My husband's attempt to cross over from k to v

Hi everyone,

I am writing for advice because my husband is currently unable to do so due to akathisia, anxiety, a "reverse bear trap" in his head and tremors.. The main problem here is that he is not experiencing all of this during tapering, but rather when attempting a small step-wise substitution.

The background information:

He developed daily panic attacks (each of them lasting hours) in September 2007. His then doctor played musical chairs with antidepressants. Celexa and Lexapro sent him to the ER with convulsions and vomiting. Luvox side effects (intense convulsions and inability to speak) forced him to go from .5 clonazepam to 1 mg. He has failed 9 different antidepressants in every class and somehow the doctors thought it was the next one that would work.

2017, 2018 and part of 2019 he made so much progress, getting two Masters degrees and started a doctorate degree. He got his driver's license, went out on his own and was ready to start working again. Three jobs fell through at the last minute, and we moved from CA to TX. 2020... lockdown an cancer scare thanks to me (thyroid, all good now), an aunt died due to Covid complications and my father had two strokes and diagnosed with Alzheimer's. Amidst all that he may have accidentally cold-turkeyed himself between September and October because of a bad batch of pills. We had to go to the ER because he could not sleep, eat or drink. His blood work showed no traces of benzos in his system... which should not have happened after 13 years and taking his medication daily. In order to even out he went from .5 mg twice daily, to .25 mg 4 times a day. The psychiatrists he saw to help him wanted him to go up on Xanax, double his clonazepam dose, have him take a special supplement , or do an ultra rapid taper (4-9 days. He saw 7 different psychiatrists before finding the current one that was willing to help. It's terrible how hopeless it seems sometimes, with MDs who are not educated about this and do not seem like they are interested in being educated..

The current situation, starting 12/25/20:

His tolerance withdrawal and akathisia were a nightmare at this point so tapering off seemed like the thing to do after subsituting k with v, so he could stabilize...He has liquid diazepam and .125 clonazepam pills (orally dissolvable) so that he could make the smallest possible cuts. He took .125x2 4 times a day to maintain plasma concentration as well as possible. He substituted .125 from his night dose and replaced it with 2.5 ml diazepam. He found that nausea was less if he had the liquid diazepam (which he tells me tastes HORRIBLE) on a full stomach. Day 1-5 was fine. When he rejects medication (which is SO often... very few things work for him, which is how he ended up on the benzos) his body does so violently. Day 6 was rough with emerging anxiety and the emotional part of akathisia (diazepam did help with the movement part- he went from walking over 7 miles a day in the apartment to 5 or less). Day 7 he was still having a hard time, and proceeded with substituting .125 k with 2.5 v. It did not go well. He experienced withdrawal symptoms... it was terrible.

The psychiatrist reasoned that the failure was likely because the equivalent dose for him is likely higher than the 1:20 ratio... he also believed that he may need more time to adjust between substitutions. Lastly he believed that my husband should go up to stabilize in order to help with a smoother transition and then taper. The psychiatrist suggested going up 10 ml diazepam to stabilize (the amount includes the substituted dose), but at 7.5 ml he was experiencing oversedation, nausea, flushing, some temperature fluctuations (high 99 to 101.3). It looked like he was being overmedicated, so he tapered the dose down to 5 ml.  Two days later he started experiencing withdrawal symptoms and akathisia terribly enough that neither he nor I knew what to do... again no sleep, couldn't eat or drink. Today we reinstated the 2.5 ml he had removed. The d  was scary but by the end he was able to have some supe and I had him lie down now...

I'm not sure how to proceed. His CNS may have been thrown off because of the pills, the substitution could have been insufficient, he may have needed more time... it may be any or all of that. It broke his heart to go up after 13 years, I know. Yesterday he jumped out of bed shaking and pulse in the 140s... I'm praying for a better night tonight...

Your advice and insights are not just welcome, they are precious and I thank you in advance.

Update:

After reinstating the 2.5 ml diazepam, the physical symptoms of akathisia have eased a bit but the emotional part (feeling like he wants to jump out of his skin, emotional torment) remain. He has been able to eat a little, but sleep is still a big problem. He is extremely emotional and feels hopeless right now. Tinnitus is also quite bad (it is usually not a problem, but the last couple of days it has been persistent.

I'm not sure if anyone can provide suggestions or insights.. Thank you in advance..

I see you're getting some help on the Diazepam thread.

I think the doctor who say he needs to stabilize is correct. Too many changes too fast cause problems. I actually crossed part way and stopped so was on both Xanax and Librium (similar to Valium) for months before I finished crossing. Then when I finally finished the crossover, I held for nearly a year to stabilize. Then I successfully tapered off.

Perhaps you might read the Long Hold support group to see how others were able to stabilize by making no change at all for a long time. Sometimes a long hold is the answer.

:smitten: @gardener99

Thank you for the response and thank you so much for the tip about the Long Hold Group. I will definitely be reading right after I'm done responding. The Diazepam peeps have been amazing. I actually read the suggestion on one of the threads under substitution, where someone said that they are the experts when it comes to complex reactions to the drug. Absolutely so... I wish the medical community was a smidgen as educated as this community.

My husband desperately needs to feel stable and this has been such a horrible time for such a small substitution. "This should not be happening" and "this will never end" are hopeless, bleak thoughts at a time that he needs a path forward.

Again.. thank you, from the bottom of my heart.

I'm glad you're getting to know some of the support groups.

I wish all the best to you and your husband, who is very lucky to have you!