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savinggrace

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  • Moderator Emeritus

Hey Grace:

 

 

I did about 12 sessions of kinesiology and even took a weekend class in it.  It didn't really work for me.  The kinesiologist wanted to help me in the worst way, but honestly, with everything, traditional and alternative that I have tried over the years, the drugs get in the way of it working inevitably. (Reiki, healing touch, one on one yoga, massage, tai chi, acupuncture, hypnosis....you name it, I tried it) not to mention the 8 (yes 8) sessions I had of ECT 13 years ago that help 80% of people, but only served to traumatize me. You are not supposed to remember anything from ECT and I remember everything (smells, surroundings, procedure) except the actual seizure part of course.  My theory that the drugs interfere w/ everything, and unless/until I get them out of my body, nothing is really going to work, other than living a good, clean, and as healthy as possible lifestyle.

 

 

You misunderstand me.  Are you telling me that your "intuition doesn't work?"

 

I'm not asking you to "do" kinesiology like a treatment or anything, I am giving you tools to ask your body what the answer is.  This is not about "work" or "not work."  It's about asking your body what your body wants. 

 

It's up to you to be still and listen. 

 

Rhis's Start Small Listen to Body Taper Plan

 

also I just read this article from aboriginal wisdom, about dadirri or deep listening:

http://nextwave.org.au/wp-content/uploads/Dadirri-Inner-Deep-Listening-M-R-Ungunmerr-Bauman-Refl.pdf

 

It is a practice, and it will be difficult from under a drug fog - I recognize that.  But all skills are developed, very few are natural, innate.  I am not naturally an intuitive person.  I want to chew on thoughts like a bone, ruminate, analyse.  But that's what got me into my mess, eh?  Maybe the way out is something different.

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Hi Chessie Cat and Scallywag,

 

Thanks for your responses to my query in downton girl's thread.  I was trying to clarify a statement about accepting symptoms and I think you both clarified things nicely.

 

Yes, CC, I believe acceptance is key, and I work at that daily.  Of course, it is much easier on the good days than the bad.  Even the good days or horrendously abnormal for most, but I accept them and am actually grateful for them.  Lack of acceptance keeps one stuck in one's head with constant, torturous questions all of the time.

 

Scallywag, I do believe you re-stated it nicely...you were not saying we should accept an indefinite amount of suffering to get off the drugs, but that some symptoms are inevitable and that dwelling on them will only keep us stuck.  The first statement you made had me questioning my courage, strength, and resolve...the second statement seems to fit where I have been for a long time.  As I wrote to someone today, it may take me as long to taper off as I have been on these drugs, but I am not going to lie in bed doing it.  I am going to hold on to the most important parts of life (people) even with severe limitations, and I will forge forward somehow, in some way, until the day I die!  If only.. ... "if only's" really don't matter much, do they?

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

Please don't question your courage, strength or resolve because of what I or any other person on the internet says. EVER. 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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Isn't that a risk we take, being part of a community like this? It's human nature to compare ourselves to others, even if cognitively we know we shouldn't. I try VERY HARD to seek opinions and then be okay with my decisions knowing that I have made the best one at the time for me.

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

When posting on a forum, we open ourselves up to feedback.  We don't have to interpret or use that feedback to invalidate ourselves.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

You're absolutely right. I am a work in progress...

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

Grace, anyone who starts the process of tapering a psych drug has courage, whether they finally discontinue all their drugs or not. Facing that unknown and fear takes courage. Continuing after the first symptom takes strength AND resolve.  Never doubt that you possess all three.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment
  • Moderator Emeritus

Hey Grace, I was reading on GiaK's blog, BeyondMeds (she was a mod here, so it is kind of a Sister-Site, and rich with hope and struggle and positive and uplifting suggestions), and saw this intuitive method, and thought of you.

 

It may not apply, but I thought of you:

 

https://beyondmeds.com/2015/01/12/somatic-wisdom/

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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Thanks, Jan Carol.  I am in the middle of reading as much of Gia's work as I can.  She is one amazing person.  I don't know if I am upset, or I am glad, that she made me aware of histamine intolerance, but she did, and I am, and now I am factoring it into my diet choices as I strongly suspect that I am. I have many reasons to believe so.  I am seeing a traditional allergist tomorrow; I expect to be laughed out of the office when I bring up histamine intolerance, but I will anyway.  I try to leave one little seed of forward thinking whenever I see a Western medicine doctor, painful though it is.  I am going through the motions with this appt....my GI guy wanted me to see him, and I have to appear compliant, so I will go, not expecting anything but a big co-pay!

 

I read through this technique...similar to many other relaxation exercises with some nuances that may, perhaps, help me decompress after a long day of coping.  I will read it again soon, and give it a serious go!

 

Thank you again.  No acupuncture for 2 months hasn't seemed to make any difference, BTW.  

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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Hi Grace. How did the visit with the allergist go? I'm curious about the histamine intolerance. I suspect that I have an issue with this because of my meds.

 

Are you continuing to micro-taper the trileptal? I remember being on it years ago and quickly going off it without any issues that I know of. I had an allergic response to it after being on it a few months.  I did not know about tapering back then.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Reinstated.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.***Jan 22 Liquid was changed/couldn't tolerate***Changed back to pills. Feb 22/3.9 mg, 2/17/22 3.8 mg, 3/23 3.7 mg, 4/7 3.6 mg, 5/10 3.5mg,6/10/22 3.4 mg, 7/4 3.3 mg, 7/25 3.2 mg, 8/20/22 3.1 mg, 9/15 3 mg, 10/8/22 2.9 mg., 12/15 2.8 mg, 1/6/23 2.7 mg, 2/16/23 2.6 mg, 3/9 2.5 mg, 4/4 2.4 mg, 4/29/23 2.3 mg, 5/26 2.2 mg, 6/22/23 2.1 mg, 10/14 2 mg, 11/12 1.9 mg, 11/28 1.8 mg , 12/14/23 1.7, 12/31/23 1.6 mg, 1/20 1.5 mg, 2/6/24 1.4 mg, 2/12 updose 1.5 mg. Taking multi-vitamin, vit. D, cholestoff, psyllium husk, and fish oil.

