The Drugs Don’t Work

patientinfoIn an earlier post, “The Accident”, I spoke of my earlier medication trials, also with intolerable side effects.

The usual disclaimers: not all medicine and therapies work similarly for everyone. Mileage varies a great deal, unfortunately.

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I hadn’t been on any antidepressants for at least 6 months or longer when we returned to Berlin in December, 2013. They did nothing, I was so over-exhausted at the time I couldn’t bother with the psychiatrist I had seen once or twice before in Torino, so I stopped on my own.

My first medical cocktail, in late January 2014, consisted of Lithium, Elontril (Wellbutrin), Amitriptyline and Thyroxin. I’d stay on this until early 2015, about a year. Apart from a brief interlude with regards to Lithium.

I had side effects from the Lithium straight away. Perhaps these would dissipate in time, we had to see.

Initially and for a long while my vision was impaired. I had no depth perception and had a horrible time going up and down stairs. I held onto the railing at every staircase I faced, whether at home or the U-Bahn. I moved at the pace of someone debilitated in their 80s. I just couldn’t see and gauge the distance, always thinking I’d trip amongst the stairs at any time.

Our apartment is on the 3rd floor of our building (no lift) and at the time I’d need to carry my dog, Raster, who was very arthritic. I was extra careful going up and down with him and it would seem like forever moving between the ground and our flat. Several times a day.

A common side effect which I experienced was shakiness. My hands shook and it made it increasingly difficult to draw, one of the only things in which I could express myself during this time. However, I kept drawing when I was able.

Also, I stammered for the first time. Friends from San Francisco visited. Joel handled all the logistics and I just was there to be present because that’s all I could do. It was really a matter of respect more than anything else.

Of course, I rarely spoke. When I could force myself I stuttered and stammered through my sentences. Not something I’d ever experienced before. It didn’t go unnoticed as I witnessed in facial expressions of those to whom I was trying to speak.

Another problem occurred for which I had no explanation. Disorientation. I had taken an U-Bahn line one day that I’d taken a million times before. Though during this particular journey I was utterly confused and could not recognize the stations. I traveled in circles on the line, moving from various known stops to ‘unknown’ stops in either direction, for at least an hour. It was baffling and I could not handle crowds at the time, which made it all the more painful.

I was not functional at this time, as mentioned in an earlier post. It was a Herculean effort to do one thing every day. Chronic exhaustion prevented me from any activity, even if there was any desire to do anything, which there wasn’t.

The disorientation could have been a dissociative state, memory loss or situational confusion. It could have as easily been from the severity of my depression as from the Lithium or any combination of things.  Same goes for all that I was experiencing.  At some point you can’t tell the side effects from the disease.  It simply didn’t matter. None of this should have been happening.

Due to these experiences, I stopped taking Lithium, to see if it made any difference. As it turned out, after I stopped, my mood worsened. So it was a matter of deciding whether to go back on it or stay off.

I chose what seemed to be the lesser of evils and went back on Lithium.  My doctor noted that my suicidal thoughts went down since I had starting taking it again.

During this period I was unable to speak to my family in Los Angeles. I had clear intentions of disconnecting from my family altogether, forever. At the time, it seemed like an obvious decision to cut off all ties with everyone outside my rapidly shrinking little world.

My dog, Raster, died in November 2014. It pushed me further into this hell. Raster was super-sensitive to loud noises and would panic during the fireworks of New Years Eve. Especially in Neukölln, it is a legendary evening here. Previously we’d leave the neighborhood to spare Raster and Pixel of the noise and their fear.

However on New Year’s Eve 2014-2015, Raster had already passed. Pixel could deal more easily with the mayhem so we stayed home. Joel went to a friend’s party. Of course, there was no way I’d join.

At the stroke of midnight I stood at our living room window with my iPhone and continually shot the images unfolding before me. That’s what you see here. Yes, it’s like a war zone.

Just before and after the holidays, early 2015, I couldn’t even speak in therapy. Clearly the cocktail was not working and I was getting worse.

