LindsayAbout a week ago, I stopped taking all my dysautonomia/ME/CFS medication. I don’t exactly know why. One night before bed it was time to pop the pills, and I just decided I didn’t want to. And the next morning, it was the same thing. I didn’t discuss it with my doctor, I didn’t discuss it with my boyfriend….I didn’t discuss it with anyone. I just stopped.
The first few days I experienced some minor withdrawals. I was nauseous, sweaty, and tense, like an addict in need of its drug. My body desperately craved the medication I was depriving it, but within a few days those symptoms resided.
Then, my dysautonomia symptoms grew stronger. After being on medication for so long, I often question whether it is actually helping my symptoms. It turns out, it does help. I’m learning that one the hard way 🙂
My heart rate has been higher, and much more unstable. It’s all over the place – I’ll go from 50 beats per minute (bpm) to 200 to 70 to 120, all within a matter of minutes. My heart rate rises with every little movement I make. If I’m sitting perfectly still, it’s usually in the low 50’s. But if I turn my head, move my arm, lean forward, it rises. And rises. And rises. It was 145 while doing dishes this morning. And over 200 standing at work yesterday.
I’ve had a lot of chest pains and palpitations, although not nearly as much dizziness and lightheadedness as I expected. My muscles ache and my nerves are on overdrive – even minor touches to my skin, such as wearing pants or a shirt, are painful (woo hoo – naked time!). My sensitivities to light, vibrations and noise are also a little overactive. Every sound, even a penny dropping, makes me jump and causes my heart rate to increase.
I thought all the medications I was on were exacerbating my fatigue, since I’m always so tired and fatigue is often a side effect of most medications. However, my fatigue has been much worse since I went off medication. I’m sleepy all the time, even when just waking up from sleeping for 10+ hours. I have that “jello” arms and legs feeling, where I constantly feel like I’m going to collapse. I have all of this with the medication, but it has tripled since I stopped taking it.
And yet, I still have no desire to start the medication again. Eventually I will, I know I can’t continue with this pain and fatigue for much longer. I have a lot going in the next few months that I won’t make it through without medication. But I plan to hold off a little longer. And, in a few months when those events are over, I may try stopping medication again.
I admit I really didn’t think this through. When I start up the medication again I will likely have the same difficulties I did when I first started it. I was like a zombie, totally unaware of everything around me. But, for the past week, it has been so wonderful not being on any anything. I feel like I’m “me” again, and not just some shell of a human filled with chemicals. I feel like I have a personality, interests, thoughts again. And, while I’m worse off physically without the medication, somehow I’m happier.
And, hilarious, although I’m still the only one who thinks so 🙂
I realize this may sound ridiculous to my readers who are not on medication. After all, if something improves my symptoms, why not take it? Honestly, I don’t have a good answer. Prior to the last year, I had never been on regular medication. I don’t like what it does to me, how it makes me feel. Of the four medications I take for dysautonomia/ME/ CFS, my 93 year old grandmother is also on half of them. And while I love my gramma very much, I’m not 93. I don’t want my life to pass me by while I watch from some drug-induced sideline.
I so badly want to be that person I once was. And, while forgoing medication certainly isn’t going to bring her back, it helps me remember she once existed.
“You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering.” – Henri-Frédéric Amiel
Stay tuned.
– L
I get that. You need to do what feels right for you. I hate taking meds although I do take beta blockers for my heart when it goes out of control. I try to limit everything else because I want to feel real. But that’s how I see it.
Hi, thank you for your comment. I imagine I will need to restart the beta blocker soon. I’m having such difficulty controlling my heart rate without it. Do you take a beta blocker regularly, or just when you need it?
Hi, I take the bbs more or less when I need them, although I have to be careful not to let too many days go by or else I could wake up in the night with an out of control heart, or find it starts up in response to sudden movement and then doesn’t come down, which is very frightening. I have had hospital visits before so I really don’t like letting it get too bad. I suppose I leave it about 4-5 days max before I take another, which probably doesn’t sound a lot but 3 years ago I was taking 2 every day, so it’s quite an achievement to reach this point. I guess it depends how bad your heart gets and what you personally can cope with. Bbs affect my other health problems (ME/CFS) so I like to limit them as much as I realistically can. Thanks for visiting my blog by the way. I really hope you find a way through this.
I don’t blame you for not wanting to take your meds. I sometimes go through the same thing, of just wanting to feel normal and not wanting to be on a bunch of prescriptions. I’dlove to walk into the pharmacy and have the pharmacists not know my name, too.
Me too! I feel like Gary (my pharmacist) and I know each other better than some friends do. I’m surprised he hasn’t called wondering why I haven’t been in lately 🙂
“I so badly want to be that person I once was. And, while forgoing medication certainly isn’t going to bring her back, it helps me remember she once existed.”
I know…..believe me, I do. I took occasional allergy medication before last year, and that was IT. I completely understand how you feel.
On a side note, I thought I was the only person who broke 200bpm off her medication 😉
Fortunately the 200bmp isn’t constant, but it happens more often than I’d like!
I’m sorry Linds. I totally understand the feeling, even though I don’t have the same sickness. I fought the blood pressure meds for years, and the one time I did an OTC cleanse, I had to stop prematurely because I could feel the weight of all the pills in my stomach. Things like this always come to a “which is the lesser of two evils?” question for me. Only you will know the answer. Just wanted to throw in my support that you have the right to do what feels best to you 🙂
As someone who recently stopped all her treatments, I understand this. We have different reasons for doing so, but the notion of not wanting to be a walking manufactured-chemical remains true.
Not only that, but like with any drug, if you are on it for so long, your body can’t begin to figure out how to function without it. So for all you know, this could slowly be helping your body fix itself.
I’ve never been on drugs for dysautonomia despite having it severely. My nervous system did help itself. My neurologist said at first, it’d be like a baby’s–sporadic, dysfunctional, because the neurons were trying to reform and get right. So I had a lot of “quirks” at first. My main helper now is remaining hydrated with my electrolytes in balance. If I were on drugs like they wanted, I don’t think my body would have taken steps to heal. So truly, your breaks might be helping more than you initially thought.
I hope you can find medications to help keep you comfortable and functioning at a level that makes you happy, because that is all that matters. Having symptoms does not define you. 🙂
I think you are doing the right thing, by trying, because one day it might just happen that you don’t need the meds any more, and how else would you know? I recently had a really bad bout of the heartrate thing, and my doctor really wanted to put me on meds, but my allergies to all tried meds made me just sink into deep meditation, taking Calm magnesium, and working my way out of it. I have to watch it forever, and just sink into total slowness when ever it starts, but so far so good. The only reason why I can do this is because I live in the middle of nowhere and work for myself. If I had to go out into the world it would be totally different, I have no idea how to do that. Keep listening to yourself, because you know yourself best, doctors are our helpers but we are first in command.
Can I tell ya I am about to start a new medication to help with the side effects of a few other medications. Sometimes I want to just stop all the meds. I mean I know we should talk tot he doc and come up with a plan yadda yadda 😉
This is too freaky – I did something similar recently. I didn’t just decide to stop taking all my pills, just the ones for my GI problems. I don’t know why, I just didn’t want to take them anymore. I went a few days before hubby noticed I was sicker and he went to the pharmacy himself, so I guess I can’t say no to that (especially with no good reason!) but I totally understand.