 

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Didn't see this...company coming but I will get back to you. Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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Hi Marie,

 

I am sorry that things are so tough..up and down...hope and despair...frustration and fear.  It's a endless sort of torture we go through.

 

My visit with the allergist was a complete waste of time.  I only went to appear compliant with my GI doctor who can't figure out why I can't eat more.  None of these doctors understand how our meds make us so chemically sensitive and that includes foods....no matter how clean your diet is.  They both scoffed at the histamine intolerance ideation; as though it was a ridiculous notion.  He gave me a book to read that I could have written and told me to follow the diet and come back in 6 months.  I am pretty sure he didn't even know what gastroparesis is or he wouldn't have prescribed a Paleo diet.

 

I know otherwise.  While I can't tell you if my knowledge of histamine intolerance is the sole reason for my GI issues getting a bit more manageable because I am doing a lot of things simultaneously, I do believe avoiding high histamine foods has to be one of the contributing factors.  For me, that means not completely cutting out histamine foods or histamine releasing foods (two different groups) but limiting them to very small portions and keeping my histamine load over the course of the day down.  I used to eat leftovers all the time...just a day, as the previous day's lunch or dinner, but nevertheless, I don't do that any more.  I can't get fresh from the farm meat every day (I have to eat meat to keep my blood sugar steady) but I handle it very very carefully and cook it as soon as it is thawed, and freeze the part I don't eat immediately.  I had such a limited diet already that the histamine diet only eliminated a few more things, unfortunately some of my favorite "go tos" such as dark chocolate, cinnamon, and pumpkin.  (I used to eat fresh pumpkin w/ spices, no crust, and it was like a very delicious treat for me, whipped up it was like pumpkin mousse) Cinnamon has always been one of my favorite spices so cutting that out is hard.  I also drank herbal chai tea but no more of that either (cinnamon and cloves are histamine foods)  I had already cut out tomatoes and citrus because of other GI issues, and coffee as well.  I am on the fence about fish.  I can't eat red meat, and I get so sick of chicken and turkey so I have continued with a very little cod (2 oz.) once or twice a  week and have cut out the salmon that I thought was so good for me. (fish is really high histamine)

 

Basically, I am doing a whole lot of food rotation or otherwise I wouldn't be able to eat anything.  I consider my known allergies (too many to list), FODMAPS, fiber content, and histamines, and also the sugar/carb content and go from there.  I keep a log of what I eat and rotate foods so I don't have too high a load of any of the things I mentioned in one day.  I don't know if the accumulation of doing this for a while is helping but I am in less pain, my motility issues seem better, though my list of foods I eat has gotten shorter.  I haven't lost any weight in several months, but I haven't gained any either.  My GI doc wants me to gain at least 10 pounds but even though I eat often, and sometimes high calorie food, no weight gain.  I do cheat now and then and I confess....I never cut out dark chocolate, but I cut my consumption, which was very low to (about an ounce/day) down to 25% of that or one little square.  I don't enjoy anything I eat any more so I hold on to this one tiny thing that I savor thoroughly.

 

I have been holding for 2 1/2 months and plan to resume cutting something (???) as soon as the slew of out-of-town guests is over at the end of this month.  I am worried that the improvement in my GI issues is from holding and not from my new dietary plan.  I also have had some terrible insomnia nights in the last couple weeks.  It doesn't make logical sense to me that this means I need to start tapering again, but 3 months is a long hold, so I suspect it isn't going to get any better.

 

I am worried about what to cut next.  I have had windows and waves during this long hold.  I don't know if cutting the trileptal more will make a difference (I hit a wall with that) or if I should try remeron.  It's interesting to me that you can feel your remeron make you sleepy.  I take 4 mg. at 9:30 pm and don't get sleepy until 1 a.m. most nights.  The trileptal induces my other two meds, which makes them clear faster, but as someone pointed out cutting trileptal is affecting all 3 drug levels at once.  It does seem the most toxic to me.  It has seven ingredients as fillers as well and my other drugs have 3 each.  Seems like getting some of those extra chemicals out is a good idea.  I am glad I tapered nearly 30% of it anyway.

 

As far as allergies to my drugs, I have always considered side effects to be side effects, not allergies.  I have never gotten a rash or something dramatic that would tell me otherwise.

 

It's interesting you said you didn't have windows and waves with ambien.  I had a huge tolerance to ambien and I took it at night but almost by the clock I would have an increase in body pain by late afternoon....every day for 10 years.  I always thought it was the valium but after a couple years off ambien I realized that this late day body pain had abated substantially as had my pain in general.  I still have body pain...back and neck issues...but I had sciatica very bad when I was on ambien.  Seems like your body would probably have settled from the ambien w/d by now though. It's been nearly two years.

 

Traveling is so hard when we are like we are.  When I travel  (seldom to never now) I try to take my meds at as close to the regular time at home as I can.  Sometimes I adjust it by a little bit, but if your remeron makes you sleepy early your whole sleep cycle is going to get messed up.  Maybe you could split the difference (ie: if you usually take it at 11 pm take it at 9:30 instead of 8 or something like that)  Do you feel inter-dose withdrawal? Would you feel terrible if you just took it at the regular time you take it at home?

