Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rabe]

I used to think the main villain was Clonazepam but each day seems different and I find it hard to make sense of things.  All these meds...Premarin and Amiloride and Viibryd all seem to affect me differently on different days and I don't know why.  I do think some has to do with the ion/GABA channels that the first two anyway affect but who knows.   I want to get off the Viibryd because of the horrible side effects I had in Dec when I tried.  I have some 9.5mg compounded capsules but am terrified to take them.  I know that sounds silly...but I just can't get myself to do it since I got them over a week ago.  When I was cutting them a year ago to taper it is like they affected me differently than if a whole tablet is taken...faster and harsher when cut.  And when I took a dissolving Klonopin my throat and stomach were awful and I just didn't feel well but the doctor said to try it again and I did and my eyes got SO red and puffed up...I was wheezing and in the ER.  I am wondering if the compounded form of Viibryd in a gel cap is going to affect me differently as well.  And it concerns me that one compounding pharmacist (the head one I think) said Viibryd could not be crushed because of the chemicals involved but a different pharmacist could find no reason not to compound it.  Im sure its quite obvious my trust went out the window long time ago with doctors and pharmacist and all.   If any thoughts, other than my craziness, would appreciate it.  I lose my perspective/wise mind I find with all this!  Thank you! 

[Rabe]

I used to think the main villain was Clonazepam but each day seems different and I find it hard to make sense of things.  All these meds...Premarin and Amiloride and Viibryd all seem to affect me differently on different days and I don't know why.  I do think some has to do with the ion/GABA channels that the first two anyway affect but who knows.   I want to get off the Viibryd because of the horrible side effects I had in Dec when I tried.  I have some 9.5mg compounded capsules but am terrified to take them.  I know that sounds silly...but I just can't get myself to do it since I got them over a week ago.  When I was cutting them a year ago to taper it is like they affected me differently than if a whole tablet is taken...faster and harsher when cut.  And when I took this dissolving Klonopin my throat and stomach were awful and I just didn't feel well but the doctor said to try it again and I did and my eyes got SO red and puffed up...I was wheezing and in the ER.  I am wondering if the compounded form of Viibryd in a gel cap is going to do the same.  And it concerns me that one compounding pharmacist (the head one I think) said Viibryd could not be crushed because of the chemicals involved but a different pharmacist could find no reason not to compound it.  Im sure its quite obvious my trust went out the window long time ago with doctors and pharmacist and all. Sorry to bother you.  If you have any thoughts, other than my craziness, would appreciate it.  I lose my perspective/wise mind I find with all this!  Thank you! 

[Rosetta]

I don't have any advice for you, but I want to give support.  If the drug isn't timed released, I would think that one of the pharmacists may have thought it was and told you it couldn't be compounded by mistake.  Maybe he didn't want to have to crush the pills?  There are many reasons a person will tell someone No.  Sometimes, I feel that some people just like to say it the way a 2 year old does.  The person feels a sense of power by saying no.  

 

Anxiety about changing anything, and I mean anything, is something I struggle to combat.  For example, I need to sleep in the same room on the same side of the bed.  Changing that upsets me.  It shouldn't cause a problem, but I'm simply afraid.  That is WD for me -- being afraid of everything.  It's exhausting.  Taking a new form of the drug would definitely be a cause of anxiety if I were tapering.  However, it might be an improvement for you when you reduce the dose.  The mix of side effects and WD symptoms might make it hard to see which is which, but a lot of people start to feel better, not worse when the drug load is reduced.  Maybe it will help with your electrolyte problem?

 

Hoping for the best, Rosetta

 

 

[SkyBlue]

On 4/20/2018 at 1:34 PM, Rabe said:

Hi SkyBlue,

Sorry if I wasn't clear...

 I am going from 10mg to a compounded 9.5mg so as to go slowly d/t what happened in Dec.  It is just concerning that one compounding pharmacist said it can't be crushed because of the chemicals in it and another found no problems in doing so...in the same compounding pharmacy!  

 

Hi Rabe, 

No need for apology — I just wanted to make sure I’m understanding correctly.

