Trigger warning: there is a very brief discussion about (past) suicidal thoughts in this post. Skip this one, if that’s triggering for you.

“I don’t like putting toxic shit in my body,” I write, as I take a generous swig of my whiskey sour.

Admittedly, my stance on medication is sanctimonious, at best, borne not from some new age desire to avoid an impure lifestyle, but more so out of a few lasting traumatic experiences with otherwise promising medications.

When I was first diagnosed with POTS in 2011, I had never taken prescription medicine other than the occasional brief antibiotic use for an infection. Yet at my first official appointment after my POTS diagnosis, I asked, nearly begged, for a prescription for something. For anything. The increased salt and fluids I had tested up to that point weren’t touching the lightheadedness or fatigue, and I was still occasionally fainting. I had not yet fully accepted the perpetuity of POTS, and had beta blocker hopes and midodrine dreams of finding that magic pill that would release my old life.

**I don’t plan to discuss every medication I have ever tried in this post, just the ones that were noteworthy. I will write a future post about all of the medications I have ever tried for POTS.**

The first medication I was prescribed was a very low dose of a selective serotonin reuptake inhibitor – an SSRI. SSRIs are antidepressants prescribed off-label for POTS. SSRIs can affect the part of the brain that controls standing vasoconstriction – constricting your blood vessels – which helps reduce blood pooling. [source] It’s a fairly standard POTS treatment, or at least it was 12 years ago. I haven’t heard much about it in recent years.

The SSRI had no change on my symptoms, and years later, after feeling fed up with taking a medication with no benefit but a few side effects, we stopped. It made me feel unemotional at a time when I desperately needed to address some emotions.

SSRI is the only medication with which I have experienced withdrawal symptoms. I was on such a tiny dose that we couldn’t taper off, so one day, cold turkey, that was it. If you have ever stopped an antidepressant, you are likely familiar with the ‘brain zaps’ – if not, brain zaps feel exactly how they sound – like someone took a live electrical current and grounded it in your head. I also experienced what I referred to as ‘brain drops’. You know when you’re riding a rollercoaster or a very turbulent plane and a sudden drop in elevation makes it feel like your stomach dropped? SSRI withdrawal felt like that, but in my brain.

Not long after starting the SSRI, we added a beta blocker, atenolol. Atenolol did a great job of lowering my heart rate, to the point that I periodically had to reduce the dosage. But POTS is a lot more than just a high heart rate, and while beta blockers had a gorgeous, calming effect on my racing heart, they did nothing for the rest of my symptoms. As I exercised more and more, I relied on beta blockers less and less. I still have an active prescription, but I take a tiny crumb of a crushed pill maybe three times a year. The smallest dosage of atenolol available is 25 mg – when I do take it, I’m probably at 2mg. My resting heart rate without medication while awake is usually low 50s, and it drops into the mid-40s most nights. For the most part, beta blockers are no longer needed or useful.

Nearly 5 years into my diagnosis, my cardiologist wanted to try adding Florinef to help with fluid retention, as I was still getting lightheaded from blood pooling. I know I’m sensitive to meds, perhaps resulting from a combination of moderate childhood allergies and just having a sensitive soul, so I always start with the lowest dose, then cut it in half or quarters. The first night on 1/2 Florinef pill was unremarkable. Second night, I felt like I was having a seizure. For hours. You can read more about it here, but suffice it to say, it was one of the worst nights of my life. No longer the absolute worst – the night my mom died and I was alone all night takes the cake now – but it’s close. Thanks to my 2nd night of Florinef, I have a tad bit of lingering medication PTSD.

My most recent prescription, gabapentin (brand name: Neurontin), was in 2019 for the rather intense wildfire of neuropathic pain that came on quite rapidly, particularly in my feet and legs. My first year on gabapentin was uneventful, mostly the occasional breakthrough of burning pain. Year two was a different story. Again, I won’t rehash the entire narrative here and will instead direct you to a previous post (be forewarned, there’s a trigger alert for that one, too). The TL;DR for gabapentin is that I suspect it caused a slow creeping depression that culminated in some fairly moderate suicidal thoughts. I have a very clear memory of one morning in particular – the last day I ever took gabapentin – of sitting on the toilet (just going #1, FYI) where I suddenly thought, “I might die today.” It wasn’t necessarily the thought that terrified me, it was more the casualness with which I said it. Like it was just something on my to-do list: 1. laundry. 2. take dog for walk. 3. die.