 

I did not intend to write so much but your questions and posts required a long response!  I hope you figure it out with the least discomfort possible.  As far as the trazodone, I would go off it cautiously.  I believe you have already been off it, and back on it, so unless you feel ready to really tough out the worst, I would proceed slowly.  I understand wanting it out now.  I want it all out now.  I want life back!!

 

Good luck,

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • 2 weeks later...

Hi whoever reads this...

 

I noticed on someone's thread today that a mod posted "bi-polar is a bit of a myth." 

 

I have been participating in SA for 6 months now trying to assimilate the information I find here.  I think I am beginning to see statements like this pretty consistently.  I have been told the same about schizophrenia...not in those words, but basically that it is a label we put on people that stigmatizes them and leads them to treatments that don't help.  Almost 40 years ago, when my 17 year old sister stuck a fork in her eye because a "voice" told her to, what made her do that?  To my knowledge, she experienced no childhood abuse, btw.  Are familial predispositions and genetics also a myth? 

 

Here's my question...is depression a myth propagated by drug companies?  I don't know about most of you, but  when I went undiagnosed and untreated for post-partum depression for one year, I was not convincing myself that was my problem.  It was 36 years ago and there was no internet and I was young and clueless.  I did not diagnose myself but a doctor did, and gave me elavil and I was like a different person after living in the depths of depression for 15 months.  Do I wish I had never taken that first pill?  You bet I do.  It basically ruined my life in the long run, but it kept me going while I raised my family.  This is not about me though.  I have made a lot of mistakes and I am paying for it now and have been for almost two decades and will likely pay until I die.

 

Are all mental illnesses made up in order to sell drugs?  If so, that would include depression and anxiety, the symptoms of which landed most of us here.  I do believe that the label/drugs have made all of us much, much worse, just like I believe doctors give out pills and do procedures instead of  using lifestyle changes. because that would not keep them in business and profitable.

 

But are all mental illnesses a myth?  One that will all fell prey to?  What am I not understanding?

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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Hello Grace!  Just my two cents worth but I look at it this way....long before there were big pharmaceutical companies and government agencies labeling people with mental disorders there existed mental disorders.  Mental Disorders have been around as long as written history has been around.  I personally think that doctors and people in general rush to judgment in labeling people especially children with mental disorder titles and slap them on drugs before trying other more natural methods.  I personally believe if I had of received good quality therapy and have had a supporting and understanding person that I probably would have never ended up on prescription medication.  I do believe my anxiety and depression is largely genetic with some environmental influences thrown in all made worse by prescription drugs.  I think that the withdrawal experiences from those prescribed medications have made my anxiety and depression worse but I do believe genetics plays a huge role in mental disorders and yes there are lots of things people can do to help themselves instead of going to prescription medications first and for some people I do believe they have to be medicated for life but I believe those are extreme cases.  I am guessing it was on my thread you were referring to for the "bipolar" comment....I understand that there are a lot of very smart, knowledgeable people here who have had success with their withdrawals strategies with minimal to no supplements or use of other medications to treat symptoms and I am happy for them....however not everyone is the same!

1995 - 2015 antidepressants and antianxiety medicine
Multiple failed attempts to quit/taper anti d/anti anxiety meds since 2008

June 17, 2016 began prozac bridge to get off of effexor xr, stopped effexor xr on June 24, 2016, could not tolerate prozac due to severe side effects so I had to stop it  Currently...300 mg ER of lithium, 1 mg of estradiol, 60 mg propranolol ER, Fish oil 2 x a day, Magnesium Glycinate,  zinc, vitamin c, vitamin d, NAC

 

 

 

 

 

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Okay, I am at the end of what I was hoping to be a healing 3 month hold, and today, I feel as bad, or worse than the day I made that difficult decision to hold.

 

I feel desperate and hopeless.  I have not messed with my drugs in any way during this hold.  I have not taken any supplements during this hold.  I did have a procedure (I just remembered) on June 1 in which propofol was used for a few minutes (endoscopy) but that was at the beginning of the 3 month hold. I starting holding on May 30th.  I have tried to stay as stress-free as possible and walked 45/day, except on the most fatigued-days, following a sleepless night.  While I can't say that I am active, I have gotten out of the house nearly every day, mostly to do errands as I find socializing too taxing.

 

What is going on with me? Why did this hold seemingly make me worse?  Is this that weird kindling thing that people talk about but makes no scientific sense to me at all.  I have clung to Rhiannon's explanation, which I think is pretty much supported here.  I decided my brain just needed a mid-taper adjustment, slow though it has been.  It doesn't seem to have worked.

 

I can't sleep or eat.  My muscles are rigid.  I am started to have more frequent acute episodes of panic, not something that I have really experienced before.  I have pain all over my body.  I am reacting to chemicals so badly we have had to remove furniture from the house.

 

I spend my days trying to figure out what to do next.  Do I taper trileptal because it affects my other two drugs' metabolism and might be activating and also messing with my other drug levels?   Do I taper remeron, though I have never tapered that in 15 years and am very worried about losing it's maybe sedating and anti-histamine effect as I have always been highly allergic? I know better than to try and taper the valium, well, because I already failed at that multiple times though I am not even sure it has a sedating effect on me. I suspect the only thing that these meds have been doing for me for a very very long time is keeping me out of intense withdrawal.  I have felt like I was in withdrawal for almost the whole time I have been on these drugs even before I started tapering. I feel sedated every once in a while a couple hours after I take my meds and then I might sleep for 2  hours or so.  Other than that I feel agitated all the time.  I NEVER sleep during the day...ever...even if I have been up the for more than 24 hours.

