Hi All POTS People, I think I have previously given input to this discussion but can't find my comments. I am from MI. I had a bad case of COVID and pneumonia in August 2020 and basically, remained unable to live like my pre-COVID self until September '23 when I was FINALLY diagnosed with POTS by a Neurologist. I, now, take 30 mg of Mestonin twice a day. I still have break throughs of SOB, fatigue and dizziness but 80% of the time, I'm pretty active. I was diagnosed with CFS and fibromyalgia by Mayo about 20 years ago. I still take low dose Tofranil for my fibro. CFS is probably still laying in wait to re-emerge sometime in the future. However, needing more sleep than others is my only CFS symptom now. I try to forget about it. GI problems and headaches have not gone away with the POTS diagnosis. I'm trying Bentyl right now for my GI stuff. Please ask me anymore questions you have. Dr Tam's Clinic sounds amazing. I'm going to research it. Thank you, Lu

Hi @kitty2- I had looked up Dr. Tam when @christine8 replied to me.

Here is the website for her clinic: https://www.mecfsclinicmn.org/contact-8

If it helps, here’s Mayo’s page about orthostatic hypotension: https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

And I like Hopkins’ page for POTS: https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

Have you been able to talk to your doctor about your symptoms? I know sometimes it’s helpful and sometimes not, depending on the provider. There can be different causes or contributing factors to orthostatic hypotension like medications and hydration that can make it worse even if COVID triggered it, that they might be able to help you rule out, or if there could be another cause.

Christine mentioned some great tips/strategies you could try or talk to your doctor about if you have someone supportive. Usually, increasing fluids significantly (at least 3 liters a day is often recommended for POTS, and some specialists recommend at least half of that to be electrolyte drinks), increasing salt (it helps your body hold onto fluids and both conditions are caused by or associated with low blood volume and can worsen with dehydration), and pacing of exercises. I take Klaralyte electrolyte capsules, which include sodium and have at least one bottle of electrolyte solution per day (Skratch Labs and Kinderlyte are my favorite brands, but they discontinued my favorite from Skratch Labs). But increasing salt depends on your health history. Sodium actually doesn’t necessarily impact everyone’s blood pressure, but it can, depending on risk factors and there’s a lot of vilifying of sodium that I personally feel is excessive, but that’s a whole other thing….

Strength training especially for the lower body like Christine mentioned also help because stronger leg muscles help improve the pumping of the blood away from your feet more efficiently. Blood (and oxygen) pooling in your feet causes the symptoms when changing positions. If you’re really symptomatic upright, you can start with exercises lying down and seated and then progress to standing. It helps your body adapt to being upright.

Those are usually the first things suggested to try (oh also compression socks or tights are recommended but I skipped over that because I couldn’t tolerate it >_< ), but it’s not always easy and can take time, especially the graded exercise.

There are prescription medications as options if it’s not enough.

I take Low Dose Naltrexone (LDN), a compounded medication. It helps my fatigue.