calypso

I have had this many times, and I think it's partially autonomic-related and partially just all the stress from being sick.

Amy

I feel like things hurt more when more is wrong with your body and you're depressed about all the body dysfunction. I don't think my pain receptors have changed, but I could see that being possible, since autonomic function controls pain receptors.

Amy

Just thought I'd check in and update you all. I haven't been around much -- mostly because I've been a lot more functional these days. Pregnancy seems to have improved my POTS symptoms to some degree, mostly in boosting my energy level. I only need about 7-8 hours of sleep and don't feel drop-dead tired at the end of they day like I usually do. I also have been able to be med-free for the entire pregnancy, and only had troubles with POTS attacks from about 15-19 weeks gestation and since then, nothing.

I had my 30-week ultrasound yesterday and the baby is measuring much bigger than last time, which is a relief. I had pregnancy-induced hypertension and my daughter suffered growth restriction last time, so she was very small at birth. This time, it looks like that will not happen. My BP was 104/64, my heart rate about 80, and the baby is in the 65th percentile for length and weight.

This news is all very encouraging to me, and should be to anyone here who wishes to have a child. I was very sick with POTS for nearly three years before deciding to get pregnant again. I had prepared myself for the worst, and was expecting things to be much more difficult. Of course, there's still time for things to change, but for now I am being optimistic.

Hope you all are doing as well as possible and I'll try to pop in more often. I'm certainly sick of the sub-zero temps where I live and have no excuse not to be online more!

Amy

Since I've had POTS I have had all kinds of constant muscle problems -- mostly weakness and loss of muscle mass. It was worst in the first three months. I never noticed any connection to temperature but did notice that if I was having a bad spell, it was worse overall. All of my muscle tests always came out normal, but my doctors always noted that my muscles seemed to be disappearing due to some sort of weird weight loss/POTS and metabolism-related condition that they could never put a name to.

Amy

I get occasional bouts of insomnia and episodes of severe flushing (the latter often accompany a POTS attack). I don't think these are abnormal for POTS patients, but the night sweats are concerning. Glad to hear you'll have some more testing. Another possibility could be some sort of hormonal imbalance -- for instance, I would get these symptoms more during times when my period was approaching.

Amy

Shortness of breath with fainting that comes on suddenly in an otherwise healthy person can be a sign of arrythmia (due to a heart conduction problem) or due to an underlying disorder (i.e., vitamin deficiency, metabolic problem, etc.). Why they'd want to do an EP study if the tests were normal is beyond me -- that's a very expensive test that often yields no answers. I'd make sure he asks for a CBC and chem panel, just to make sure it's not being caused by another problem, like low electrolytes or something. These are certainly easier to fix.

Amy

I saw like eight or nine doctors in the first six months of POTS b/c no one knew what was going on. The cardiology doc I saw the first time I went to the ER suggested POTS but b/c it was an ER visit, it wasn't given any weight and the follow-up cardio I saw later that week dismissed that b/c my BP was high, not low, and he claims he never sees POTS patients with high BP. (However, I had just had a baby two weeks prior and had preeclampsia, so normally my BP is pretty normal or low.)

Anyway, I then saw my primary doc, then these ones in this order: OB/GYN, a neurologist, an endocrinologist, a rheumatologist, another rheumatologist (but this time one who specializes in CFS and other weird disorders of the mind and body), an immunologist, and I can't remember who else. I also saw a Traditional Chinese Medicine doc, plus a naturopath, somewhere in there.

I completely gave up on a diagnosis about 2 years into my illness. And now that I have accepted that, I feel like I function better. I don't know if the not knowing was stressing me out or what, or maybe all the doctor visits or the money spent on them. But I figure until there's a cure for POTS, what the heck does it matter?!

That's just my two cents' worth.

Amy

April,

I know this may sound too difficult, but any exercise you can do will help -- it's the only thing that helped me through my first trimester this time. Even a walk or 15 minutes on a treadmill can do the trick, or 10 minutes of stair climbing. I think the exercise tones down the nervous system a little.

I felt like garbage until 15 weeks. You WILL feel better, soon!

Amy

Maxine -- Sorry to hear of your infection but glad it is getting better. Just wanted to share that I have had some odd things going on w/ my nails that started when I developed POTS. I have these vertical lines that have formed on all of my nails, but most noticeably on my thumbs. The vertical lines are on all the nails, but then on my thumbs there will be one or two lines that actually are elevated, or raised. They have never split, though. One of my doctors attributed it to aging (despite having only been 28 when it started). Then another told me to take more vitamins, which I already had been doing. So I think in my case that it's related to my body being ill, but not necessarily POTS.

