emartins

I tell people a lot, but mostly so they're aware of my symptoms in situations where that would be helpful...at work...at the gym. Most of the time, I just tell people something simple like that I have to watch my heart rate and leave out the rest. I typically think, if you want to tell someone, ask yourself why you want to tell that person.

I've been in a sort of remission (POTS) for several months. I was able to start rock climbing and just got back from my first outdoor climbing trip in WV, which was amazing. But since Ive been back Ive been feeling horrible. I'm worried its going to be a downward spiral. I have a job that requires being on my feet for about 4 hours at time (crazy I know!) and I don't want lose it. My question pertains to the length of "relapses" (for lack of a better word). Has anybody been okay for a long time, then gotten sick again after being really active? And if so, how long did it last? Here is to hoping its just the flu.

I've been in retail for a couple months which is crazy because I'm on my feet the whole time. I've had a couple days where I feel like I'm about to pass out and my legs get sore but okay otherwise. Before I started feeling better, I was looking for desk job or receptionist job. It's likely that you won't be at your worst for the rest of your life.

Just wondering if people with POTS get generally itchy skin. It's been interfering with my sleep lately. I've been relatively asymptomatic so far this year so it's probably something else, but wanted to check

i had been feeling much better for a few months. I'm still doing okay. The orthostasis isn't as bad and neither is the dizziness, but within the last month I've been having a lot of trouble waking up (typically around 3pm!!) and am starting to be extremely fatigued. Do you think this is pots related or does it sound like something different?

Yes! I read something recently about how somatic hypervigilance can make symptoms worse, but I don't remember where it was.

My neuro wants to check for adrenal insufficiency, but she also said that more testing wouldn't really change my treatment at this point. I have low blood volume because I wasn't drinking enough water, so I'm sure that is also a contributing factor. Basically, we're going to see what happens with the lifestyle changes and if it isn't better by my next appointment, then we'll consider finding a cause.

I was not told specifically that venous insufficiency is the underlying mechanism. I don't have a whole lot of information about it either, but I know that it's been discussed before on these forums so you could try searching for it.

I feel like a lot of people stop coming here when they start feeling better, so I thought I'd pop in and maybe provide some hope at least for those with a similar diagnosis. After being diagnosed (secondary POTS, venous insufficiency, possible adrenal insufficiency), I was just told to increase fluid and salt and wear compression stockings. Within a week of doing those things, I felt dramatically better. I haven't really tried going back to the gym yet though. A little nervous for that, but I'm at least able to get my chores done. I almost can't believe that just drinking more water/Gatorade has much this much of a difference. I still have bad days of course and times when I have to sit down for a minute or times when my heart is racing a little too much, but my doctor (Cleveland Clinic) told me not to let that get to me because that will just make it worse. I try to focus on what I can do to make the next day better. While POTS is certainly not caused by a negative attitude, I've been learning how much power a positive attitude can have. I sincerely hope that all of you are able to find a way to manage your symptoms and live a life that makes you happy.

I've read that those are not the best because its so much salt all at once, but I'm assuming they help if you continue to use them.

I'm sure this has been discussed but I can't find it (and I'm too tired to try harder ?) How do you peeps increase sodium in your diet????? I like salty snacks like chips, pretzles, edemame, etc. but I've been trying to add a little salt to meals and I can't stand the taste. I know soup can have a lot of sodium but it's hard to find soup that has enough calories and macronutrients (I'm a vegetarian). I like soy sauce but don't know what to add it to. I should also note that I'm hesitant to constantly look at labels due to an eating disorder history.

Hi Sarah, I had the blood volume/hemodynamics last week. I was told my volume is low but they didn't give me specific results and it's not on MyChart. I can update if I find out. Also, I see Dr. Browning for the first time on Tuesday and I always get nervous for Drs appts. Would you mind giving me a general idea of what that appt is like? Is it different than the cardio appts?

Okay. Thanks. I think I understand.

