belayergirl

It has been a long time since I last posted, but I am curious about people's experience with fasting with POTS and NCS. I am graduate student in Wilderness Therapy/Counseling and part of the curriculum is a three day vision quest/fast in Southern Utah. I am already quite nervous about my POTS and being on my own in the desert for three days, but not eating has me freaked out. The fast is an option that I would like to consider, but only after research. I know fasting can further lower BP, which is not ok when I am currently averaging 90/86. Water and electrolytes are a must and there will be an emergency buddy system. My midodrine and salt tablets will be coming as well. Am I the only one freaked out by this scenario? Has anyone else done an extended fast with POTS and NCS and what has been the outcome? My POTS is somewhat well managed, I haven't passed out in over a year, and I can handle physical activity (I am a runner...). Thanks, Nicole

I actually have the same question. I recently got a garmin forerunner w/a heart rate monitor that I have started to use for running. I am in the heart of training for my second marathon and have noticed that my HR is ridiculously high and I was wondering if this was due to the POTS. The last time I was into my EP he said if I could handle running it would be great for me to build up leg muscle to keep the blood moving from my lower body to my upper body. He did not mention anything about my HR. I am averaging about 178-180 over any given run, that seems really high from everyone I talk to. I can still carry on short conversations and normally don't start "panting" until I hit 190. My resting heart rate (that's sitting... or laying...) is 65. I haven't noticed too much of a difference when I take my midodrine before runs. Is this dangerous? Is it because of the POTS? Yikes, not gonna lie I'm a little bit paranoid that A. I'm gonna pass out (the better option) or B. Eventually give my self a heart attack or stroke. I would be interested in any feedback as well...

Walgreens ordered them for me, it wasn't a problem at all, and they had them the next day. They are fantastic for hot weather when my body is already working over time. Good luck

I take ORTHO TRI-CYCLEN, and have great luck with it, although, I do tend to get a period after the second month on occasion. Someone mentioned Yasmin, my doc actually thought about putting me on that but was concerned about the POTS and the possible side affects with potassium, has anyone had a problem with this? I have a doc appointment Tuesday and it would be a good time to bring up birth control.

I see my electrophysiologist every six months, before that was my cardiologist every six months. They both basically review my meds and check in on my symptoms. Good luck on getting a routine Nicole

I too have problems with the creepy crawly feeling on my head. Midodrine is hard for me to take if I know I will be napping at all; anytime I lay I start to feel my head pulse and my heart pound. I have reserved taking Midodrine only when I absolutely need it. Have you tried other meds (florinef) or things like pedialyte and thermotabs? Nicole

Dairy and refined carbs (bagels, muffins, etc...) seem to be the things that make me feel the worst. I'm a vegetarian, so fruits, nut butters, soy, seem to do ok. I typically eat a decent sized breakfast and graze throughout the rest of the day.

For the most part I'm fine. There are definitely days where rock climbing is difficult because of dizziness and becoming dehydrated. Last summer I was working manual labor at 14,000 feet and I had to be super careful; getting enough fluids, salts, rest, etc. I just started running because I'm out of climbing due to a partially torn rotator cuff, and I have found that I do not feel symptomatic at all until I start stretching because my head is below my heart and I have lost fluids and salt.

I am 5'7" and weight about a 134 lbs. When I was diagnosed I was around 125lbs. My weight tends to fluctuate season to season, because I spend my summers guiding backpacking trips or doing trail work in the rockies. I do have to be super careful when it comes to maintaining weight and hydration in the summers. I haven't had to give it up yet, but I know I'm walking a fine line each year.

I have a fairly mild case as well, compared to many. I'm really hoping to grow out of it , maybe that's wishful thinking. I have passed out three times and the dizziness goes in flares. As for cardiologists at Heart Center of the Rockies, I really like Dr. Whitsitt, but he admitted that I was past the course of "orthostatic" 101, when he couldn't find my bp upon standing. That's when I was referred to Dr. Nath (EP), he knew what he was talking about, but was only in the room with me several minutes over two appointments... Because of an insurance mix up I had to see a different EP for my third visit, Dr. Johnson. He was fantastic, very open to my opinions about meds etc... This would be my recommendation. The website for Heart Center of the Rockies is, very fittingly, www.heartcenteroftherockies.com. The website has bios of doctors etc... Fort Collins is a cool town if you do make it down this way, make a mini vacation

The worst thing about shopping for me is when I squat down to look at something and stand backup. It always catches up with me and I get dizzy. My husband is ready to play "catch" just in case. He has got to the point that he offers an arm automatically when I stand up. Nicole

I'm in Fort Collins, Colorado (yah, I know 10 hours from Boise), but I have had pretty darn good luck with some of the doctors from Heart Center of the Rockies here in Fort Collins. I was diagnosed maybe two years ago with POTS and NCS, after several years of struggling to get someone to take me seriously. My family doctor referred me to a cardiologist at the Heart Center, whom I adore, and this summer he referred me to an Electrophysiologist who has been wonderful! There are two EPs there and both know what they are talking about, but one definitely has a better bedside manner. Not sure if this helps, but it might be closer than being forced to go out East. Good Luck! And let me know if you want names and numbers, I am more than willing to help.

I am currently seeing a chiropractor who adjusts my cervical vertebrae to increase blood flow to the head. He also put me on an adrenal support vitamin with B-vitamins, which helps the dizziness when I get really stressed. I also go for massages twice a month. My massage therapist practices cranio-sacral therapy which also increases blood flow to the head. I have had some luck with both of these things. Either way it still feels great