navyblue

This stuff usually waxes and wanes in severity, and the cause is not often clear. Aside from trying to keep a defined sleep schedule, all I really know is to wait it out until you get back to "baseline". The time change makes me feel sluggish too.

I HAD this, but now it's intermittent. have hope!

Yeah I can run, but I can't even do one correct push-up...very strange.

Thanks all for responding. No, I've never had a migraine, thank goodness. Still getting headaches but not constant, so I'm grateful for that.

So I never got headaches before. Not in the whole 10 months that dizziness has been an intermittent problem for me, and not int the 3 months or so since I discovered POTS heart rate changes (even though they don't always happen now with standing up.) Occasionally, I'd get one from sitting in the sun too long or sleeping in too much or something like that, but no biggie, it would go away. For the past couple days, probably due to hormonal and tension causes, I've had many mild headaches and one bad one. This is just the past couple days. And yet, I'm having all these stupid thoughts that this is the new normal- daily mild headache. I don't know why. I just keep reading all this stuff online about Chronic Daily Headache and all these post of people with headaches for years and........it's just so scary. And my brother had a chronic headache for months (in fact, if I asked him about it now, he'd probably say he still has it, he just doesn't talk about it much anymore). Monday's afternoon headache made sense- I had gotten very little sleep, took a test, and then ran 3 miles, which was probably too much. But Tuesday and today I've woken up feeling okay and for some reason TOLD myself "The headache will come on" and lo and behold, it does, and I struggle with mild headache the rest of the day. What is going on? Were things too good to be true. I would have thought this type of issue would have happened when the rest of my symptoms were bad and when anxiety was higher...months ago. This makes no sense. Why am I so convinced I now have Daily Chronic Headache? Normally my symptoms and problems cycle on and off, so I would think that this would too. What are people's experiences? Thanks for reading.

Hi all, I self-diagnosed POTS after pretty sustained heart rate supine-to-standing changes of 30 bpm and over, measured with both a bp monitor/heart rate monitor and later with a fingertip pulse oximeter. It seemed pretty clear....things like 80 to 120 and 70 to 110 and things like that. Consistent over weeks. Coupled with my symptoms of dizziness and fatigue, it seemed like the clear answer. Things are a little different lately. I've been doing cardio 3 times a week for about a month and it's been awesome and I've felt better and more functional, but I still sometimes feel POTSy, like this weekend. Yet, I no longer really have the corresponding heart rate changes. Since cardio (usually running about 2 miles), my heart rate has been pretty stable. Going from 70 to 80 supine-to-standing..basically not POTS. It's awesome and I'm so grateful that the exercise program worked so well, but in a way it was almost nice that it used to be that when I felt sort of lightheaded and fuzzy and fatigued I could check my HR and it usually was pretty high...it felt like an explanation for everything. Now I'm doubting myself re:POTS. Like today. 70 to 72! I mean, that's amazing, but like...I still feel tired, dizzy, and headachey today so it's a little frustrating to see those good numbers. Now I'm wondering "well, what is it?" Does this happen to any of you or are your heart rate changes always over 30 bpm? Also, my BP, both systolic and diastolic, raises by a good 30/20 when I stand...which I find odd. But I don't have any hyperadrenergic-type sweating, tremor, or anxiety.

Hi all, Recently I've been doing a lot better, for which I credit exercise (I'll probably make a separate encouraging post about that later) But one thing's been really bothering me, and has popped up again recently with a vengeance- lower leg tingling and numbness. When I first had leg tingling and a sort of "cold" numb patch on my leg, about 8 months ago or so, I got REALLY scared about MS and even wrangled an MRI referral out of a PCP. The brain MRI w/ contrast came back clear. No lesions. The cold patch gradually faded. But over these months, of and on, I do get some leg tingling/numbness, usually left leg. These past couple days it seems more intense than ever before. I find myself thinking "How can I be tingling and numb like this if it's not MS? Is this a normal POTS thing? What does this mean???" So, I'm asking...does anyone get the numbness and/or tingling of lower leg(s)? Do you have any idea why? It would be great to hear if other people do who also for all other purposes do not seem to have MS.

