Tag: maoi

MAOI Wowee!

A Scarlet D1 Comment

I can’t remember the last time I felt this physically horrible, excepting legendary hangovers of the past. Perpetually awake, the insomnia just drags me through the night. Occasionally sleeping, only to awaken – wide awake for who knows how long. And then I wake up bright and early. Despite my near-legendary ability to sleep in and get back to sleep whenever I want, when I wake up I am awake for good. With tension, headache, and pressurized psyche.

This week I started my first MAOI, Parnate.

Monoamine oxidase inhibitors (MAOIs) were the first type of antidepressant developed. They’re effective, but they’ve generally been replaced by antidepressants that are safer and cause fewer side effects.

WebMD, I think

It’s the nuclear option of depression meds. There are so many side effects, bad interactions with so many meds, and a restrictive diet that reads like my shopping list for a weekend with the wife out of town. Hot Dogs, bacon, many cheeses, bologna, sauerkraut, pickles, caffeine, alcohol, and so on. They’re not completely off the menu, but if I eat the wrong food, or too much of one of the possibly-wrong foods, or just a randomly bad food, my blood pressure could go all the way up. And then I have some seriously horrible pain and problems. In the meantime, if the food doesn’t get me, I enjoy low blood pressure. Like, actually too low. Which brings lightheadedness, dizziness, confusion, dry mouth, and such. Not to mention the possibility of Serotonin Syndrome. But that’s all just a sample of the litany of complication that is an MAOI.

I was already rocking the dizziness and a world of other junk, but this latest med has brought insomnia, a tension in my neck and shoulders that I haven’t felt in years, headaches, nausea, and some complicated “side effects that might just be in my head.”

Regardless, I feel wound up. I need to remember to take the deep breaths. My stomach is a knot. I’m waiting for the next thing. Could be nothing, could be passing out, could be many things. I’m sure I’ll relax a bit as time goes by and I don’t actually keel over. Until then, I feel awful, on a path to hopefully feeling mentally better. Despite the insomnia, I’m wide awake half the day, then drowsy fatigued until mid evening when insomnia jitters kick in. Sleep, energy, and appetite may improve with 2 weeks. Mood, depression, anhedonia may need up to 6-8 weeks to fully improve. That sucks.

In other news.. I’ve had my last session of ECT last week and I don’t think I’ll miss it. I love going under the anesthesia, and getting a great noontime nap. But not the confusion, memories being erased or dizziness, etc. I had my second to last Ketamine session, I think. That I will miss. But I have to admit the last two sessions were.. weird.

And finally, in a week and a half I get a mental pacemaker installed. That could take up to a year to see benefit.

It’s always good to end on a high note, or a funny note. Leave them smiling. Sorry, not this time. My mood is still not great – just more jittery – which doesn’t make things better. When I’m depressed, all of the many many things we do through our days are grueling. But if I hit a roadblock – Hit my head on a cabinet, spill food, pick up my phone and not know why – there’s an internal meltdown. And if I could, I would allow that internal meltdown to use the dangerously loud voice, to kick something hard, to put my fist through a wall. But I can’t do those things, so they just kind of sneak into the depression and make it all seem worse.

And then there’s the suicidal ideation. They ask me how it is and I prefer not to give a solid answer. It’s .. different. I’m safe. No plan, no intent. But you know what? I have hope. Hope that the surgery goes wrong. Hope the meds clash and cause me to drop dead in an instant. Hope that I’ll go away and I won’t hurt any more. But I guess the point there is that I’m hoping for fate to do something to me. I’m not thinking about how I could do it myself. That’s an improvement, right?

I have filters for everyone. Back to the classic “how are you” question – that’s a great example of the filters. A friend asks? I’m ok. Doctor? I give a bit more detail. Therapist? She gets pretty much everything, just one tiny step up from my wife. Whom I love and sometimes will hold back on the really painful stuff because I don’t want to hurt her. And yet I know how bad that sounds.

My therapist, who I “see” on Thursdays, got a really long answer to how I am. She asked some interesting questions this week, though of course I can’t remember them. But after I talked about My Morbid Hope (good band name) she started asking some very subtle, very well covered questions. I talked about how I had just started the MAOI, etc. And finally she asked me point blank about whether I had any plans or intentions. And through all of this, she’s never called me out to see if I had a plan, or if I was considering acting on it. Which I wasn’t. I figure so much is messed up with meds and therapies, I’m taking time off from thinking about how I can die. But I’m keeping an eye out for nature.

Who was I?

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  • I was middle aged, lightly active and physically average.
  • Which is to say, I could walk five miles around a local lake without any difficulty.
  • Quick to kid, always ready with a joke or a pun.
  • Mind like a steel trap – able to remember the smallest details, people, places and things.
  • Self taught, learning a new profession and trying to grow independent business.
  • Quick with technology, able to suss the functionality behind a new technology, often very quickly.

