Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rosetta]

Thinking of you.

[Carmie]

Hi Rabe, 

 

Hope you’ve been able to get a few more short walks in. 

 

Sending hugs💚

[Rabe]

@Rosetta @wantrelief @Carmie Wanted too thank you for your thoughts ad kindness...means more than I can say!  

Woke some better today so drove to my daughters and for a few hours we had such a lovely time....until the post viibryd rev kicks in.  But I am grateful.  Had something to eat when got back and took the Clonazepam...am hoping that may not be as much of an issue as is has been...yesterday I was so sick a couple hours after taking it.  Always makes my heart palpitate after taking but yesterday was really awful.  Seems I dont know where Im going or what Im doing....hold?  Taper?  

Wanted to tell all of you that I am thinking about you and hold you in my heart!💜

[Rabe]

@brassmonkey can you dissolve a 10mg viibryd capsule in 10ml water with the 32/1oo solubility rate?

[brassmonkey]

No. you would need to use 33mL of water.  You would be using 1/3 of the viibryd so you would use 1/3 of the water.

[Rabe]

@brassmonkeyI just saw my psych doctor who asked what I think would happen if I went to a hospital and under medical supervision just stopped the medications.  I had told him things were paradoxical, but finally was eating some better and saw my daughter yesterday.  

He then said I need to move forward...holding is counterproductive.  He wants to get rid of the .2 Clonazepam dose and said to drop to to .1mg.

I am officially terrified of all this and not trusting him at all.  How much of a drop is .1?  

He said I have to 'try'!  I thought you have NO idea what trying has been like last two years.  

Please do you have any suggestions?  Im ordering a scale.

[Rabe]

@brassmonkey I take .2 and .7 of the CLonazepam, and have been holding at 9 of the Viibryd.  He doesnt seem to go along with the notion that the change in capsules when lowering the viibryd could have made a difference.  Its his way or no way....

[brassmonkey]

I really hate these guys, ya know.  Going from .2 to .1 would be a 50% drop. Is there any possibility of finding another doctor?

[Rabe]

Not this fast....I dont know anyone here. I cant drop by 50%!!! I am so terrified and depressed brassmonkey...I dont know what to do!  I  did just order a scale....

What would be your recommended drop?  

[Rabe]

do you take the .1 from the combined clonazepam doses or just that one dose?

[Rabe]

I texted him and he is saying going from .9 to .8 is not a 50% drop..

[Rabe]

@brassmonkey sorry forgot this in the above....

[Rabe]

@brassmonkeyand in 2 weeks ALL my meds will be changing...new .7 Clonaxepam capsules compounded cause those run out, new 9mg viibryd compound capsules cause those run out, and then a new dose of the .2 Clonazepam...capsule or liquid. From what Ive read here thats 3 dose changes at once.

[SkyBlue]

12 minutes ago, Rabe said:

@brassmonkeyand in 2 weeks ALL my meds will be changing...new .7 Clonaxepam capsules compounded cause those run out, new 9mg viibryd compound capsules cause those run out, and then a new dose of the .2 Clonazepam...capsule or liquid. From what Ive read here thats 3 dose changes at once.

 

Hi Rabe,

Brassmonkey is going to be mostly away from the site for a few days. When he checks back in, he'll see your posts.

 

Are any of these changes ones that you have control over? 

You were having them compounded before, right, so I don't see what's changed (is it dosage)?

What did you think of Brass's suggestion to see a new doctor? 

(Oh, it looks like you said you're not able to get a new doctor so fast.)

 

Yes, .9 to .8 is not a 50% drop, but like Brass said, .2 to .1 is.

Edited September 21, 2018 by SkyBlue

[Rabe]

@SkyBlue  Thank you for getting back to me!

Well everything is due for a refill at the same time and he wants to drop the CLonazepam when its due for refill, but everything is due.  Ive been told the capsules can have up to 3% difference and having all refilled at once and then dropping the Clonazepam...is that a problem?

 

Also, the Clonazepam is taken .2 at about 530 or so and the .7 at 1130.  Is it appropriate to drop the .2 by .1 given that?  Is that considered .1 off the entire daily dose?  Im not sure the best way to do this.  I have been holding after the Viibryd drop and capsule changes in May and June and am finally feeling some better and eating better. I just dont want to undo things horribly again.  

