Akathisia: Series Finale

 Hi Friends,

Welcome to the finale of the Akathisia Series. I hope you have learned a lot from my diligent research. I sure have. 

Just a couple days ago, another celebrity suicide made the news. Stephen “Twitch” Boss, who was the DJ on the Ellen show, and other places, and also a talented dancer, took his own life. No one saw it coming. He seemed happy; he had everything anyone could want including a happy marriage & 3 small children. He was 40 yrs old.

I have no idea if Twitch was on any medication or if he had any history of depressive disorders, but of alllllll the celebrities out there, I would’ve pegged him as least likely to commit suicide. Hell, I would’ve guessed Ellen before him. So…I have questions. As the dust settles, I will look into whether or not Twitch was taking any medication & if his family noticed any changes in his behaviour.

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Friends, I want to talk about something I haven’t talked about in a long time — my old neighbor Bruce.

You all remember Bruce as the guy I lived next door to from 2005 — 2012. He frustrated us from the get-go with his early morning cacophonies. He would be up before the sun, ranting & raving in his yard before he could turn on all his power tools at 7. And believe me, he could hardly wait. Sometimes he cranked on that table saw or lawn mower at 6:59 a.m.

He caused me much anguish, because that was the house where I was to become a mystical, peaceful, happy, poet, writer, musician & artist. I was going to start my new life there! That home was supposed to be my sanctuary from people just like Bruce.

But Bruce was there, all day every day, a constant drone or buzz or drill or shriek of activity. Always moving, always shouting at his kids, always busy with tools. The very embodiment of hyper-active, anxious, industriousness that I just chalked up to his being German.

But what I’ve realized is — Bruce had akathisia! Why do I think/know this?

Well, I always wondered how the hell one man could have SO MUCH energy & angst. I always wondered at his pushy, aggressive antics toward everyone. How can one person be busy-body enough for a whole neighborhood?

The more I learned about akathisia, the more I understood Bruce. Now, Bruce’s akathisia expressed itself in a very unconventional way. Most people kind of isolate themselves when they feel as badly as akathisia makes a person feel. But Bruce shared his misery with everyone; he had to make sure he was seen & heard being busy & productive & industrious.

I also happen to know that Bruce was on Lorazepam (Xanax) because sometime in the Fall of 2009 —during the Karaoke Wars— I found a bottle of his medication by our conjoined mailboxes. Regrettably, instead of putting the bottle in his mailbox, I took it inside & threw it in the garbage!

At the time I really hated Bruce ( & I kind of still do; akathisia or not, he was atrocious to live next to). I felt like throwing away his pills was a great way to make him suffer. And boy, did he suffer! I’m pretty sure he started drinking again when his Xanax went missing. I don’t think many folks (even professionals) knew much about akathisia in 2009.

quintuplets on Ellen!

We tried everything to get Bruce to respect our boundaries. We spoke kindly to him, we yelled at him, we called the city, and finally I launched the Karaoke Wars. But Bruce couldn’t stop being anxious & tormenting everyone around him.

I find it very ironic that the “medication” I started taking to deal with Bruce’s intrusion — my “green muffins” — were the thing that originally gave me akathisia.

So Yeah…I wanted to mention that tidbit of circular history. There really is a lesson in everything if you pay enough attention. I can look back & have some compassion for Bruce (& his wife & kids especially). It sucks that he was suffering. It sucks that his suffering made me suffer. It sucks that I suffered the same fate in the long run.

But at least I have some answers & closure re: that big fucking mystery!!

when i tried to draw w/ stripes instead of dots!!

Here are some links to some very pertinent akathisia info. If you google ‘akathisia’ it’ll just tell you it’s a feeling of intense restlessness. But I can’t emphasize enough that it is much more than that. I hope these links give a clearer picture:

The story of Louis, who died in Sarasota the same year I was suffering from akathisia the first time:  

https://www.youtube.com/watch?v=wsptXjhAXYc&t=252s

The story of Jill Nickens, founder of Akathisia Alliance. Jill got akathisia from opioids (remember when I said alcohol & opioids were the only drugs that didn’t cause akathisia? I was wrong):

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

The story of Jordan Peterson (yes, I hate his philosophy, but man I feel horrible for the hell he went through):

https://www.youtube.com/watch?v=HLWgVpmo1e0

Info from Lauren, who has a youtube series called Living Well with Schizophrenia:

https://www.youtube.com/watch?v=oQ1zjPZWnHQ

The Akathisia Alliance facebook page:

https://www.facebook.com/akathisiaalliance/ 

The MISSD website:

https://missd.co

And here is a poem I wrote about my original experience with akathisia (I think Terrorexia Nervosa is a much better name for it):

http://www.crowhollowbooks.com/murder-three.html

THE GOOD NEWS IS…??