You know how your dad knows how to do all that? How he can walk you through that task or experience? I was able to do that. And I was quite proud to be able to help my family.

I’ve since had a full run of acute bilateral ECT, three times a week for four weeks. I’m also getting weekly ketamine experiences. I’ve done the ECT before, and in the past found it affected my memory, making it hard to remember things during the acute month. I had TMS with little to no memory impact. I’ve also had countless hours of talk therapy, group therapy at least weekly, and regular appointments with my psychiatrist to discuss physical options. These include a VNS device, MAOI patches, etc. This makes remembering anything tricky. I need to be on point with my note taking abilities, to avoid forgetting something straight away.

In the past, I was able to roll with the punches, just take memory issues in stride. For the most part, this experience has been much the same. Until one day a couple weeks ago in which something changed. Maybe not changed, but became estranged to me. There are times where I have to figure out if I know what’s going on, or am I learning something again? I was okay being in a situation in which I knew I either had to do some catching up, or maybe using memory aids to keep going with a task. I think what happened was that I started having more of these situations, and had to experience the re-discovery of what’s going on – and it was happening more often than not, or at least enough times that it became a normal part of my routine. So it wasn’t an odd happenstance, it was a regular situation to be in.

As a result, things are just generally a little fucked up. I no longer know everything. I am no longer able to just try something out and figure out how and where do it well. I can’t just drive somewhere. I need to drop the destination on my phone and be led that way. Even in a route where I know where I’m going and/or each part of the journey reveals the next leg of the trip – even those routes will provide me with times in which I don’t know where I am, or which direction to head. And actually, I need the track saved so I can look back and understand where and when I have gone before.

Today

I find myself beginning to tell a tale I know well. Or express an opinion. But mid statement, I hear the energy drop out of my voice, and the confidence disappear. I finish what I was saying sheepishly if I can remember what it was. I find myself in situations where I’m not sure why I came to be in that place, or don’t know who or what is going on. I don’t remember people, places, or things. I’m quite good at vague generalizations to cover for these situations, and I use those tools quite often. The simple locations of buttons or controllers for something in the car, or a technology item in the house. I can see it and understand the functionality, but have to rediscover the utility.

I’m still trying to figure out how to highlight these situations, or explain that I don’t remember how to do something I know was used to be able to do, or explain to someone that I know that I’ve forgotten their name or role in my life.

I have begun to employ different tactics and tools to compensate for my failings. If it’s anything I can get support on my phone, I’m all over it. Google maps, or Facebook information, or even my “sent” mail and saved items, and some bookmarks. I transitioned to a professional password/security system a couple years ago, so remembering passwords isn’t an issue. But many of the things I used to use to verify my information, or travel distances and times in order to estimate arrival times. Complementary tools.

What do I expect to have completely lost? Anything during the acute timeframe/month is fair game, I suppose. Or specific appointments – I can use MyChart online to plan for and reconcile my upcoming activities. If it’s important, I work hard to take notes so even forgetting can be worked with. I’d love for all memories to come back, but hope at least the more unique adventures can be retained – or even just have enough information on it that I can recreate the memory in my mind.

There’s really no upside. Or is there? I suppose I can chalk up anything forgotten, and attribute it to the ECT. It’s also making me approach some situations differently. I need to be more open minded, flexible in my tactics and ready to change plans on short notice. My wife is much more attuned to my flaws and foibles. That’s extremely helpful. But there’s no living my life as I used to, not for a while. I’m not sure this time I’ll be able to go back completely to the “old me.”

Finally, in trying to keep in mind simple wins and accomplishments.. In the past week or so I:

  • Drove to Iowa /w Wife to get child
  • Finished a 1000 piece puzzle
  • Continued work on a cross-stitch project

So I am still capable, just in a very different style and in more of a reactionary way. Though I am concerned about the issues, I can also see little things getting better or easier with time passing. And technically I can enjoy things more than once.

But every time I find something missing, that adds just a bit of fuel to the depression fire. I’m hoping it will happen less and less and eventually I’ll forget about the forgetting…

Driving to Distraction

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I haven’t been driving, because I’ve been in the acute portion of ECT. That is, until last week. This week I switch to maintenance ECT once a week. And we’re gently re-introducing driving for me.

Our eldest child is a senior in college in Iowa. And she does not drive, so in the past I’ve driven down there, picked her up and driven her back to Minnesota. At the end of the spring break or holiday or whatever it is at that time, we reverse the procedure. Point being I get a ton of driving time, which I love — and I tend to take wandering, meandering detours just for fun.

