In this piece, I am going to talk about my experience taking meds to support me in managing my bipolar. Adjusting to meds is the absolute worst nightmare that you couldn’t imagine without ever putting that sort of pill into your body. Pills. Each one that does something different.
I will tell you it is a terrifying experience to deal with these meds when they go haywire and my luck comes like my personality, in extremes.
The side effects I have dealt with can be compared with what you might see as a bad acid trip in a movie.
Recently, I have woken up with migraines for the first time. These are more painful than any other headache I have ever had. They are quite blinding when I wake up and make me prefer the dim atmosphere that I have seen those with migraines prefer before. Luckily, they stop later in the day once my body processes my morning meds.
Another side effect I am experiencing, which I have dealt with often, is nausea and vomiting. I lost my “eggplant sized” infected gallbladder in 2006 when my doctor informed me it should be the size of a pickle. My stomach and entire digestive system never settled in per say and so I have this ‘new normal’ of inflammation and the sporadic, but horrendous stomach distress. Now with that background, I am susceptible to anything that makes one’s stomach go sour. Lucky me.
Now you might think those sound pretty bad, but I started with the most current issues I have dealt with while I have adjusted to new meds or med timing. I have had to do this quite a few times since I started taking meds about 6 years ago. These are the most mild symptoms I have had to deal with. Usually, I get through the day fairly easily with these and in the past, that was NOT always the case.
I have woken up and thought I was swallowing my tongue, which was legitimately swollen from a med. This was classified as one of the rarest of side effects, a marvel to my doctor. If I could talk through the giant tongue, maybe I would have gotten a better chuckle out of that one like him. If I was going to be a marvel, I would prefer to be the Hulk.
I have drooled, swelled, and had dry mouth. I had fevers and sore throats galore. You want more rare side effects? I’ve got twenty… and I’ll [probably] get more.
Lucky me. Luckily all the rarest of side effects were what I would find on the wild ride to the right meds, that wild ride back to the real me.
I have always known the ‘real me’ when I was the real me, but the thing with bipolar is you always feel you are right even when you’re the bizzaro you. Irrational feels rational to you when you are there. That is the suckful part. The lack of trust that creates for yourself is something others can’t understand.
Sometimes in an episode, I feel like I can see the behaviors I am starting and I know they are impulsive or weird or just all around creating havoc in my life. I feel myself going out of sorts. I feel my socially awkward side come out, my uncertainty with how to act around or towards others. I feel myself getting flighty or spacey, talking fast, double, triple, quadruple booking myself. I feel myself not wanting to be in a crowd, be around strangers. Saying ‘yes’ when I know I want to say ‘no.’
I feel myself getting into this overwhelming place of over-catastrophizing the simplest of concerns. Big deal, little deal? I am not sure– it all feels so big in that moment. Now that is the more manic, wild, moving side– honestly, most people don’t mind that side. In fact, that fast paced moving woman can be really fun. A lot of times this can be triggered in summer, when I don’t have my perfect, neat scheduled life.
SIDE EFFECTS (continued)
Back to those side effects, me a sensitive, medical marvel– one that orally reacts like the Hulk in distress I might add.
After that, I went on to another med that made me twitch in my sleep. A joy when you’re experiencing sleep problems as yet another side effect. Now this twitch progressed into this absolute freeze. My body would lock, legs around the body pillow I twist around my body. That is something I developed when I was in my Seroq-hell, which I’m about to get to. When you can’t sleep, you at least want your body to feel comfortable. You will desperately do whatever it is to feel at peace even if you aren’t sleeping.
I have counted to a million katrillion infinity and beyond (yes, I am a math teacher, so that must be real) I have taken a breath: in 4 seconds, pause 4 seconds, out 4 seconds. Now that one I did for just about infinity squared. Relax your body. Work your way up from your toes. Listen to calming sounds. Silence. No light. Dim light. Try anything. Switch beds. Go to the couch. Try anything.
