An Update: Chronic Illness treatment, medication withdrawal, medical gaslighting, and choosing the right team

The last couple months have been extremely difficult around here. Some might know I’ve been trying to figure out my diagnosis (right now it’s Fibromyalgia, but we haven’t completely ruled out everything else yet). The last few months, everything has kind of come to a head, and I really want to share my story so that hopefully others can know they aren’t alone.

Before I go further, I need to give you a trigger warning: this post will discuss medication withdrawal, suicidal ideation (SI)/self harm (SH), and medical gaslighting. If any of these are concerning for you, be ware going forward. Also, I AM NOT anti-medication or medical system. I am also not pro just taking whatever they give. You have to know yourself.
Also, I’m not a doctor or medical professional. I’m a retired Mental Health Professional, but this article is informational only, and my own experience. Always keep your own healthcare team in the loop (hence why choosing a good team is important).

In 2019, when I was postpartum with my first, my anxiety grew exponentially, and I also had severe PPD, including some passive SI. Nothing active, but enough to not be enjoying those early days as much as I so desperately wanted to. So, though it took a while to find a resource who took state insurance, we finally found a psych and worked out that maybe Zoloft would be a good thing to try. It was the only one I was comfortable taking while trying to breast feed (which didn’t actually happen much after this point – different story for a different day, so no worries there), and also because around 9 months or a year, we thought we might try again. God had other plans, obviously, because we didn’t know that I was already pregnant again at that point. But, so glad things work out His way and not ours, because we got the cutest 2 under 2 in the world!

That Zoloft made all the difference. I wasn’t having SI anymore. I could go out more, interact with others like before. I was fully enjoying my daughter’s baby days, and trying to enjoy pregnancy number 2 at the same time. Near the end of pregnancy number 2, I got really sick and my anxiety grew, along with some depression. We increased my dose – doubling it. The symptoms quieted again

Throughout 2020/21 we’ve been trying to put all the health pieces together, the neurological symptoms, the pain and musculoskeletal symptoms, the GI symptoms…piece by piece we’ve been putting it together.

Fast forward two years to the middle of August 2021, I finally got an appointment with my new GP in Washington. It’s been a long several months without any medical treatment for any of my conditions. While there, I asked about switching my SSRI (Zoloft) to an SNRI (Cymbalta). I felt like my anxiety was back in control, I wasn’t quite in the postpartum time anymore, and so I thought doing something that was more often used for pain disorders as well might be a better choice…

I regret that decision now…but more on that later.

Overall, my new experiences here have reminded me the importance of a cohesive medical team that work together. In Oklahoma, I had an amazing NP who was on my side, and really prioritized my neurological and GI symptoms, as those were most concerning (and still are). I really enjoyed having someone on my side, and I’m happy to say, I feel like most of the team here will be too.

My new GP was quick to get necessary referrals for me to GI, Rheumatology, lab work, and from there, I’ve already gotten orders for imaging and further lab tests and dietician orders. It’s been fast and furious, and other than my previous NP, I’ve never had another doctor or medical team be so quick in listening and actually taking me seriously.

This is where medical gaslighting comes in. I’ve been blessed overall to have had fewer interactions than most leading to this. Unfortunately, those experiences were when I was young and didn’t know any better. And, I easily gave up – putting my long term health at risk without even knowing it.

This is a big issue in the course of treatment. Sometimes, the reason it can take so long to get an actual diagnosis for some people, is because it can take time to find a medical team that works with you, believes what you share with them, and who are actually willing to run through all the tests and analytics needed (thyroid checks come to mind here).

So, while all of these scheduling things are going on, I started a new medication – one I deeply regret taking, and I’m so glad I’ve stopped, even though I’ve been to hell and back the last two months.

At first, I really thought it was getting better. I was still in pain, but I had more energy and mental clarity. I had that for a couple days, and then things drastically turned for the worse.

Once I was completely over to taking just the Cymbalta, I was just not doing well. Sure, I had a bit more energy, but I was still in pain. Then, I became moody and irritable. Then, the SI started. It started with passive but intrusive thoughts. Then obsessive and intrusive thoughts. I had completely low mood, no motivation, nightmares, night sweats, insomnia and couldn’t even really leave my room without panicking. I also began having hallucinations – which, by the way, 0/10 stars, do not recommend….