Hey all, Just had my post tilt table appointment at the cleveland clinic. I was told I have some kind of secondary POTS (can someone explain what "not true POTS" means?), low blood volume, and venous insufficiency. This all seemed very nonchalant relative to how I feel. He just said drink more fluid, eat more salt, and wear compression stockings and referred me to a neurologist (I was able to get an appointment next week). Hoping the neurologist can explain it more. I'm frustrated because I was hoping a POTS diagnosis would be the end of my search for answers, but it sounds like it is just a label for a collection of symptoms and I still have to find out what is causing the symptoms. Can someone explain what primary POTS is as opposed to secondary POTS? Does secondary POTS have to do with the ANS too? Generally I feel more confused than I did before.

Tuesday, I think that's point. From reading this forum, I would think a lot of people relate to this difficulty of making decisions like this because there are risks no matter what. Particularly with straining yourself or playing it safe. The only way to cope is to learn how to balance.

This is very black and white. I think the trick is to find the gray. " You can tough it out, ignoring symptoms at the risk of getting worse, or you can trust one doctor's judgment at the risk of selecting unwisely. " You can keep your ailment secret at he risk of deception, or you can talk openly about it, at the risk of self-pity. " You can ask friends for help, at the risk of becoming a burden, or you can hold fast to your independence, at the risk of isolation. " You can strain your body to its limit, at the risk of harming yourself, or you can play it safe, at the risk of becoming an invalid.. " You can be angry about your fate, at the risk of bitterness, or you can focus only on your blessings, at the risk of self-delusion." -Cheri Register, The Chronic Illness Experience

Thanks for the tips!

After about a month of feeling miserable on the couch, I'm feeling much better. I still get tachycardic when I stand and have to sit down on occasion, but Im able to be moderately active. Sooo, I really want to start rock climbing. I'll start indoors. I'm wondering if anyone's tried this. There's obviously an extra risk, but I'm hoping I can make it work.

That's great advice. If you can't its okay, but don't just assume you can't.

Libby, I've always been thought of as the "lazy" (ADHD and POTS will do that....but I can be lazy sometimes ?) kid so I was often scolded for that. I think that's why I'm so concerned about making sure it is really that I can't stand up and not that I just don't want to. So similar issue coming from the other end of the spectrum.

I started having occasional (once or twice a year) episodes of presyncope about 8 years. I had some heart tests, but my doctor said I was fine just tachycardic. Until recently I just "sucked it up" and dealt with symptoms on my own as they were infrequent. Last year I started a day treatment program for an eating disorder. I started getting really dizzy after meals and sometimes wasn't able to lift my head or speak, so I ended up in the ER a few times. One day I was so nauseous I couldn't get out of bed and I would throw everything up even water. The ER doc (cleveland clinic) said all my labs were normal and suggested I had POTS. I had never heard of it and thought he was crazy. My doctor and I just brushed it off because of the ED. Now that I'm doing better ED wise and those symptoms aren't not better, worse even and more frequent, my doctor brought up POTS again and suggested I see a cardiologist at the Clinic. I've had my first visit and she agreed and ordered several tests. I still don't have a diagnosis, but my TTT is next month, so I'm hoping that will give me answers.

As a newbie to this whole POTS thing, I cannot answer your question. I just wanted to warn that cutting entire food groups, such as carbs, can be damaging to your health. And with everything that's already going on, that's probably not something I would try. Juicing in particular can be tricky. You need to make sure you get enough protein, fat, and carbs for your body to function. I would suggest finding a registered dietician if you can. This way you can try out different things without harming yourself. I've heard smaller meals throughout the day and good for dizziness and cardiac related symptoms, but I don't know about the gastro problems. I like Katybug's idea of keeping a journal to see what works and what doesn't. Hope you can find some answers soon and feel better!

Alcohol for me is the worst, but it's usually in the days after drinking (more than just a hangover). I wonder if you're drinking a lot, it's easier to ignore symptoms. And sometimes being drunk sort of mimics symptoms. I doubt alcohol actually helps physically, but maybe mentally?

This is sort of off topic, but I have an eating disorder history and am now weight restored...or close. My symptoms get a lot worse if my weight is even 5 lbs below my suggested range regardless of my food intake. BTW (POTS symptoms precede the eating disorder by several years)

Hi New to the forum. A question I've been asking myself lately is how do I know if my symptoms **** as much as I think they do or if I'm just sulking and exaggerating my symptoms. Does anyone else have this question. I don't want to push myself too much and risk making everything worse, but I also don't want to spend all day on the couch if I don't need to.