Eraena

I've had heat intolerance and the inability to sweat since I was a child. I was diagnosed with POTS two years ago. It's very well managed with Florinef, with a few POTsie days from time to time, of course. I know the importance of exercising, and not getting de-conditioned, as that will worsen it. But since I can't sweat, I have a hard time doing cardio, or anything raising my body temperature. I tried cardio yesterday, had water nearby and a spray bottle, too. I got too hot in the process, and it caused my POTS to go haywire. I thought cooling myself down with a spray bottle would be enough, but apparently it wasn't. I don't want to do my exercise pedals, or any exercise lying down because It doesn't raise my HR, and since my POTS is mild, I feel like I should keep myself upright. Does anyone have any tips?

@Pistol I haven't been drink enough fluids lately. I used to drink around 80-100oz, but now around 50ish. I need to get back on track. I have knee-high compression stockings. They don't seem to help. I need thigh-high or even waist-high, as I've seen blood pooling over the stockings. I've also seen blood pooling in the hands and forearms. I tried thigh-high, but they felt like they weren't constricting enough, and also felt uncomfortable. I felt good today. I went for a walk with my Mema for an hour, then went to Aldi's. Got home and had a little "hiccup" in symptoms. I agree too, the cold weather is helping a lot. During the hot months I would try to squeeze in a walk in the late evening, and would come back home very symptomatic with dark red legs and hands. But, since it's cold, I rarely become symptomatic after exercise, unless I do get hot during exercise. @lieze I find that odd. I feel wonderful in the morning. But as the day goes on, I notice my symptoms intensify, most noticeably the lightheadedness. At night-time It can get unbearable. Then I go to sleep, wake up, and feel much better. Maybe it's because of being upright for too long? POTS can be too unpredictable, from hour to hour.

I've been on Fludrocortisone for the past 5 months. It has helped me tremendously with my HR. My HR now only increases 20-30 beats sustained.(I'm 18, so I don't fit the 40bpm criteria anymore.) Even though it's helping, I still have symptoms as if my brain is still not getting enough blood. Lightheaded, brain fog, profound fatigue, feeling weak and lethargic, you get the drill. Laying down is the only time I feel clear-minded. My brain feels full, and I feel energetic until I lift my head up again. I've literally been crying lately (Yes, sounds cringey.) because I'm tired of feeling exhausted. I don't want this to be my new normal.

@bombsh3ll I'm on fludrocortisone. It's suppose to help me retain water and salt to increase blood volume. My BP now is 108/62. I feel a lot better. I generally feel worse when it's between 80/40's and 90/50's. It's been chronically low since last year, and that's when all the symptoms started. Thankfully, I rarely see my systolic below 80. I've going to the dysautonomia clinic in Birmingham, AL. Dr. Paula Moore is very nice, and only focusing on the symptoms for supportive treatment.

@bombsh3ll I’m sorry for what you’re going through. I agree with living with anything else besides this. I wish it was a quick and easy fix. My diastolic does that very similarly, but probably not too excessive. (e.g. Sitting BP 94/51 - Standing BP 97/79.) Your heart fills up with blood during diastole. Maybe it’s raising higher to try to get blood flowing to places, more specifically, the heart and brain. I’m not a specialist by all means, but that’s what I think what’s happening. I got exercise pedals this year in March. Exercise overall hasn’t been helping, but I know overall, exercise is good. Thank you for your kind words. I’m glad I’m not alone in all of this, and have people I can talk to.

I've been taking fludrocortisone for 4 months. I got my tachycardia almost fully under control. I only get tachy when I get too hot, or eat a large meal. But, other symptoms still persists. (e.g. constant lightheadedness, low BP, blood pooling.) Even though I'm not tachy when standing, I still feel like "waves" are crashing upon me. It's hard to explain the lightheadedness. It's like standing up too fast and feel lightheaded, but that feeling is always there unless I'm lying down. I'm glad the med is controlling the HR, but I was hoping for other symptoms to have some alleviation. I know I keep talking about the lightheadedness, but it's literally there every single second. It's hard to ignore. Has anyone else experienced this?

