Things that have helped me (version: apr 2022)

[POTSius]

I am making this post to share the things I have found helpful dealing with my illness over the last few years. The information will be sorted by symptom into categories. I plan to update this regularly, so stay tuned. I have also added some miscellaneous thoughts/things I have learned.

This should not be taken as medical advice, but rather things that helped me and which you could consult your doctor about if it inspired you in some way.

Fatigue + Malaise

- Ibuprofen

Insomnia
- orange glasses to block blue light at night 2h before bed

- Light therapy lamp (the type used for SAD), first thing in AM (to set circadian rhythm)
- oral cromolyn (this was surprising and very helpful)
- ibuprofen
- keeping room cool at night (near 60F!)
- Benadryl in flares as needed. Seems to work best if I try to sleep naturally and only take it if I can't fall asleep.

Chest pains:

- Acid reflux management (which helped more than just the reflux but also chest pain, possibly as the reflux was irritating my esophagus). I particularly manage this with baking soda and pepcid (10mg spread 4 times throughout the day).

- Avoiding overly hot or cold foods (to test: hold in mouth for a few seconds, is it too hot? cold?)

- Avoiding sharp foods (fried food) which seem to irritate esophagus

Lower gastrointestinal symptoms

- An electric heating pad applied to my stomach at low heat is very helpful to deal with the pain at least

- Identifying foods that triggered symptoms and avoiding (+ allergy testing, etc)

Eye blurriness when reading:

- Optive refresh lubricant eye drops (I would not have even guessed my eyes were dry before trying these)

Exercise:
- I found it very helpful to start any exercise at a ridiculously low level and then increase at a slow rate as tolerated. e.g. I started using a recumbent bike at 2m a day! An advantage of this method is that, if you start feeling worse as you increase, you can always return to the last "safe" level rather than stopping exercise outright. As long as you never/rarely go backwards, increasing at a slow rate will eventually work.

Muscle Shaking:

- Electric heat pad (don't know why this works)

Hot red hands, feet, ears:

This symptom typically only starts in the evening, it seems to correspond to the fact that before the evening my hands, feet and ears are very cold

- The hot red hands, feet and ears tend to worsen if my hands/feet/ears get overly cold in the first half of the day: so I try to avoid that.

- Avoiding heat later in the day helps

- Resting after meals

Miscellaneous Thoughts:
Medicine/Supplement inactive ingredients
I have found that some medicines that were helpful I almost did not take given a bad experience caused by inactive ingredients in the medicine. For instance, when I first tried propranolol I got bad GI symptoms but with a different manufacturer I was fine (the issue was lactose. I have learned that even the small amount of lactose contained in some medicines can be a major problem for me).
Time to adjust
Several helpful medicines made me feel worse at first and only after giving them some time did I realize their usefulness. Clearly, however, this is not always the case.
Gradual dosing
I have found it helpful when starting medicines to start at a very small dose and gradually ramp up to the target dose. Sometimes this involves splitting the pill (unfortunately this should not be done to not all medicines, so check with dr/pharmacy).
    

[POTSius]

Added a bunch, hope it helps someone