Since I’ve been finishing up the 3x weekly ECT sessions, I’ve not been driving. The sessions have left me exhausted, disoriented, and have been erasing certain memories. There have been many times where the wife is driving and I’ll have no idea where we are. I’ve just forgotten whole parts of the cities. So that’s why we’ve been cautious. On this trip, however, we eased into it. Wife drove out of the cities, and at the first gas stop we traded places and I took a shift driving.

Parts about driving that are actually hard:

First of all, understanding where I am. If I have the phone guiding me, that’s fine. But modifying the directions or destinations, etc. is well out of my control. This used to be something I managed to do quite well before. For now, though, making any changes require pulling over to do so. The phone is still confusing and takes some serious thinking to be able to figure it out. And I’m doubly no good with distractions. Generally if I have to take focus away from one task to look at another both tasks lost quality.

The physics of driving are fairly simple, but for the first hour or so I felt like I had to work really hard to keep in my lane, not cross over any of the lines. As the day went on I relaxed and could “feel” where I was more clearly. The physics of speed came into play, as well. The phone can clue me in to the actual speed limit and show me my own speed right next to it. So the trick was to get to the right speed, and then set cruise control during the long straight bits. Add in the extra detail of being over the speed limit by X mph, what’s appropriate, what’s too fast, where the speed traps are, etc.

Finally, working the “all around” mechanism of driving, all of the above combined into one ball of driving and being able to spend the right amount of attention on the specific skill that needs it. So it’s a bit more exhausting, always trying to figure out what happens next and how that happens. Even the buttons to open and close and lock doors, or the Bluetooth connection to be able to play something simple and calming in the background, they’re all memories I need to re-make.

Political Elements:

What went wrong that could prevent me from driving? Nothing, so far. The personally imposed driving restrictions are more closely tied to the ECT sessions. During the acute (3 sessions 3x weekly) sessions, it’s overtly stated that I should not drive. But now that we’re starting the “maintenance” ECT sessions, how does that impact my restrictions? What could go wrong? Well obviously if I’m under an influence (ECT, Ketamine, Anesthesia) I shouldn’t be driving. But those days between? This week we went to Iowa to get the oldest child. Normally I would do it, but this time Wife and I both went. I got behind the wheel after a petrol stop, so I could ease myself back into driving on the long and boring straight roads. That went fine. I will say, though, that the learning curve is pretty good, but it’s there.

Openness and honesty is important here. I’m trying to build up trust in my ability to drive. Just how much detail to I have to divulge to the wife? How much does she sense – in fact what does she sense or observe that I don’t even know? Do I need to exclaim at every headspin? Call out any missteps I take trying to put on proper shoes? Do I need to equate all of my emotional hardships? Or can we just suck it up and get back to driving? Somewhere in the middle, I guess, so I can keep Wife informed, but not be too noisy about every little ache and pain.

I enjoy driving alone, and that is sometimes very therapeutic for me. How much truth can I bend to make that happen? I don’t think I need to bend any facts or sugar coat anything. Everything thus far indicates that this slow re-introduction and my driving in the last few days have been useful for reorienting me, and hopefully opening me up to driving anyone.

The future of driving:

Where does this leave us? Unknown. There are a lot of moving objects. Getting the VNS installed, frequency and duration of both Ketamine and ECT, the maoi patches and whatever else I get into this summer. These things will have to keep us re-evaluating my driving abilities and permissions at least all spring.

In the back of my mind an occasional thought pops up before being promptly forgotten: How will this affect my summer scooter riding?

Bottoming Out

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This week has been one of the toughest. Ever.

First, the MAOI – the patch isn’t really helping, so we’re likely going to go over to the oral form, which includes the dietary limitations. This includes items with high tyramine. No, I hadn’t heard of it before either. Things included on the no fly list:

  • Aged, cured, pickled, or smoked meats (such as chorizo, sausage, corned beef, salami, and pepperoni)
  • Pickled or smoked fish
  • Some aged and matured cheese (such as cheddar, gouda, and parmesan)
  • Fermented soybean products (such as miso, tofu, soybean curd, and tempeh)
  • Fermented or pickled foods (such as sauerkraut, kimchi, caviar, pickles, and kombucha)
  • Fermented bread, like sourdough
  • Breads with aged cheeses and processed meats
  • Tap beer
  • Any food that has gone bad, or is overripe

With the exception of the last item, this is a list of some of the foods I love the most. It reads a bit like a shopping list.