 

I have considered trying a micro-taper of all 3 drugs, the smallest amount we can measure on a digital scale, as Rhi is doing.  I realize that if something goes awry I won't know what to blame it on, but everything is awry all the time and I can't sort anything out anyway! Ever.  I know trileptal induces my other drugs; I just don't know how much.  I know the drugs have been used to working together all these years and when I taper one my brain is scrambling to establish homeostasis with all the drug levels being altered in some way, up or down.

 

I  might sound rational right now, but I AM NOT!  I am desperate and hysterical inside.  I know better than to go to a doctor or a hospital.  My therapist tells me to take more AD.  A functional medicine doctor tried to give me Adderal last week!  (I just wanted a doctor to listen to my story) It was disheartening when he chuckled at my extreme sensitivites and he charged $375/hour not covered by insurance!  I came away with more confirmation that no one can help me.  I have been trying to help myself and manage so many conditions for so long.  I am spent.  I don't want to do this any more.  I am embarrassed that I can't do what so many here do...taper successfully.  I have tried anything and everything.  We have lost a good portion of our financial security to help me to no avail. We have lost all quality of life long ago.  Is this the time I have been trying to avoid with my extremely slow taper?  Do I have to resign myself to a life of being bed-ridden?  Do I have to miss my little grandchildren's lives while I lie in bed trying to pass another day.  I have nowhere to turn, and no one to turn to.  I have tried to support others on here for 6 months.  I really have tried.  I have  pressed the "help" button for several people over these six months but I am now going to click it for myself...forgive me, but I don't know what to do...

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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Hello Grace!  I am so sorry you are feeling so terrible!  I am also sorry that I don't have any knowledge on trileptal or remeron to help you with.  I have heard from others that remeron is very difficult to get off of.  I believe trileptal is an anticonvulsant...is that correct?  Is it used for mood stabilization?  Which of your symptoms are bothering you the most....like your top three worst symptoms?

1995 - 2015 antidepressants and antianxiety medicine
Multiple failed attempts to quit/taper anti d/anti anxiety meds since 2008

June 17, 2016 began prozac bridge to get off of effexor xr, stopped effexor xr on June 24, 2016, could not tolerate prozac due to severe side effects so I had to stop it  Currently...300 mg ER of lithium, 1 mg of estradiol, 60 mg propranolol ER, Fish oil 2 x a day, Magnesium Glycinate,  zinc, vitamin c, vitamin d, NAC

 

 

 

 

 

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  • Moderator Emeritus

Grace ... You've been so patient and diligent and yet you're paying an awfully heavy price for something that seems to have been of moderate-to-minimal benefit.  ((((((((HUGS))))))))

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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Thank you both. Scalliwag, are you referring to the hold when you say I am paying a price? I really thought I was giving my brain a rest and time to heal. I needed a break and I have had Short Windows and long waves during this hold While tapering, even super slow, there are no windows...ever. I am just stumped and bereft that there seems to be no stabilization going on. grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

Nah, Grace, I meant for taking the darn meds in the first place. :(

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

Yeah, you're write. If only we had one "do-over" in life...

 

Thanks,

G

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Administrator

grace, do your symptoms have any daily pattern? How are you sleeping? Please keep daily notes of your symptoms, when you take your drugs, and their dosages.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Sleep is the worst symptom for me Alto. It all began with sleep issues and it won't end because of sleep issues.  If I could sleep, I could handle all the other withdrawal symptoms I think, though the GI issues (some maybe not w/d related) are next.  I get anywhere from 2-4 hours of sleep (at best) and then I wake up and toss and turn and sometimes have some very light sleep (like I am not sure I was asleep, but I think I was)  A very very good night would be 6 hours with lots of interruptions, waking and tossing and turning but 6 hours all pieced together.  I go to sleep about 2 a.m. and take my meds at 9:30 pm.... well, I take 220 trileptal, 4 mg. remeron and a little less than 6.5 valium.  I take the rest of my valium around dawn when I can't sleep.  I started doing that years ago on my psych's advice.  I get electric shock-like sensations in my chest (heart area) and chest pain in the early morning hours. Sometimes severe.  I have had my heart checked. This went away during this hold, so I thought the hold was helping but it is back. I feel exhausted and achy and upset when I get up every day.  I am very, very depressed almost all the time.  I have been getting acute anxiety, almost panic attacks around 5-7 pm almost every day.  May chemical sensitivities are through the roof and are constant.  I could write a very sad book about what we have had to do to keep my chemical reactions under control.  My mind races.  I have felt like I am in 'fight or flight" for as long as I can remember.

 

Because I have been sleeping so poorly for so very long, I have a lot of fatigue and body pain and have had that for 15 years.  I also have diagnosed GI issues which I have been working hard on during this 3 month hold.  I have not gained any weight but I have not lost any either.  My nutrition is very poor though.  I have to skip meals because of pain and I am eating a much higher carb, lower protein diet than I used to.  I am eating a rotation diet based on FODMAPS, HIT, no  dairy, eggs, casein, caffeine, alcohol, citrus,low grains (just added those in....brown rice cakes and some oat brain that is in a muffin that is helping my IBS) I also have known food allergies and blood sugar issues.  I feel silly writing this as I have written this before but I don't expect you to go back and re-read the whole mess.  I take no supplements because just about anything I take changes how I metabolize my meds and I become unglued overnight...literally.  I have been experimenting with magnesium oil a bit off and on.  So far it seems benign.

