What Am I Supposed to Do?

When you're so far below the floor, everything's a ceiling

-Death Cab for Cutie

"So far down in this hole, there's little daylight.
I feel the shards of the midday sun and then it's black as midnight."

I am, indeed, in a hole - a new hole since I last wrote - and I don't know if I can get out. In fact, it's starting to occur to me that I may have just plunged myself into a hole where there is no healing path – or at least not one I can endure anyway. To heal, you have to understand what's wrong - where the pain is coming from. There are too many variables and too few knowledgeable experts for me to feel confident in taking any direction. 

HOW IT STARTED

Let me just quickly go back and try to delineate the process that's led me here.

One time in college, I smoked too much pot and I experienced the unnerving sensation of depersonalization so extreme, it triggered a potent panic attack. That one experience, I believe, carved out a neural pattern that made it easier for me to have future panic attacks.

Later, in my young adult life, I made the same mistake with marijuana and had another debilitating panic attack that led me to the ER. And about a year after that, yet another panic attack came on – this time without any chemical assistance. I was so frightened by this that I made a doctor's appointment the next day. This was in 1999, when the growth of prescriptions of SSRIs was exploding. The information I was reading on the internet at the time said they were effective in 70-80% of people who took them.

Paxil had recently come out and was touted as the first SSRI with an “anti-anxiety” component in addition to anti-depressive. The doctor I saw prescribed that and xanax, as needed. He stressed the habit forming aspect of xanax but said paxil was nonaddictive. When in a state of anxiousness, my decision making habits are made quickly, oftentimes without thought of long-term consequences. Which is exactly the model of psychiatry and the pharmaceutical companies they rely on – find medicines that provide relief to immediate crises.

For two weeks, I grew more obsessive and fearful of having another panic attack. I was told the paxil wouldn't start “working” for two weeks or more. In that time, I sank into the first depression I'd ever experienced. I attributed it to the nervous obsessing panic that wasn't really abating unless I took a xanax. It didn't occur to me then that the paxil was contributing to the problem – that it was “temporarily” destabilizing my brain in that two-week window.

But just like they said, around two weeks later, I started to feel normal again. The paxil “worked”. However, I would continue to have panicky, depressive episodes periodically lasting a few days and then rapidly dissolve. In no circumstance was there a clear, specific life circumstance that I could attribute to these dips.

They were frequent enough that I started to see a psychiatrist regularly. I'd been switched over to the controlled release paxil at some point. But in 2005, there was a shortage of the controlled release version and I had to take the standard paxil. In that time period, I sank into the deepest anxious depressions I've ever experienced. In my emergency state of mind, I called my psychiatrist in crisis mode and he prescribed 1.5mg of xanax daily to "augment" the paxil– I had only used it sparingly before that. As all times before, I “pulled out” of my depression about a week later.

Benzo Harm Awareness

As the years went on, I developed problems from daily use of xanax – extreme lethargy and intense inability to stay awake while driving long distances. I took frequent naps, I feel asleep watching movies a lot of the time. In 2011, I decided I didn't want to be on xanax anymore and I tapered off it quickly without any consultation with my doctor. Things weren't right with me as I went off. I had heavy legs and strange parathesia-type sensations in my head. It got more extreme and several doctor visits before I made the connection with the medication. I found the Ashton Manual online and presented that to my doctor saying I wanted to go back on benzos – this time Valium – and taper per her 10% a month protocol.

As soon as I got on the valium, my symptoms remitted. I was so relieved and felt my troubles were over as long as I stuck to this tapering method. But I was naive. Even cutting 10% a month gave me horrible withdrawals – depersonalization, increased generalized anxiety, irritability, etc, etc.

Eleven months later, I took my final dose, hoping I'd been through the worst. But the worst was still to come. Extreme insomnia, emotional lability, myclonic jerks at night and a host of other bizarre psycho-physical symptoms pervaded. I muscled through it at work, missing many days, until I couldn't continue and took a three month leave of absence. In that time I went through the windows and waves of withdrawal well documented by others who've gone through this.

I was not much better when I went back to work, but I made myself go. Staying at home had only been making my ballooning self-loathing worse and being distracted by work helped pass the time. Pretty close to a year after my last dose of xanax, my symptoms eased and my mood stabilized. I still couldn't feel happiness strongly and felt little need to socialize. I wasn't “healed”, but I was better.

PAXIL NOW TAKES ITS TURN

About two years after my last dose and having read about the potential long-term harms of antidepressants, I decided I was going to go off paxil, which I'd taken daily for 15 years. I'd heard some talk of serious withdrawal from SSRIs but the accounts seemed fewer and less severe than those withdrawing from benzodiazepines. Because I had now turned on the profession of psychiatry, I wanted to purge myself of this last medication.

