Is This Typical With Pots?

[Nikki]

The other day, I wasn't feeling that great so I decided to take my blood pressure laying, sitting, and standing. I probably should have realized that I shouldn't have stood up but I was curious, so I did it anyway. Once I was standing I felt like I was going to pass out so I quickly laid down on my led. Even when I was laying down though, that feeling didn't go away. I just felt on the verge of passing out. I keep describing it as a dream like feeling, and I felt very warm (even my tongue felt warm or numb, or something!) My blood pressure was 140/108 (when normally it's low) I basically had to lay with my feet up against the wall in order for that feeling to go away. I tried sitting up, and that same feeling came back. Eventually, I was able to sit up without it happening but it took awhile. This never happened so bad to me before like that. Afterwards, I was very shaky and had shortness of breath.

I've just been laying around all day yesterday (this happened Tuesday night). My blood pressure is still on the high side, but not as bad as that night. Laying all the time seems to have helped some. I'm just lightheaded..and wobbly when I'm walking around.

Has anyone had this happen to them? If so, is there a reason..Does something trigger these kinds of episodes? Does this kind of thing just come and go with POTS?

[icesktr189]

oh yes i have had that happen a lot.. especially feeling like im going to pass out when lying down. i dont know why it happens but the only thing that works for me is to get up, shift my position, and try laying down again

high blood pressure with my POTS is usually cause when my bp already dropped really low. i then get the tachy and adreneline surges ( could be why you felt hot) basically its your body responding to almost passing out

[MomtoGiuliana]

I've had similar episodes. I think this sort of symptom can come and go. For me, I get more episodes of symptoms before my period. People with POTS can have episodes of both high and low bp. We are sensitive to adrenaline, typically, and you could have had an adrenaline surge in response to low bp.

Keep in mind too that at-home bp monitors may not be as accurate as bp measurement by a medical professional. If your arm is positioned oddly, etc you could get a wrong reading. Anyway, this is what drs have said to me. Try not to worry too much. Maybe keep a journal of readings and present to your dr.

[HoudiniCat]

Yes, I get that from time to time too. I get very hot, irritable, disoriented, weak and it?s very similar to that pre-syncope feeling. I could swear I?m going to faint but when I take my BP, its very high and sometimes that feeling doesn?t go away even when I lie down. I had this happen in the ER once too when my BP reading was 148/120 (and its usually low too.) I?m shaky, weak and exhausted for hours (sometimes a whole day) after these episodes. I do believe its an adrenaline surge that some of us POTSies get from time to time but I would mention it to your doc.

[iheartcats]

Mine used to vary more widely before my mix of a Beta Blocker and Midodrine. Weird combo (even I said this when I went on it...wait, one lowers HR/BP, the other raises BP)? But somehow. It's helping.

Definitely talk to your doctor. There might be something to help you - it's awful to have those spells that affect for days.

[dezyrae2]

I have had that happen to me also. The past few days have been very bad for me. I cant wait till april to go back to the cleveland clinic for testing. I am hoping for some answers. I just added you to my facebook page of friends because i saw your link on this page. I hope you'll accept my request. My name on there is Desi Labanoski. Also I see you are from PA I am also.

[erickamcc0523]

The other day, I wasn't feeling that great so I decided to take my blood pressure laying, sitting, and standing. I probably should have realized that I shouldn't have stood up but I was curious, so I did it anyway. Once I was standing I felt like I was going to pass out so I quickly laid down on my led. Even when I was laying down though, that feeling didn't go away. I just felt on the verge of passing out. I keep describing it as a dream like feeling, and I felt very warm (even my tongue felt warm or numb, or something!) My blood pressure was 140/108 (when normally it's low) I basically had to lay with my feet up against the wall in order for that feeling to go away. I tried sitting up, and that same feeling came back. Eventually, I was able to sit up without it happening but it took awhile. This never happened so bad to me before like that. Afterwards, I was very shaky and had shortness of breath.

I've just been laying around all day yesterday (this happened Tuesday night). My blood pressure is still on the high side, but not as bad as that night. Laying all the time seems to have helped some. I'm just lightheaded..and wobbly when I'm walking around.

Has anyone had this happen to them? If so, is there a reason..Does something trigger these kinds of episodes? Does this kind of thing just come and go with POTS?

I've had those episodes, too... once while in the middle of Wal-mart with my friend a year ago... Scared him nearly half to death. Luckily I was able make it to the in-store BP machine to sit (and check my BP... it's been so long I can't remember exactly what it was, but it was much higher than my normal 115/60), because I would have fainted without sitting down at that time. Thinking my blood sugar was low and I was having a hypoglycemic attack, I ate a candy bar right then (I think a Snickers, which has quite a bit of salt, with the peanuts) and started drinking a water (don't worry, I paid for the empty wrappers.... got a few strange looks from the cashier... luckily my friend explained that I almost fainted with having a low blood sugar). The next 2 days, I could barely get out of bed... Even the exertion of rolling over would cause me to get very tachy and lightheaded. After a few days, the worst of it was over, thankfully. With subsequent episodes, I've had to actually take a nap afterwards because I couldn't even keep my eyes open and was SSSSOOOO exhausted.

I know what you mean about the tounge feeling very warm and numb at the same times... sometimes the sensation will go down my throat, and it feels like even my lungs are affected. I will have shortness of breath at the same time. I also get periods of disassociation and depersonalization (I used to be a psych major) that I thought was part of being depressed (I've been diagnosed with bipolar and anxiety in the past... looking back, I think that, at least in part, it was the POTS, as mood swings and anxiety can be a part of POTS according to NDRF).

My friend who saw me go through the Walmart episode said that my face was extremely flushed and that my pupils were VERY big and my gaze was fixed and glassy for a moment. I wish that he hadn't watched me go through that, yet I'm glad he was there, because I had to literally have a death grip around his arm to even make it to the BP machine. I just wish it hadn't scared him so much.

[MommytoSJEA]

I have had quite a few instances where im laying down, but yet still feel like im going to pass out. I get the room spinning, wow im really drunk feeling. NOT FUN! Now I have never thought to take my BP while this was happening. Maybe I should one of these times. Sometimes its so bad, it wakes me up. Not that I understand that...big surprise. But I wake up I think because Im feeling so poorly. And I cant get up, b/c Im so dizzy, yet I seem to think if I get up, Ill feel better. I have even tried to do the put your foot on the floor to "stop the spinning". (drunk remedy.........not sure if anyone else has even done that after drinking ;o) Yeah, it doesnt help.

Sorry you went through that, I have no suggestions. Just HUGS

~Kelli

[Nikki]

Thanks for all the responses. I've have three of these episodes in the last four days so I'm pretty much exhausted right now. Yesterday was the worst, my BP had gone up to 176/124. It's hard to recover from this happening once, let alone multiple times. I called the doctor on Tuesday, and they never got back to me..

I've been on florinef for about 3 months now..I was taking .1mg a day, then .2 because the .1 didn't seem to help. I'm thinking maybe it just didn't kick in until now, and maybe .2 is too much..So instead of waiting for the doctor to call back I just am only going to take .1 a day again..I never had these bad ones before so I'm thinking maybe it's because of that.

Hopefully I'll hear from the doctor today and get some answers from him.