 FRIENDS!

Hi, I’m back. And sorry I had to give you the bad news first. Also sorry if I rambled a bit about my medication dilemma. I know I’ve probably been repetitive re: my journey on & off of psychiatric medications, but I feel like I’ve learned a lesson or two in the past 8 years and, as always, I like to share that here in the Octopuse Diery.

One thing I may have done wrong was to taper too quickly off the SSRI. I did a month-long taper & I could’ve made it 2 or 3 months. At least that’s what I would advise for anyone else who wants to try tapering off their meds. Go Slowly!

Also I should’ve not assumed that because I had all my medical needs established in Sarasota that those needs would just “transfer” to Jasper IN (or any other location). I should’ve been more proactive in securing not only a general physician, but a psychiatrist and endocrinologist. The system doesn’t just “believe” patients. Or even their medical records. Each “medical group” is a system unto itself & they want you to follow THEIR rules, not what your doctors in Sarasota advised. That was just wishful thinking on my part.

So, I’m much more clear-headed these days. My thoughts & moods have slowed down to a manageable speed, though I still have to “manage” a bit of rage & sorrow (& even a little akathisia on really bad days). But I am able to do that better than I was in Oct/Nov.

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Now let’s talk about Cannabis. I’ve used cannabis (THC) in several forms over the years. Often I was self-medicating to ease work stress, or other life-anxieties. And cannabis was MUCH friendlier than alcohol in this regard. So I, like many people, thought of THC as a “harmless drug.” Even smoking it seemed much safer than ingesting alcohol. I still believe this to be true.

But I would NOT say that cannabis/THC/marijuana is a harmless substance.

My first round of akathisia, in 2014, I now know was caused by cannabis use. 

THE GOOD NEWS IS: I didn’t get akathisia from SMOKING weed. I got it from eating it.

That’s right folks! Edibles are more dangerous than smokables or vapables. At least when it comes to getting akathisia.

From late 2011 to sometime in 2013, I used to make “green muffins.” We thought that ingesting our THC would be safer in several ways — no lung damage, and also no legal ramifications from living next door to the uncoolest neighbor ever [BRUCE (you remember him)].

And this worked out great. I forget the exact recipe I used, but each muffin had about a full joint’s worth of THC potential. So I would eat one in the morning, go to work, become high at small intervals that made the day super enjoyable, and become unhigh right about the end of the day.

After about a year of that, we moved to a new neighborhood & I stopped going into the office & worked at home. I kept making muffins & eating one each morning, but I also started smoking again. At  the end of 2013 I realized that A) I was pretty chunky around the middle from eating a muffin-a-day B) I wasn’t really getting high anymore. I could smoke & smoke & just barely get a buzz.

So my New Years resolution for 2014 was to quit smoking/eating muffins. I quit cold turkey in January and experienced some depression but nothing major. Just your usual THC withdrawals — which are fairly gentle in the scheme of things.

Unfortunately in mid-January I had a big break-up with a toxic friend who had been a source of much stress in my life for years. Breaking up with him was as drastic & violent as any romantic relationship ending. (Friend break-ups are hard, people!)

After that break-up, I started smoking again but not eating muffins. I honestly don’t remember much about early 2014. I was smoking as much as I did before I quit, but it was fine. The couple of weeks I detoxed allowed for me to feel “high” again. And we didn’t have uncool neighbors, so I felt alright about smoking. No need to add extra calories to my diet anymore.

But it was in May that I started to feel “weird.” Especially after I would smoke. I would feel anxious, smoke a bowl, and then feel even worse. That’s not how it was supposed to go.

So I quit smoking around Jun 15. Cold turkey. Just couldn’t do it anymore. It was offering no relief to what was some pretty severe anxiety in the first place. 

