CaliLiz, Polypharma Withdrawals

[CaliLiz]

Hi All,

I'm joining SA as a way to give and receive support as I work my way out of 14 years of poly-drug treatment for a "severe mental illness" diagnosed after I was involuntarily hospitalized in an extreme state in 2001.  When I was released from the hospital, I was on Seroquel and Depakote, constipated, confused, sad and dopey.  I slept all the time, gained weight, my hair fell out.  Deemed in the depression cycle of bipolar disorder, I was prescribed Celexa (terrible headaches and nausea), then Effexor (caused me to lose consciousness after exercising), then Welbutrin.  Lamictal and trileptal were added, Depakote taken away, Neurontin tried for awhile, stopped, all to "stabilize" my "mood".

 

A good career and high salary were history.  For 2 1/2 years, I could barely function.  My history of previous hospitalizations and mother's suicide 6 years prior made my SSDI claim sail through.

I lost the ability to socialize or feel comfortable into public.  I could blank out and hit the ground if someone startled me or trapped me.  Six years ago, I started using a trained service dog for tasks related to PTSD (protect my body space and assist me out of dissociative episodes).  That assistance allowed me to get off the seroquel and start doing things outside my home.  In 2013, coincidental with starting a part time job, I had an access challenge that involved the police.  My anxiety went over the top.

Psychiatrist prescribed Seroquel, then Klonopin to deal with that, but I had to come off the Temazepam to take the Klonopin.  I hated Klonopin and wasn't sleeping.  Psychiatrist said, "If 'we' take you off the Welbutrin, maybe you won't have so much anxiety."     I realized all along he had been prescribing additional drugs to treat side effects.

He had added Sertraline to the Welbutrin on a couple of occasions and insisted I go on that before coming off the Welbutrin, which I did.  Sertraline made me miserable.  I decided to stop taking it after 1 month.  I had gone back on the Temazepam for sleep, but once off the Welbutrin, didn't need that, either.   By April, 2014, I was off everything but Lamictal, Trileptal and Levothyroxine (thyroid).

 

I felt like a different person, awake!  I could think!  Wow.  My skin cleared up.  I started enjoying life and others started noticing how different my energy was.  I fired the psychiatrist and approached my primary care doc to help me taper off Lamictal and Trileptal (the only two psych drugs left).  Since a hidden study (not released until after the Lamictal's patent expired),  showed it no more effective than placebo for bipolar depression, I started with that first.  I did 10% taper until I got to half.  Then did 10% taper of the half, cutting back every 2-3 weeks.

Two weeks after my last dose of Lamictal, I started to slip into an altered state.  Contributing factors, IMO:
1)  Lamictal and trileptal have a synergistic effect.  Lamictal increases the dosage of trileptal by about 40%.  Coming off lamictal was like tapering off both;

2)  In altered states 5 times (first in 1974), I was always locked up and drugged, and never able to naturally resolve the process;
3)  The 20th anniversary of my mother's suicide approached.  The unresolved grief, numbed out by so many years of drugs, blindsided me;

4)  I didn't sleep for 5 days;  and

5)  Given what I'm reading here, there may have been some delayed withdrawal effects in the mix.

Fortunately, loving friends stayed with me, helping me avoid the trauma of lock up.  I've never been a danger to myself or others.  I needed sleep.

My primary doc prescribed temazepam.  This time, it worked poorly.  I had to take 3X what I'd taken before and it wore off within 3 hours.  I'm now using medical marijuana to sleep.  That works better than anything else I've tried (other than the seroquel which created a walking coma, not to mention the cholesterol soaring).

 

I'm concerned about the anticholinergic effects of the drugs I've taken, including the 600 mgs Trileptal I'm still taking.  With a family history of Alzheimer's, I do not want to add any more fuel to that potential.  I plan to start tapering off the trileptal this coming week.   Thanks to all of you for being here.