 

If I get any energy it is usually late in the day around 7-8 pm or sometimes later.  Sometimes I get bursts of energy then but not often lately.  I just realized that I take my meds at 9:30 and these bursts of energy are often just preceding or just after my meds....hmmm...I shall try to pay more attention to that.

 

Since I started cutting trileptal from 300 mg. in March 2015, my husband and I both noticed that I sometimes actually get drowsy around midnight.  Sometimes I actually go to sleep.  That NEVER happened before.  I had cut about 20% when this started happening and I still get drowsy around midnight on a good night.  If I go to sleep at midnight I wake up 2 hours later.  If I don't go to sleep at midnight, then it is at least 2 am before I do. Changing my trileptal did do something, but when I started my hold at the end of May I was sweating through my nightclothes and sheets, having horrendous morning chest pain and suicidal ideation.  It was time to do something different.  None of the other stuff was different.  During this hold the night sweats stopped.  They have only happened a few times.  I also wake up short of breath at dawn but that is infrequent right now.

 

That is enough for now.  I am sorry to give you so much info to muddle through, I really am.  My analytical mind can't figure any of it out.  I can't see any patterns and studying  drug interactions, and analyzing my symptoms,  is driving me insane.  I am truly wondering if I should try RHI's method which sounds radical, but honestly, I wonder what would happen if I tried?

 

thank you for your time.  I am truly grateful and will continue to try to give back.  I am painfully aware that no one has THE answer. If that is your answer, I will accept that.  The consequences of whatever I do are mine.   I just need another brain to help mine.  My husband, though smart, does not seem able to help me on this one and I have totally given up on doctors.  I have no respect for 99% of them.  They are dangerous.

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

Hello Grace,

 

I also don't have an answer but I've read a few of your latest posts and just wanted to share some of my observations. I can understand your frustration perfectly because this is such incredibly frustrtaing process. Especialyl when we have expectations that 3 months of hold and trying to do everything right will pay off and then we feel it didn't or didn't enough or as much as we expected. I share some of that frustration because I hoped that i woudl feel better 8 months into my hold. Although it's not as good as I expected it to be I can see that it is better than it was so to me it just means my brain needs more time. I think 8 months is a lot but my brain doesn't agree.

 

In your last post I see a number of things that did improve (although shock-like sensations and chest pain seem to have return). Do they come and ago? Can you think of your symptoms in terms of what has improved, what has stayed the same and if there is anything that got worse? Did you have any particular reason for setting 3 months as a time after which you will do a reassessment?

 

If some things have improved and the rest didn't get any worse I would continue to hold. From my perspective 3 months is not such a long hold. Recovery may be slow in the beginning but might pick up pace just round the corner.  Maybe I'm wrong but I feel that is my best bet.

Current: 9/2022 Xanax 0.08, Lexapro 2

2020 Xanax 0.26 (down from 2 mg in 2013), Lexapro 2.85 mg (down from 5 mg 2013)

Amitriptyline (tricyclic AD) and clonazepam for 3 months to treat headache in 1996 
1999. - present Xanax prn up to 3 mg.
2000-2005 Prozac CT twice, 2005-2010 Zoloft CT 3 times, 2010-2013 Escitalopram 10 mg
went from 2.5 to zero on 7 Aug 2013, bad crash 40 days after
reinstated to 5 mg Escitalopram 4Oct 2013 and holding liquid Xanax every 5 hours
28 Jan 2014 Xanax 1.9, 18 Apr  2015 1 mg,  25 June 2015 Lex 4.8, 6 Aug Lexapro 4.6, 1 Jan 2016 0.64  Xanax     9 month hold

24 Sept 2016 4.5 Lex, 17 Oct 4.4 Lex (Nov 0.63 Xanax, Dec 0.625 Xanax), 1 Jan 2017 4.3 Lex, 24 Jan 4.2, 5 Feb 4.1, 24 Mar 4 mg, 10 Apr 3.9 mg, May 3.85, June 3.8, July 3.75, 22 July 3.7, 15 Aug 3.65, 17 Sept 3.6, 1 Jan 2018 3.55, 19 Jan 3.5, 16 Mar 3.4, 14 Apr 3.3, 23 May 3.2, 16 June 3.15, 15 Jul 3.1, 31 Jul 3, 21 Aug 2.9 26 Sept 2.85, 14 Nov Xan 0.61, 1 Dec 0.59, 19 Dec 0.58, 4 Jan 0.565, 6 Feb 0.55, 20 Feb 0.535, 1 Mar 0.505, 10 Mar 0.475, 14 Mar 0.45, 4 Apr 0.415, 13 Apr 0.37, 21 Apr 0.33, 29 Apr 0.29, 10 May 0.27, 17 May 0.25, 28 May 0.22, 19 June 0.22, 21 Jun updose to 0.24, 24 Jun updose to 0.26

Supplements: Omega 3 + Vit E, Vit C, D, magnesium, Taurine, probiotic 

I'm not a medical professional. Any advice I give is based on my own experience and reading. 

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Hi Grace. I know it's hard to figure out which way to go with all of this. It all gets so confusing. By reading your posts it seems that some things have improved when you started cutting the trileptal and then with the hold. What does your instincts tell you to do? Maybe hold a bit longer and see if anything changes.

 

At that point I would start to microtaper the valium (the second dose you take in the middle of the night). If I read your posts correctly you last cut .25 on the valium and then hit a wall. Make a smaller cut of .10 (or less) and see how you feel. if all goes well do that every couple months. You can then go back to tapering the trileptal when you're ready with very small cuts. Save the rem for later.