Exercise has been the single most helpful thing for me. I see huge improvement in my heart rate, orthostatic intolerance, and dizziness. I run 1-2 miles, cycle, do some weight training (especially calf presses), and ab strengthening 3 times a week. It has been very helpful. My POTS cycles too. I went to the top of Pike's Peak in Colorado with no issues (in a car, though haha)

laying to standing- normally bp initially drops a little bit (bc everyone's blood pools somewhat in the feet when first standing) and then in a matter of seconds it'll go back up, sometimes a little over the initial laying down level. It's tough to measure this though. Technically for an accurate measurement you're not really supposed to take your blood pressure while standing because gravity plays a role and it will be deceptively high if your arm is hanging down. Best to have something you can rest your arm on so that it is at heart level.

I run. Same as you, I'm okay while moving (bc blood is not pooling), but as soon as I stop it's terrible...what I do is gradually cool Down on the treadmill and then, holding the sidebar, I sit down on the end of it, drinking water. Then I take one step over to a sitting cycle (I'm lucky it's right next to treadmill at my gym!) and sit in it, drinking more. Then I cycle. Then calf press, and then work out abs laying on the mat. This works for me, but I don't usually black out, just get very dizzy. I would recommend cycling and leg and calf presses. Stronger heart and calves are the main goals.

I know I have a lot of questions, but I have so much free time on the computer with my desk job and so I just do a lot of research. Since my POTS symptoms began a week out from a skiing accident that involved both neck and head trauma, I'm trying to figure out what that could mean. Basically I couldn't stop going down a hill, clotheslined myself on a rope and hit my head on the ground. I saw lots of stars but don't think I lost consciousness for long, if at all. The rest of that day was I little unsteady with a light head pressure but was pretty okay for the rest of that week. I never had significant neck or head pain, so I don't know if anything really qualifies as true whiplash or true concussion. However, everything did start a week out from that. I keep worrying I have some sort of subtle structural damage that caused POTS or something...I dunno. I mean, people have these types of injuries everyday and most of them do not end up with POTS. Would anyone say their POTS was linked to head or neck trauma? What has your experience been like?

Thank so much everyone.

Yup, sort of like ants crawling. I dunno, sometimes I do feel like way too much blood got in my foot and it sorts of vibrates in a pulsating way. But that's a different sensation, although could be related. If cold feet in perfectly normal temperatures is poor circulation, then yes on that. IV infusions of what?

Trust it will go and try not to think on it too much. POTS usually gets worse in waves and then better, from what I gather, so know that how bad you feel lately is almost certainly not permanent. Just think "It will go" and try not to dread the moments you get up and walk somewhere. Just walk briskly and think "I'm fine, it's fine, I'm getting the blood to move, this is good" and think about what you're doing (i.e. getting water) rather than worrying...unless you actually faint a lot, there is nothing specific to be afraid of. Keep going to work unless you feel truly awful...days off will just heighten your sense of something being really wrong...in my experience, anyway. Idk, these tips work for me. I too have a desk job. I think, scientifically, that even if hypovalemia and low bp are not your issues, fluid and salt loading will still help (although you might wanna check with a doctor about your high bp first), because the more blood you have in you, the more there is left to go to your head even when some of it is pooling in your feet. Try and exercise too a bit, within reason, because a stronger heart and stronger calves will help you regardless of your cause.

I get EXACTLY that. Left leg. I wonder what it could be?

Those of you who take salt tablets - do they help and how much do you take?

