MarieR

I definitely agree, start slow and see how you react. Give yourself lots of grace, it’s a balancing act.  Just start small and work up. 

Oh my goodness,  I might need to look into these. My earbuds always hurt my ears, so thanks for this tip!

It's so hard to know what causes flares. Sometimes for me I don't have to do anything different, it's hard to predict. It gets discouraging, it's up and down. Sometimes it's just a couple of days and sometimes it's weeks. Just try and take good care of yourself in the mean time. It's really hard and frustrating, I hope you get feeling better soon!! 

On 3/18/2018 at 4:06 PM, WinterSown said:

Thank you. I was just at Stew Leonard's, my overload nemesis. They put one in right around corner, it's four houses and then across the street to the mall. The young man at the register asked me about my headphones, if they were noise cancelling. Ahhh...a teachable moment so I explained to him about sensory overload. 

"What? Is that like an LSD overdose?" 

Sigh. No, not that intense. I just want to scream and run out of here. 

"Most people do." 

I know what you are talking about. I lived 13 years in the upper catskills on a mountain. LOVED it but sometimes the birds would not shut up. Agree about the brilliant sun and then driving down a road as it flickers among the trees. OUCH

 

Seriously??? An LSD overdose......because everyone knows that that is like?????? Oh my goodness that is a crazy insane experience. I'm so sorry. Some ppl are so so....AHHHHHHHHH!!! Like where is your brain? Where do these comments come from? It's so crazy. 

A good doctor can be hard to find. You don't realize this until you actually get sick and need a good doctor or team of doctors on your side. I had to switch doctors recently for primary care, and I'm so glad. My new doctor is amazing and understands things so much better. It's so nice to feel like she's on side.  

I feel like this....almost every night. I can't handle things. A tub helps me too. You are not alone, and I'm glad to know I am not either. Thank you so much for this post!

I have tried Pamela's GF Bread, that has been really good. 

I also have a Fitbit Charge 2, for the most part I like it. But I have had trouble with it accurately tracking my heart rate, especially when I am riding the bike. It's very strange. But overall I have been happy with it. Like others have said it really shows when your heart rate has been high for 2-6 hours in a day why you feel so bad. So that has been really eye opening. Waterproof would be nice...

I haven't found the "root cause" there is some speculation from a virus I had when I was younger, but they don't really know. 

I am still working out how to help managing my POTS. I did just find a new primary care doctor who seems to really understand this, so I am excited about that. I hope that you can find a doctor you can trust and can help! 

I hope you can find a combination that works for you! Hopefully the cardiologist can help you get a plan that will work for you. I don't have anything else to add to what the others said, glad you are getting on the path to move forward. 

I have totally experienced this as well. We have family that live 4-5 hours away, and I rarely can make the trip if I am alone. When I can it takes me 2-3 days to bounce back. But recently even a drive an hour has been really tough. So sorry you are dealing with this as well! 

My heart rate changes very frequently as well with minor changes. It definitely shows the dysfunction in our autonomic nervous systems! 

I haven't had peppermint tea, but sometimes I have had success with peppermint essential oil on my stomach. I will have to try a peppermint tea again too, I am glad it is helping you! 

On 5/6/2016 at 6:03 PM, potsgirl101 said:

Hey guys I'm quite alone in my journey as a spoonie I don't have a lot of propel that understand what I go through and I would like some! I'm 18 and have pots and nureocardiogenic syncope 

Hi there! It can be really hard even with supportive family. No one can really totally understand what you are going through, and how you feel. It's awesome to have this community to be able to talk, if things are good, if things are bad, any old time! 

Thank you both!!! So glad I found this community! 

Hi all, 

I am new to the forums here. I was diagnosed earlier this year with POTS, but like so many of you my journey started many years before. Based on my dr, he believes I have had to 10-15 years, with the past 4yrs or so having every test under the sun done. 

It's nice to know what is going. For me, medications haven't helped much and just seem to aggravate my symptoms. But we are just plugging away at life anyway! 

I just thought I would introduce myself and say hello!