So in October of 2014, I started cutting 5mg a week of my 25mg dose – a rate I now realize was far too fast. I should have learned my lesson. Deeply obsessive ruminating thinking took ahold of me followed by a growing depression. By January, I was a mess. In that time, my mom developed stage four breast cancer and I decided to go back on paxil. But there was no response. In fact, things were getting worse day by day.

For the first time in all of my experience with these problems, I had the urge to kill myself. I tried it with a belt around my neck a couple of times but I couldn't stand the choking feeling and stopped. On Super Bowl Sunday in February 2015, I was so depressed and unresponsive, that my wife took me to the ER where I was admitted to the in-patient psychiatric unit at our local hospital. I was a wreck – and I was visibly worse than everyone else I encountered. It was baffling – they were all dealing with extreme life circumstances that brought them to attempt suicide. My life, by comparison, was far better – I have a job I like, a wife I love, two kids and some great friends.

They were getting better – the group sessions were helping them, but I felt horrible no matter what I was doing. That said, I was released a week later and felt slightly better. I returned to work for a few days, but began to sink again. I then re-admitted myself to the psych unit. I seemed to have complete amnesia about the failings of psychiatry and the nature of my illness, that I was willing to try anything they suggested. After two more weeks there and no improvement, I pursued their suggestion of electroshock therapy (ECT). That took me to a hospital in Spokane (3 hours away) where I stayed for a month and received 11 treatments. Compounding the difficulty of my current situation, however,  was that they also prescribed 150 mg of zoloft as well. I had gone off Paxil in the hospital in Missoula.

The first two days after an ECT session, I would feel better but over the weekend, when there weren't any sessions, I got much, much worse. After a month in the hospital and 11 shock treatments, I was released and was no better.

I went back to work for a few days but then took myself back to the ER. The in-patient unit wouldn't take me and I was told my only option was state hospitalization. I decided to go home and try to tough it out, but my future felt extremely bleak.

THE FRYING PAN OR THE FIRE?

 In addition to the zoloft, I was given a prescription of ativan (prn). After all I had been through to get off of benzodiazepines, I did not want to take the ativan. But I was starting to develop a growing inner restlessness called akathisia. Feeling like it was either that or unendurable restlessness, I periodically took an ativan before work. I noticed that on those days, I would improve. I didn't want to take it daily so I fought through several days of severe unease hoping the periodic improvements weren't related to the ativan. But the akathisia was festering.  I could feel it up and down my spine – like my nervous system was in a vice and it didn't relent at any time of day until I went to bed.

So I made a Faustian bargain.

I started taking ativan three times a day. This was my last stand. If this didn't work, I would take my life. The level of suicidal ideation I had after release from the hospital was intense. I've never experienced it so dramatically. In fact, just thinking of suicide gave me relief. I would tell myself just to wait until the evening and then slip out and hang myself. But in less than two days of taking ativan regularly, I started feeling much, much better. Astoundingly better. At times, better than I felt before I went off benzos.

For about two weeks this went on and my goal was to go off the zoloft slowly while staying stable on the ativan. But the ativan fix didn't last. I slipped down again, where I'd wake up feeling both incredibly anxious and bleak. It would lessen as the day went on and I wasn't nearly as bad by the evenings. At times, I would have strongly over-emotional responses to negative thoughts or sudden changes. Thinking about anything in the future that I had to do – no matter how routine or insignificant – would give me an instant feeling of crushing despair. When I'd re-run the thoughts, the emotion wasn't as strong. It seemed to be related to whatever part of the brain is involved with immediate emotional reactivity.

But it wasn't monolithic – it came and went. I had times where I felt mostly normal. I started running two miles a day – exercising more than I ever have before. I was much better even at my worst then I was months before, but I was constantly worried I'd slip back to the point I'd been when I was hospitalized. I knew what I was going through was a reaction from the medication, but the psychiatrist I'm currently seeing unsurprisingly doesn't see it through that lens. I had to underplay the severity of what I was feeling for fear she'd prescribe something else.

She switched me over to klonopin in August (equivalent ativan dose). About a week into it, I again had a resurgence of improvement – the morning restlessness abated and the over-emotional responses vanished. For about three whole days. And it all returned again. Only this time, there have been far fewer breaks and the malaise is lasting longer throughout the day. I haven't missed a day of work due to this in six months, but each day is a fight to get to 5 pm. And it's getting harder.

 When I decided to get off of benzos, I had a dedicated healing path and goal. Faith in that goal and the testimonies of healing from others kept me going. Now I don't see a path -  I feel like I've gone 10 steps backwards and the right direction to turn now has vanished. This is where I'm at now. And why I'm scared and despairing and have the same question going over and over in my mind.