 

I did order a scale today because I dont like being told what I have to do and felt VERY afraid when he talked about going in the hospital to have meds stopped as he did the rapid CLonazepam taper last September that started the electrolytes being off etc. 

[SkyBlue]

1 hour ago, Rabe said:

@SkyBlue  Thank you for getting back to me!

Well everything is due for a refill at the same time and he wants to drop the CLonazepam when its due for refill, but everything is due.  Ive been told the capsules can have up to 3% difference and having all refilled at once and then dropping the Clonazepam...is that a problem?

 

Also, the Clonazepam is taken .2 at about 530 or so and the .7 at 1130.  Is it appropriate to drop the .2 by .1 given that?  Is that considered .1 off the entire daily dose?  Im not sure the best way to do this.  

 

I did order a scale today because I dont like being told what I have to do and felt VERY afraid when he talked about going in the hospital to have meds stopped as he did the rapid CLonazepam taper last September that started the electrolytes being off etc. 

 

Hi Rabe, you're very welcome. 

 

I think ordering the scale is a great idea for taking some control of your situation, which is your perfect right. 

 

Ideally, a possible 3% difference would be treated as a "dosage change" in itself (ie, hold after that change), but if it's not possible to hold, and a possible 3% change is the only change, that shouldn't be a problem. 

 

However: Dropping .2 out of .9 is still over 20% and not recommended. 

 

How long do you have until you're needing the refill?

You might want to read our threads on recommended doctors, as well as talking to our doctors. They have some good ideas and information.

 

I probably won't be able to check back tonight, but let us know how you're doing and what you come up with. Wishing you the best of luck.

[Rabe]

Thank you SkyBlue...I see that brass is back on the sight?  

In any case, again, thank you.  I will have the scale in 2 days or so..last time it never appeared...the capsules not until next week.  But I have 2 weeks before he is mandating these changes.

It would be a drop of .1mg of the total .9mg Clonazepam daily dose, 1/2 of the afternoon dose.  I did not do well with the .5mg of 10mg Viibryd drop (5%?) so am concerned about a 10% drop of the Clonazepam.  In addition all the compounded medications will be being refilled and started at the same time and each one has up to a 3% margin of error.  So 3 different new compounded medications, one of them the tapered Clonazepam. My system is just starting to calm...yesterday I had a small window...but today it is all revved up again...his threat about stopping all the medications felt too much right now.  

I have read the information on the doctors and have looked for other doctors versed in WD, but there are none in this area...the hospital I came to two years ago was it...he worked there...and is the one who did the rapid taper last September.

I will have the scale but no pills to taper with...I have a few from a year ago...

He is the medical director of the therapist I see...she is the one who talked about 'ripping off the band aid'...stopping the meds...and about my resisting the tapers...the two big things he said today.  I dont feel safe here anymore.

[Carmie]

Hi Rabe, 

 

Just popping in to say hope all goes well with your new batch of capsules. Are you coping okay? 

 

Sending big hugs🤗🤗🤗

[Rosetta]

Sending you a big hug, Rabe.  

How close are you to St Louis?

Can you ask to see a neurologist?

[Rabe]

@Carmie @Rosetta Thank you so much for thinking of me!  I am grateful!  

Not close to St. Louis.  I asked to see a neurologist last year and my PCP referred me and said he apparently reviewed my record and wanted me to go to behavioral health.  SO much for that.  Frustrating.  Told doctor yesterday I feel like a rat in a maze..seem to be running into lots of walls through all this.  

But grateful for Wed...rested much of today as yesterday was stressful....tried to eat.  Did get a walk in today which was nice though heart goes off.😡 And I dont feel anxious!  Ugh!

Got out some things today to try to start a tree skirt for my son and his wife married last year.  Thinking a project might help.  Would also like to find a needlepoint stocking for Evie for Christmas.  But will see...

Texted the doctor today and he said he would get back to me but never did...nice.  So I dont know where he is at this point.  But I will have the scale soon and I think my PCP who is leaving 😔 would call in tablets for me to weigh...I think.  Just have to find other avenues.

Thank you again guys!!!  💜 

[wantrelief]

Hi Rabe - Thank you for your kind note on my thread.  It is interesting you have experienced nasal congestion as well during this process.  So weird.  If only that was my only symptom (I am sure you feel that way too)!  I am so sorry your doctor is pushing you to taper at a faster rate.  I don't understand why he cares if you go slow.  I really really hope you can find someone else who will support you.  I am thinking about you, Rabe!

