LindsayI’m afraid there’s nothing innovative or metaphorical about the title of this post…it really is a list of the medications that – take a guess – I have tried. I thought it might be helpful for POTSies to know what medications they could request from their doctors, but it also helps my foggy brain to remember what meds I have tried and how it turned out. I will link to this post on the ‘About’ page of this blog and will try to remember to update it anytime I add a new medication.
After a month of working up the courage to try low dose naltrexone (LDN), I finally tried it. Much like cooking a delicious rack of ribs, I’m still on a “low and slow” plan, partly because I’m a big wimp, and partly because I have a new job – last week I finished at my old job, next week I start the new one, so I’m in a weird unemployment purgatory – and I can’t afford to deal with side effects right now. So look for a separate post about LDN soon. In the meantime, if you have tried LDN, I’d love to hear about your experience. If you don’t like posting publicly, as always, you’re welcome to email me at Lindsay@dysautonomiac.com.
| Medication | Dosage | Taking it for… | My Side Effects | |
| Celexa (gen: citalopram) SSRI – off label | 10 mg to start, then 5mg | circulation, pooling, lightheadedness/dizziness – did not notice much improvement | lack of emotions, weight gain, brain zaps when weening | |
| Tenormin (gen: atenolol) beta blocker – off label | 25 mg to start, last dose at ~ 2 mg | tachycardia, fatigue, palpitations – helped reduce HR and palpitations, but side effects outweighed benefits | low BP, bradycardia, fatigue | |
| Nadolol compounded beta blocker – off label | 4 mg compounded | same reasons as Tenormin (above) but in a smaller dose due to compounding, hoping for less side effects – helped reduce HR and palpitations, but side effects outweighed benefits | same as Tenormin (above) | |
| H1 blocker H1 histamine antagonist | 10 mg cetirizine (Zyrtec) | mast cell (like itchiness, rash, skin), allergies – still take, helps with itching | drowsiness, dry mouth, dry skin (overall dryness), dehydration | |
| H2 blocker H2 histamine antagonist | 150 mg ranitidine** (Zantac) | mast cell (like nausea, bloating, digestion) – discontinued due to side effects | stopped absorbing vitamins/minerals; weight loss as result | |
| Valtrex (gen: valacyclovir) antiviral – off label | 1 g | test my cardio’s theory that POTS was caused by virus – did not notice any improvement | all mild | |
| Mestinon (gen: Pyridostigmine) cholinergic antimyasthehnic – off label | 30 mg | orthostatic intolerance, muscle weakness, fatigue – helped with fatigue, inadvertently also helped with constipation | nausea, muscle twitches, headaches | |
| Vicodin (gen: hydrocodone/acetaminophen) opioid | I don’t remember | migraine and other pain – helped with pain, but not worth it | constipation, drowsiness, nausea, lack of awareness | |
| Midodrine alpha adrenergic agonist – vasoconstrictor | I think I started at 2.5 mg and cut it in half | low blood volume. – didn’t notice any improvement | tingling scalp, dizziness, lightheadedness, weird visual disturbances, headaches | |
| Florinef (gen: Fludrocortisone) corticosteroid | tiny fraction of a 0.1 mg pill | low blood volume – didn’t take long enough to notice improvement due to AWFUL side effects | high BP, high adrenaline, convulsions, | |
| Gastrocrom (gen: Cromolyn Sodium) | 5 mL (liquid) | mast cell symptoms, like rashes, itchy spots that I scratch raw, digestive issues, abdominal pain – eventually stopped working, so took a break and never restarted it | headache, nausea. fatigue | |
| Corlanor (gen: ivabradine) pacemaker current inhibitor | at highest dose – 5 mg morning 2.5 mg evening | tachycardia, palpitations, chest pain – discontinued due to side effects | strong adrenaline rushes, fight-or-flight | |
| Neurontin (gen: gabapentin) anticonvulsant – off label | highest dose – 400 mg/day | neuropathic pain – helped with pain, but discontinued due to side effects | depression, suicidal ideation | |
| Low Dose Naltrexone (LDN) opioid antagonist – off label | compounded – currently up to 0.2 mg | pain | so far – mild vivid dreams, mild insomnia, headache |
I initially intended to list the medications in chronological order, but after 12+ years of this shit, it’s hard to keep the dates straight. Other than Zyrtec, the only medication I currently take is LDN and am still in the very beginning stages of that journey. My goal isn’t to discourage anyone from trying medications listed above, even where I had a reaction. In fact, all medications listed above are fairly standard treatments for POTS and generally thought to be safe. This website has a nice summary of POTS meds.
I also take a lot of vitamins and minerals due to deficiencies and other supplements for symptom improvement. Perhaps at some point I’ll list all of those, too
You have your way. I have my way. As for the right way, the correct way, and the only way, it does not exist. – Nietzsche
Smell ya later.
– Linds