Rabe: how to taper and adjust Viibryd while on Clonazepam

[Rabe]

@Altostrata Wanted you to know I stopped the milk and coconut water and has made a huge difference in symptoms.  Milk does not go well at all.  Am trying lactose free and that is better..and a potassium supplement.  I do wonder if it did really exacerbate things.  Think you are right.  Things got steadily worse these past nearly 2 years I have been on it and the coco water.  Thank you Alto for your information.  Hope you had a good holiday and I wish you a host of blessings in the new year....you have created such a blessing here for so many!  Bless you Alto!!  💜

[Rabe]

Hi to everyone.  I hope you all had a good Christmas and wish you a happy New Year!!

I stopped my milk and coconut water for the potassium on 12/6, started a potassium supplement, and tapered the Viibryd. Didnt expect my body to react as it did.  Things have settled.  The doctor was going to have me hold if going to deal with the SIBO, but I am not going to start the antibiotic until I get my labs etc done and research all this now that I got through Christmas ok.

As overwhelming as all this is I am grateful to be getting some answers and hope that the new year will lead to a path that will allow me to move forward and heal in some ways.

I have been seeing my therapist regularly and am realizing how very much my traumas have impacted me..my body, my mind, my stress, my reactions and over reactions to life and just about everything in it etc etc.  Its like I finally gave up and have started to trust...I wasn't doing that prior.  I was just so 'stuck' in the freeze of fight, flight, or freeze...hard to believe some of the things I did and didnt do.  But working on forgiveness and moving forward which I am finding to be a challenge.

SO, one step at a time.  Much love to you all.  Will check in. 💜

[wantrelief]

Hi Rabe - It is good to see you here again.....you have been in my thoughts.  I am glad things have settled after all of the recent changes.  It looks like you are making some really good progress on your taper.  You are very courageous figuring out the dietary stuff and dealing with a taper on top of it all.  It also sounds like you are doing important work with your therapist.  Hang in there, my friend.  One step at a time, indeed.  💗WR

[Altostrata]

Very happy you're feeling better, Rabe, with only a few simple changes.

[Rosetta]

Hi, honey.  I hope you are still doing ok.  I would not have guessed that trying to stay hydrated would have been causing her symptoms.  

[Rosetta]

Rabe, 

How are you doing?  Miss you.

Rosetta

[Rosetta]

Rabe, Where are you?  I am very worried.  Please check in?  Thanks. 💜Rosetta

[Rabe]

HI to Everyone...have missed you all and have kept you in my prayers.

I took the xifaxan....Ive totally lost track of months, time, everything...cant remember when I took it?  I think it was May.  I was to take it three x a day for two weeks.

After 10 tablets I was reacting to it so badly that the doctors said to stop it though I would have liked to complete the course.  I was so so sick for quite some time but overall it did help though I dont think the SIBO is gone.  The doctor has given me the option to try Flagyl and I may do that as well.  Ultimately its getting rid of the SIBO but also finding the cause...motility, Sulphur issues, or whatever.  I have gained a bit of weight and have been able to eat some foods but not many.  I had been eating some fruits but with spring the burning mouth and all returned so I had to stop them.   Many of my vitamin levels were low, but that was pre Xifaxan  I have gained some weight but am finding it to be a slow process.  I am still limited as to foods I can eat but find that I dont have the ridiculous cravings that I had before....one being potato chips of all things!!  I have NEVER eaten potato chips regularly in my life much less a bag a day!!  I dont crave them anymore so that must have had something to do with the SIBO as well.  

I started by taking out dairy, nuts, wheat, eggs, and corn.  Just with the removal of those foods in any form it was remarkable how much better I felt.  Fortified oat milk has been ok and a good source of some vitamins and potassium.  I still find sulphur to be an issue and would love to find someone who tests for genetic variants r/t foods.  I am hoping to get the courage to try some vitamins as I know my folate and B12 and Zinc and ? were low and low B12 can cause many of the symptoms I have had r/t both SIBO, tapering, etc.  Just wish B12 and folate came in a form that was liquid, lower dose and no additives.