So it sounds like you are going from 10 to a compounded 9.5, and are feeling apprehensive about doing so because you’ve gotten conflicting information from the compounding pharmacy.

 

It’s certainly understandable to have some anxiety about this, especially with the conflicting information! 

 

I don’t think you’re “crazy” at all to feel anxious about this, or about the pharmacy and this entire situation. I worry more about the people out there who simply take drug after drug and trust 100% everything that the doctors say, no questions asked, no self-advocating. 

 

WD does complicate our trust in doctors, pharmacists, etc. and it’s something each of us has to navigate the best we know how. I know that might not make it any easier, but please know that a lot of us are in the same boat. 

 

If it helps — I don’t think the pharmacy would let you walk out the door with a compounded prescription if it hadn’t been compounded correctly, or shouldn’t have been compounded in the first place, you know? 

 

Trust your own experience, go as slow as feels right for you; you have rights and choices and this is about you and your well-being. 

Please let us know how you’re doing. 

[Rabe]

Thank you so much for your thoughts!  I simply trust nothing because what brought me to where I am was one dr error after another after another.  I left a message with the pharmacy but they did not call back today.  I should be grateful to have someone that would compound, but it is disconcerting when they work at the same place and one says absolutely not and the other says sure...no reason not to compound it.  And that attempted taper of such a minute crumb from the Viibryd in Dec is so fresh in my mind!  For now I am going to just do nothing and wait until I feel more settled I guess.  Thanks again SB.  I truly appreciate it.  Take care! 

[Rosetta]

Hi Rabe, Hang in there.  I know this is difficult and scary.  Take care, Rosetta

[Rabe]

Thank you SkyBlue and Rosetta!  I did get the courage to start the taper Friday....it seems to affect the CLonazepam as well...everything does it seems...but I am grateful to have gotten to today in one piece!  I also thank you for sharing that you have so many fears as well Rosetta.  I didn't;t used to be this way but I am afraid of everything it seems...and certainly anything new or different.  On days where I have no commitments or anything I do better because otherwise I am worrying non stop about will I be able to do that or get there etc.  It is so exhausting and I just cannot turn it off except for the few hours I sleep...so look forward to those.  Thank you both again!!

[Rabe]

Thank you brassmonkey....that makes SO much sense because it all happened.  Cannot understand why the doctors don't seem to know any of this...but grateful that people here do.  I am very grateful for you thoughts.  I did get 30 of the compounded 9.5mg Viibryd but was thinking if this goes ok I would drop another 5% in two weeks...but just as you said, my rapid taper by the doctor in September has left 8 months of not tapering.  We would have been further ahead or just as far ahead had it not been done.  Thank you for that insight.  I am grateful!

[wantrelief]

Congratulations on starting your taper, Rabe.  I understand your fears about tapering, you are not alone.  I hope the cut you made goes smoothly.  

[Rabe]

Thank you so much want relief for your thoughts.  So far not too harsh...anyting is improvement from Dec!!  Thanks again!!! Take care!

[wantrelief]

That is great that it is going well, Rabe....what a relief!

[Carmie]

On 4/30/2018 at 2:15 PM, Rabe said:

Thank you SkyBlue and Rosetta!  I did get the courage to start the taper Friday....it seems to affect the CLonazepam as well...everything does it seems...but I am grateful to have gotten to today in one piece!  I also thank you for sharing that you have so many fears as well Rosetta.  I didn't;t used to be this way but I am afraid of everything it seems...and certainly anything new or different.  On days where I have no commitments or anything I do better because otherwise I am worrying non stop about will I be able to do that or get there etc.  It is so exhausting and I just cannot turn it off except for the few hours I sleep...so look forward to those.  Thank you both again!!

 

Hi Rabe, 

 I can totally relate to you. Everything seems overwhelming, doesn’t it? I’m sorry you struggled to switch off. 

 

Im organising a party for a friend this weekend but I don’t think I’ll do anything this big again as when you’re going through withdrawals any extra stress is not good. I love organising gatherings but I think I’ll do smaller ones from now on. I’m looking forward to this event but it will also be a sigh of relief once it’s all done. I can chill again. 