I don’t have proof that the gabapentin caused it – after all, we were in the middle of a global pandemic and my mom had recently died – but I stopped gabapentin that day as a precaution and have not taken it since. I could be open to trying it again someday, but not before 1.) warning everyone around me to be honest about any depressive changes they see in me, and 2.) hiding any sharp objects. At this point I should know better than to take a medication on the FDA high-risk list because, while useful, black box warnings only seem to ink my fate.

So, to say taking medication requires a little bit of bravery is not an overstatement. It might look like just a few milligrams of powder compacted into a tight little bundle, but it can be your saving grace, or your downfall, and you don’t know which hand you drew until you pop that tiny pill. All in the pursuit of symptom relief.

But these things – fatigue, pain, life – didn’t magically vanish along with the failed treatment. Exercise is a master at taming my heart, but does little for the other band of POTS characters. Once the pain relief effects of gabapentin wore off, I began to search for other options. Common treatments include pregabalin (Lyrica) or tricyclic antidepressants. I’m not interested in either currently, as I fear the same result as with gabapentin.

In my research, I came across low dose naltrexone (LDN). There is loads of information out there about LDN being used for neuropathy, MS, chemotherapy side effects, fibromyalgia, ME/CFS, POTS, chronic pain, and other illnesses, although the number of clinical studies is still disappointingly low. LDN must be compounded and isn’t covered by insurance. There aren’t any LDN pharma reps wining and dining prescribers, so there isn’t much incentive for clinical research. There’s a lot to dive into with LDN, so we’ll move that to its own post. But in the meantime, if you’re curious about LDN, the LDN Research Trust is a great resource. The abbreviated version is that naltrexone is generally prescribed for opioid and alcohol use disorders, but in very low doses (hence the creative name – low dose naltrexone) has been found to help with other chronic illnesses.

On any given day, of the dozen or so tabs open in my web browser, at least half are planted on LDN websites. I have random printouts of LDN research studies for treatment of pain scattered across my home desk. For two years, I have cornered anyone I know on it with detailed, if not borderline inappropriate questions. I have never so thoroughly researched a medication. I don’t expect LDN to be the holy grail, nor am I even remotely confident that this is a good idea. But I am attracted to the possibility that pain could be subdued and coherence restored, without the ticking clock of fatality.

Despite years of searching, I was unable to find a local provider who would prescribe LDN without an extensive (and expensive) dive into my medical history. I was on a single track with only one destination: an LDN prescription in hand. Eventually I found a provider via the LDN Research Trust that offers telehealth appointments for LDN. The doctor was friendly and knowledgeable, the appointment quick and affordable, and objective accomplished.

If you are interested in LDN but not comfortable managing it on your own, I highly recommend searching for a provider in your area willing to prescribe it. If you Google LDN provider + your city, you may find options. I’m at a place where I am capable of managing all other aspects of my health with little supervision, and after 2+ years of LDN research, I’m comfortable adding it in.

Because low dose naltrexone is prescribed in small doses, it must be compounded. I chose CareFirst Pharmacy as they offer a variety of safe fillers for compounded medication – a necessity when I’m already ultra sensitive without considering triggering fillers. The telehealth doc prescribed 1.5mg tablets and instructions on how to break it down into much smaller doses. I have the option of cutting the tablets in quarters – a dose of about 0.375mg each – or I can add 2 tablets (so a total of 3.0mg) to 30 mL of distilled water and let it dissolve. Then, using a dropper, I can measure out 1mL (or multiples thereof). Each 1mL would have 0.1 mg of LDN. Three months’ worth of 1.5mg tablets cost about $60. So, this will last me a while. I just received my prescription in the mail, but it will take a couple weeks to work up the courage to try it.

I don’t want to need medication. Frankly, my prescription track record thus far is shit. Nearly a dozen medications without any true successes. I don’t want to add to the list of failures, and I don’t want to risk rising costs and symptom decline all under the illusion of progress. Medication is one of my biggest fears, albeit, an irrational one that I’m addressing with my therapist.

I’m afraid of relying on medication to solve issues that, at their fundamental core, may just be unsolvable. And I want to know that I could exist in the wild, that my fragile well being does not rest on the shoulders of supply chains or postal routes, and that I am composed only of oxygen, good intentions, and yes, on good days, perhaps a little whiskey.

But I don’t exist in a vacuum, and that kind of self-sufficiency isn’t sustainable. The only way to address the pain is to simply start to address it. And if this doesn’t work, that’s okay. I can handle this level of pain.

But what if it does?

He says the best way out is always through
And I can agree to that, or in so far
As that I can see no way out but through. – Robert Frost

Smell ya later.
– Linds