I have continued my tapering and will soon be starting 6.5mg of the Viibryd.  I find it scary that, for example, I just could not think of the name Viibryd and seem to do that often.  I sometimes think Im getting dementia along with all else.  I would like to get my Clonazepam more equal and better spaced...dont know if that would help things or not but I think about it as I am quite nervous until around 2 or so and then by 7 or 8 I am really undone. 

In the midst of it all life goes on.  My daughter lost a pregnancy in the fall but is pregnant again.  She is 30 weeks and is now in the hospital d/t bleeding and the  placenta previa has not resolved as the baby has grown.  I was there a couple days ago and am grateful to have seen her as hard as everything seems to be these days. I am finding that as the Viibryd is decreased my anxiety really increases as the day goes on and id be fine doing nothing or going nowhere but also know that is not going to help in the long run.  In any case she will be there for 10 days after which decisions will be made as to what to do next depending upon the number of bleeding episodes and the next ultrasound.  

I worry much about my son and grandchildren in NY amidst all that has befallen our nation.  Being even more isolated is so very hard mentally and physically and I yearn for home and happier, healthier times often.  

My hope is that all of you and your families have been and are staying safe,  Brass Monkey I am grateful you got your trips in before the pandemic hit.  I just pray for the world and the people in it.  Love and hugs to you all !!! 💜💝

[wantrelief]

Rabe!  It is so good to hear from you.  It sounds like you've made some good progress on the food front and tapering as well.  I am sorry to hear about your daughter having placenta prevue and needing to be in the hospital.  I am glad you've been able to see her.  Just really relieved you are doing ok and really pleased for you that you've been able to continue your taper.  Thinking about you and your family, WR.

[RusTW]

Rabe good to hear from you. B patient. Also check for possible underlying health issues. I still have candida but it's the cancer that keeps my ph off balance so it thrives

[Rabe]

Hi...I have texted since I finally had access to a computer and am going to get a new one soon...but its not posted.  SO IDK whats up.  Love to all.

[Rabe]

😂 Wellll....just noticed I posted it on my other thread.  Yup!  This mind is working like a well oiled machine for sure!!!  YIKES!!!  SORRY!  UGH!!🤯

[ChessieCat]

1 hour ago, Rabe said:

just noticed I posted it on my other thread.

 

I've moved it and the responses here to your Intro topic. ☺️

[Rabe]

@ChessieCat Thank you SO SO much for moving things for me!  Sorry...space cadet.  Thanks again.  Im grateful!  Hope things are good with you!💜

[Rosetta]

Thinking of you, my dear friend. -R

[Rosetta]

Rabe?  How are you doing?

[manymoretodays]

Hi Rabe,

Yes, any updates.  How are you?

L, P, H, and G,

mmt

[Rabe]

Hi everyone,

I cant remember how to update my information but I started a Viibryd taper bit ago to 5.75.  Slow but steady I guess.  Think if I could get rid of the SIBO lots would be better.  I did find a more holistic doctor who is also a psychiatrist.  Its been very interesting and with her help and suggestions I am some better.

I had genetic testing done which is a real eye opener for sure!  Realizing so much more with that information on board.  Will be seeing her virtually soon with her suggestions given those added pieces to this puzzle. 

I would like to get to 5mg of the Viibryd and then stop and cut a 10mg in half and try to even out the Clonazepam dose a bit more....but maybe thats not smart? IDK.  Somedays I feel tired of it all and would like to just live the rest of my life more completely.  With all my reactions to things my PCP actually said she would not recommend I get any vaccines at this time.  That threw me for a big loop!!  UGH!

My daughter did get to the 34 plus 2 day mark and had her baby boy...Milo.  He had a few healthy issues that were quite concerning but is now a healthy darling almost 3 month old.  I have tried to go over everyday that the weather has been nice because I can see them and be outside the majority of the time and stay safe r/t virus.  But she is back at work and the weather has changes so it seems like life has stopped from what it was.  I had thought about returning home and get a house there but I think I would really miss those little ones.  3 year old Evie said so me the other day...I love you SO much Grammy!  I said I love you more, which is what I always said to my kids and still do, and she said I love you to the moon and back and we had a big hug.  That is the best medicine ever!!  Children are so so delightful!!  I love it!!   

