Normal HR, But still have symptoms.

[Eraena]

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.

[Pistol]

@Eraena - unfortunately the fatigue, brain fog weakness etc are all symptoms of POTS. What you describe is proof that improving numbers (as in your HR) does NOT necessarily improve the other symptoms. My sisters and I all have POTS and we all take a stimulant ( Ritalin, Guanfacine and/or Modafinil) for it with good results. It is a vicious cycle - fatigue and weakness make it difficult to be active and inactivity makes us more fatigued and weak …. In my case I benefit from IV fluids for all of those symptoms as well. Do you drink enough fluids? Wear compression hose? And - I know this sounds impossible right now but - when I am at my worst I try to go outside for even just 2 minutes. This stimulates circulation and oxygenation and therefore improves the brainfog and fatigue. For real!!!! Especially in the cooler weather it literally clears my mind. 

I am sorry you are feeling so down and I totally understand. Have you discussed this with your physician? There are meds in the treatment of POTS for just these symptoms. 

[lieze]

I find even though I sometimes feel symptomatic that if I get up every so often and try to do just a small task maybe for 5-10 minutes then sit down again with feet up rest repeat after several cycles of this I start to feel a little less of the bad stuff. It doesn’t necessarily take away symptoms when I am up and I can hit that place too where it starts to feel worse and worse as I do it to where I question do I need to stop? But it can help me shake off some of the bad feelings maybe gets circulation going to get up and move every so often. I am not sure if you are already doing this and I also know that this is not meeting our goal for what we would wish for our lives as far as the ability to be somewhat active at least. It does though take away some of the icky feelings for me and at least while I am sitting I can feel better at least for a while. 

[lieze]

I also notice certain times of the day where my body seems to function better. Early morning and late evening seem to be good for me some days. Not necessarily every day. So I sometimes wait patiently to feel a lift of symptoms and I can often get away with a bit of activity and I stay fairly symptom free. I often check my vitals part way through and they are often fantastic during this period. I have no idea why certain times of day just seem better. Or I can spend a day or two down and then have a good day randomly sprinkled in where symptoms ease and I can do more and it always amazes me during these times when my body is just ready. It moves and cooperated with ease and I get surprised by that. 

[Eraena]

@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.

[Pistol]

6 hours ago, Eraena said:

I feel wonderful in the morning. But as the day goes on, I notice my symptoms intensify, most noticeably the lightheadedness.

Diddo! I wake up super-woman every morning and by afternoon I am a Zombie. Part of it is the fact that I take Ritalin in the am and it wears off by noon, the other part is that being active and upright brings on the orthostatic symptoms. I have to schedule everything for am or it will not happen. 

[KaciCrochets]

I don't suffer a lot from orthostatic symptoms unless I stand still for more than five minutes. My heart rate is rarely tachycardic anymore. But I still can have all kinds of symptoms anyway. Today I was doing just fine and suddenly was hit with nausea, dizziness, headache, premature heartbeats, and was super hot. I chugged some Gatorade and went to lie down, where I was immediately freezing. After several hours and an ibuprofen I feel mostly okay but still have a rotten tension headache. There's no real rhyme or reason for these things sometimes. I exercise daily and haven't had an episode in a long time, I couldn't believe how sick I felt. There are steps we can take for improvement, but it's not a cure by any means. I hope you can find some relief, I can honestly say exercise, as much as I loathe it, helps me the most, followed by staying hydrated.

[Guest ScottS]

I often experience a mix of (what generally are recognized as ) POTS symptoms without an accompanying rise in my heart rate. Just a few days ago I woke up feeling more than a little bit off, and yet both my pulse and blood pressure were well within my healthy normal ranges. "Off" really doesn't describe it. I was dizzy and had to deal with significant brain fog, Fibromyalgia and Gastroparesis. After trying to fight my way through all the symptoms by following my standard routine (breakfast/wash up/ dress and off to work) I took a step back and did one hour or so of YQi (a mix of yoga and Qi Gung core strengthening exercises - fortunately for me I'm self employed and work out of my home). After that, things started to settle down and I was all the way better by the next morning.

 My POTS doctor (a cardiologist) calls POTS "a strange, rotten egg" of a disease. I agree.