 

I'm no expert but this is something I would try if I were in your shoes. You can do this Grace.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Reinstated.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.***Jan 22 Liquid was changed/couldn't tolerate***Changed back to pills. Feb 22/3.9 mg, 2/17/22 3.8 mg, 3/23 3.7 mg, 4/7 3.6 mg, 5/10 3.5mg,6/10/22 3.4 mg, 7/4 3.3 mg, 7/25 3.2 mg, 8/20/22 3.1 mg, 9/15 3 mg, 10/8/22 2.9 mg., 12/15 2.8 mg, 1/6/23 2.7 mg, 2/16/23 2.6 mg, 3/9 2.5 mg, 4/4 2.4 mg, 4/29/23 2.3 mg, 5/26 2.2 mg, 6/22/23 2.1 mg, 10/14 2 mg, 11/12 1.9 mg, 11/28 1.8 mg , 12/14/23 1.7, 12/31/23 1.6 mg, 1/20 1.5 mg, 2/6/24 1.4 mg, 2/12 updose 1.5 mg. Taking multi-vitamin, vit. D, cholestoff, psyllium husk, and fish oil.

 

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Hi Bubble,

 

I think you make a very good point about setting 3 months as a hold.  I will try to explain my thinking.  If you have read my posts, or knew more about my past behavior, I have been a big endorser of holds in general and that is why my progress has been so slow.

 

I do feel a certain amount of urgency; perhaps some of it is just fear and increased anxiety but some of it is completely rational.  I will be 62 in December.  My health has declined a significant amount in the last year.  I developed severe GI illness that started around the time of the trileptal taper (first 80 mg. done over 1 1/2 years).  I have no idea if the trileptal taper caused this, or this is tolerance or side effects from trileptal, remeron or valium or all three.  I have called it life-threatening which may be dramatic but it makes me skip many meals and eat very poorly.  I am sensing that I starting to suffer from mal-nutrtion.  If I lose too much more weight, and/or eat any less, a feeding tube will be the next option and I am not doing that.  I have had a pretty dramatic increase in body pain in the last couple of weeks;  chronic back pain has been with me for 15 years, but it was under control and I was doing better with my back than I had been in 15 years, and now I feel I have slid backwards for no apparent reason.  Yesterday every single bone in my body hurt; I have soft tissue pain as well (bottom of my feet, hands) but my bones hurt yesterday, especially my pelvic bones.  I have felt as though my bones are going to break when I put weight on them.

 

Anyway, the urgency is that I am getting older and sicker and if the drugs are contributing to this, well, then, I need to try to move along and getting them out of my body.  At a snail's pace, which is all my brain/body can handle, I am not sure I have the luxury of super long holds.  Sure, if someone could assure me it would stabiize me, I would not hesitate to commit to a much longer hold.  I also have these mixed up feelings about tolerance.  I have felt tolerance (I believe) for  most of 15 years (my definition, perhaps not accurate) is that my body has been screaming for more all these years, but I have refused to give in.  I have never, ever up-dosed anything (except to get off ambien 5 years ago).  I refuse to up-dose these toxins.  Although I wouldn't have refused if I could have stabilized by doing so, but since I have felt tolerance for so long, I feel a small up-dose would likely not have done anything but increased my toxic load.  I have also read, (and tried to ignore) this concept of kindling, which makes no sense to me but it seems to be accepted in the world of benzos and alcohol so why not here too? I think Rhi's theory is the opposite of kindling as it promotes holds as needed.  I also sense from tons of reading here that too many stops and starts make one more sensitized and I suspect that is what has happened to me even though my holds have never been that long (3 months at most)  I say this because my last attempt was a 1% cut of trileptal and I sweated through the sheets the very first night.  Admittedly, I had been going downhill at that point but that is what made me hold.  Why 3 months?  Seemed reasonable, and I had a few key events this summer that I wanted to be present for...no other reason.

 

What has gotten better?  I am not sure...perhaps my IBS has gotten better...well, it is better, but I changed some other things so I am not sure holding is what did it, so I will only know when I start tapering again.  Other than that, I had a longer window after a month, and then have felt a worsening of all my other symptoms.  My sleep is just as erratic, my pain is worse, my anxiety is worse, and my depression is the same or worse.  I am starting to feel panicky a lot but I think it is because I have no direction, don't know what to do, and feel the options are all bad or worse...

 

I feel like all the talk of windows and waves on here only apply to people who are off drugs.  I don't read much about people doing very long holds while still on fairly high toxic cocktails of these poisons.

 

I hope I have answered your questions adequately.  I really really appreciate anyone who takes the time to try and digest my drug history and dilema and I appreciate being given options to consider very very much.  This is a very very scary place for me to be, and I have been here for a very long time, but honestly, thoughts of suicide/death being my only good option are becoming more frequent.  The trouble is I know pills likely won't do it and will just land me in the hospital, and make me sicker, and likely de-stabilize me any more, and I am too big of a coward to try any other way, and so I just suffer through each day, wanting to die.  I have sought help in every single direction...natural and alternative...and nothing has worked.  Everyone just shakes their head and wonders why nothing helps me.  I know.  It is the drugs!!

 

Thank you, Bubble.  I am grateful.  Grace

 

 

 

Wh

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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HI Marie,

 

Thank you, as well, for giving some time to my situation.  Not many people actually offer me opinions on what I should do and that is all I seek as I know this all turns out to be somewhat of a mysterious process as there is no definitive answer for anyone.

 

I found your reply very interesting.  Can I ask why you suggest micro-tapering the second dose of valium?  No one has suggested cutting the benzo before my other drugs on this site as it is considered sedating.  However, I don't sleep so is it sedating or just keeping me out of severe w/d?  BTW, I have noticed for the last couple nights that about two hours after I take my drugs (all but the second dose of valium) some of my symptoms, chest pain, body pain, abate somewhat.   However I have also noticed for quite some time that in that same two hour time span I get a slight feeling of RLS in my legs.

