My POTS story, how I was diagnosed, treatment, & symptoms

Hi guys welcome to today's video where I share my experience with postural orthostatic tachycardia syndrome!
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[@Dulcimerist]

Thanks for sharing your story! I started getting POTS when I was 9, but wasn't diagnosed until 21. It turned out to be the result of hypermobile type Ehlers Danlos syndrome, and my POTS/dysautonomia has probably been my worst set of symptoms. Compression calf sleeves have helped, as has more exercise and weight training to add more leg muscle. I take Pyridostigmine to treat my POTS, gastroparesis, intestinal dysmotility, fatigue, and exercise intolerance. I take low dose nightly Clonidine to treat my POTS, insomnia, anxiety, migraines, and RLS.

[@TheMitoWarrior]

Thank you for sharing your story too! Pots/dysautonomia are some of my worst set of symptoms as well. I feel you. Glad to hear you have a few things that at least take the edge off of the symptoms.

[@pattyknapp6076]

The head floating I call mine my heads on a boat swaying in the ocean and I can’t get of lol

[@TheMitoWarrior]

That's the most accurate description lol.

[@GoFishOffice]

Thank you for sharing. I have POTS also. Probably had it all my life, but was officially diagnosed with it almost 20 years ago.

[@justritasimi]

I have POTs and CFS for 18 years now ...LDN has been the only thing that helped me get my life back! Pots is tough and certainly life changing but it can improve somewhat with the right protocols .

[@TheMitoWarrior]

That's awesome LDN works well for you! I agree. Without my POTS protocols I wouldn't be where I am in life.

[@memesissydollar3080]

Hello , Would you let me know what LDN is please and thank you 🙏🏼. Unsighted here and can relate to the other horrible diagnoses as well. I hope you are doing. Well and better .

[@justritasimi]

@@memesissydollar3080 LDN is low dose naltrexone. Speak to your doctor to see if you can get it ! Sending you healing wishes 💛 🌷

[@candiceclark1497]

I was just recently diagnosed with POTS. My cardiologist thinks it's because of my gastroparesis. He put me on metoprolol but it lowered my BP so he took me off of it. He than prescribed midodrine. I haven't started it yet cause I can't swallow pills due to my gastroparesis. I can easily overdose cause it won't digest so I have to take meds that can be chewed, crushed, or liquid. I just midodrine Friday after my doctor left for the day. My pharmacist looked it up and she said it can be crushed but it took her forever to find out. Do you know if it can be crushed since you take it? Also, do you know if we are allowed to drive? If so, how can I prevent anything bad happening? I'm a single parent and have to do everything. Aso have to drive to all my doctor appointments. I have family and friends but I'm not on their priority list so I'm basically a loner and no one cares but myself and son. Any advice you can help with would be great appreciated!

[@TheMitoWarrior]

Hi! First I just want to say I'm sorry you are dealing with pots and gastroparesis. They are both tough diagnoses to have. With the knowledge I have, gastroparesis does not cause pots. It is extremely common for them to both be hand in hand as they are both a result of autonomic nervous system dysfunction, but one does not cause the other. In terms of midodrine I honestly can't tell you if it's something that can be crushed. But if the pharmacist says it can, definitely trust them on that. So I do not drive anymore mainly because I don't like to haha. But when I started learning how to drive I had been on midodrine at that point for 2 years and that didn't have an affect on me. As you start taking it just monitor any potential side effects. If you feel extra groggy, your reflexes aren't as fast, or anything like that tell your doctor. But I can tell you from experience it had no effect on my driving ability. Let me know if you have any more questions! This is a tough journey to be alone in❤

[@memesissydollar3080]

Thank you for sharing all you do to help others . I love this channel ! Hope your well and better by the day . If you got your Sd from a program would you share that info with me ? I can’t hardly wait to get matched and I keep my eyes and ears open as much as I can in Hopes nigh hopes and faith that my time will be soon . I am not able to create any videos my self due to illnesses . I’d Thera any Guide Service Programs that you are aware of that maybe a good one for me to check into . Blessings , ❤❤❤❤❤❤❤

[@TheMitoWarrior]

That is so kind of you to say. I didn't end up going through an organization. I went the owner training route! Which honestly I wouldn't do again haha even though it brought me my dog Willow. I'm not sure where you are located but i have heard great things about Canine Companions!

[@marcgomez6404]

What would I expect for my first appt? I'm seeing a cardiologist who specializes in pots this week

[@TheMitoWarrior]

Sorry that I haven't responded sooner! What exactly to expect varies from doctor to doctor. What I do know, is that they will ask for a health history, symptoms you've been experiencing, & if you're on any medication. The doctor may want to do a tilt table test for diagnosis, or may want to go another route for you to be tested for pots. That is something that tends to vary.They'll most likely also do an EKG and echocardiogram. If you've been documenting symptoms and/or your blood pressure and heart rate that's an added bonus!

[@cwdx8083]

How do you spell the "M" drug?

[@TheMitoWarrior]

Midodrine!

[@ahmetserdr2920]

Do you have a force to breath?

[@TheMitoWarrior]

Do you mean if I have difficulty breathing?

[@ahmetserdr2920]

@@TheMitoWarrior yes