julieph85

This happens to me as well and I have definitely noticed it is worse when I'm in a flare. I can feel my whole body move with my pulse like others have said. I can actually see my pulse in my stomach as well as my neck at all times. For me it is absolutely related to my pots because I never experienced it before I had this illness. I believe it is from NE being released during times of low blood pressure. I think it is from high stroke volume in the heart. Anyway it is definitely annoying! I try to ignore it as best as I can.

What do u mean by the colds hands and feet? Does that happen to u on a beta blocker?

My pots symptoms are 10x worse from 8am to 2pm and way better in the evening and at night. When my symptoms are at their worst in the morning, my hands and feet are white and ice cold and I am extremely jittery. This has been described to me as peripheral vasoconstriction caused by high levels of NE. In the evening I am no longer jittery, my hands and feet warm up, and I am no longer vaso constricted. In fact, my veins balloon up very bad and large amounts of blood pool in my hands and feet to where my hands are actually uncomfortably heavy. I'm assuming the NE levels are dramatically lowering which stops the peripheral vasoconstriction. Question- why the dirunal pattern? Question- if the NE is a compensatory mechanism for pooling, why do I know longer need it at night, especially when I appear to be pooling more? Does anyone else experience this phenomenon?

I developed severe IBS for about 9 months, got put on bed rest for pre term labor for 14 weeks and when I got up at the end of the bed rest I had severe tachy, dizziness, shortness of breath, and chest pain when standing. I have had all this ever since and it has been 2 1/2 years

I have noticed that as the day goes on my urine gets darker. I also feel better as the day goes on

My personal theory is reduced blood volume. Think about it- if you mix a regular dose of meds with a smaller amount of blood it is going to be more concentrated then if you mixed it with the "normal" amount of blood. I think this is why we usually do okay with pediatric doses of meds

Hi, this also happens to me. It was captured on a two week holter monitor. Basically what happens is once I first fall asleep it goes down into the 60's like it is supposed to but about 30 minutes in it rises suddenly usually into the 130's to 140's and it will stay that way for some time. Then it will gradually go down and then shoot back up again. This will happen over and over again all night long. It used to wake me up every night with that first initial rise and sometimes it would be as high as 180 and last for up to 30 minutes like that. I think my body got use to the constant tachy all night because now I don't usually wake up from it. However like Sue said, I don't even check my pulse anymore when it happens but I can tell its high because I can feel my pulse pounding in my chest. It is very disconcerting to know my pulse is racing all night while I'm sleeping, but I've just resigned myself to the idea that there isn't anything I can do about it because I can't take beta blockers. Also my cardio said it is a safe rhythm so it won't kill me my pots doc told me this constant sleeping tachy is likely the result of my BP dropping too low during sleep so my body is trying to acclimate by causing the tachy. He said the sudden surges are also likely pre syncope which is why my body wakes me up when they happen.

My gums are so enflammed they bleed from putting pressure on them with my tongue . This makes no sense because I don't have periodontal disease or cavities.

Hi Jenn, yes, she really said that to me . I actually felt really defeated by it and started to cry. I got myself together though and just told her I respectfully disagreed. In a way I don't blame her because until I got pots I probably wouldn't have understood this either. Also, her perspectives are coming from a psychological frame work so I'm sure it is really hard to see outside of that box. When I talk to doctors I also don't mention anxiety for the same reason as you. Instead I say "catecholamine surge" lol

I completely agree. I have also been to psychologists and psychiatrists to help deal with my anxiety and the psychologist actually argued with me that I don't have pots and that this is just panic disorder. I tried desperately to explain the differences and even offered to bring in my reports from my cardiologist. She was just so convinced it was just medical anxiety and not a real disorder. Of coarse she had nothing to say when I said have you ever heard of panic disorder being orthostatic? She later told me she thought I had a phobia of standing... LOL! Needless to say she no longer gets my $100 an hour. I wish there were psychologists that understand anxiety's ROLE in pots, instead of using anxiety as a cause of our symptoms. I know I could definitely use help in getting my hyper vigilance under control and I'm sure it woul help my pots...

I get that too Puppylove, except mine are usually in the morning It is likely anxiety caused by elevated catecholamines. That would also explain why your BP and hr are elevated during this time. I usually just wait for it to pass, and sometimes it precipitates a major tachy episode (such as during the night). I know how you feel, it is such a bad feeling, but it is just the crazy SNS acting up per usual!

that is great Jangle! I've been doing 20 minutes on the recumbent bike everday, and i also notice an improvement for about 6 to 12 hours afterwards. i'm slowly working my way up to 40, and then on to the eliptical.