Seroquel– This medication is used to treat certain mental/mood conditions such as bipolar disorder and sudden episodes of mania or depression associated with bipolar disorder. (Web MD)
Now this is the drug, which all other drugs are compared, but not in a good way. This was the nightmare of some years of my life. Seroquel never worked for me. Right from the start, I had terrible side effects. It started with graphic nightmares that paralleled those Saw movies. Absolute terror and gore– things I do not prefer to think about.
Now for some background knowledge here, I hate blood. I always have. Getting it taken still sends me into a screaming fit you might see when trying to give a 5 year old a mere shot at the doctor. Actually at 5, I would personally do one of my ballet body tables under a chair so that I could kick at my doctor, who tried to give me a shot. My dad liked to call that the “upside down cockroach.” I have always been a smash and I have never liked shots.
Anyway I always hated blood and doctors for that matter. This led me to avoid getting consistent care for my mental health almost my entire life, before that decision to go 6 years ago. I had attempted therapy, but found it to be false before I found my current therapist. When I finally did go to her, I still resisted meds. I said no for a year. An entire year of talk therapy and I said no every single visit.
I tried to cope on my own, tried to work through episodes. I did get better with talk therapy, but I wanted to be BETTER better. I wanted to be healthy and thriving and not merely surviving. That is what it was to me to get through episodes without meds– it was survival. It was always just hoping. I didn’t want to hope I would be alright anymore. I wanted to ensure it, to work on it, to practice what I needed to thrive.
This proved to be more than I could handle without those meds and my doctor got through to me that most bipolar people who live happy successful lives, without the extreme swings, are on meds.
So I agreed.
I eventually ended up in Seroq-hel.
I tried to get off of it, but by then I was dependent, the same way one would be addicted to something illegal. My medicine– my nightmare. When I tried to get off of it, multiple times, I would not sleep. I do not mean I had your run of the mill sporadic insomnia, I mean I didn’t sleep– for days, for a week. I did not sleep until I succumbed to this drug and went back on it. I can imagine now what it must be like for some people to get off the ‘hard stuff’ in the movies.
I had to keep it moving. I had to try new things. I wanted off this med so I needed something else. My side effects became way worse than my swings. Every time I tried to get off it, to replace it, there were worse side effects. There were voices, maddening things that didn’t feel like me, and weren’t me but sounded like me. There were racing intrusive thoughts that spun one to the next and certainly felt manic, the thing that med was supposed to repress.
The next med brought some insane energy and extreme narcolepsy at other times. I would wake up and not really be awake, felt like dreaming but there I was– walking around. It felt like when you drank too much in college and had to be ushered back to your bed by your roommates. When I would come to, for real, everything hurt. My head, my body. I felt like I needed to sleep but just couldn’t. You know when your eyes BURN so badly because you didn’t sleep. It feels so good to close them, usually. In this case, it didn’t. Nothing helped. I was somewhere between awake and asleep at all times. Nothing felt real. That was one of the ones I couldn’t just live through. It was impossible to get through the day.
Another side effect was waking up without being able to stop. I needed to move. I would run up and down the stairs to make it stop. My body felt better when I moved, felt like I was supposed to be moving. I felt like I was already running when I wasn’t running so I had to catch up to my body. I got on my exercise bike. I moved and moved. I waited for it to stop, but often it just didn’t. Often, I just moved like that for long periods of time. They gave me sleeping meds to take when that happened. I usually got an hour, two at most. Sleeping meds aren’t supposed to be forever. They wear off. Like addicts searching for those new highs, I was always searching for that new sleep thing. What could make me sleep, doc? Please. What haven’t we tried?
I need to sleep. Please.
For all those who have suffered from any kind of lack of sleep, you get it. Sleep is the most beautiful, now delicious feeling thing to me. Waking up feeling good is such a blessing. It is still a rarity to wake up without an alarm, but my god, I thank the universe whenever it happens.
I remember in my worst state ever of lack of sleep, my doctor said, “Michelle, just remember no one has ever died from insomnia.”
I mean he was right, but I felt like I was dying. I couldn’t function or think. I would scream at any little thing, unable to regulate the simplest of emotions. I was like a raging infant, incapable of anything coherent or plausible or nice. Functioning without sleep is a whole different kind of hell, Seroq-hell.
