Looking for answers on my POTS-like symptoms

Hey everyone! I suffer from POTS like symptoms. I have rapid heart rate, especially after standing or with activity, shortness of breath, severe fatigue, palpitations after meals, easy bruising, GERD, bloating and heavy painful menstruation. I have had an extensive cardiac work up with no abnormal findings and routine blood work that is all normal. My symptoms came on pretty quickly at the end of 2018 and beginning of 2019. I have slowly gotten worse as the years have passed. Everything started with frequent PVC's and I noticed my heart rate would take forever to calm down after exercising. I saw a Functional Doctor that checked some of my vitamin levels and found very low D and Magnesium, along with low iron and ferritin. I am still working on correcting those. They have improved some since then. I am on a plant based diet and felt a little improvement with out the heavy animal products. My question is, have any of you experienced similar symptoms, and what were your medical findings. I am interested in what other people may have found so that I can research and speak with my doctor the possibility of a diagnosis. I feel like at this point I need some help outside of my practitioners. They don't seem to be willing look any deeper than the surface and I need some quality of life back. Thank you in advance for any help you can offer me ❤️🥰

Your answer

55isMe

8mo ago

There are 4 main types of POTS. i have the hyperadrenaline version, high bp, high pulse. For me, Metoprolol (spironolactone too, as my potassium dropped) have helped a lot. Its nit gone, but manageable and not rushing to ER when i cant control my body anymore. Same timing as yours, voming up to 5 years. My cardiologist finally order TTT after 3 years, but i was finally improving. I skipped due to cost and risk of re-aggrevating.

Rachie7

2y ago

I have all this but gerd. Just diagnosed with pots

Healforhealth

2y ago

I hope you can get some good help now that you have a diagnosis!

Healforhealth

2y ago

Thanks for the response. Yes, this illness has certainly changed my life completely. I have always been very curious if my GERD contributes to my palpitations, especially the force at which my heart beats and my frequency of PVC's. After nearly every meal I eat, I get an increase in heart rate and very forceful heart beats. I was in the ER for PVC's and rapid heart rate one time, they gave me oral and IV gastric meds that did calm my palpitations. Do you have an official POTS diagnosis? I think I have Hyper POTS. My blood pressure runs towards the high end and things like salt, fluids and compression stockings don't offer any relief. The thing that has helped the most so far has been beta blockers.

DieselWeasel

2y ago

yes I have been officially diagnosed for around six years now. It was confirmed via tilt table test. If you run on the high end with your blood pressure I would avoid the salt. You may not have Pots. I would definitely try the above mentioned suggestions like getting a good electrophysiologist. Do a heart monitor. Try pepcid. Do the tilt table test. The answers are always worth far more than the trouble of bothering some doctors.

DieselWeasel

2y ago

Sorry you're having these issues. They do sound like my pots. Unfortunately it's a terrible illness. If you want to be certain you can ask for a cardiac MRI. You can ask for a DNA test to check for mutations. You can do a nuclear stress test. You can get an implanted cardiac monitor. It's tiny , smaller than a pill and it goes under your skin on your chest. It will monitor any irregularities automatically and it gives great peace of mind. It lasts about three years. I also have GERD and found it was causing a lot of my palpitations on top of my already high heart rate with pots. I take a ppi but I also found the h2 blocker famitodine got rid of my palpitations.

DieselWeasel

2y ago

To confirm just the pots you can have a tilt table test.

SweetTeaTree

2y ago

If you are up for it, marijuana has been an enormous help for me. Gives me the fortitude to do what I need to do at times, but also is great for pain and anxiety relief. Especially since you have high bp issues, MJ can help with that I hear. Of course, it helps to be in a state where it’s legal or where you can get a med card. I won’t lie… it’s not the cheapest thing. But worth it IMO.

Healforhealth

2y ago

I'm not against the idea at all. I have talked with my doctor about trying cbd and he said to go for it! I'm just so worried about making my palpitations worse. You don't have issues with palpitations from me at all?

yourstrulymads

2y ago

I understand the TTT issue! I don't know if you could ask about ansar testing? It will confirm an autonomic dysfunction if you have one. I am on metoprolol and midodrine that has made my tachycardia issues somewhat easier to deal with. Before starting my medication I had low blood pressure and my heartrate would be 180 from just standing up! What I have found that helps most with tachycardia related issues is compression socks, salt pills and lots and lots of electrolytes and water!

Healforhealth

2y ago

Thank you so much! 🤗

yourstrulymads

2y ago

I have experienced all of your symptoms and I was diagnosed with dysautonomia/pots in 2018. My whole cardiac workup was completely normal! The main tests that help with a diagnosis of POTS is stress test, tilt table test and ansar testing( this one is important) If your cardiologist hasn't offered these, in my opinion, I would find a new cardiologist. Advocating for yourself is key!

Healforhealth

2y ago

Yes! I am on my 2nd cardiologist because my first one retired😥 he was willing to refer me to an EP to do a TTT but unfortunately I just can't afford it right now. I belive I may have Hyper POTS because I have a higher blood pressure and I get spikes. Outside of salt and hydration, has there been anything you have tried that has brought you relief of symptoms? Thanks for the response 😊

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

About Alike Wisdom Blog FAQ Editorial Team All Conditions All Posts All Communities

Your Privacy Stories Community Guidelines Terms of Use Privacy Policy Helplines Contact Us Group Chats Guidelines