 

I have been following your posts and just haven't felt well enough to post back, but it seems you are doing as well, or better than expected and you are well on your way to conquering trazodone.

 

Thank you, Marie, for your thoughtful consideration of my need for help w/ getting some direction.  I appreciate it more than I can express.

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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Hi Grace. I believe you should taper the valium because you are in tolerance. I think it's giving you the most problems. I suggest tapering the second dose because the first dose of valium will get you to sleep and give you at least some sleep. Leave the rem at 4 mg for now because that's helping you sleep too. Microtaper the second dose of valium is what I would do.

 

Just go slow and see if it helps. Once you get the valium down to a low dose stop and continue tapering the trileptal, then the rem.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Reinstated.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.***Jan 22 Liquid was changed/couldn't tolerate***Changed back to pills. Feb 22/3.9 mg, 2/17/22 3.8 mg, 3/23 3.7 mg, 4/7 3.6 mg, 5/10 3.5mg,6/10/22 3.4 mg, 7/4 3.3 mg, 7/25 3.2 mg, 8/20/22 3.1 mg, 9/15 3 mg, 10/8/22 2.9 mg., 12/15 2.8 mg, 1/6/23 2.7 mg, 2/16/23 2.6 mg, 3/9 2.5 mg, 4/4 2.4 mg, 4/29/23 2.3 mg, 5/26 2.2 mg, 6/22/23 2.1 mg, 10/14 2 mg, 11/12 1.9 mg, 11/28 1.8 mg , 12/14/23 1.7, 12/31/23 1.6 mg, 1/20 1.5 mg, 2/6/24 1.4 mg, 2/12 updose 1.5 mg. Taking multi-vitamin, vit. D, cholestoff, psyllium husk, and fish oil.

 

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Does anyone think my (our...husband too) inclination to "micro-micro-taper" all three at once (or at least try) is a good idea? (Rhi's method)  I know the interactions cause such confusion in this poly-drugging.  Since I can't sort out what is causing what, maybe when I upset the apple cart, I should upset all the apples not just one variety.  They are all mixed up together and have been for 15 years.

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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I understand your thinking, Marie and I am considering any and all options, and this will be one of them.  I am very skittish as I was very, very sick when I last stopped tapering valium in January 2015, after tapering for several years very slowly.  I also have that "accelerator, brake" thing on my mind, but you are right I am in tolerance to the valium and have been since a few months after I started it.

 

Thank you for sharing your opinion.  I truly appreciate it.

 

I do get really, really vivid, sometimes upsetting dreams, though, and I waken up in the middle of them.  This goes on all night...remeron or valium or both?

 

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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I understand your thinking, Marie and I am considering any and all options, and this will be one of them.  I am very skittish as I was very, very sick when I last stopped tapering valium in January 2015, after tapering for several years very slowly.  I also have that "accelerator, brake" thing on my mind, but you are right I am in tolerance to the valium and have been since a few months after I started it.

 

Thank you for sharing your opinion.  I truly appreciate it.

 

I do get really, really vivid, sometimes upsetting dreams, though, and I waken up in the middle of them.  This goes on all night...remeron or valium or both?

 

Grace

Yes Grace I get them too. Trazodone has given some very wicked dreams that are so vivid when I wake up I can recall them. They can be upsetting I know, now I try to just play it off as withdrawal. I've read too that rem causes bad dreams too. So I guess I'm getting a combo deal of nightmares. I'm not sure about valium.

 

Marie

10/13--10/14 Ambien. Started tapering 1/14  Jumped 10/14.  Done.                                                                              

3/14        7.5 Remeron  still taking this.                              

2/14         75 Trazodone   -    Tapered by dry cutting all the way down.

1/16        4 mg Trazodone  -  Jumped. Bad mistake. Got hit with late withdrawal 6 weeks later. Reinstated.

4/16        Reinstated 1 mg, updose to 2 mg Trazodone

2/19        .04 Trazodone. Walked off.  Done.

10/3/19  Started 7.5 Mirtazapine taper cut to .073 gram weight, pill weighs .076

4/5/20    New Mirtazapine Taper - Compound Liquid 7.35 mg April '20, 7.25 mg May, 7.05 mg June, 6.99 mg June, 6.78 mg July, 6.57 mg Aug, Sept 6.35 mg, Sept 6.24 mg, Sept 6.21 mg, Oct 5.99 mg, Oct 5.90 mg, Oct 5.70 mg.

1/11/21 6.05 mg Messed up taper due to syringe change. Must remember the 1 ml syringe contains 1.5mg! 1/16/21 5.99 mg

2/21 5.75 mg, 3/21 5.6 mg, 4/7 5.45, 4/14 5.30, 5/12 5.15, 5/25/21 4.99 mg, 6/29 4.87 mg, 7/14/21 4.74 mg, 8/5 4.62 mg 8/17 4.5 mg, 8/30 4.38 mg,9/16 4.26 mg,10/9 4.14 mg, 10/23 4.05 mg, 11/6 3.96 mg,11/17 3.87mg.***Jan 22 Liquid was changed/couldn't tolerate***Changed back to pills. Feb 22/3.9 mg, 2/17/22 3.8 mg, 3/23 3.7 mg, 4/7 3.6 mg, 5/10 3.5mg,6/10/22 3.4 mg, 7/4 3.3 mg, 7/25 3.2 mg, 8/20/22 3.1 mg, 9/15 3 mg, 10/8/22 2.9 mg., 12/15 2.8 mg, 1/6/23 2.7 mg, 2/16/23 2.6 mg, 3/9 2.5 mg, 4/4 2.4 mg, 4/29/23 2.3 mg, 5/26 2.2 mg, 6/22/23 2.1 mg, 10/14 2 mg, 11/12 1.9 mg, 11/28 1.8 mg , 12/14/23 1.7, 12/31/23 1.6 mg, 1/20 1.5 mg, 2/6/24 1.4 mg, 2/12 updose 1.5 mg. Taking multi-vitamin, vit. D, cholestoff, psyllium husk, and fish oil.