Good to be back on the site!!  Have missed everyone!

💜

[Rabe]

First I wanted to say thank you to everyone here!  I feel so blessed to have found this site and so blessed to have come to know so many people on it who walk this journey with me.

I particularly wanted to thank the administrators and all those who put so much time into guiding those of us who come here so broken and so lost.  How does one ever say enough thank you's to cover the time, dedication, knowledge and experience of it all?  

When my daughter was in the hospital I said that God sends angels...and he did...I just have seen it happen too often along the way in my life not to believe it.  You are all angels and I am so so grateful!  @Altostrata @Shep @brassmonkey @manymoretodaysthank you is and will never be enough but 'thank you' none the less.  Please would you pass this on to all the other moderators/angels?  My mind cant remember everyone..I really did have a mind at one time. 😛

Happy New Year to everyone here.  To the newer people I want to say you are in the right place and you will get through this!!  Blessings and love to everyone and bunches and bunches of gratitude.  I learn something from each and every post and thread I open!💜

[wantrelief]

Thank you for the kind words on my thread.  You should be so proud of all of the progress you've made this year, Rabe! 

[Rosetta]

Happy New Year to a dear soul.  I just know 2021 is going to be a good year for you.  You seem to be functioning so much better, and that should continue.  That you can be invoked with your daughter and granddaughter the way you can now is such a great sign of stabilization!  I’m so happy for you!

 

🌈Rosetta

[manymoretodays]

Good to see an update from you Rabe. 

And it sounds like Love and connection has really helped you a lot!!

Oh, and being needed, and it sounds like you've been a huge help with your daughter and her family.

So happy for you.

On 12/12/2020 at 1:57 PM, Rabe said:

I would like to get to 5mg of the Viibryd and then stop and cut a 10mg in half and try to even out the Clonazepam dose a bit more....but maybe thats not smart? IDK.  Somedays I feel tired of it all and would like to just live the rest of my life more completely.  With all my reactions to things my PCP actually said she would not recommend I get any vaccines at this time.  That threw me for a big loop!!  UGH!

 

Rabe, that's a sound plan.  You remember how to do a 10% taper, based on the previous dosage.  Happy to help with the Vibibryd, when you feel ready to taper again.

And I think that we could get input, when the time comes from the more benzo savy folks than I, with the clonazepam.

 

Oh, it got so complicated with your varying reactions, and then varying compounded dosages and all.   Hoping it will be smoother and possibly simpler, going forward. 

 

And oh no, on the vaccine!  Oh boy, we've been going through a lot with the covid pandemic, globally.  What times these are, and have been.

 

You sound really good.  Warms my heart.

Doing okay here.  The snow is a bit scarce, but I did get up in the mountains to ski!  And me and mine are okay.  Safe.  Healthy.  Moving forward.  🤗❤️

 

L, P, H, and G,

mmt

[bijay]

Hi @Rabe, a belated Happy New Year to you as well, as I just saw your post on January 1.  

 

You had mentioned earlier a problem with burning mouth, which I have too.  It is a terrible problem for me, and I think at this poiint it is at mainly caused by the amitriptyline I am tapering.  My mouth is terribly dry and sore, and my tongue gets sores routinely.  I also have gastritis and SIBO, and with all of this I am underweight.  I was wondering if you have any idea what may be causing burning mouth for you, and if you have found a way to keep it under coontrol.  Thanks in advance!  ❤

[Rabe]

• Hi @bijay.  I am so sorry to hear you too are dealing with stomach problems and SIBO.  Mine got so so bad after a rapid taper of the Clonazepam.  I too have had weight loss etc.  

 

For me I have connected the burning mouth to some foods...especially in the spring and summer.