My doctor asked if I’d try something else, uncommon today, but had worked for others. MAOI’s were the first antidepressants available, ever; first available in the 1950s. They’re still used for some people who don’t respond to modern antidepressants.

I realised these were desperate measures. My doctor was doing everything she could. I knew it was not enough and longed for more. She had mentioned, fairly early on that I might want to go to hospital. Being from the US, I could only imagine state psych hospitals ala One Flew Over the Cuckoo’s Nest. Thus I said “No fucking way” but in kinder words. My doctor’s instinct was spot on but I could not understand it at the time.

At the MAOI stage, I’d try anything. Suicide had been a daily thought and desire for many months. A gun would be my preferred method since there is little chance for error. Unlike the US, guns are not easy to come by in Germany. The dark web was a potential solution to that hurdle but I resigned myself to holding off and trying another medication.

By February 2015, I had discontinued my previous cocktail and started solely on the MAOI Jatrosom/Parnate (Tranylcypromine). This medication has strict dietary limits based on the intake of ‘tyramine’. The restrictions include everything with yeast extracts, aged cheese, cured meats, tofu, soy and on and on.

For me, it didn’t matter if something was an “old” medication and had strict requirements of diet. It was all I had left, I thought at the time.

Regarding the diet, It didn’t really matter to me as I ate the same thing every day just because, efficiency. I only had to tweak it a bit. I carried on of a diet consisting of steamed carrots and broccoli for dinner, tuna and a sliced apple for lunch. For a few months.

By this time I had immersed myself in as much depression literature and research I could find. I combed the Internet for anything and everything possible. A lot of what I read is listed on the Resources page. As time passed, I increasingly focused my inquiries on experimental treatments since I was having no luck with traditional meds. This meant digging through medical periodicals, mainstream publications and DIY online forums.

In everything I read, I learned there were some possibilities out there for people who have not responded to “traditional medicine”. These possibilities included:

Of all the potential therapies, Ketamine was of most interest to me. It was a popular club drug in the 90s. I never tried it, I’ve never been a club kid anyway. Though it’s not classified a ‘psychedelic’ it has dissociative and hallucinatory effects.

Since I had positive experiences, as a teenager, using psychedelics a few times, I could easily see how this might work for me. I had responded positively to similar drugs, even if used recreationally.

The other therapeutic possibilities were of interest as well. Whatever worked, but the Ketamine was my first wish for a trial and I found a hospital in Berlin providing it as potential therapy.

Electromagnetic and Deep Brain Stimulations were less available, at least in Germany, when I was researching. Electroconvulsive Therapy has been modernised and in its current form it is not what many people imagine. It is safe, painless and is no longer the horrific experience many imagine from the mid 20th century. I was open to ECT but had a strong, intuitive feeling about Ketamine.

I bought and forwarded a copy of the research paper out of Yale’s Psychiatric Department, Yale University School of Medicine, “Ketamine and Rapid-Acting Antidepressants: A Window into a New Neurobiology for Mood Disorder Therapeutics”, published January 2015 to my doctor.

pixel_march2015

During this period I experienced the worst side effects from Jatrosom/Parnate (the MAOI) since my earlier dabble in antidepressants 2001-2002. I was intensely cold all the time, having to wrap myself in layers and blankets even though the heat was set at maximum volume. I had high blood pressure, a common side effect, and would get dizzy and nauseous whenever I stood up from when I had been sitting. I had to check my blood pressure constantly and keep records to ensure it never reached dangerous levels.

I was so cold, so miserable and unable to interact with the outside world even more than before. I’d bury myself in blankets and hide out underneath them. Literally in a fetal position, tucked away. I did this everyday for several weeks. My beautiful, wonderful dog, Pixel, beside me. He gave me enormous love throughout his life but really stuck by me at this time as if knowingly. No matter our walks were ever shorter, he patiently stood, rather laid, by me the whole time.

Somehow I was able to continue drawing during this time during various hours in between the chills. The drawings below are some from that time.