WHAT AM I SUPPOSED TO DO?

Thinking it may be due to tolerance to the benzos, I've tried increasing my klonopin dose, but it seems to have the perverse effect of making me more depressed while doing nothing to abate the internal restlessness – this feeling of being in a vice and the hyper-emotional (dis) response to any form of negative thought or thought of the future. I haven't made significant increases in the dose because I'm not sure it would help and I already hate taking the benzos as it is.

I don't know if this is withdrawal from the paxil I took for 15 years or a response of akathesia from the zoloft I'm taking. I'm scared that if I cut down on the zoloft, I'll get worse but I'm also afraid that the zoloft is causing the problems. After harrowing responses to changes in my medication, I'm scared to do anything. I simply can't stay home and endure another withdrawal process. I won't make it. But doing nothing is increasingly untenable.

What's making this worse, as anyone who has experienced severe withdrawal reactions to psych medications can attest, is there are no experts who believe this is a possible response from medication. The psychiatrist I'm currently seeing doesn't see it that way – she's told me that I control my thoughts and that I probably have to go to counseling to deal with these issues. The therapist that I see, and who I've seen for years and knows me far better than any psychiatrist ever could, absolutely believes that it's a complicated response to psychiatric medication. He really doesn't know what to do to help.

Nobody does.

What's even worse for me is that the absolute dearth of people who know what I'm going through and the seemingly small numbers of people who experience severe reactions like this make me doubt myself. Complaining of unobservable internal nervous system symptoms sounds so vague and, frankly, annoying to others. And as someone who has struggled with self-confidence issues, it's hard for me not to worry that this isn't from the drugs – that it's a personal failing of my own somehow.

INVALIDATION DOCUMENTED

A comment from psychiatrist Jeffrey Junig made once haunts me. He had been writing a blog on Psych Central where he was dismissing the likelihood of prolonged protracted withdrawalsymptoms from benzodiazepines. Several of us went on the comment site to rebut and share our experiences. To one person claiming problems of cognitive fog, etc, he wrote the following:

You must recognize by now, after your frustration with the medical system, that whatever is going on with your health has no ‘plausible’ explanation. I suspect, though, that someone trained in neuroscience and medicine will have a better likelihood of coming up with a plausible theory, than someone without that training.

Millions (literally) of people have started and stopped benzodiazepines who have no complaints of ‘problems following lists or written instructions, reduced ability to think creatively and abstractly, poor focus and concentration.’ Your theory is that there is something special about YOUR brain, causing you to have a different experience that other humans. Yes– there are enough people with symptoms like yours to fill a web forum or two—- but among the 200 million people in this country alone, there are large groups of people complaining of pretty much any symptom you can imagine. That’s human nature.

The idea that you, and perhaps another 0.1% of the population (that’s generous), have something different about your brain that made it respond in the way you describe, is not plausible to me.

On the other hand, conditioning is a universal phenomenon– in almost all animal life. Conditioning is why you find your way home at the end of the day. I am confident I could ride a bike today, even though I haven’t been on one in 25 years; that’s the power of conditioning.

The first issue in your case is distinguishing whether you truly HAVE ‘trouble following lists or written instructions, reduced ability to think creatively and abstractly, poor focus and concentration’– or if instead you only THINK you do. If you want to know the answer to that question, see a neuropsychologist and go through the battery of tests that determine those things. But if you do that, be prepared to accept the likely answer– that you are normal in all of those things.

If you DO have those problems, then you have to consider a mechanism— and a reason why you are uniquely effected. You also have to rule out other reasons…. for example, something must have been a problem for you, for you to start benzos in the first place. Either you had anxiety, or you had an addictive nature that caused you to take them. How do you know that one of those things– things that were present BEFORE the benzos– didn’t progress to your current problems?

This is often what I fear is wrong with me, that I've conditioned myself to have these reactions. My mom was on zoloft for several years and went off it with only a few days of brain zaps. Why is this so severe for me? I don't have the self-confidence to be calmed by the thought that I'm an outlier or that maybe way more people do but don't recognize the problem as from their medication. There are millions of people who are taking or have taken SSRIs and benzos who, as Junig mentions, seem to have nowhere near the trouble getting off the meds that I have had.

And on the other side, I read from those critical of psychiatry that these drugs cause irreversible changes in brain functioning. Trust me, when you have exaggerated anxiety to negative thoughts, reading that only heightens the feelings of helplessness. Maybe there isn't anything that can be done for me. I can't go on like this indefinitely, I know this. So I ask you again non-rhetorically:

WHAT AM I SUPPOSED TO DO?