My therapist's husband and 2 children have oral allergy syndrome which is a cross reaction to pollens and they are not able to eat many fruits and vegetables, especially in warmer months, but do better with some when they are cooked.  I also think it has been perhaps a combination of everything else.  It seems to be better since I am eating some better, taking some vitamins, and just addressing my gut in general with some help from a holistic/psych doctor.  I still get it but not like I used to.  I empathize with you!!  Every morning I brush my teeth and tongue gently and rinse before I do anything else.  I try to drink more warm water and sometimes gargle with salt water.  Have you asked a doctor about it?  I do know just from being a nurse that being low in some vitamins can cause burning and tongue and mouth issues.  Perhaps check with your doctor and have them checked?

Keep me posted.  Looks like your taper is going well!!  So good to hear from you!!  Take care!💜

 

[Rabe]

💜@manymoretodays Hi MMT!  SO glad to hear things are good in your corner of the world!!  The skiing sounds fabulous!!

I actually have been tapering....its on my signature and I just updated it today as I recently dropped again.  Today has been a rough day but Im also very close to 5% drops and perhaps thats a bit much for me?  It was before so we went to 3%.  I may have to return to at least that the further I get down as it seems to affect the Clonazepam affects as well....the further I get from those doses I am worse...or maybe its just the Viibryd...who knows I guess.

I go through good days and when I do I seem to forget what the stretch of bad days are like and vice versa.  Its always disheartening to go into a wave again.

Thank you for your thoughts MMT!!  I appreciate it!  Continue to take care and enjoy the slopes!!

 

[RusTW]

12 hours ago, Rabe said:

• Hi @bijay.  I am so sorry to hear you too are dealing with stomach problems and SIBO.  Mine got so so bad after a rapid taper of the Clonazepam.  I too have had weight loss etc.  

 

For me I have connected the burning mouth to some foods...especially in the spring and summer.

My therapist's husband and 2 children have oral allergy syndrome which is a cross reaction to pollens and they are not able to eat many fruits and vegetables, especially in warmer months, but do better with some when they are cooked.  I also think it has been perhaps a combination of everything else.  It seems to be better since I am eating some better, taking some vitamins, and just addressing my gut in general with some help from a holistic/psych doctor.  I still get it but not like I used to.  I empathize with you!!  Every morning I brush my teeth and tongue gently and rinse before I do anything else.  I try to drink more warm water and sometimes gargle with salt water.  Have you asked a doctor about it?  I do know just from being a nurse that being low in some vitamins can cause burning and tongue and mouth issues.  Perhaps check with your doctor and have them checked?

Keep me posted.  Looks like your taper is going well!!  So good to hear from you!!  Take care!💜

 

PM me very important 

[bijay]

@Rabe It is so nice to hear from you too!

 

Thank you so much for telling me about your experience.  It is great you've seen improvement over time.  I've been through a lot of testing and fortunately have access to Penn in Philadelphia, as we live close by.  Probably the most helpful doctor was an ENT there, who told me how he has seen amitriptyline, even at low doses, causes dry mouth and can cause cumulative damage to tissues.   I also take a small dose of Klonopin and he said it can contribute to this effect as well.  But he gave me a lot of hope that getting off this stuff will at least help.  Just wish that I would see some improvement as I taper, but it may be the sort of thing where I have to get off it completely.

 

Over time I have become incredibly sensitive to salt.  A salt water rinse would not be an option for me.  Last year I used a saline rinse for nasal congestion and my nose was extremely sore afterwards.  Before withdrawal it was not a problem.  Crazy!

 

Have you considered if high histamine foods are a possible trigger for you?  It's been mentioned in the literature and here on the forum as well.  I went to a holistic nutritionist who told me that antihistamines (like amitriptyline) can interfere with the body's ability to produce DAO, which processes histamine in the gut.  I wonder if SIBO could also be a factor in histamine sensitivity.

 

Hopefully one of these days we will have this figured out.  I'll keep you posted, as I plan to also look at some other non-drug therapies.  But my first priority is tapering right now, and I'll have to see how far that takes me.