Finally just before Easter, 2015 I could take no more. In Germany, religious or not, many people use Easter to take a week, sometimes more, off from work. Much like Americans do during Thanksgiving.

My doctor was going on a long break. So it seemed, to me, at the time. I guess, now, it was maybe two weeks, I don’t remember. Since she was my only bridge to the outside world 2-3 weeks of no contact, even if I couldn’t speak much during sessions, was unimaginable. It was all I could do to walk Pixel to the end of the block and back, and somehow, feed myself. The thought of no human contact, however small, was unbearable.

During our last therapy session, before my doctor’s break, we were both at our own ends on my situation. My doctor was upset she could do no more for me, within her own power, at the time.

I was just at my end, period. I asked about the possibility of Ketamine treatment. It’s still an approach in Germany only used by select university research hospitals, or it was at the time.

My doctor was unable to prescribe Ketamine as it’s simply unavailable on the regular market. Still, I needed something, some indication of moving forward. Especially before the long Easter break.

I vividly recall her saying “I can’t prescribe it!” (meaning Ketamine) in exasperation.

To which I replied, loudly, “I CAN’T WAIT ANYMORE! I CAN’T FEEL ANYTHING!”

The only option was hospital at this stage. There was nothing more to be done except with daily care, therapy and medical help beyond standard therapies.

As it goes in Germany, via health insurance, I was given a form by my doctor informing the ER about my condition and her recommendation. I was instructed, in my doctor’s absence, to go to the ER. Not just any ER, but the one I had found to offer the Ketamine treatment. The only one in Berlin, and northern Germany.

I went to the ER at Charité in the Berlin borough of Steglitz. I met with the psychiatrist on call for ER who told me there were no beds available in the clinic at the time. They would call me as soon as there were. Maybe a couple weeks.

A week later, I received a call from the doctor who would be my psychiatrist at the clinic. Since openings are rare, there was no time for delay in my acceptance/decision. I’d go in the next morning, arriving at the dreadful hour of 8:30.

 

 

 

 

4 thoughts on “The Drugs Don’t Work

  • Reply Carl White October 30, 2016 at 12:30 pm

    Oh Jennifer, I hate that you had to go through this horror. This blog made me cry for you. What a horrendous experience. Again, you are so brave for revealing such painful memories. I am so incredibly thankful that you made it through. Always remember how much we all love you. Keep up the good fight, Jennifer. Miss you. Hope to see you soon.
    Love from your brother, Carl. xxx

    • Reply jennifer November 1, 2016 at 8:27 am

      Thank, as always, Carl. I’m grateful I have you as a brother as well as M. Love you. xx

  • Reply Hospital: First Few Days | BionicFarmer November 19, 2016 at 11:58 am

    […] Previous related post: The Drugs Don’t Work […]

    • Reply jennifer November 25, 2016 at 8:50 am

      There was a stretch of time between when I first began my sick leave (Dec 2013) and when I simply couldn’t concentrate long enough to read a single sentence. Before I got to that stage I spent months researching online wtf to do or could be done. Hence the list ‘Depression Resources’ in the right nav. The books, I downloaded Kindle versions for. Grateful for that immediacy otherwise I’d have to order them from Amazon UK or US and with the delay… I’d probably never had bothered.

      I don’t know how I did that but at the same time it allowed me to understand other peoples experiences, more of the science behind the illness and of course, alternatives. I found it fascinating and became slightly obsessed to learn more.

      About the diet, I didn’t really consider implications. I had no appetite and couldn’t enjoy food for so long, any diet restrictions that healthy people might have cared about didn’t matter to me.

      Regarding the storytelling. I guess it’s funny I don’t think of this as confessional, though, of course it is. I don’t feel like I should be on Jerry Springer or anything 🙂 About the narrative or style, I imagine it’s tied to the fact I spent a couple decades designing experiences and in so doing, told stories and narratives as part of the process. Feels the same here only thing is it’s my own story.

      Thank you as always, Steve, for your feedback and engagement. I really appreciate it and it means a lot to me.

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