This is just something to think about guys- the DSM IV criteria for panic disorder includes that the attacks come "out of no where" and are not precipatated by any causal phsychological factors. The very definition of a panic attack is that it comes "out of the blue". You do not have to have any anxious thoughts beforehand to experience a panic attack. In fact, that is what is so scary about them and what leads to the never ending cycle of anxiety. Most of the anxiety people feel that experience panic attacks is not anxiety during an attack, but constant anxiety about a future attack, because they come on so unpredictably. I also agree with previous posters that the anxiety we experience is not caused by a psychological trigger. I agree with that 100%. The point is that it doesn't have to be. I absolutely think the culprit is the overactive sympathetic nervous system, via elevated NE, that triggers the anxiety in pots. This does not changes the fact that it is there. Also, so many are so quick to say "its not anxiety, i don't have anxiety,...." but what is wrong with having anxiety? I'm not saying pots is an anxiety disorder AT ALL. Pots is not psychological AT ALL. However pots DOES have anxiety as a component to this illness and we do experience panic attacks. In fact a "panic attack" and "adrenaline rush" are virtually undistinguishable and are IDENTICAL physiological phenomenon. Just some things to think about.

I had GAD and panic disorder as a teenager that was caused by weaning too quickly off of Wellbutrin. I was anxiety free for about 4 years and then the pots hit and it has come back some I believe that there is an anxiety component to pots because of the over active SNS and I also think it makes any underlying anxiety worse for that same reason. We are all extremely hyper vigilant - constantly researching, obsessing, checking vitals, going to new doctors, etc. these are all indicators of massive anxiety. I do believe that this has an organic cause and is related to the NE levels. I think a lot of us with this illness also wrongly write off anxiety and think that every symptom is a "pots attack" when in reality what we are experiencing is a panic attack. Having lived with panic attacks for years and I went to graduate school for clinical psychology, I feel like I have a good handle on my anxiety and I'm able to tell what is coming from the SNS and what is not. I thInk a lot of other potsies would benefit from accepting the anxiety that comes with pots more, and try to decrease their hyper vigilance. Just my opinion

Jenn, maybe You can try large amounts of cranberry juice and azo tablets to keep your urine very acidic?

Jenn , I encourage you to ask your doctors of you can try prednisone or methotrexate.

Rama, my symptoms are bad from about 8 am to 1pm and then start improving to where I feel my best at about 7 pm. Like you they build all morning and peak around noon. My take on this is that it has to be related to hormones.

My HR and BP go up dramatically after eating carbohydrates and I get severe tremors, jitteriness, and anxiety. My cardiologist told me it is because of insulin. It is secreted in large amounts after eating any amount of carbohydrates. Insulin is a very potent vasodilator, especially in the gut where a lot of us tend to pool. The adrenaline is released afterwards to try to constrict the vessela which is why the BP goes up.I encourage you to do this test- fix him bacon and eggs and water only to drink and do the same vitals. I guarantee you will not have the same change in HR and blood pressure. A lot of people with pots think they have problems after eating because of either hypotension or redistribution of blood to the stomach to help with digestion. Those are actually uncommon and most of us, in my opinion and my doctors opinion, cannot handle even small amounts of Insulin. the reaction we get to eating is not because it is a big meal but because carbohydrates are in it. Does your son often feel better pots wise when it has been a few hours since he ate? I only tolerate proteins in the morning and afternoons. If I eat a thing with sugar in it, even natural ones, before 2:00 I'm am sick with adrenaline. Try the protein test.

Sue, C peptide effects your body's sensitivity to insulin. Have you ever had yours checked?

Interesting. Causes hypovolemia. A lot of us have sharp pain over the heart. I read in an article a few years back that some docs think that the pain is caused by abnormal pressures in some heart chambers. Maybe ANP is being released and worsening the hypovolemia? Just a thought... http://en.m.wikipedia.org/wiki/Atrial_natriuretic_peptide

Yes I believe that is the cause, when I first got pots I would faint in my sleep nightly, and would wake up with room spinning and hr's in the180's

Thanks

My lactate was tested at mayo and was low. If memory serves from a previous post, lemons also has low lactate

I'm really sorry you are going through all of this. Have you ever noticed the flushing occurs with the diarrhea

When you say palps, do you mean skipped beats like pvc's or do you mean tachycardia?