 

Stay safe and stay well.  Sending you a big virtual hug!   

[Rosetta]

Hi, Rabe.  Can’t write much right now, but I’m thinking of you.

Rosetta

[Carmie]

Hi Rabe, 

 

Just popping around to see how you’ve been going for the last year🧡

[manymoretodays]

On 1/14/2021 at 8:48 PM, Rabe said:

I actually have been tapering....its on my signature and I just updated it today as I recently dropped again.  Today has been a rough day but Im also very close to 5% drops and perhaps thats a bit much for me?  It was before so we went to 3%.  I may have to return to at least that the further I get down as it seems to affect the Clonazepam affects as well....the further I get from those doses I am worse...or maybe its just the Viibryd...who knows I guess.

I go through good days and when I do I seem to forget what the stretch of bad days are like and vice versa.  Its always disheartening to go into a wave again.

 

Perfectly okay Rabe to go at 5% or less, with the Vibryd.  And some great Windows too......I mean if you are getting Windows where you forget completely the Waves........very nice, great!  I'm thinking that, or it sounds like you are far less anxious/fearful than you used to be.  And sometimes, just getting away, and/or keeping a healthier balance of how much you think about WD, and spend time on, sometimes even being here too much at some points, can be too much.  I know I used to just hang out, signed in and everything, as there was a comfort to it, when I was still so acute in WD.  I'd go off the beaten path a lot though, to poetry, and music, and then reading old posts in Finding Meaning, and all over the place.  That helped.  No one in my ground circle, really "got It" but, I mean I finally just ceded to let them just think what they wanted, as to what was giving me trouble.

 

This is good though, your report.  And I like the idea of looking towards getting to 5 mg, with the Vibryd.  And meantime, living your life more, like you have been of late.

 

-7/27 Viibryd 8.5, 8/29 8.25, 10/24 8.0, 12/19 7.75, Feb '20 7.50, 3/20 7.25, 5/20 7.0, 6/20 6.75, 7/20 6.5, 8/20 6.25, 10/2 20 6.0, 11/25'20 5.75, 12/5 5.5

-12/12/20 V 5.75mg 1015AM, K+.5mg and vit D 4,000IU 130, 415 Clonazepam .2mg, 815 Premarin .3mg, 1015 Clonaz .9mg,

  1115 Castor Oil 650mg(2) 1230 Carafate 1/2GM HS, Methylated B Vit Complex 1/week, fish oil with D 3t/day

 

So the last taper of Viibryd was to 5.5 mg, on December 5th.

Then what is happening in that next line??

What your total dose of Clonazepam each day?

And then just, in a response, tell me the breakdown, of when you take your medications and supplements.

Do the old time on the left, and then on the right, drugs by name and dose.  That will be clearer.

 

Oh Rabe, so nice to have you back around, with such good updates and reports.  And like I say, huge on the improvement of fears/anxieties.  Huge!  You are going Boldly now into your future.  I love it!

 

L, P, H, and G,

mmt

[Rabe]

@bijayHi Vijay,

SO glad to hear you have found some answers and help with you mouth issues.  There seems to be so much with all this tapering!  

Yes, I have histamine issues and sulphur issues all related to the SIBO I think, but if it all is related to that then I have had it for a long long time...since little, cause I have had many of these food issues that long.  Have had extreme sulfa med reactions which I guess can translate to problems with sulphur in food.  Wish I had more answers to lots of things and could see a more concrete road ahead that seems to have a clear path.  But that just has not been how it is with the tapering and the SIBO, etc.  At least we are not alone!

I will be thinking about you.  You take care as well and virtual hugs right back at you!

[Rabe]

@bijaySorry for the typo of V for the B....just saw it.🙄

[Rabe]

@wantrelief Hi WR....just thinking about you and wondering how things are going for you?