[Rabe]

@wantrelief Thank you so much for your thoughts!!  Means so much to me!

Like you I am reacting to meds and also wanting to taper...it is a challenge.  I suspect the doctor thinks that if we just get off them entirely

everything will be ok.  I have tried to explain that this all started bid time after the rapid September taper.  Though I wasnt well after my taper 

at home and the Lexapro reaction it wasnt like this until the rapid CLonazepam taper last Sept.  And the recent Viibryd really shook things up, though

I think, as mods said, the capsule changes didnt help either.  

But had a nice day Wednesday so hanging on to that.  So hoping that someday not many years from now I will be able to babysit my grand daughter and be more mobile and well.  My daughter was saying tonight you were never like this, Mom, you were always taking care of us and working and volunteering etc....glad she remembers that in any case.  

I want you to know I think of you daily and sympathize with your taper.  Hugs!!💜

[Rosetta]

Hi I'm glad to see that you have had a couple of better days!  

 

Can you get a copy of your records?

 

You should be able to file some kind of request to see a real neurologist.  Are you under an HMO?  A neuro reviewing your records is a useless endeavor.  Your doctor would not put in your records that he has harmed you.  There are all sorts of symptoms you could present to the neurologists.   You need him to see that you have dysautonomia. Your doctor has no idea what is important or not important about your symptoms.  He doesn't understand your illness.  I consider the refusal to let you see a neurologist a denial of care.  Depending upon what sort of health plan you have there should be options.  I'm thinking of this from the angle of avoiding a rapid taper.  Some neurologists are aware of dysautonomia being a result of rapid tapers.  Very few, it's true, but it's worth a shot.  Maybe if a neuro explained to your doctor what is happening you could get the slow taper you need.

[Rabe]

@Rosetta Hi Rosetta, thank you for your thoughts.  Yes, Wednesday was nice.  Was a long time coming but I cherished it.  Yesterday and today not so much.  But was a window even if small.

I have requested my records but noone responds.  Which records do you mean?  I actually was just thinking about a lawyer.

I did ask my PCP to see a neurologist but he apparently looked at my record and referred me to behavioral health!  No, I am retired so no insurance which I didnt realize makes such a huge difference.  I could look into it again I guess..could ask my PCP again.  Thank you.  Kind of down tonight...it does get overwhelming,...but my scale arrived.  Hate to think about it but I suspect ie you get used to it it will be ok.  

Take care Rosetta, thank you again. Sleep well.💜

[Carmie]

Hi Rabe, 

 

Just checking in to see how you are. I hope you’ve had some more good days like the Wednesday.

 

Sending hugs🤗

[Rabe]

@Carmie Hi Carmie,

Thank you for checking in.  Hope you are doing ok!  Things are really challenging but is what is.  Think lots is my doctor and therapist not on board here.  Supposed to see therapist tomorrow and would like to cancel.  Dont want to hear a reapeat of what he said.  

Take care, Carmie!  💜

[Rabe]

tripped over a rug last night and slammed my toe on the slate floor...very sore and swollen!  But could not get in to doctor today so will keep icing.  Cant wear shoe and sandals arent working well so just resting which is probably wisest anyway.  Pretty sore...such a deal.  Revved up my system!!🙄

Take care all!💜

[Rosetta]

OH, my.  Your toe.  The most minor thing can razz us, can't it?  I'm sure you hurt.  Yes, ice is best.  And rest.  I'm glad you can rest.

 

On the records, I think you might like to see what the doctor says in them -- all of them.  That's not surprising that they are not producing them.  It's a hassel.  So, it goes to the bottom of the pile.  I mention it because I would be curious to see what the neurologist reviewed.  Maybe you could make a request to the neurologist.  

 

Having a lawyer could help or hurt.  Either way it would cost money.  In a perfect world that worked properly you are a victim of malpractice, but until that is more widely recognized here you are -- needing to avoid alienating the doctor who writes your prescriptions.

 

One way to get the records is to switch doctors.  The office is more likely to produce them to your new doctor who asks for them.  If you did have a knowledgeable neurologist (a big if) he or she might be able to confirm from your records that you are having dysautonomia and then suggest that you have a slow taper.  I wish I could help you set your self up for a good situation for when you have a new doctor.  

