Thursday, July 26, 2018

Look Ma, No Meds

It's been a while since I've written. I've been going through some stuff, both enjoyable and .... less so. I was traveling to Spain, which was amazing. I was in a car accident that possibly totaled my car (I'm ok), which is not amazing. But mostly, I've been titrating down on my medication. I've been doing so since January, with my therapist/heath care team overseeing it every step of the way.

I'm decreasing my meds for personal reasons that I'm not ready to share yet, but I will say that it has nothing to do with my mental health. By which I mean, I'm not decreasing them because my health has gotten so much better that I don't think I need them. On the contrary, I have a lifelong condition and I know that one of the only reasons I feel relatively better regularly is my medication. Nor am I doing so because of anything wrong with my meds, or because I've become one of those people that thinks medication is evil and makes me a "pawn of the system".  Far from it.  Medication has most likely saved my life, and despite the nausea, dizziness, disorientation, numbness in my tongue and lips, and my personal favorite, the never-awkward intense night sweats, the side effects of my meds are not all that bad - especially not compared to I feel when not taking them. But I have my reasons, and they're good ones (at least I think so), and hopefully one day I'll be able to share them. Just not yet.

Still, I wanted to share my experience of decreasing meds, as well as some tips and some real talk, in case you find yourself in a position where you need come down off meds, either for prolonged time, or in order to switch to something else.

First a few (possibly obvious but important none the less) tips:
  • Work with your therapist, psychiatrist, anyone and everyone involved. Do not attempt to decrease your meds on your own without professional help (caveat: I'm saying this for maintenance meds, not things you take as needed for specific symptoms one-off style).  
  • In working with these professionals, set up a timeline from the beginning (obviously if you have to switch off for emergent reasons, this isn't always possible, but do your best).  Plan out the trajectory of your decrease before you even start, so that you know you're giving yourself enough time. Build in leeway in case you need to slow the decrease, or pause at any point.  
  • Set your boundaries ahead of time. If you have experienced things in the past that are giant red flags of your health decreasing, note them. If there are things you just flat out aren't willing to go through in order to decrease meds, be honest with yourself and your therapist (and anyone else affected) from the beginning. They can serve as your markers for "this is going too fast, I need to slow down/I need a different approach/I'm not ready to do this right now".
  • Document how you feel. Everything, even if you're not sure if it's related. If every time you downgrade a dose you notice xyz, make note of it. It may be a coincidence, but you never know. Share these with your health professionals. Look for patterns. Remember, you know yourself best. If something doens't feel right (besides the obvious fact that you're decreasing meds and may generally feel worse), then voice it.
  • Try to keep everything else as routine as you can. This way, the only thing massively changing is your meds. Try to get up and go to bed at the same time. You may need to adjust your sleep patterns slightly  - i.e. going to bed earlier if it takes you longer to fall asleep, giving yourself more time to get going in the morning etc. But do the best you can to keep things routine.  Make a note of any adjustments you have to make, so you can find the balance that feels best (and I use that term relatively) for you.
  • Have a support team, and build an emergency plan. Have "life lines" in place - loved ones that you can contact if you have suicidal thoughts, or are feeling extra ill and need immediate support. If you can, involve your loved ones, especially spouses/partner, in your overall plan. If they know what to expect (at least theoretically), and understand what you might be experiencing as you decrease, they can both be there to support as needed, and look for signs of particular concern.
Now, some less-pretty but solidly real pieces of info:

  • There are going to be days where you feel like absolute shit. I mean, if you felt completely fine without meds, you probably wouldn't be on them, right? So naturally, as meds go down, the feeling like crap factor goes up.  This is totally "normal", for lack of a better word. So don't be discouraged. I'd venture to say virtually person going off meds for a reason other than "they no longer need these meds" is going to feel some ill effects. This is even true if you're going off meds because they aren't working well. You're changing up what's going into your system - it's going to affect it, especially at first.
  • There isn't much pattern to the better versus worse days. Right after each decrease, especially if it affects your sleep, you may notice a significant change. But then you'll have a day where you actually feel pretty OK (at least speaking from my experience). Or two, three, five. And then bam - another feeling like shit day. That's the nature of the beast, especially if you're mood cycling.... because... it's cyclical. And that is going to become more pronounced as the meds decrease.
  • You may well experience hours/days/weeks/months where you think, "how the hell did I even exist before I was on medication". I certainly did. I wondered how I made it through growing up, college, grad school, and general adult hood without the meds. Because we can still have really rough days on them (they're a treatment, not a cure), it can become easier to forget how even more terrible it felt without them. You're going to feel like there's no way you can do this. That if this is how you feel with a small decrease, how can you possibly continue to decrease, let alone go off of them all together. Again, totally normal. (Note: Listen to your intuition on this. If it really feels that you cannot, that it's dangerous to you to keep decreasing, talk to your health professionals. Especially if you experience suicidal thoughts). 
  •  There may be days that you fail to recognize yourself. On these days, you're going to need extra self-love and self care. These are a crucial part of the process. You may need more time to get things done, or more frequent times to rest and take time for yourself. Coming off meds is seriously difficult, and takes a tremendous amount of strength. But as with anything that takes strength, it can be exhausting. It's extra important to take care of ourselves during this time. This is where involving loved ones in the process, to have them help you out with things around the house, errands, tasks, etc can be huge. If you build this into your plan, you allow yourself extra time and energy for self-care.
  • If you're a mood cycler, or struggle with anxiety, you'll likely experience too much energy. "Too much energy?" you might say if you've been in a depressive cycle that makes it tough to get out of bed. And I get it, it seems impossible. But yes, too much energy. Our meds can, at times, make us feel sleepy or sluggish. As you decrease, you may notice you have more energy, don't hit that 2PM slump during the day, need less sleep at night. But this can quickly slip into mania or hypomania (if you cycle). Or all that extra "energy" may be the nervous energy of anxiety. You can go from feeling "wow I don't actually need a to crawl under my desk and nap" to not being able to concentrate, feeling anxious, jittery, on edge, and worse pretty, quickly. Keep just as much of an eye out for this as you do for increased depression. 
  • There may be days where you actually feel pretty damn good. Not (hypo)manic good, but just good. Like a person without mental/chronic illness would feel on a daily basis.  And it's super tempting to think, "wow maybe I don't need meds anymore!" And if continues, by all means, revisit the issue with your therapist/psychiatrist/health professional. But more than likely, you're just having a good day(s). That's all part of mood cycling and mental illness. Even off meds, I'm not cycling up or down every moment of every day. I'm not anxious every breathing moment. My advice is, don't overthink it. Simply enjoy feeling better for the day or days or hours or whatever it is. 
Today is my first day without any meds at all. I took my last (extremely lowered) dose yesterday around 2PM. So as of this writing, it's been 24 hours. I'm actually not doing terrible. I have more energy, focus can be tricky, but I'm hanging in. On the plus side, I don't now have to pack extra snacks for random times so that I can take meds (I mean, I still do, I love to eat, but I don't *have* to). I also don't wake up in the middle of the night looking like I went for a swim in my sleep. So that's sexier less gross. But most importantly, I'm still here. I have even laughed and smiled today. I've texted with friends. I'm looking forward to spending time with my hubs and my dog this evening. I'm hanging in. I know there will be tough days, as there always have been, but I'm making it through.

If you are contemplating decreasing your meds, or have to decrease your meds, or are going through this right now and need to vent, please, reach out. I may not have your exact experience with your exact medication, but I have gone through it, and come out the other side. I'm here for a vent, to be a shoulder to lean or cry on, or to give advice where I can. So please, if you need, reach out. I'm always here to listen.