For years, I believed that I shouldn’t take meds because it was cheating. Now I believed that meds were something that the most extreme cases needed and not only did I not believe I was an extreme case, but I didn’t want to be one. No one wants to need meds obviously.
The odd thing was I never felt like anyone else was cheating. I respected people who took meds. I trusted they needed it. I did always have faith in meds. As a special education teacher, I have seen medications do wonders for students. It was never that I was against meds or didn’t believe in them working.
Cognitive Dissonance- ‘refers to the mental conflict that occurs when a person’s behaviors and beliefs do not align.’ (Medical News Today)
There was just an extreme level of cognitive dissonance for me. I knew that people would benefit from meds. I knew people with bipolar lived better lives with meds. I knew that OTHER people needed meds. I knew that it worked for OTHER people.
Not for me though.
I wouldn’t take them.
My behaviors did not align with my belief in meds. It wasn’t that I didn’t believe they worked. It wasn’t that I didn’t agree with them.
I just couldn’t bring myself to do it for a long time.
Now that I have, I am truly proud of myself. It is no easy feat to push through those feelings and it took me so long to say ‘yes’ to this additional support to my wellness.
Now, I’m happily in therapy being what I call therapized. Talk therapy is everything to me. I am a very auditory learner as many people who know me know. I learn best by conversing about a topic just as I learn best about myself and my mental health by getting it out orally. Discussing readings with other people. Sometimes I hear myself say something and then this ‘Ohhhhhhhh’ comes out of me. Light bulb moments. Talk therapy gives me that without exhausting my friends’ emotional resources and also without the bias that loved ones will naturally give you. My therapist snaps me into it sometimes and points out that I am WRONG WRONG WRONG in certain situations. Everyone should have someone to tell them they’re the jerk.
When it comes to the meds part, I go to a separate psychiatrist who prescribes and checks in with all those side effects and other parts that come with meds. It is great to have another reference point and he is knowledgeable about everything I take. He also works with me and gives me resources to read about meds before I take them. Since living in Seroq-hell, I read everything I can about a new med before I take it. I have refused to start different drugs because there are certain side effects I will not work with, such as extreme insomnia or weight gain, unless there is no other option.
Now for the meds– I know they will continue to shift and change as my life progresses. Lots of things can re-trigger anxiety and so I’ll need a boost of something. When it comes down to it though, my life is better since I have started them. I have had very long periods of perfectly baseline feelings, baseline meaning the ‘normal’ for lack of a better term in between the manic and depressive states.
We learn what works for us and I am so happy I found a lifestyle that works for me. I am so glad in the moments that I can see things for real that I know this. I love my life and especially my job. It suits me, it works for me, and I am great at it. Coming back for summer always reignites for me why I do it and why it is so good for my life, well being, and mental health. I am lucky to find a job and career like that. I have learned to work on looking for that things I am grateful for as that always helps my mental health.
Luckily, I also have an amazing support system at home and at my job. We have identified so many triggers, coping skills, beginning of depressive cycle behaviors and concerns, etc. Working on your mental health is possible and I am so much healthier now. I am so much better at handling my mental health and at working on my mental health– which even typical people should do. Every single person should work on their mental health and monitor their emotional well being.
Every single person needs to work on their mental health and wellness. Your self care is your job and it is important.
I am finally coming out of the mental health closet that has existed for years.
When I first started working on all of this, I didn’t have a lot of personal contacts who took the meds I was taking. I wanted to hear from someone who knew what I was talking about. I took to the internet! Web forums– real people helped. They wrote about it. They understood. They knew exactly what I was going through. They got ALL OF IT.
Most importantly, they wrote honestly about their symptoms. They wrote honestly about their side effects. These writings help me so much to not only make decisions, but to know what to expect. That presetting made things worlds and worlds easier for me.
That is why I am doing this. I think we all need to talk more about mental health. I have become so open about it because I know other people experience this, too. I hope by sharing it helps someone else start their journey or progress their journey. I also hope by sharing someone who loves someone taking meds will understand a little better what they’re going through so you could be the best support possible.