Now, I have a history of depression. I didn’t sleep for 3 months my sophomore because of a depressive episode. I had severe PPD. I had two painful pregnancies, both of which left me on modified bed rest. I had mastitis & C-vid…And, I would rather relive any of these experiences again that what I went through on Cymbalta.

The line was drawn two weeks ago when I had to have my husband drive me to the pharmacy to get the new script for a higher dose, because I wasn’t even on the median dose yet. By that point, the SI was constant, along with other intrusive thoughts, and even though I would try to reframe, and refocus, it was nearly impossible. On the way to the pharmacy (again, I wasn’t driving because I knew I couldn’t be trusted behind the wheel in that state), I held on for dear life as the “just open the door…just jump out…you can’t handle this anymore…I don’t want to be here anymore” thoughts kept coming. So, I paid attention to signs, stoplights, my kids voices in the back seat.

I went in to the pharmacy to pick up the script and decided to speak up. I let the pharmacist know of my concerning symptoms, namely the SI and hallucinations, and he recommended stopping immediately, but said if my doctor and I wanted to try the higher dose, give it no longer than a week. By the time I got back to the car, I knew I wouldn’t make it a week, and I knew I wasn’t safe.

Hubby took that night off work, and we stopped that night. I did my research, I recognized the dangers of stopping cold turkey, but I was willing to take my chances.

Originally, I was planning to go back to the Zoloft, but decided to do nothing. No more psychotropic drug. Why make this personal decision?

Because withdrawal was even more hell physically than the drug itself. Mentally, I was in a much safer place. The SI reduced drastically day by day, and hallucinations ended almost immediately. Physically, though, I’ve never felt worse in my entire life. It has been the worst, one of the worst, experiences of my life. Nausea, headaches, body aches, dizziness, brain zaps, confusion, brain fog, unsteady on my feet.

We are still having issues now over a week and a half later. However, my mind is super clear, no more SI, very little self-deprecating thoughts. So, I’m pretty sure, I’d rather have the pain and the brain zaps. Each day is getting easier, but last night and today are really the first times I’ve been able to get work done, using my very limited energy to make sure my house stays standing and my kids stay alive.

My kids and I have had a lot of time in momma’s bed and room doing low key activities, and they’ve had a lot of independent play time because mom couldn’t even lift her head. Luckily, hubby has such a flexible schedule is pretty much the BEST dad ever, so our kids have had plenty of play time while momma has had quiet rest time.

We are finally getting back into a good routine, and I’ve been able to do more and more each day.

I’ve also learned a lot, and have come to a conclusion that what we thought last year was fibromyalgia, may have actually been side effects of too high a dose of Zoloft, and some symptoms of my undiagnosed Crohn’s (which my new GI informed me can actually affect more than just our GI tract, who knew? I suppose I should have, but, glad to know it now…)

Why do I bring this up? Because I got some training in psychopharmacology and biological psychology, and I didn’t fully know what these drugs did or what it was like trying to get off of them. Nor did I know how uninformed I was or how uninformed most doctors are.

It’s now my opinion that perhaps when our doctors feel like something has “worn off”or “hit tolerance levels” and we need more of it – perhaps, we actually need less. Reading up on the side effects of these drugs and knowing more about serotonin syndrome, it has me wondering…perhaps our biggest issue isn’t undermedicating, but rather, overmedicating.

Also, there is so much emphasis on the SI these can cause for those 25 and younger, but those of us who are older might think we’re exempt from that. I can attest, that isn’t always the case. So, we have to know ourselves the best. I knew those thoughts weren’t from me. Even when PMDD acts up, any intrusive thoughts are passive and not active and don’t make me feel unsafe in my own brain. This time, it was the meds. I was terrified just to be in my own head. I’m 33 years old, so for any older than 25, we are not immune from that side effect. We have to know ourselves.

