I did something some may consider radical last night, as I wrote about a bit: I decided that I was going to go more decisively in the direction of what my oldest calls my “woo” approach to alternative medicine.
I stopped taking every single one of my meds, cold turkey. I researched each of them to know about drug half-lives and if it was safe to quit them abruptly. The only one that wasn’t safe to quit abruptly was klonopin, because drugs in this class (called benzodiazepines, which also includes drugs like Xanax and Valium) can cause seizures and pretty terrible withdrawal if suddenly discontinued.
Taking them every day can cause dependency and requires slowly tapering off them with ever-smaller doses. Even though I’m only on a low 1 mg daily dose for a certain type of seizures in my legs and that’s not a very large dose at all, I have been taking it for more than two years and my body is likely dependent on it.
Even though I was already strongly leaning in this direction yesterday, I researched it further before making a final decision. And what I found is that every single medication I was taking was what they call an anticholinergic drug, including the tricyclic antidepressant I’d been taking for a couple months and the more powerful muscle relaxer I only take on weekends.
Anticholinergic drugs can cause confusion, dementia, and memory loss, especially in the elderly. But it occurred to me that if I was regularly taking up to six drugs a day that each had that effect, maybe the cumulative effect would explain my brain fog and forgetfulness.
Normal side effects of anticholinergic drugs include the following:
- Blurry vision
- Memory problems
I’ve had every single one of those problems pretty much every day for the past three years. Not coincidentally, that’s also how long I’ve been taking at least some of these meds together, with me taking all of them in the past year when I got sickest.
The problem is that these symptoms are also very similar to normal MS symptoms, so I didn’t think they were medication side effects. I thought they were an indicator that my MS was getting worse.
Normal, healthy people can probably take one of these drugs at a time, whether it’s overactive bladder medicine or even Benadryl (which is also in the same category) and probably not be terribly affected.
But when you have someone who already has a known brain disease and have them taking up to six different anticholinergic drugs at once (seven when I’m on steroids), it can make them feel really bad.
I usually felt like I was at least 30 years older than my actual age. I needed so much sleep. I found it impossible to keep my balance while walking. I would frequently lose my train of thought mid-sentence. I really felt like an elderly person with dementia, in all seriousness. There was no way I could work in that state, which was why I filed for disability. I couldn’t even follow simple directions.
The hopeful part is that after just one day of cutting out all meds except the Klonopin, my husband said I already seemed to be improving a bit in terms of not losing my train of thought as often. My speech pattern didn’t sound as broken. And although I’ve had a horrendous headache all day, my head feels clearer already. I’m encouraged that this may continue to get better as the meds work their way out of my system.
However, I’m also being cautious about waiting to see what the state of my brain will be like as I adjust to not being on any meds.
Will I be healthy enough to work? I really hope I am, and I even hope I can work full-time.
But I do still have MS. And I still live in a place where it’s really hot for five months out of the year, which is a trigger for flare-ups of the disease. I can’t be certain that I’m going to be well enough to work.
And realistically, I probably can’t work a standard 8-5 shift plus commute, because that’s so contrary to my body clock and being on that schedule gives me so much anxiety that it causes insomnia at least one night a week. But that still allows for library schedules, which is what I really want, or second-shift or mid-shift hours somewhere. It limits my options in terms of the types of jobs I can get, but in truth I’ve never been well-suited to the typical corporate life anyway.
Yet I am really hopeful that I will be able to work again. That will give me more of a feeling of purpose in my life. Because even though I dearly love my husband and kids, they can’t be my entire reason for living. My kids will grow up and move out, as they should, so what will I do if they are my entire purpose for living? What if (God forbid) something happens to my husband?
I have to have more to my life. And while I still feel grateful that my husband takes his responsibility for providing for the family so seriously, the truth is that I am not happy just being at home.
If I get my brain back, I want to put it to good use. I want to feel like I have more control over taking care of myself. It was scary how vulnerable I felt before. I truly was afraid that I might lose the ability to drive within a couple years at the rate I was going before.
Honestly, all indications so far seem to suggest that getting off all my meds is going to take away my most bothersome symptoms. I don’t want to have to take any medications every day if I can help it.
Once I’m not so dizzy anymore that it’s messing up my sense of balance, I want to focus more on exercise that’s more intense than just walking. Just four years ago, I could still use an elliptical machine and loved it, so I bought one when we moved in here. I’ve never been able to actually use it because being on it made me feel too unsteady and unsafe while I was taking the meds. I mean, it’s a challenging exercise when you’re out of shape until you adjust, but feeling like you’re going to fall as soon as you step up on it isn’t normal.
I didn’t realize just how difficult it was to do the right things to take care of myself while I was under the heavy influence of these powerful medications. If I can get a good enough sense of balance to use the elliptical again, that would be amazing.
I wonder if I’ll also gain the ability to run? I’ve always wanted to be a runner but my legs have been too heavy to lift them the past couple years. I don’t know if that’s part of the normal “foot drop” associated with MS or if it will go away now.
If this turns out to work the way I think it will, then that also resolves a lot of my health insurance dilemmas. Because while having terrible and expensive health insurance is undoubtedly a bad thing, it’s something you won’t have to worry about as much if you’re not regularly going to the doctor or taking a lot of medications.
So far, I’m not yet one of those people who endorses any particular diet or form of alternative medicine to treat MS. But I am already pretty convinced that being on a ton of drugs to manage symptoms is not the way I want to go.
I actually felt like I wouldn’t live that long based on the way I felt before. And now that some of the side effects I was experiencing are already lessening, I can actually envision a future again.
Maybe I won’t die in the next 5-10 years, after all. I’m hopeful that I’ll still get to have a job and maybe even do a little traveling. And really, I can’t tell you how amazing it is and how much it feels like I’ve gotten my life back, just to go from being pretty sure I’d die within a decade to believing I have no reason to assume that anymore.
It’s life-changing. Seriously. And if anyone else reading this is also on a lot of meds every day and is overall feeling pretty constantly unwell, check the side effects of your meds and look into possible interactions. I would tell you to do it with more of your doctor’s involvement than I did, since I’m kind of a renegade that way and I am willing to accept those risks (and also I do a ton of very in-depth medical research.) But I would never advise anyone else to go about it the way I did.
Then again, my doctor was the one who prescribed me all these medications and didn’t catch the fact that they were all anticholinergics. Unfortunately, at least with some doctors, you have to be able to research your own treatment, too, because they might miss stuff.
Just consider the possibility that maybe it’s not healthy to take a lot of medications. Doing so could actually make you feel a lot worse than necessary. I’m pretty hopeful that I’ll feel a lot better when I’m not on a ton of meds anymore.