 

All my love, R

 

 

[wantrelief]

Oh Rabe, I am so sorry about your toe and that the injury then revved up your system.  You are so sweet to leave me such a nice message whilst you are dealing with so much.  I am thinking about you too.

[Carmie]

On 9/27/2018 at 6:55 AM, Rabe said:

@Carmie Hi Carmie,

Thank you for checking in.  Hope you are doing ok!  Things are really challenging but is what is.  Think lots is my doctor and therapist not on board here.  Supposed to see therapist tomorrow and would like to cancel.  Dont want to hear a reapeat of what he said.  

Take care, Carmie!  💜

 

Hi Rabe, 

 

I know, it can be very frustrating that the so called medical experts have no clue whatsoever about withdrawals. They can put us on these meds but then we are left on our own in the fight of our lives. How did you go with the therapist?

 

 

On 9/27/2018 at 6:58 AM, Rabe said:

tripped over a rug last night and slammed my toe on the slate floor...very sore and swollen!  But could not get in to doctor today so will keep icing.  Cant wear shoe and sandals arent working well so just resting which is probably wisest anyway.  Pretty sore...such a deal.  Revved up my system!!🙄

Take care all!💜

 

Im so sorry about your toe. Do you have thongs you can wear on your feet? I don’t know if that’s what they are called where you live as that can have a different meaning in different countries. Maybe they are called flip flops?

 

Every stress we have seems to ramp up our symptoms, doesn’t it? 

 

Take care n I hope your toe heals quickly💚💚

[Rabe]

saw doctor today and she will not take over the meds...and wants me on antibiotic for toe.  bit upended but is what is...going to try ointment first guess...feeling overwhelmed...

[Rosetta]

Thinking of you, Rabe. ((((Rabe))))

[Carmie]

9 hours ago, Rabe said:

saw doctor today and she will not take over the meds...and wants me on antibiotic for toe.  bit upended but is what is...going to try ointment first guess...feeling overwhelmed...

 

Hi Rabe, 

 

I have killed ear infections and other infections by hitting the olive leaf hard. It is antiviral, antifungal n antibacterial, I buy the liquid one. Coconut oil is the same, you can rub coconut oil on your toe as well as swallowing it. 

 

Im not sure if the olive leaf with affect your withdrawals, I have always been fine with it. Anything is better than antibiotics I think though. 

 

Take care💚

 

 

[Rosetta]

How is your toe?  I've been wondering how you are the past couple of days.  Thanks for checking in on me.

[Rabe]

@CarmieThank you Carmie!  I will try the coconut oil.  I have been using Emu Oil which is also supposed to be antibacterial.  I just dont feel can handle an antibiotic but tonight a little fever so will watch it and see.  Ill soak it and try the Coconut oil tonight and eat some as well.  Blessings!💜

 

Iforgot to send this...ugh!

[Rabe]

@Rosetta Thanks for checking in Rosetta.  Toe is some better...have been soaking it daily and applying the emu oil then bandaids and then ice.  If does not get better am going to get it prayed.  Did get out for a bit of a walk today which was nice...short but sweet.  Yesterday was SO anxious...just off the scales!  Tires me out.

I found this and thought it was interesting as I started trying goats milk past couple weeks or so cause of better potassium and more fat:

3) Consider trying camel or goat milk. I haven’t done this myself, and it wouldn’t be cheap, but it might be worth trying to see if it makes a difference. “Camel and goat milks have significantly more bioavailable GABA than cow and human milks and are able to activate GABA receptors. The relationship between GABA and taurine concentrations suggests that whole camel milk may be more efficient to activate GABA receptors than goat milk”

Wonder if that can cause issues.  Interesting in any case.  Seems everything affects the GABA receptors!

 

The doctor finished a letter to add to mine to see if can get some of these compounded meds paid for.  He also ordered the same strength capsules across the board...I think.  Going to recheck tomorrow.  I will have to stabilize on the new batch and then will decide what to do from there.  May try a very small drop in the viibryd to see how goes but will see.  

 

I am struggling with the anxiety so much.  Makes me sad that I am not able to babysit my grand daughter and that everything si such a chore...dentist, haircut, doctor appts, groceries...like going back to such a horrible time of my life that I thought I would not see again...tiring.

 

How are you doing?💜