I know things have been and can be so challenging as we taper at times and I am just hoping that you have had some plateaus and windows recently?  YOU are the one who has made such great progress, WR!  You just keep steadily moving down in your dose!  My heart and thoughts are with you dear friend!  Do take care in these challenging times in our world!!  💜

[Rabe]

@manymoretodays  Hi MMT!  Thank you so much for checking in !  Means a lot to me!

Yes...getting out more, seeing my grandchildren more, even babysitting a bit has given me a bit of confidence and much joy.  They are so so beautiful and I find my kids and my grandchildren are my reasons to get out of bed in the mornings.  The days are not easy and I still have very very down days when I just want to quit.  Morning are often a challenge...cortisol spikes I think.  And then around 1 ish the anxiety gets quite bad but settles around 3 or so....thinking probably the Viibryd kicks in about that time. Grateful for the relief cause I find I get irritable at times too.

 

I am finding the Clonazepam to just not be sitting so well as I go down on the Viibryd.  I find that it seems to really rip up my stomach more than ever and after the evening dose of .7mg I will wake up later with my TV still on and light still on etc....its like I have just blacked out/zonked out with no forewarning.  Im finding that to be a bit scary.  Sometimes in the mornings I feel hung over and others it is better.  But hard to get going before about 10AM.  

I updated my signature today...that was an error...my last drop was 1/9/21 to 5.5 and the next will be 2/23 to 5.25.  One more and I can cut a Viibryd 10 in half and perhaps work on evening out the Clonazepam doses?  You and @Shep have any thoughts on that?  Not sure AT ALL how to go about that but am feeling it would be a good thing?  Then move back to the Viibryd?  IDK.  I wanted to ask you all about it.  The passing out at night is not right is it?  And also sometimes I feel it makes me more anxious initially.  Just odd stuff.

 

I  redid my signature again. I dont take the K+ anymore...its been pretty stable with more high potassium foods Im able to eat.  Do need to address the gut.  Not sure how to do that.  Not feeling good about the vaccine with reacting to so much with this immune system/nervous system.  In the best of times I reacted to lots but this is ridiculous!

 

Yes, the fear is less really paralyzing like it was.  I simply was frozen.  I apologize for that and thank you for hanging with me.  I honestly could not control it.  Very fearful of any advice from anyone I think because all the doctors have advised me on has only taken me to a worse place and my trust in myself and everything was at zero.

 

1030 - 5.5mg of Viibryd tomorrow, then will be 5.25mg, food and vitamin D 2 drops

300 - food with vit D 2 drops

430 - Clonazepam .2mg

800 - food and 830 Premarin .3mg

1030 - Clonazepam .7mg

1100 - 3t fish oil

1130 - 4 - 650mg castor gel caps

1230 - .5GM Crafted before bed

magnesium is as needed and am going to try some zinc soon

 

Thanks again MMT.  Hope things are going well for you!!  Take care!!💜

 

1/9/21 5.5, 2/23 5.25

[wantrelief]

Hello dear Rabe,

 

Thank you so much for your sweet message on my thread.  You are such a kind person and always so supportive and encouraging.  I will write an update soon but overall things are going much better than before!

 

You are doing so well moving a long on your taper.  I don't know about you but I find it pretty nerve wracking making these cuts not knowing how it is going to go....but you are doing it!

 

I am so glad you've got your lovely family to help you get through these times....how wonderful you've been able to spend time together.

 

Wishing you the very best,

WR 💖

[Rabe]

Started taper from 5.5mg of Viibryd to 5.25 ....am 2 days into it and have had a really bad evening, starting around 5ish I guess.  The ear ringing is always a telltale sign that things are

not good...all seems to go together.  Dont know if is the taper, trying new foods and vitamins,

or a wave or could be all.  Doesnt really matter...just is what it is.  Did get a walk in which was a good thing.  Have to keep moving.  Hoping to see my grandchildren tomorrow but if not hoping for one of the next 4 days.  As always, It is always really really hard to fall back after feeling human for a bit.  But Im grateful for those breaks.  Thinking of everyone here walking along the same path as I.  I send you thoughts and hugs and prayers.  💜