This is making me really want to talk to my doctor about switching my POTS medications to mestinon. My initial motivation was simply the prokinetic effects, but then I found out it may help with PEM. I’m all the more intrigued now.
Also considering ketamine, after doing some reasearch on opioids and DXM.
I’ll add what has and hasn’t worked for me. I have moderate ME, dysautonomia-POTS, atopy, skin and gut issues.
What has worked:
Cyclobenzaprine
Dose: 5-10mg
Symptom relief within 60-90 minutes
What does it help with?: muscle pain
Degree of improvement: 6/10
Side effects: POTS exacerbation, memory problems, brain fog, general anticholinergic side effects
Notes: doesn’t really help wtih overall symptomology, but I can rest better without pain
Dextromethorphan
Dose: 15-30mg
Symptom relief within: 15-20 minutes
What does it help with?: fatigue, heaviness, pain, brain fog, motivation, POTS, energy, stamina, PEM (buster and shielder)
Degree of improvement: 5/10
Side effects: shakiness, over-focus, stimulation
Notes: helps in largely the same way as hydromorphone, just to a lesser extent
Electrolytes
Dose: 1-3 servings
Symptom relief within: 30-60 minutes
What does it help with?: fatigue, weakness, brain fog, POTS
Degree of improvement: 2/10
Side effects: none
Notes:
Gabapentin
Dose: 50-100mg
Symptom relief within: overnight
What does it help with: rested sleep
Degree of improvement: 2/10
Side effects: weakness, coordination problems, drowsiness, memory impairment
Notes: only including this because no other medication has helped with actual sleep QUALITY (rather than quantity). I find the sleep benefits has a small carryover effect the next day.
Hydromorphone
Dose: 0.5-2mg
Symptom relief within: 10-15 minutes
What does it help with?: fatigue, heaviness, pain, brain fog, motivation, POTS, shakiness, weakness, energy, stamina, PEM (buster and shielder)
Degree of improvement: 9/10
Side effects: none at this low dose, if used infrequently
Notes: the only thing that can sometimes make me feel like I don’t have this illness. Does not give me “false energy”.
Kratom
Dose: 0.75-1.5g
Symptom relief within: 1 hour
What does it help with?: fatigue, heaviness, pain, brain fog, motivation, POTS, shakiness, weakness, energy, stamina, PEM (buster and shielder)
Degree of improvement: 7/10
Side effects: minor stomach upset
Notes: essentially the same effect as hydromorphone but weaker. I suspect the effect can be generalized to all mu opioid agonists.
Modafinil
Dose: 50-200mg
Symptom relief within: 1 hour
What does it help with?: brain fog
Degree if improvement: 3/10
Side effects: mild headache, stimulation
Notes: side effects are rare. Does not give me “false energy”.
Nitazenes
DISCLAIMER: This one is super dangerous and we don’t even have much information on these drugs. I am not advocating anyone try this. I repeat, DO NOT DO THIS.
Dose: ????
Symptom relief within: 10 minutes
What does it help with?: fatigue, heaviness, pain, brain fog, motivation, POTS, shakiness, weakness, energy, stamina, PEM (buster and shielder)
Degree of improvement: 9/10
Side effects: nausea, vomiting, massive opioid cross tolerance increase
Notes: used it to get through important responsibilities at a very rough place in my life. It’s not worth it.
Prednisolone
Dose: 5mg
Symptom relief within: 2-4 hours
What does it help with?: pain, energy, stamina, fatigue, heaviness, brain fog, mood, POTS, weakness, PEM (shielder only)
Degree of improvement: 5/10
Side effects: stimulation
Notes:
Vyvanse
Dose: 15-50mg
Symptom relief within: 60-90 minutes
What does it help with?: brain fog, heaviness, motivation, POTS
Degree of improvement: 3/10
Side effects: gurning, tension, over-focus, headache, stimulation
Notes: especially helpful if I’m sick with a cold or flu for some reason. Side effects only occur rarely at the full 50mg dose, and never at anything less than 40mg. At 50mg, I have a varying response to it. Some days it’s fine, occasionally it feels too much. Does not give me “false energy”.
What hasn’t offered fast relief: B12 (oral, sublingual, IM, IV), benzodiazepines, caffeine, CoQ10, creatine, cumin, fish oil, ginger, gluthianone (IV), H1 blockers, H2 blockers, iron, lamotrigine, LDA, LDN, magnesium (oral, IV), NADH (IV), ondansetron, phenylpiracetam, probiotics, rhodiola, thiamine/sulbutiamine, various amino acids (oral, IV), vitamin D