 

Yes, like you said commitments can be overwhelming. Probably best to keep them at a minimum during withdrawals but being balanced n still going out n about n doing things with friends.

 

Here’s to somehow keeping our balance in this process.

 

Sending hugs 

[SkyBlue]

On 4/29/2018 at 11:15 PM, Rabe said:

 I did get the courage to start the taper Friday....it seems to affect the CLonazepam as well...everything does it seems...but I am grateful to have gotten to today in one piece!  On days where I have no commitments or anything I do better 

 

Hi Rabe,

Congratulations on starting the taper. That's excellent!

 

If possible, keep daily notes on paper re: symptoms/progress. It can help determine patterns as well as celebrate improvements, large and small. 

 

Keep letting us know how you're doing. : ) 

[Rabe]

Thank you SkyBlue!  Was scary but a start at something.  I am keeping a journal.  Thank you again!

[Rabe]

Thank you WR,   Today was bit more challenging but that's ok.  Still better than Dec!  Im grateful.  Just hope am tapering the right one!!

[wantrelief]

1 hour ago, Rabe said:

Thank you WR,   Today was bit more challenging but that's ok.  Still better than Dec!  Im grateful.  Just hope am tapering the right one!!

Sorry to hear today was a bit more challenging.  But good to hear that is was ok in the end and better than you have experienced in the past.  You are doing great, Rabe!

[Rosetta]

On your benzo thread you asked what causes sleep paralysis.  I don't know what might cause it for someone who never took brain altering drugs.  I assume it's often caused by drugs.  I had it for the first time after stopping Fiorinal, a barbiturate.  I had insomnia back then, too.  They gave me Ambien.  Then they tried Paxil.  Paxil caused a serious reaction.  Now, I think I was suffering WD from Fiorinal and that's why I had insomnia (and a bad reaction to Paxil?) I don't remember when in relation to the Paxil I had sleep paralysis -- before, after?  No idea.  It can be scary until you know that it will go away.

 

You said something else on the benzo thread, but I can't remember what.  I'm sorry you are struggling.  I'm glad you can the split the Paxil dose.  Maybe that will help.  It seems strange to have ok mornings and then the day gets worse because I have the exact opposite.  So, I'm expecting the Paxil split to help you.

 

Peace, Rosetta

[Rabe]

I did ask about the paralysis..thanks Rosetta.  Im not on Paxil though...;) How is your day????

 

[Rosetta]

Ah, I was reading Hazel's thread before yours!!  She's splitting her dose.

 

You write the kindest things on my thread.  Thank you!!  

 

Ah, the days when there are no commitments!  I have such terrible anticipation anxiety.  I really need every day to be a no commitment day!  

 

How is your Viibryd taper going now?  I wish you the best.  I'm sorry it seems to be affecting the Clonazapam.  Is it any better?  Weekends are harder for me.  

 

Rosetta

 

 

[Rabe]

I know....commitments of any kind bring on my anticipatory what ifs to the Nth degree as well! UGH!!!  I do much better without commitments and just kind of flowing...have been getting to the 'y' and some shopping (fun kind) and haircut etc.  Minute my daughter asks me to come over or watch Evie or do anything I just go in a spiral.  She wants her mom back...and says and does things out of that fear and frustration that are hard to hear from her...but I understand.  We had such a wonderful relationship and I feel it is crumbling.  I have to back up and create some space so that I can be ok while trying to be there for her in some capacity.  We didn't choose this...is what it is...if are unable to love me this way I understand...doesnt change my love for her...just don't do well with the lashings sometimes. 

[Rabe]

The Viibryd taper has been ok so far...just upset stomach mostly maybe cause pill is crushed?  Don't know.  Grateful!  Would like to get Clonazepam to a does I can use pills with as the compounded things are expensive, but Shep said there is a liquid you can but...didnt know that.  It does affect the Clonazepam in not good way...my ears are playing a song right now.  Oh well...thats ok too.  You sound good Rosetta...Im glad.  

Why are weekends harder?

[Rabe]

Thank you for asking re taper! 

[Rosetta]

I'm sorry about your daughter.  That's very tough.  I wish she could understand.  Hugs.

 

Weekends are harder because there is no school. 