But as you all know (because you read my other post) things just got worse from there. The severe anxiety I was feeling was the beginnings of akathisia. The abrupt cessation of oral THC ingestion in January had reached its half-life by May. 

If you recall, akathisia happens when the offending substance is leaving your system (or is in its half-life). Ingested THC has a very long half-life. Months long, apparently.

So… 2 years of ingesting THC + abrupt cessation = 1 year of akathisia.

And that, in a nut’s hell,  is how I got akathisia for the first time.

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But I want to say a little more about the whole Cannabis/THC industry:

We were thrilled to get our “Green Cards” in the summer of 2018. There was a required visit to a medical doctor before we were able to splurge at the dispensary & I was looking forward to asking the doctor about how marijuana could help me — what amount should I smoke to ease anxiety but not add to it? What were the best strains for back pain & headaches? What were the benefits of ingesting vs. inhaling it?

Mind you, I still did not know what the hell had happened in 2014. I still thought it was some kind of nervous breakdown & that it would (probably) never happen to me again.

Our doctor’s visit turned out to be a visit with some ad guy for the medical marijuana industrial complex. He was a purveyor of fine CBD oils & was representing Dr. Grubbs. He handed us lots of pamphlets & described the difference between a sativa, an indica & a hybrid. Then he handed us our prescriptions & waved us away.

I paused & asked something medical.

He just looked at me like I was insane. “Why are you asking questions? Go! Go smoke as much weed as you want! Congratulations!”

And so we left with our pamphlets & our prescriptions & we went straight to the dispensary & loaded up on vapes, oils, capsules, cartridges, etc…etc…etc…

We were in Merry Jane heaven! We mostly stuck to vaping for the first few weeks. That was enough. Just a couple puffs would have you baked for hours! And it was supposedly all healthy & benevolent & stuff!

But there was something in the literature we received that haunted me. Even medical marijuana comes with a page of possible side effects, and the one that stood out to me was —

“Please call Dr. Grubbs if you start feeling restless or crying uncontrollably.”

That sounded scarily familiar to me. But certainly nothing like that would happen just from smoking weed? I was convinced it was totally safe. So I shoved that to the back of my brain & puffed away. 

In Oct 2018 we went to see The Breeders in Tampa & decided to avail ourselves of the capsules we had purchased at the dispensary. We had no idea how potent they would be, but we took 2 each & drank some black tea & had a magnificent concert experience!

I decided that instead of vaping through the day, I would take 1 capsule each morning. So I did that for the Fall of ’18. Then in the Winter of ’19, when my psychic safari amped up to 11, I began taking 2 capsules each morning. That was enough to take me off-planet for the time needed : ))

When the psychic safari started to wind down in Spring of ’19 I went back down to taking 1 capsule. And I continued on that regimen until the Summer of ’20, when my capsules suddenly became unavailable at the dispensary! 

This led to an involuntary detox of sorts that sent me into a pretty depressed state. I returned to vaping & even smoking flower, but remember detoxing from orally ingested THC is a long, slow process. So I felt the effects of capsule withdrawal even while I was smoking.

It also happened that in the Summer of ’20, we were experiencing a very odd, sinister, creepy dilemma in our own home. I won’t get into details, but it was one of the most trying times in our relationship.

I did not keep track of how much Tony smoked or ingested. His style was a little different from mine. He liked to have several vapes going at a time. So he would puff a sativa when he left for work, but an indica when he came home, and a hybrid on the weekends. He didn’t ingest as much as I did, he mostly inhaled.

And since he is not as prone as I am to anxiety & depression, he seemed to be having no troubles at all. We each had strains that we couldn’t tolerate. For me it was Girl Scout Cookies. Man, one bowl of that would make me so morose & suicidal. I had to avoid it at all costs. And for Tony it was Sour Diesel. I could always tell when he smoked a Diesel strain because his whole personality would change from calm & confident to insecure & agitated.

So it was obvious to me that there were some possible side effects, but only with certain strains. 

In Sept of ’20 we had an unfortunate Air Bnb guest living across the street from us. He had woken me up with his loud car muffler in the middle of the night for weeks. One night he woke me at exactly 1 a.m. and I ran out into the street in my boxer shorts & yelled at him. This started a terrible conflict which added to our stress level.

The guy with the loud car came pounding up our driveway one morning after we’d confronted him about his noise for a third or fourth time. He screamed at Tony & threatened to harm us if we ever came near his car again, then he roared away in his flatulent vehicle. We recorded it on our phones & went to the police.