 

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Hi Grace!  For what it is worth I would taper one of the meds at a time.  My reason for suggesting this is that way you will find out which one is causing you the most problems....maybe hold two and taper one for a month and see what that does and then the next month hold two and taper a different one and see what that does and then the third month hold two and taper the drug you did not taper the prior two months and then in the fourth month taper the one of the three that you were able to determine is causing you the most problems.  Does that make sense?

1995 - 2015 antidepressants and antianxiety medicine
Multiple failed attempts to quit/taper anti d/anti anxiety meds since 2008

June 17, 2016 began prozac bridge to get off of effexor xr, stopped effexor xr on June 24, 2016, could not tolerate prozac due to severe side effects so I had to stop it  Currently...300 mg ER of lithium, 1 mg of estradiol, 60 mg propranolol ER, Fish oil 2 x a day, Magnesium Glycinate,  zinc, vitamin c, vitamin d, NAC

 

 

 

 

 

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Thanks, DG. I really appreciate you taking the time to

Help me think about this. At present, I feel helpless and panicky all the time.

 

Thank you

Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

That's what I've been saying, too, Grace.  Pick one, and try a test taper.

 

Then, it will be more clear.  Then we can help you with the next step.

 

But you have to decide.  We don't have more information than you do, at this point.

 

I agree with DG that a multi-taper is a risky thing.  Test one, and if you can last a month after that first taper, you can try to taper something else, based on how that taper went.  If it went poorly, maybe not do that one again.  If it was easy, then keep going.

 

I also agree with Bubble about holding - but you continue to express urgency.  We are not in your skin.  You have to decide when you are ready, and you have to decide what your next step to try is.  

 

There are myriads of people "holding" on high doses of these drugs.  Only a few here in SA (I can count on one hand, but I don't read every thread, either).  It's called polydrugging, and I've seen people "hold" with or without switches for 30 years, sometimes more.  

 

If you feel compelled to make a change, you can 1. reinstate (not really an option), 2. hold, or 3.  taper something.  Sometimes one of us can see which is the best to taper, but not always.  Re-read your thread from the beginning, see what the "first impressions" were.  

 

Your situation is unique to you, pick one.   Just try it carefully, mindfully, even a microtaper.  (my first pick would not be the valium, I would save it for later unless it metabolizes with another.)  And if you pick one that is "against SA protocols," you already know that - and - as we always do, we'll try to support you through it.  It happens all the time, usually impulsively.

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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  • Moderator Emeritus

Grace, maybe the place to start to examine this is to look at your previous response to dose changes:

 

Which change produced the most negative response?

Which change produce the least negative response?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment

thank you , Scalliwag.  There has been no clear answer to that, but thank you.  Grace

  • amitriptyline from 1980-2002,
  • intermittent  use of benzos over 2 decades prior to 2002
  • 2002-2010 Klonopin 1-2 mg., ambien 10--20, mg, remeron 4 mg. and  trileptal 300 mg
  • 2011 Stopped ambien and crossed over to valium 17.5 mg. (updosing 2.5 mg. to cover ambien C/T )
  • tapered valium w/ long holds to 12.74 mg. from a high of approximately 20-30 mg/day
  • 2015-2023 tapered trileptal to 98 mg.  had to completely stop tapering due to multiple chronic, serious health issues
  • currently 2024 still on 98 mg. trileptal and 4 mg. remeron
  •   Currently on benzo hold as I have to cross-over from brand-name valium to generic diazepam.   The diazepam is way weaker and brought on severe acute w/d
  • Current dose of diazepam is 7.9 and valium is 6.6.  I had to up-dose the total valium/diazepam from 12.74 to 14.5 where I have stayed since June 2023.  I am crossing over to generic at a somewhat tolerable rate of .3mg/month after about 2 months of trial/error w/ updosing.  I am not currently tapering; will continue to cross over. 

 

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  • Moderator Emeritus

I'm reading your post summarizing what's happened so far for you. Here's part of it (with some line breaks inserted)
 

I spend my days trying to figure out what to do next.

 

  • Do I taper trileptal because it affects my other two drugs' metabolism and might be activating and also messing with my other drug levels?
     
  • Do I taper remeron, though I have never tapered that in 15 years and am very worried about losing it's maybe sedating and anti-histamine effect as I have always been highly allergic?
     
  • I know better than to try and taper the valium, well, because I already failed at that multiple times though I am not even sure it has a sedating effect on me.
     
  • I have considered trying a micro-taper of all 3 drugs, the smallest amount we can measure on a digital scale, as Rhi is doing. I realize that if something goes awry I won't know what to blame it on, but everything is awry all the time and I can't sort anything out anyway! Ever.
I know trileptal induces my other drugs; I just don't know how much. I know the drugs have been used to working together all these years and when I taper one my brain is scrambling to establish homeostasis with all the drug levels being altered in some way, up or down.

 

 

When I look at what you've written, what I see is you have less hesitation about trying a cut of trileptal than the other 2. It's also the drug you were tapering before your hold.  What do you think about starting again with that by making a very small cut, 5% or less? 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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