[Carmie]

Hi Rabe, 

 

I saw you were asking Hazel about FasterEFT. 

 

There are heaps of videos videos on YouTube, though I have a friend who is a practitioner as well.

 

It has helped me a lot n Hazel is finding it beneficial too now. There are hundreds of FasterEFT videos on YouTube. The one looking at the basics is  number 427 Looking At The FasterEFT basic recipe.

 

It’s helped me soooo much with a lot of things. I’ve been really slack with it lately though and am procrastinating but want to start doing it again too. 

 

Wishing you you all the best in your recovery Rabe and sending you lots of hugs🤗🤗

 

 

[Rosetta]

Rabe,

 

I keep trying to think of something to say to you about your daughter.  Your messages on my thread are so lovely to receive, and I feel at a loss to say anything to help you.  I saw your post on the benzo forum, and I realize that you are struggling with side effects and various issues that I don't have.  I see that there is no way you can be out and about or doing anything strenuous without making your condition worse.  I feel that I'm also unable to risk stress, unable to be the mom I want to be, and it's very difficult for me to accept.  However, it's important that we are kind to ourselves.  That is so important because adding guilt and shame to the emotion we have at present doesn't help and it's not fair to us.  We are injured and recovering just as anyone who had a traumatic head injury or a car accident.  Our children can't accept that, of course, but it's true, and it can't be changed in the near future.  We have to accept it and be kind to ourselves.  I try to push the guilt and shame away and tell myself what I might tell a friend.  Maybe there's a silver lining, but even if there isn't this is reality in here and now.  Do what you can risk doing and then rest, Rabe.  She's a grown up, and she needs to be kind to you now when you need that.  If she can't, you have to accept that, but still protect yourself so that you can get well faster.  She's going to need you much more when the child is older, and you need to be well then.  Tell your daughter that.

 

Peace, Rosetta

[Rabe]

Im teary Rosetta!  Thank you so much for taking the time I know it takes to write something like that!  I can't tell you how much it means to me!  I am going to copy and paste it and make a copy and keep it at my bedside as a reminder.  I think I have felt better because I have not been pushing, have been getting some exercise, not skipping meals to go over to my daughters, have not been doing trauma work for almost two weeks, same diet everyday (except I took out dairy, wheat and bananas of all things and reflux has been better), not going out for long in the heat, not pushing when I am already so stressed.  But today she asked again if I could babysit...this time when she starts her new job...Im not comfortable with that Rosetta...I just do not trust my system or my mind to that point yet....it is FOR them that I say no, as hard as it is.   Much kick back and much shame and guilt about the possibility of not going over for birthday/mothers day celebration this weekend with her husbands entire family (big Italian family :)) and with my ex husband and his wife who will be flying in.  It is overwhelming thinking about it! 

It breaks my heart to hear what she says...their father was not kind...I finally had the courage to be a single mom and raised my 3 alone from when my youngest was 7.  We forged such a wonderful bond...between all of us.  And the last 2 years have shattered that and it breaks my heart...not with my youngest who has a system similar to mine...it is my daughter who is so verbally unkind.  My oldest son used to be that way but has gotten better...we don't talk a lot but when we do it is ok.  It is so hard to feel so alone and sad to realize how much I have lost as I try to navigate this journey.  

I'm sorry...I am going to stop...so much sadness....thank you again so so much Rosetta.  Blessings and love to you and your family!

Becky 

[Altostrata]

Rabe, my guess is your doctor needs to check on a possible adverse amiloride-clonazepam interaction, see

 

 https://www.drugs.com/interactions-check.php?drug_list=154-0,703-0

 

Quote

 

Interactions between your drugs

Moderate

amiloride clonazepam

Applies to: amiloride, clonazepam

AMILoride and clonazePAM may have additive effects in lowering your blood pressure. You may experience headache, dizziness, lightheadedness, fainting, and/or changes in pulse or heart rate. These side effects are most likely to be seen at the beginning of treatment, following a dose increase, or when treatment is restarted after an interruption. Let your doctor know if you develop these symptoms and they do not go away after a few days or they become troublesome. Avoid driving or operating hazardous machinery until you know how the medications affect you, and use caution when getting up from a sitting or lying position. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

 

 

Note that this can seem like POTS. If I were you, I might try a lower dose of amiloride rather than clonazepam, which is more difficult to taper. However, you have to reduce amiloride gradually or you may have a blood pressure rebound effect.