But I was rattled even beyond the scope of the situation. I could barely function or think during the day, knowing the huge, loud Air Bnb stranger was looming nearby. His car was audible from a mile away & I could always hear him coming & going and it got ingrained in my ears. In my very soul.

I didn’t know if detoxing from the capsules could be causing all the extra fear & anxiety. But I did feel like I needed something to help with the unmanageable stress. So I called my doctor & we decided I should try Abilify in addition to the small dose of Gabapentin I was taking.

I had already tried some SSRIs and HATED them , so a small dose of the anti-psychotic Abilify seemed like a good alternative. And it seemed to help for a few weeks.

Then I started feeling worse. and worse. and worse. And this is the really tricky part of any medication dilemma. It is sometimes really hard to tell just what’s going on. Am I just freaking out harder because our life situation was getting more bizarre? Because the Air Bnb guy stayed on until November & kept disrupting my sleep with his farting muffler? 

Was I still suffering detox effects from the capsules? Or was I not tolerating the Abilify?

As you all know, by December of 2020 I was in full akathisia mode. It felt just like the 2014 incident, except I was much less motivated to survive it. 

While I do believe that the THC detox was a big part of my anxiety & inability to handle our life crisis, I am sure that the full blown akathisia was caused by the Abilify.

Here is one lesson I learned from the whole mess — being on multiple medications at once is often way more dangerous than being on no medications. No matter what your mental health looks like. Depression is survivable. Anxiety is manageable. Psychosis is, or should be, obvious to professionals & treatable with a minimal drug schedule. 

But start adding supplementary drugs & their side effects to the equation & you soon lose touch with exactly what you are treating.

So I lived with akathisia for the next couple months & finally after lots of desperate calls to my regular doctor & trying this or that additonal drug to “see if that helped”, she took me off the Abilify & I felt better immediately.

While I HATE that I am ONE OF THOSE people who just can’t pull themselves together, who gets all emotional over piddly shit like loud noises outside my house, while I hate my introverted, scaredy-cat, shy personality,  hate everything about how I operate in this world, my attempts to CHANGE who I am by “faking it” never resulted in anything but disappointing failure. I’ve had to learn to accept & appreciate that this is who I am.

I would LOVE to have Tony’s calm centeredness, or my mom’s outgoing personality, or my brother’s total lack of concern over what other people think of him.

Instead I have my grandmother’s mood swings. My dad’s agitated insecure personality. And I have hated myself for it for half a century. But in the 21st century we have a better grasp of what trauma does to us, that trauma is not just something that happens to combat veterans, that not everyone is neurotypical.

My grandmother most likely was bipolar, and used alcohol to medicate herself. My father probably has a touch of Asperger’s. He’s a pretty neurotic dude. And also used alcohol in abundance to treat his nerves.

My challenge now is to accept living the life I can handle. Without any medicinal or chemical assistance. Or rather with the bare minimum of that. That means a pretty boring life. Just sitting at this smart-typewriter stringing words together. Avoiding the outside world as much as possible. I have a whole lifetime of crazy experiences to draw on for any fictional, poetic or memoir-ish pursuits.

But if I am to live chemical-free, I will have to be pretty lonely. Thank Rog for the social medias, where I can socialize in writing. 

I just want to know who I am again. Am I really healed from all the traumas I uncovered in the early 2010s? Am I healed from gender dysphoria since I transitioned? Most importantly, do I have chronic akathisia, or will that eventually go away too? I can’t wait to find out.

I’ll end this long-winded revelation by saying that I am not anti-medicine. I would not have survived without some of the chemicals I’ve been prescribed. And I know that is true for so many other people. I just think we are being over-prescribed medicines that are really no safer than “recreational” drugs in the amount we are taking them. And we are staying on them for too long.

I am still PRO-marijuana. I am still thrilled that it is decriminalized, available & enjoyed by the masses (except in Indiana). But there are serious risks with medical marijuana as well as any chemical you ingest.

So…will I ever use marijuana again? Sure…someday when I’m feeling better. I will smoke it. But I will not ingest it.

Okay, folks…sorry this was such a long one. I have one more piece to write for this Akathisia Series & I’ll try to get it to you before the end of the year!