Initially, when I couldn't figure out why I was dizzy and "off", I was very affected cognitively. I couldn't get my physics textbook to make any sense, I struggled to keep my focus on a very simple book that I was trying to read for entertainment. There was one point in a class where I was taking notes and I couldn't even seem to spell...I kept writing homonyms for words instead of the words themselves- "right" for "write", etc. Not good. My grades for that quarter were the worst ever...for the first time in my life I got a C. I remember a particularly bad physics lab where I couldn't get my mind to understand ANYTHING. It was hard to get through, I was happy just to survive that quarter. I now suspect that these issues were at least partly caused by how distressed I was about everything or some sort of "shock"....because with time, they did go away and I consider myself basically returned to my normal cognitive functioning- got all A's the next quarter, banged out an awesome essay in just one night, got over 100 on my physics final, and read the "Game of Thrones" series for fun. Maybe it was POTS linked too, I dunno - I certainly still have POTS symptoms, but not the cognitive issues. So...in short...cognitive function and attention span can 100% come back. It feels like they're gone, but they're absolutely not, they're just sort of muted sometimes. I really thought for a couple months that I was stupider, but intelligence doesn't just disappear like that. Trust your brain. I didn't do any sort of retraining on my brain, just used the new school quarter as a fresh start. One thing that can help you remember that you're smart is debating people....because you don't want to lose an argument, you can dip into intelligence reserves you didn't know you have- so go find someone and discuss the 2016 Election (lol). You got this.

Does anyone have any tips on how to still take care of yourself with POTS but enjoy life and not feel defined by it? How to not have it be on the mind so much? Symptoms like dizziness and fatigue can be a struggle, but what seems worse is how much they overwhelm me psychologically. "Is it getting worse?" I ask myself. "Am I getting more bad days? Is it my baseline now to be much more fatigued?" Though I'm not sure what I would really do if it was.... I worry a lot about the cause...Sjogrens? My mouth feels dry every morning. Lyme? I get muscle twitches and other symptoms that are just weird. Something else? What will happen? And all the time..."Is this the new me? Tired, dizzy, sad? Why can't I be who I was before? Can I make my life work with this?" Symptoms are one thing, but I call this thinking my "mentality of sickness." Thoughts like this go through my head about 95% of the time. It isn't helpful, especially when I'm not making any plans about moving forward with tackling this thing, such as maybe finding a good doctor. Instead I see the thinking as DOING something about my condition, when in fact it's making my condition take over my life. I know things are better when I don't think so much. When I went on an awesome road trip with my boyfriend, I was so distracted/happy that thoughts of illness were farther away. But it seems anytime I'm doing normal stuff like job or school, I think about feeling bad and worry about the cause and the future. Are there any good mental tricks to feel better?

I was wondering in the viral onset category of POTS- does that usually mean like a cold/respiratory or something more flu-ish? I ask because I've got a nasty cold that is making my POTS symptoms worse (although I was not initially a viral onset, I don't think), and I'm getting paranoid that it's going to make me more tired and dizzy long after it clears up.

When people ask this question on Lyme boards, the popular answer seems to be "My POTS went away with treatment". Not sure about specifics, but that seems to be the norm.

Yes yes yes yes. This never makes sense to me! I go through the weekdays- job starts at 8:30 am, generally feel okay, early afternoon fatigue but that's pretty normal, no headaches or anything. Then I'll sleep in on Saturday because it seems like a good thing to do and when I wake up at 11 am or so it's terrible. I just cannot get going at all, I often have a headache....before I know it it's 5 or 6 pm and I've done nothing with my day and it's just weird. I thought maybe a caffeine withdrawal thing because I usually drink coffee but even when I drink coffee I'm still foggy and off. Sundays are usually not as bad. It's either the stress of working all week hitting at the point I finally relax or it's got something to do with routine/circadian rhythm...I dunno. I don't wanna wake up early on a weekend, but it seems like a better idea.

thanks for voting, all! Any more votes?

sorry if many of these have been asked already..thanks, all! Feel free to elaborate in comments.

The bruising - is your platelet count okay?

Great news! Negative ANA and good blood counts all around. So with that I feel I'm dropping the lupus fear, as like 98% of people with lupus have positive ANA.....as for Sjogrens I still worry somewhat (70% of people with Sjogrens have ANA) bc of dry mouth every morning and the tingling but....I presume to know too much. I somehow think that if I'm mentally armed with "all the things it could be" that I'm somehow better off, but sometimes it just causes needless worry. Thanks for your support everyone. Also I had a great weekend trip to New York City to visit a friend. I was really really worried about it being spoiled by how I felt, but surprisingly, I did not feel dizzy during it at all. Perhaps it was because we walked so much, I find the dizziness to be worse when I sit around a lot. Encouragement to everyone to keep moving even when you don't feel like it because it can really help to "get the blood moving" and get those calves to pump better.