[Rabe]

Thank you so much! Ive asked the Dr about the Amiloride many times...no thoughts except to just stop it if I want and deal with K+ issues.  Frustrating when doctors cannot/will not think outside the box....wish had dollar for every referral to behavioral health!  Asked about a lower dose initially...can ask again.  Have thought about taking it every two days repeatedly rather than TIW and a 2 day weekend....but not sure will help as has short half life.  Can try splitting the half pill again and see what that does..take a quarter daily rather than half TIW.  

In any case thank you again Altostrata...I am grateful!  And thank you re tapering it!  I asked about that too and they said no can just stop!!

[Rabe]

Altostrata, was REAlly interesting to read the symptoms part...thank you again.  I know its not all the Amiloride but don't need it making things worse!!

Your blood usually flows at a steady rate, whether you're sitting, standing, lying down, or hanging upside-down from a tree branch in the backyard. But if that rate changes when you change positions, that’s a condition called orthostatic intolerance, or OI.

It can make you feel dizzy, lightheaded, or faint, especially when you stand up after lying down.

Postural orthostatic tachycardia syndrome (POTS) is a disorder that has OI as its most common symptom. When you have POTS, most of your blood stays in the lower part of your body when you stand up. This makes your heart beat faster to try to get blood to your brain. As that happens, your blood pressure is likely to drop. 

Symptoms

When your heart has to work that hard and your blood pressure falls, that can throw other body functions off balance. You might:

Feel dizzy or faint

Have blurry vision

Feel nauseous or shaky

Throw up

Sweat a lot

Have brain fog

Feeling extremely tired is a symptom, too. Easy tasks can make you feel like you’ve just run a long race or are coming down with the flu. Other symptoms can include:

Chest pain

Feeling hot or cold

Feeling anxious, nervous, or jittery

Headaches and neck pain

Insomnia

Unusual color in hands and feet

Diarrhea or constipation

 

[Altostrata]

LOL, we know all about POTS here! Low blood pressure can cause the same symptoms. The clonazepam adds to the effect of the amiloride, meaning you need less amiloride to achieve lower blood pressure. Any doctor should be able to understand that.

 

You can split the amiloride tablets; in the UK, it's commonly prescribed that way:
 

Quote

 

Hypertension

Usually half 'Amiloride' tablet (2.5mg) given once a day together with the usual antihypertensive dosage of the thiazide concurrently employed. If necessary, increase to 5mg (one 'Amiloride' tablet) given once a day or in divided doses.

 

 

The Mylan version even has a score across the tablet, to show it can be split.

 

You can get a lower dose of amiloride compounded in capsules, as well.

 

19 hours ago, Rabe said:

If anyone has any thoughts on how to take care of my GI system while taking the compounded medications I would so appreciate it!  My system went off with fast taper with liquid compounded clonazepam in the hospital, improved some, compounded clonazepam hasn't been to bad but the compounded Viibryd is a real issue.  Looked back and not too long after starting it I was back to Tums and way increased reflux and GI symptoms, to point of endoscopy which would rather not have.  Thanks!

 

There may be an additive in the compounded liquid to which you're reacting. Please ask the pharmacy what they put in it.

 

Could be that liquid is not going to work for you, the compounding pharmacy can make capsules to an exact dosage. Those might be better.

 

If the expense is too great, with the scale, you can weigh your tablet fragments or powder and put them in a capsule if you wish.

 

Please be aware that one of the side effects of benzos is depression.

 

2 hours ago, Rabe said:

Can I move all meds by an hour today or one at time?  Not sure what the meant

 

Please clarify: What times of day are you taking each drug, and at what dosage?

 

It could be that moving the amiloride and clonazepam apart in your schedule or taking the amulsipride in divided doses will reduce the adverse effects you're getting from the combination.

