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. 

16 hours ago, Pistol said:

Yes - it is possible if the ANS is able to compensate. 

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.

33 minutes ago, Clb75 said:

Have you tried an electrophysiologist or tried to get a TTT? If you think it’s dysautonomia, working with a specialist may be the next step. Regular doctors who are unfamiliar with it will misdiagnose you or tell you it’s anxiety, etc. Unfortunately, it takes awhile to get a proper diagnosis. Hang in there!

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.

3 hours ago, RecipeForDisaster said:

All I can say is that we are very similar... and I'm frustrated too. I'm barely functional, can hardly eat, sleep, or exercise although that's a central feature of my life and I'm very fit. My temperature fluctuates from one extreme to the other and I I don't sweat, either.

 

I don't have POTS, my TTT was inconclusive (partly due to the fact that I have painful and scary biopsies during it!)... but I'm persistently very hypotensive and forget about bending down! I avoid changing my clothes and if I drop something, it stays on the floor. I don't let myself lay down much unless I'm really about to pass out. I think about it and fantasize about it nonstop, though. I tell my doctors I feel like I have lost all of my blood but am also full of caffeine. I could pass out pretty much any time these days, and I black out very often... I'll also collapse a lot.

 

I'm prescribed 15-20gm salt daily. I crave it, but I don't think it helps much. It doesn't matter how much fluid I drink.

 

I hope you get answers and help... and if you do, please share! I don't know if we should feel better that there's someone else out there like us...

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?

9 hours ago, StayAtHomeMom said:

Have you been checked for Inappropriate Sinus Tachycardia? It was something my doctors ruled out in the beginning. 

Have you seen an EP cardiologist yet? Not all of us have but some see them. My local EP told my cardiologist to send me 3 hours away to a specialist for POTS. My TTT confirmed my POTS before the referral though. Glad he did though. 

I've been to a cardiologist, and anything and everything heart related came back normal, except bradycardia and hypotension. The cardiologist was the one to see the HR increase. But, my BP did drop (120/76 to 90/60.). He did diagnosed me with POTS, but I knew I didn't have it because I don't have a sustained 30+ HR. It shoots up like someone with POTS, but evens out within a minute or so. (e.g. My HR while sitting is 70's, shoots up to 120-130's, but not long after, heads back down to 70-80's and stays there.)

21 minutes ago, Spiders from Mars said:

@Eraena Also - how do I say this with out sounding creepy - are you female? I’ve noticed I’m way more symptomatic at certain points in my menstrual cycle, to the point where I can predict tremor episodes (more heat sensitive) etc. Might be helpful to chart, or find some other pattern. My EP didn’t bat an eye when I told him I wanted to do the holter and 24hr catecholamine he ordered during the week I ovulate. 

Yes, I am. I have noticed worsening of symptoms during my cycle. Usually it's a increase in lightheadedness and fatigue.

32 minutes ago, StayAtHomeMom said:

How do you not have POTS?

My HR doesn't stay sustained. It just shoots up, and then heads back down. But, I have noticed POTS-like symptoms after exercise. It exaggerates my blood pooling. My HR while sitting after exercise can be 70's-80's, but goes up to 130-140 and stays there. It goes away after cooling down. Maybe I'm a mild case of POTS, just have to stand for a long time for symptoms to occur. Or, just have to have to right "ingredients" for symptoms to become worse.

1 hour ago, StayAtHomeMom said:

Do you have another form of autonomic dysfunction? Have you had a PFT done?

Possible OH. After I stand/bend over I have pre-syncope (lightheadedness, vision dimming, noises sounds distant), but have not fainted, yet. I tried to catch the drop on my BP machine, but instead of going down, it went up (105/58 puls84 to 123/65 puls123). I have seen the systolic go from 104 to 78, and pulse go from low 70's to low 120's. I'm probably just too slow in catching the drop, or my system compensates the drop fast enough.

I have not had a PFT.

27 minutes ago, StayAtHomeMom said:

I don't know know if it is blood pooling, but I have the exact sensation. Seems overloading of caffeine is another trigger for that particular symptom for me, as well as all you named. Usually when I check my HR it is elevated too. Are you taking anything to help your HR?

I don't have POTS. I'm getting a full panel blood test on Monday, along with fasting for glucose test, just to rule out things that cause similar symptoms. But, everything at this point is coming back normal.