I want to take back my body and my mind. I already have more clarity, feel more at home in my head, and know I’m not a danger to myself at all. Today, I even got excited about something good happening.
Two days ago I got disappointing news (rejection of a short story), and while disappointed, I didn’t immediately have any SI or self-deprecating thoughts. I just accepted it, and what a relief and blessing it was to know I am safe in my own head and can handle negative feedback again.
I’ve already lost some weight. I learned that what I was trying to find another diagnosis for why even when I was exercising and eating better my weight stayed and even grew, but my labs showed nothing, and turns out it’s a side effect of the SSRIs/SNRIs. Being off of all psychotropics for a week and a half, and my body is already starting to become what it was.

The medical field calls medication withdrawal, especially for SSRI/SNRI, discontinuation syndrome because they feel the need to distinguish an addiction to these medications. The harm here, is that those experiencing the withdrawal feel their symptoms have been brushed off by the medical community (because they have). This also discounts addicts who go back time and again not just because of the cravings but also because withdrawal is hell. It’s not an either/or here, it’s a both/and. And, maybe the medical and mental health communities could better treat everybody if they understood that.

What happens with these psychotropic drugs is that they actually impact how our brain and CNS function – as they fade from our systems based on their half lives, our brains are left to try to find equilibrium again. It gets that by either getting the drug back and finding homeostasis, or readjusting to life without the drug, and new levels of whatever neurotransmitter the drug was acting on. That’s a lot on our minds and bodies. That can’t be ignored.

That’s why this discussion is so important – we have to destigmatize mental health issues, medication, and chronic illness/treatment. The only way we’re going to do that is share our own stories. If we’re unable to think critically, have access to all the necessary information, speak up, then we can’t find the information and get the help and support we need. We can’t help but feel alone in it all. These conversations are so important for self advocacy and so doctors can have more well rounded information to really do no harm.

So, what now, what does this mean for me moving forward? First, no more psychotropics. I believe Zoloft was absolutely what I needed when I started it. I also think once my son was born, I had my tubal, and my body began returning to baseline, I beat on zoloft far longer than needed or was good for me over all. I just didn’t know that could possibly be the issue. Instead contemplating an increase or the switch. So, no more for me. I honestly don’t believe that they will serve a need in my life at this time.

Just as it has for the last couple months, this means a lot of grace, rest, and self-care over the next few weeks, especially as we hopefully zero in on what’s actually happening in my body verses side effects of something else.

I also plan to bring back in the focus of Soul Cadence – now full name Soul Cadence Creative – and refine us back to the basics: Creativity. Fulfillment. Home+Family. Burnout & chronic illness. This focus will narrow in on content creation, writing, and the Soul Cadence Village, a place for burnt out and overwhelmed moms to have connections, resources, and coaching to embrace chaos and live fulfilled.

I’ll also be making sure to focus on my own motherhood, reclaiming time lost and stolen by the medications, health issues, and their unfortunate side-effects and withdrawals. I may have a chronic illness, but that doesn’t get to destroy my relationships with my family or my children. And, that’s the beauty of running my own creative business from home, right? I get to be a work from home mom changing the world, while also being present with my kids and teaching them compassion for others who may be different, having different bodies, health, and abilities.

So, we’re getting back to a schedule of content, though it will take me a while to build it all up. I plan to post here most Mondays, working up to every Monday. I will be posting a YouTube video every other Wednesday, maybe someday building up to every Wednesday, maybe. Then, I will have a monthly Self-Care Saturday blog and video. If you want to catch me daily, IG is my internet home…that said, if you don’t want to miss anything or you want to keep in touch in case there’s another social media blackout, join the newsletter, or if you’re a mom, better yet, consider joining the monthly membership.

This is just the beginning. I fee like God has been really working on me, even in the hard moments, the moments when I was barely holding on, or I thought my body was ripping itself apart at the seams.

I have blogs and videos coming up about how we stay creative during flares or the hard days. How to be motivated when we don’t feel motivated. I’ll be sharing more glimpses into the diagnosis journey and where we go from here.
And, lots of book launch stuff – because I released a couple books in September and have a book coming out in December, and it’s about time we celebrated all the goodness.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s