[Rabe]

Sometimes I feel they're going to kill me one way or another anyway...crazy as THAT sounds!!  

[Rosetta]

I know that feeling.  Well, I know you won't CT.  

 

I'm not a taperer.  I really feel for those who are.  I think the fact that you have to take the drug when you don't want to can really cause a psychological distress that is unique.  I survived the CT, but if I had it to do over I would taper because I think I barely survived.  It was really intense.  I am sometimes struck by how close I came to making a permanent decision, and I would not wish that misery on another.  As for rapid taper, that might be even worse than CT to a sensitive system, I don't know.  The fear of making it worse is my most overarching fear.  Every change is fraught with danger after the first destabilization.  So, I think that you are stuck and yet you have been feeling better.  Perhaps you can get better faster if you can eat properly.  I hope so, Rabe!  I'm cheering you on! -- Rosetta

[Rabe]

Hi Rosetta,

How have you been today???

 

[Rabe]

I just read your past posts and SOOOOOO great to read you are sleeping better and feeling better!  GOSH I'm so happy for you Rosetta!  Prayers that may continue for while.  A nice window with a view!!  

I guess i was looking at your Zoloft tapering at one time as to knowing re tapering though you are off meds now.  That is a blessing...wish it could be without the side effects. 

You are right about the psychological distress of taking meds that you don't want to because they don't make you feel good. When I first started tapering at home I was SO excited...but things went so very wrong and continued from there.  Thank you for that insight and how you said it...it is right.  I want to find a way to accept that better and move through it..to not be so fearful and angry and sad etc would help lots I know.

I thought often about a permanent decision...less now....my brain just goes there sometimes, gratefully Ive gotten some better at dealing with it.

 

And can understand the fear of making things worse...seems every change and doctor decision etc along way HAS made it worse...or food changes or too long a walk or too much emotional stress...the color puncture...I cancelled a massage cause felt uneasy about that.  SO over reactive.  

 

VERY grateful to have had a few days last week that felt good and the goodness that came from them....gifts I am grateful for.  Just being able to truly enjoy something or feel something is lovely...but for now that s gone again...but still grateful for those days...and for friends like you here, Rosetta, who are walking the same or similar walk and can understand.  Somedays I feel weary of being isolated/punished because of how things are...nobody can understand this..and I guess I understand that.  How can a person possibly unless have experienced it?  

I have eaten well for long time...am trying hard to stick to that plus adding more potassium...made some zucchini bread the other night and spiked my anxiety and all...think the cinnamon and flour and oil and sugar...not used to any of that anymore.  Very boring bland repetitive diet...but have gained some weight as well with this hold and am grateful for that.  Nothing fits...but now a few things do!  YAY!!!!  

God bless, Rosetta!  Sleep well!!   

 

[Carmie]

On 5/29/2018 at 7:27 AM, Rabe said:

Well, had some good days in a row and am very grateful!  Fell off the cliff this morning after taking the Viibryd but am some better now and hope to be able to get out and run some errands.  SO grateful to have gotten to my daughters and to have had number of good days with her and the baby...I even baby sat!  Something I never would have trusted my body with before.  Wasn't for very long but did it none the less and it felt good.

Always hard to be yanked back into this reality....like seeing something so so beautiful in nature or life that your heart gasps a bit in awe and wonder and appreciation...and then it is gone....

But the memories remain which is a precious thing...

Love and thoughts to all!

 

Hi Rabe, 

 

Hope u are coping okay. 

 

It’s great when we get good days, isn’t it? They don’t always last but it gives us hope that one of these days we will recover. Sorry, your good days were yanked off you. 

 

Good on you for baby sitting. I had a friend’s daughter give me the biggest hugs the other day. She wouldn’t stop hugging me. It was such an awww moment. She’s about four. 

 

I’m so glad that you were able to spend precious time with your family, n like you said, the memories remain. They really are something to cherish. 

 

I’m hoping to make lots of happy memories in the next few months before I taper again. Going to spend lots of time with friends. A friend just messaged me wanting to catch up with me in the City tomorrow. I need to run a few errands anyway, so I might go in if I have the energy.

 

I love when there are musicians playing outdoors on the mall. Once they had all the school bands playing, it was a competition, it was very entertaining. I just sat on the floor for a couple of hours n watched them. 

 

I used to go into the city city a couple of times a week for acupuncture. I want to start going back to acupuncture.

 

It’s amazing what these meds do to us, hey? I see you sometimes get symptoms a couple of hours you take your dose. I was getting symptoms from Seroquel even before I started to taper off it. These meds are evil but trying to get off them too quickly is even worse.

 

Take care💚💚💚

 

 

[Rosetta]

Rabe, I'm sorry I missed the above post somehow.  I hope you are felling ok this afternoon! Peace, Rosetta

[Rabe]

Hi Rosetta...thank you.  Went to storage and tried to work and move things there but just could not.  Maybe tomorrow.  Just not well today.  Came back and am resting...but did a lot there yesterday. Hope your afternoon is doing okay! 

[Rabe]

Just frustrating to get rid of medicine that seems to make you ill and then to have the same symptoms without it!!!  I don't understand at all... 

[Rosetta]

Yes, this crazy.  You will get through it. This is temporary.  Just keep eating right and drinking the coconut water.  You are going to be ok, Rabe. - R

[Carmie]

On 6/5/2018 at 1:46 PM, Rabe said:

Just frustrating to get rid of medicine that seems to make you ill and then to have the same symptoms without it!!!  I don't understand at all... 

 

Yes Rabe, 

 

It certainly is frustrating when no matter what you do you have symptoms. You hit it on the nail when you said we don’t have symptomless choices. The meds cause symptoms and the withdrawals cause symptoms. 

 

Staying on the meds causes symptoms n they can do even more harm in the long run, but the withdrawals can be horrendous. I opt for getting off these poisonous drugs but it will take me a really long time. 

 

I think sometimes we need to try n not focus on the meds and focus on other things that are happening in our day, otherwise we’ll go nuts.

 

I always find it good to organise things when in a window so that when you’re in a wave you’ve got things handy to distract yourself with.

 

I bought a canvas the other day and acrylics. I should stock up on my wool for crocheting. I buy new DVDs that I love, though I have Netflix too. I also do household organising so housework is easier when in a wave n I can find things easily. I’m a bit of a minimalist though, I don’t like lots of stuff. 

 

I had to buy some more kitchen stuff recently though as I’m entertaining friends every week for the next couple of months while in a window. 

 

Take care Rabe, we will win this fight one of these days💚💚💚