[dalsaan]

Hi CaliLiz,

 

Welcome to SA.  You have had a long and difficult journey.  Im sorry for your trauma and the loss of your mum.  As you know, coming off psychotropic medication can be difficult physically and emotionally.   We have a pretty conservative approach here.  We recommend dose reductions of 10% of the previous dose every 4 weeks or so.   Some people can go faster, some need to go slower.  We recommend listening to your nervous system on that one.  Here is a thread on our tapering method - http://survivingantidepressants.org/index.php?/topic/1024-why-taper-by-10-of-my-dosage/

 

I dont know your drug.  Others with more specific knowledge might chip in.   In the mean time do you have any questions you'd like to ask?

 

Welcome once again, you will find the community supportive and well informed

 

Dalsaan

[CaliLiz]

Thanks for the welcome, dalsaan.   I appreciate slow taper and did the 10% method with the lamictal EXCEPT, I wasn't accounting for the synergistic drop in trileptal that went along with it. 

 

I like the site and how conservative the approach is.  Yes, if anyone else has experience with Trileptal withdrawals, I'd enjoy any and all support and suggestions.

[ang]

hello CaliLiz and welcome.  I was hospitalized against my will once, was the most traumatic event in my life.  I never hurt anyone or anything either, so I can totally understand where you are coming from.  It takes a long time to be confident around authority again, but it does happen eventually.  (Caused by a valium........ I cant handle valium).

 

I have experience only with Seroquel, Temazepam, Zoloft, Effexor, Zyprexa.         I go psychotic on valium.   (Yet temazepam is fine, thus the doctors would never believe me, as both are benzos,)

 

You sound very well researched, well done.   Hope to read more of your posts.

[Fresh]

Hi CaliLiz , welcome.

If you go to the home page and put Trileptal into "search" , you'll get a bunch of threads where that term is mentioned.

You could message members you'd like to communicate with.

 

Best wishes ,  Fresh

[CaliLiz]

Thank you Ang and Fresh. 

 

I will do the search and see what comes up.  It's great to have this support.  I so appreciate it.

[calithebold]

Hi CaliLiz, I just wanted to welcome you and say that although I don't know all the drugs you mentioned I do understand being on many. I am still on 6 drugs that I slowly want to eventually taper off of. I hope you find lots of help here as so most people understand how it how it feels to withdraw and how hard it is. I'm on seroquel and lamictal and dreading coming off both of them

[Altostrata]

Welcome, CaliLiz.

 

It sounds like you have a long history of being excessively drugged. Here is a topic about tapering Trileptal http://survivingantidepressants.org/index.php?/topic/5990-tips-for-tapering-off-oxcarbazepine-trileptal/

 

Fascinating about your service dog -- if you care to discuss him more, please start a topic in the Symptoms and Self-Care forum -- others will be very interested.

[CaliLiz]

Thank you Altrostrata.  I read the article.  At 600 mgs, 75 is too much of a drop to start.  I think I'm going to taper by 37.5.  That is less than the 10% and I like the idea of starting out slow. 

 

The service dog issue can be a hot button topic because many people want service dogs to help with psych issues, especially anxiety, but the law only recognizes dogs trained to do work or perform tasks as service animals.   At some point in the self care section, I'll post about the large structure of self care I built for myself.  Honestly, I'd like to get away from using a service dog because it can be very challenging.  I've found a store I can get good organic foods and filtered water where I don't need to take my service dog (natural foods store is small, often not at all busy) and I prefer shopping there.

Here's a link to a resource for people who want to know more about the difference between psychiatric service dogs and emotional support animals.

http://servicedogcentral.org/forum/index.php/topic,98.0.html

 

Thanks for the info and support.

 

[CaliLiz]

Update on my taper.  Met with my primary care doc last week.  I want to be so so so conservative on the beginnings of this trileptal taper, especially after what I experienced a couple of months ago after coming off the lamictal.

 

I'm down from 600 to 563.5mg/day.  Even with that small amount, I'm experiencing how fragile I am emotionally, how careful I want to be with choosing who I spend time with and what I do. 

 

Sleep is good.  I got my 420 recommendation (medical marijuana).  It is the only thing that helps me sleep and I'm sleeping well.  I'm also finding I have less anxiety in general.  I don't know if that's because many of the other drugs are out of my system and I'm sleeping well or if the marijuana affects that.  I only use it at night before bed for sleep, but my daytime anxiety is almost nil.   That's a huge relief.