Here in Alabama has been hot. I wish the highs were in the low 50's. That'll feel like bliss to me.

@Pistol I'm thinking about doing that as my last option when symptoms become too unbearable. I can do ok with avoiding triggers that make symptoms worse: heat, large meals, hot showers etc.. I find doing calf raises (If I know I'm going to stand still for an amount of time) helps slightly with HR, lightheadedness, and even alleviates chest tightness. By the way, does anyone else have trouble taking your BP while standing? My BP machine spits out error after error, and If it does catch it, the pulse pressure is low. It can detect just fine when sitting/lying down.

I’m on Florinef, and have been for 3 weeks. It hasn’t helped, but I’m pretty sure it’s because I’m not consuming enough sodium. I drink 80-100oz a day, but I find 5000mg of sodium a day a little hard to reach. I’m not on a beta blocker because of low BP. And also a slow heart rate at times. I think staying on Florinef for the time being would be ok. I go back to the doc in October for a follow-up.

For a long time I’ve been having chest tightness when standing still. I wondered if it had to do anything with my BP. It would only go away if I sat down or walked around. So, I decided to stand still for several minutes.

Each time I eat something simple, like a PB&J sandwich, my heart rate goes haywire. 89/58 pulse 56 -Morning - Sitting 103/60 pulse 79 -Morning - Standng 101/68 pulse 93 -Sitting- after eating 105/77 pulse 139 -Standing for 11mins - after eating. (Got free active minutes on my Fitbit by doing nothing.) I still find it funny that I don’t have POTS, but something like this can happen. HR goes back to normal once digested.

I have blood pooling, but no excessive tachycardia. I stood in one spot for 30 minutes as a test yesterday. My HR only got up to 106, but my legs were purple with pink spots. They also felt heavy and itchy.

Is it possible to have blood pooling without POTS? I know someone with blood pooling, but don't have POTS.

I've been to a electrocardiologist and had a TTT. Electrocardiologist diagnosed me with POTS, but found out it's a different form of Dysautonomia. TTT came back normal, but still have symptoms when standing up manually. I've been to Dr. Paula Moore, in AL, Birmingham. She was perplexed. It sounded like POTS but symptoms don't completely match up. She went ahead and treated me as if I had POTS. I do have answers. I know, at least I think, it's Dysautonomia. I created this post because I'm doubtful. It isn't severe, I'm not bedbound, and I don't faint. I don't know what I'm doing. I guess I'm just frustrated.

I got a blood test a few days ago, and told myself, "If it comes back normal, it's a high probability that I have Dysautonomia.". I'm still doubting that I could have it, since it's mild, but still causes discomforting symptoms. What'dya know, they just called and said everything came back great. No nutritional deficiencies, my fasting glucose is normal, thyroid is normal. All is within normal ranges. I also got my heart and adrenal glands checked last year, which came back normal. But, I don't feel "normal". Why am I constantly lightheaded? Why do I switch from scorching hot to freezing cold? Why can't I sweat in 95 degree weather? Why does my BP stay down persistently low? Why does my HR race up to 30-70 beats more upon standing? I, for the life of me, don't want to bend over to pick up a sock, 'cause I know when I bend back up, I'll have pre-syncope and my heart will start freaking out. The only thing these symptoms point to, is Dysautonomia. I look up my symptoms. Yes, I use Dr. Google. "It must be anxiety, causing my lightheadedness. I must be unfit, because I don't sweat. I probably lay down too much, which is causing my low BP.". Yet, those things don't fit. I rarely get anxiety attacks, I can jog 30mins without stopping, I'm up walking around, because I don't want to be called lazy. Sorry for the complaining. Since the blood test came back normal, I guess it's time to salt-load?