CharlotteTeaTimes - Hoping to wean off Pristiq and Klonopin - part way there

[CharlotteTeaTimes]

Thank you for having me here. I've run across this board several times in the past and it was useful for validation and info.  I've come to a moment in time where I want to be a little more active and post as I'm having some more difficulty with my taper than in the past.

I was originally placed on many different anti-anxiety meds starting in my teens and twenties.  I would get "panic attacks" quite a bit.  Looking back, I strongly believe (and have been told by specialists) that these were most likely the start of an illness called Postural Orthostatic Tachycardia Syndrome.  I would feel my heart racing, feel like I was short of breath, feel like I had "fishbowl" vision and seeing the movement of things around me was overstimulating and scary.  I still get these feelings at times now, but they are much less frightening as I know they are a symptom of my illness.

Around 2010, I started to experience a feeling of fear in my body.  It was different than the "panic attacks".  I felt like I didn't want to be in my body because of the intensity. It felt like an alarm bell was constantly ringing and I couldn't get away from it.  I was having bad side effects from the anti-anxiety meds they tried to put me on and I ended up in an intensive outpatient program where I was prescribed 50mg of Pristiq (which I had never been on before).  This was added to 1.5 mg of Klonopin which I had already been taking that hadn't been helping very much.  Shortly after getting on the Pristiq, the feelings of extreme fear stabilized and I was fine for some time.

In 2012, I had been having a flareup of my old "panic attacks" (I had not yet been diagnosed with POTS) and was in for a month-long trip to another state where I would be taking care of my husband while he underwent a liver and bowel resection for a rare cancer. My psychiatrist doubled my Pristiq and Klonopin in an attempt to stabilize me.  I didn't notice it really helping but I got through things.

In 2013, I was fully diagnosed with POTS as I had a massive change in my health and was unable to work anymore.  

By 2018, I had a wealth of symptoms to contend with because of the POTS.  A major one was digestive in nature - constipation and gastroparesis.  I started to wonder if there was any possibility that it could have anything to do with the Klonopin or Pristiq.  I started to slowly wean off of both.  I would titrate Klonopin in milk and eventually got from 3mg down 1.5.  I had some problems and stopped there.  Two different times, I weaned down from Pristiq without compounding.  Once from 100mg to 75mg.  And then several months later from 75mg to 50mg.  Both were accompanied by withdrawal - dizziness, nausea, disorientation, insomnia.  After 3 months of being on 50mg of Pristiq, I ended up getting the "fear" feeling back and going inpatient.  I went back up to 75mg.  After being on that for a while, I did successfully taper again down to 50mg.  At that point, i found a compounding pharmacy that would help me step down in 5mg doses every month.  This worked much better.  I would take a 25mg pill and then whatever I got from the compounding pharmacy.  When I reached 20mg and no longer had the ER pill, I had massive issues.  My belief is that they didn't understand the nature of Pristiq's ER formula and that combined with the sensitivity of my nervous system to a lot of things, I was having an uneven amount of the medication in my body throughout the day.  I gave up for the time as I was also contending with the problems with my POTS(always a primary issue in my life).

Last month, I was told by my pharmacist that name brand Pristiq was back ordered and he couldn't find it anywhere.  His wholesalers were all telling him they wouldn't have it until August.  I have tried generic Pristiq several times in the past and for whatever reason, I get a bad reaction to it, like the way I do with many drugs.  My hand was forced.  I went cold turkey from Pristiq on July 15th. 

The first week wasn't as bad as I thought it would be.  I had disorientation, nausea, insomnia, and anxiety but it was manageable.  About two weeks in, I started getting the old "fear" feeling, and much worse insomnia.  My psychiatrist thinks I should just go back on the Pristiq but I need to find another solution as in a few years I will be on Medicare and I know of no plan that will help pay for name-brand Pristiq and it is very expensive.  She told me to take extra klonopin as needed.  I've tried that a few times but now I'm having a strange problem I've never had before.  I get stomach churning, heart pounding, and nausea whenever I'm trying to sleep.  At first it started to wake me up and that added to the insomnia and fear and anxiety feelings.  Now, it's when I start to fall asleep and I go in and out of sleep before I either give up or fall asleep.  It doesn't matter if I'm lying down or propped straight up.  Even feeling very sleepy, I start to get nauseous.  If I hear a loud noise, I can get nausea and my heart pounds.  

In desperation and to try to see if this nausea is from the Pristiq withdrawal or some new part of my illness, I'm going to try to take one 25mg pill today.  I need to figure out what is actually causing this problem.  My guess is that the Pristiq is but my body is so sensitive it's hard to be sure. 

I'm also thinking about trying to take the generic one more time to see if anything has changed and if I can handle it.  Either way, I am interested in trying to titrate the Pristiq down in smaller doses from the 25mg.  I know there's at least one other person on here who has done it.  I read their account last month.  I need to back and read that again for the details.  Also thinking about splitting the dose in two to replicate a longer release period.

Thank you if you've read all of this.  I know it's complicated.  I wish it weren't. Thanks for having this website.  It is very useful to so many.

 

[Altostrata]

Welcome, @CharlotteTeaTimes

 

Did you try 25mg Pristiq? How are you feeling now?