americaneagle32

I know when I was younger the children's specialist in Ohio she took me to see said that flu shots could potentially trigger/worsen POTS/NCS symptoms. She said some people are fine but others are affected. My mom ended up opting for me not to have them. Now that I'm older I still pass on the flue shot because of this. That might be worth doing research.

Yes! my biggest issue is feeling like I can't catch my breath. It's as if my lungs can't get enough of it. Maybe try breaking exercises to help. I haven't found a remedy I just have to remind myself to take it easy when I notice I'm breathing heavy.

Yes, I feel like because it's not visible symptoms that others can really see, it's easy for you to want to hide it. Maybe try giving your husband some information on it to read. That way he will know the signs and even be able to help when your POTS flares up. It's nice to have someone remind you lay down, put your feet up, drink some water when you are feeling sick.

I'm trying to seek out a specialist that actually has any inkling of NCS other than the paragraph they find in the medical handbook. The last doctor suggested that I need to be working out at least 3-4 times a week and that it going to be the biggest factor in helping my condition lol. I saw this doctor listed on the website for FL. I'm wondering if anyone has seen him: Dr. Fred Kusumoto May Clinic Any feed back or suggestions? Thanks!

@Aubreeisme, I feel you. It's been a hot summer. I'm good until about 88. It seems like the days it's in the upper 80's and 90's my symptoms are worsened.

I read that licorice can help. Do you think candy would be just as effective as tea?

Looneymom, Actually this past spring when I had my blood work done they said my iron was low. And I'll admit while I have iron tablets I haven't been taking them. Last night I went to Whole Foods and got B-Complex 50. I will go pick up some magnesium cirate as well! Thank you!

yes! the top ones I avoid are corn syrup and artificial sweeteners. Then wheat and grain seem to bog down my system as well but not like the other two

First off I'm so sorry for your loss. Losing a loved one is never easy. I also have had my condition become triggered from stressful times like this. It's like a double whammy. You're dealing with grieving a loved one and all the stress and emotions that come with it and then your condition is triggered because of it. My symptoms are essentially identical to yours. Last year I went through a similar situation. I was able to get through it by talking to other family and friends on a day to day basis and keeping a journal. That really helped me with stress and coping and then less stress on my body. I feel like if I'm able to keep my mind and body calm this helps to prevent the triggering of an episode. Don't forget electrolyte water or packets and keeping your feet up or support socks. I hope that helps.

This is great! And adds much needed humour to it! I'm sending this to my sister! Thanks

Does anyone feel like their symptoms are worsened and episodes are more frequent in the summertime heat? I was diagnosed with Neurocardiogenic Syncope about 10 years ago. I live in FL and this summer I have been struggling with the heat. I usually manage my condition pretty well but as of recently I have been having episodes at least 1-2 times a week. I work and go to school so my current schedule is pretty packed. I hate feeling like my life is being jeopardized because of this. I recently have had to call out of work from episodes. When I first was diagnosed I couldn't go a full day without have an episode. I sometimes would lay there for hours on end in dizzy spells. I finally found the right specialist and the right medicine (proamatine). I was on the proamatine for close to 8 years. I currently haven't been on any time of medicine for about 5 years. Since that time I feel like I have come a long way. I would have an episode once every couple months and not nearly as serve. I was able to get off the medicine and I had maintained my condition fairly well. The biggest thing I dealt with being off proamatine is chronic fatigue. I have been making sure I keep up with my fluid and salt intake, electrolytes, and keeping my feet up anywhere I go. This has all worked well for me up until now. I feel like the harsh heat is triggering my condition. I don't want to feel defeated or have it overcome my life. Even though I'm not a fan of taking pharmaceuticals long term, I starting to think that maybe going on a regular prescription is the best route at this point. I've also been looking into some natural remedies to implement into my diet. If anyone uses anything or knows of anything feel free to share. Some things I found were Vitamin C and E, Gingko and ginger root for Low blood pressure. And for poor circulation Vitamin C and E as well, evening primerose oil, cayenne and garlic.

I suffer from this as well. It's frustrating dealing with it at times. I think all the lights and noise are a trigger to stressing the body and thus sets of my neurocardio. I try to limit how many activities I embark on and then when I am somewhere I make sure there is a place that I can sit down and break social rules like keeping my feet down. Try keeping electrolyte water and salt packets with you and keeping your feet up and that really helps your body with the over stimulation of surroundings

I hear you, I also live in FL and I'm having the same issues. The doctors I try and see either don't know anything about my neurocardio or they pretend I do and send me on wild goose chases with medicine and testing.