I've noticed that I have chest tightness when standing still in one spot. Usually standing still for 4-7mins causes it to occur. Sitting down or moving helps. It's a tight squeezing feeling in the middle of the chest, kind of like someone is squeezing your heart. Heat can also cause this sensation, if it's hot outside, or standing in front of a hot stove, or even opening a dishwasher.

Could this possibly be from blood pooling?

39 minutes ago, toomanyproblems said:

Other things in my autonomic system were slinging around too, such as internal temperature control (suddenly going from normal to burning hot to freezing cold on an hourly basis)

I can relate to that. Specifically, with my hands. My fingertips turn from ice cold to blazing hot in a matter of minutes. The hands sort of change colors, but not Raynaud's. Fingernail beds turn purple-ish/blue to red, and the whole hand turns pale to red. Maybe the red color is blood pooling?

My BP is already sinking. And it's not summer yet. Leaves me scared to think if this year is going to be worst than last year.

I finally got the exercise pedals. But, I keep on wondering if it was the right choice, because I can exercise while standing. While the constant lightheadedness is worse while standing, I feel like I'm being lazy, and not pushing my limits, if I don't stand up and exercise. But, then again, summer is going to be a pain. Not able to go outside because it's going to stay 85+ degrees, and possible "pop-up" storms.

On 3/24/2019 at 5:54 AM, RecipeForDisaster said:

Yep, I get very faint after exercise, sometimes during. I've passed it after a walk, or had to lie on the floor in my mud room for hours after coming back from a walk. I still exercise... occasionally I get this weird prickly itchy sensation in my legs during exercise, and my color is pretty gray purple.

 

I'm in a similar boat as the OP here-not POTS, TTT not revealing, but I'm treated as dysautonomia, mostly NCS. I have persistently  low BP for no reason all the time, though. It isn't just positional.

I get the same sensation while exercising. I haven't passed out before, but many times felt like I was going to.

I have persistently low BP also. Mine don't get down too low, though. But, again, with summertime, it'll probably go down to 70/40's.

Does anyone else have worsening of symptoms after exercise? Usually brisk walking causes my blood pooling to get real bad. I'm still able to stand, but I'll feel very lightheaded.

32 minutes ago, bombsh3ll said:

Hi Eraena, I'm sorry you are struggling. 

It can be frustrating not getting a clear diagnosis but then even if you demonstrate typical POTS on the test, that is in itself a syndrome and can be caused by a number of different issues, not all of which can be identified. A repeatable diagnosis of POTS like in my case, also doesn't necessarily lead to any treatment that improves quality of life or functioning. 

What matters is that you feel unwell and are having symptoms that are interfering in your life, and even without a specific label there may be several treatment options to help you feel better. Have you tried any medication yet? How about compression stockings if blood pooling seems to be an issue?

I do have compression stockings- knee high 30-40. But, blood pooling happens above the compression, so I tried to find thigh high, but all of them are not tight enough. I take Midodrine. The doctor want the dose up, probably up to 10mg.

Regarding your BP, if it is persistently low there are a number of medications that can be used to raise it. You mention it dropping when you stand, but does it then stay low or come back up again? Mine drops in the first few seconds which is only observed on continuous finger monitoring, but by the time it can be taken manually, it has shot back up above where it started. 

It comes back up again. The same thing happens, it drops, but doctors are too slow to catch it. I've also noticed a smaller gap between both BP numbers, specifically when standing still for a little while. 5mg of Midodrine seems to up my systolic by 10 points, but diastolic stays unchanged, staying in the 50's.

Lack of sweating can also be a sign of autonomic neuropathy, and there are specific tests such as skin biopsy or sweat gland stimulation test. 

I've been unable to sweat since I was young. I don't know if what I'm going through now, is something that's been there for years.

Are you able to go to one of the main centers specializing in autonomic disorders? They might be able to give you more answers, and most importantly treatment to improve your quality of life. 

I went to the Dysautonomia Clinic a few weeks ago. The doctor was perplexed, because it all sounded like POTS. But, she has helped, and gave a list of my "homework".

I also use a recumbent bike and seated indoor pedaller, and something I've found really helpful that is so simple & inexpensive is a small plastic spray bottle that I fill with water to spray my face when I feel faint & my body too when exercising. I do seem to sweat appropriately although have never been tested for this, but the water spray still really helps. 

Best wishes

B xxx