[Rabe]

Hi Altostrata,

The Amiloride's being given for K+ not BP...keeps my kidney tubules from secreting K.  BP as low as 80/40 over years...now wonder if that was Clonazepam too. Who knows.  So may be some of it...but has been holding...I'll start checking it at home when feeling that way.  Have wondered if high 4.5mg dose of Clonazepam when it was doubled caused the kidney problems...things were not right after was doubled it to 4.5mg.

 

Both meds are compounded in capsules with rice flour now...Clonazepam seems ok on stomach but not Viibryd...but it upset stomach from start.  Viibryd not too bad cost cause I get tablets from Dr.  Conazepam is $170 a month for the ,2 and .7 capsules.  If I bought the tablets I wonder if it would be cheaper?  Ill have to ask...didnt think bout that.  Just called them and the liquid is $100 cheaper.  May try it in different oil without the silica(?) gel for the .2 dose and see what happens.  But I think it's more the clonazepam not being enclosed.  GI issues started after Clonazepam years ago as well.  Dr. took pics of stomach with these small round red areas and I remember thinking when I looked that they were about the size of a CLonaxepam tablet.  Could get a scale but I get was getting so crazy cutting pills etc that not sure is good for me to go back to that...OCD arrives at my door and moves in!

 

Was taking Amiloride 2.5mg in afternoon and moved it back to morning because seemed worse in afternoon. ..so that is at 1030 MWF

Viibryd 9.5mg at 1230, Clonazepam around 6pm, Premarin 3mg about 9pm and Clonazepam .7mg at 1230AM...

 

I need more sleep...but by time take CLonazepam am so wide awake, but in AM am so tired and never get going until 3 or so. ick!

Thank you Altostrata!!!!

 

 

 

 

 

[Altostrata]

If you have to take amiloride for hyperkalemia, you must speak to your doctor about the drug-drug interaction. If your doctor cannot pay attention to this and your blood pressure issues on this combination of drugs, you need a new doctor.

 

You may be able to lessen the drug-drug interaction by taking amiloride twice a day, but as far apart from the clonazepam as you can make it.

 

Other than that, I don't think I can help you with this. My guess is you're taking too much amiloride with the clonazepam, or too much clonazepam with the amiloride, but you can't reduce the clonazepam any faster. So that leaves the amiloride.

 

I'm not a kidney or blood pressure specialist, I have to leave it to your doctors to figure this out.

[Rabe]

Thank you very much Altostrata...I truly appreciate your help.  I will make an appt and talk to the doctor.  Right now I have the Amiloride ao hours after night Clonazepam and 7 hours or so before eve dose.  

 

This is why I have been thinking maybe decrease the CLonazepam some first....horse a piece I suppose hah? 

 

Can I move all the meds up an hour at one time Alto?  Would that cause problems?  Would like to try to get to bed earlier.  Used to but then was moving meds to later to feel better.  Thank you again!!!!

[Rabe]

It is so frustrating...been trying to talk to the doctors from the start.  Just shaking my head.

Thank you again or your thoughts and wisdom!!!!

[Shep]

7 hours ago, Rabe said:

Can I move all the meds up an hour at one time Alto?  Would that cause problems?  Would like to try to get to bed earlier.  Used to but then was moving meds to later to feel better.

 

On 5/9/2018 at 1:26 PM, Rabe said:

And I feel taking the CLonazepam doses so close to each other maybe is a pile on....maybe its why I feel better later?

 

 I'm combining these two quotes.  Question - Do you think that taking the clonazepam in one dose at night may help you feel better and also, help with sleep?

 

If so, you may want to move the midnight dose to 11 pm and the 6 pm dose to 7 pm. Keep inching both drugs an hour a day until they meet up at the time you wish to dose each night. 

 

As I mentioned earlier, you don't seem to have interdose withdrawal, so taking the full dose at night may help (especially since you report the close proximity of the doses - aka the "pile on" - as helping you feel better). Let me know your thoughts on this.

 

 

[Rabe]

Altostrata,

the other drug he mentioned to my daughter at work one day...not to me...was Propanolol.  SO I am going to look that up...if you have any thoughts on that please let me know.  Thank you so much!