I have begun ECT (electroconvulsive therapy) again. Three days a week. Monday was only at 30% and it was hard to handle for the rest of the day. Tuesday was ketamine, so I was trashed after that afternoon visit. And Wednesday was at 60% (we’ll end up at 100% eventually) and I felt every bit of it afterward. My memory went from goldfish level to rock. Thoughts that used to come to me long enough to note them or take them on are now fleeting. Leaving me with a feeling of loss, confusion, concern that it was important, and sadness. I’m confused about things I thought were second nature. I can’t remember which pocket I usually use to keep my phone. My appetite has gone completely south, nothing sounds good and more often than not tasted like cardboard once I try it. And a deep sadness has settled in, knowing I’m not at full strength and I have weeks of this to go.

The ECT process is the same as before, with the exception of the waiting. Last time they had a tiny waiting room (10 chairs?) that had to fit the patients in line, plus their family or friend helper. It was fairly loud, though part of that was the 24×7 home improvement shows. Wife hated Mondays because that’s when the new batch came in, and you could feel the anxiety rolling off of them in waves. I just remember feeling like I was with my people. Now the waiting area is down by the TMS area, and there is a nice huge waiting area with comfy couches. The old waiting room as turned into the “wake up” room where they wheel you after you’re awake but before you have any idea who, where, or what you are. And we still get mini blueberry muffins and juice. Which is nice. So the whole process is easier, more comfortable, and well done. Also, there is still the pre-procedure interview to check that you haven’t taken certain meds, take your vitals, and do a quick check in on your mental state. In the old waiting room you would do this in front of the whole crowd, including the “are you safe” questions. Now they have a proper exam room and it feels more professional.

On the mixed bag side: The external review for my VNS (vagus nerve stimulator) has finally approved it, and things are now moving. Have an appointment next week for the surgical consultation with a neurosurgeon, and it sounds like COVID hasn’t gotten in the way of operations at the University, where this will be done.

Again, the VNS has a surgery to implant a little box the size of a matchbox just below my clavicle. They’ll also attach a wire to my Vagus Nerve. After two or a few weeks of healing, I’ll go back to my doc at the treatment resistant depression clinic. He will activate the device and program it for my introduction. An example would be every five minutes the box sends a 30 second impulse to the Vagus Nerve. Forever. No immediate results, it could take weeks if I’m lucky, but more likely months or a year to see benefit. So the VNS update is good news but intimidating and scary.

After much discussion, we have moved the consultation with the Mayo clinic out a month. Not sure if I mentioned it before, but I wanted a different perspective, with their unique patient engagement. Also, my grandfather was a (chief) neurosurgeon there, and my mother was Nurse Ratched the head nurse of the locked psych ware there in the 50’s. (I’m sure she was very nice and not sadistic.) But given the way ECT has done a number on me this week we’re going to wait until I’m a bit more lucid.

It’s a turmoil of therapies and appointments right now. If we keep it up, it’s going to suck. If we stop it’ll suck and I won’t have a method for improvement. But it’s hard nonetheless, and Wife and I are both feeling the strain.

I know the ECT will stabilize, and everything is going as planned. But yesterday I began questioning whether I was actually going to survive this major depressive episode. And that I’m not in control at all. Those are unsettling thoughts. (Yes, I’m safe, and I’m well supported)

MAOI

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I will preface this with the fact that this is a catch up post, and the latest “real” post is coming next.

Started the emsam patch, an MAOI. It does not have the usual dietary restrictions, but any higher dose they switch me to will have them. It reads like my grocery list of favorite foods. No ill effect from the patches so far. Sometimes they leave a red mark, and I change locations enough that it doesn’t get too bad. I was working on a series of red blotches from one bicep to the other, across my chest. Didn’t quite get there. On ketamine days I usually go “iron man” style with the patch right in the middle of my upper chest area.

I am back to full strength on my sleep med, and the vertigo has returned with some additional random dizziness. But I’m getting to sleep eventually. Forgot to take my night meds one night and was wide awake until near-dawn. That was a hard day.

Therapist says I need to buy in. believe, and try. Fight, even. And I understand that. But to be honest I gave up caring a couple weeks back. This is me forever and I can’t find the physical strength to fight it. I’m just like a weed in a stream, totally letting the current shape me.

I have finished the intensive outpatient program, and finished with complete therapy burnout. So now my structure is much less, which means I have to come up with my own routine and somehow gather the self discipline to stick to it. I think we all know that’s not going to happen easily or soon. But I’ll try.

Talking about everything with family, friends and therapist feels good but usually sends me deeper. The more I talk about the depression or focus on it, the more I feel it. It does feel like not talking about it and just doing a hobby is avoiding the issue, but sometimes I think I need that.

Finally, every moment of the day in my head I am saying “I’m sorry I’m sorry I’m sorry” to everyone and everything. I feel guilty for making Wife go through this with me, as well as my whole family and network of friends. I feel like I am a sinkhole of emotion and resources.