Describe Your Symptoms Upon Standing And Then Sitting

[Guest Hanice]

Without looking at anyone else's posts to avoid forgetfulness, write your symptoms when you stand up and then when you sit down.

[Guest Hanice]

When I stand up: I have gotten used to breathlessness when I stand up, so I take a deep breath as I stand up, instead of being out of air mid-walk.

I feel unfocused, like I'm trying to keep myself together.

Depending on how high my hr is the severity of breathlessness.

When I sit down I get a chocking feeling in my throat and I can feel my heart beat and usually when I taake my bp as Im sitting, I will have bradychardia for a few minutes.

[khaarina]

When I stand up I get hot, shaky, sweaty, dizzy, short of breath, tingling in my hands and feet, ringing in my ears, I forget things and just feel like I can't think properly, my lower arms and legs feel hot and swollen (blood pooling I guess), sometimes my veins get bright blue and bulge in my hands and feet especially, my feet get blotchy looking, sometimes I feel nauseous and get heartburn and hiccups, and I often sneeze and get a runny nose. This all happens within about 4 minutes usually. If I stand long enough I will pass out. Just before that happens I feel pressure in my head and I feel like I can't hear properly, like when water gets in your ears.

The symptoms I get while sitting are about the same, but they usually come on more slowly and I am not sure that I would pass out while sitting. If I sit after standing many of my symptoms are relieved temporarily, but not for long. If I sit up after lying down I usually get an overwhelming feeling of fatigue as the other symptoms are coming on. If my arms and legs are down, it is worse.

[MomtoGiuliana]

When I sit or lie down I often feel "normal"--minimal symptoms. Even on good days, when I stand, I often get palpitations or notice a fast heart rate and/or can get a sort of weak feeling in my arms and possibly legs, especially if I have not adequately hydrated. usually it is worse in the morning and not noticable by the late afternoon.

[YolaInBlue]

Khaarina, reading your posts, your symptoms look a lot like mine. Only I am not passing out. For several months I was able to build up to standing and taking evening walks without significant tachycardia, but that changed again for the worse about a month and a half ago, without any reason I can think of. I am shaky now, dizzy, tachy (biofeedback helps me sometimes with that), I have sudden jumps and falls in blood pressure, tingling and numbness in hands, shoulder and neck pain, bulging veins in feet and hands , nausea and sort of burping, head pressure, ear pressure, feeling hot with the exception of my very cold feet, not to mention the weird thing my pupils do, but that doesn't depend on orthostatic position. Brain fog is worse when standing. Some of this symptoms I get also when sitting or lying down, which seems strange for POTS, so I am trying to get an appointment for MCAS testing. Definitely all my symptoms are worse when standing. Standing and walking (when I can) leave me exhausted.

[khaarina]

Yola, I see you are taking Florinef. Does it help you? I tried it before I got put on Midodrine and Florinef made me feel awful. It increased the pressure in my arms, legs, and head so I to stopped taking it. I have thought about trying it again now that I am on Midodrine because I always feel so dehydrated. P.S. I only pass out if I push myself past my limits during TTT or Poor Man's TTT.

[YolaInBlue]

I had problems with Florinef the entire first month: blood pressure spikes, horrible headaches, strange pressure in my eyes. At the time, I was seeing a local doctor who said this is the only medication he's aware of for POTS, so I just needed to stick with it, but I might adjust the dose. I was started on 0.2mg at the hospital from the day of diagnosis, not gradually, and I think that was the main problem. If I knew what I know now, I would have started from 0.05mg, slowly increasing. I lowered the dose to 0.075 (half a pill in the morning, quarter in the afternoon) and was on that dose for several months, as it seemed like the best dose for me, keeping me hydrated, much less lightheaded without nasty side effects. I don't know how much it helps me now, but I cannot imagine pulling myself out of initial flare without it. It was either Florinef or IV fluids. Midodrine comes close second for me out of the meds I've tried.

If you decide to try Florinef again, please make sure to supplement potasium (I take 20meq) and possibly magnesium. When I was on initial dose I tested low on potassium.

[Confusedguy]

Standing to sitting does not bother me. Now going from sitting to standing or simply bending over is always an adventure for me. Severe dizziness, lightheaded, eyes won't focus and I believe people call it also "brain fog". This happens 75% of the time. I am extremely careful at all times.

[Guest Hanice]

Confusedguy you made me lol with your awesome sarcasm! :-D