Amy

Jessica -- Welcome back! Glad to hear that you are feeling well enough most of the time to work more but sorry to learn that you have this vertigo/dizziness issue going on. I have had spells of this that last for a short time, but the longest was maybe a few weeks in my pre-POTS days. But I was told it was an "inner ear disturbance," although the doctor didn't actually see anything or know for sure. It did go away on its own.

I had some of this same sort of dizziness during this pregnancy, about a month ago. Even lying down didn't help and actually made it worse. The spells often began with a headache, followed by the dizziness, followed by my heart rate going up (maybe from being freaked out, or maybe from some sort of autonomic response). I started increasing my potassium intake in foods and the episodes stopped. That may be a coincidence, too, but it's worth a try. Otherwise, if that is not what caused it in my case, I would attribute it to the changing hormones. Are you still breastfeeding? Wondering if that could be an issue with hormones for you, too.

Take care,

Amy

Is it possible that something environmental is at work here? Is there a substance (paint, markers, etc.) that might be giving her these symptoms? The other possibility is mold in the school -- this has happened to the children of several people I know. Are any other kids complaining of health symptoms? I would ask the teacher and other teachers as well, just to be sure. It can be hard to figure those kinds of things out.

And also, I agree that it would be good to get her checked out thoroughly by her doctor.

Amy

My doctor said it would cause more leakiness of the veins down the road (swelling) into the tissues outside the veins. I've found this has already happened a bit to me. I don't know if this is exactly dangerous, but over time, having swelling can force your BP to go a little higher because it puts strain on your cardiovascular system.

Emily -- thanks for the update.

Melissa, I am thinking of you, wishing you the best birthday possible and hoping you gradually improve and get your strength back so you can get out of that place! Take care.

Amy

I only have had POTS for three years -- although I suppose that's long enough! -- but I do notice that every October, I start to feel crummy and start to feel better in late April or early May. I think it definitely has to do with sun exposure and vitamin D, even though I supplement with cod liver oil fortified with vit. D in the bad months. No idea.

Amy

This news is so sad. I will keep Caitlin and her family and friends in my thoughts.

Amy

April,

That's great news! I am just nearing 20 weeks right now, so if it makes you feel any better, I'll be ahead of you. Please feel free to write me if you want to talk to another pregnant POTS patient.

Amy

ALS is very, very uncommon -- almost nonexistent -- in women under 35. The younger you are, the more likely you don't have it. I wouldn't even be thinking of this as a possibility.

I had severe weakness that progressed from the moment I developed POTS for the next three months. It finally peaked and then got a bit better, and has been on a plateau since then. I have been tested for all the muscle diseases and neuropathies, and my neuro found nothing abnormal. So in my case, the weakness was either part of the POTS or whatever other things I have going on in my body.

For the first two months of having the weakness, I would drop things constantly because my wrists were so weak, they would just collapse if I held something -- like a dish (I broke about a half-dozen dishes until I realized I needed to stay away from the dishwasher). I also would get that burning sensation in my arms if I held them up for more than 10 or 15 seconds -- the same kind of burning you get if your muscles are contracted in the same position for a really long time.

I would see a neurologist to explain your weakness and discuss any testing you might want done. You could also try physical therapy, which helped me a bit. There are lots of general strengthening exercises that you can do even if you aren't able to tolerate standing or moving around.

Also, have you experienced a big weight loss? That was part of my problem -- I was losing weight so fast that it was coming out of my muscle mass. If that's the case, you could have a metabolic issue going on as well -- although I got tested for all of those and didn't have one.

Amy

Glad to hear you're alive, Morgan! You sure have been through enough and then some. Hope things continue to get back on track and that you have some competent doctors to work with.

Amy

Katherine --

The docs in my OB group differ a bit on what my resting heart rate level should be the max before starting BB therapy. My assigned doctor said 140. Another two said 120. Another said 150. I have basically decided to take it into my own hands. If I am consistently running above 120, I am going to start the BB again. I feel that if my heart rate is that high, the circulation to the baby is compromised anyway -- which is the potential risk (resulting in a slightly smaller baby) if I take the BB. I would be taking a dose of Toprol at 25 mg (a half a pill daily), and at this level the risk for having a smaller baby is lower than if I were to take a dose of 50 mg or higher.

I think what my doctors mean by resting heart rate is the average rate, because of how much I am standing during the day. They know I will be slightly higher when standing, but they know I'll be lower when lying flat. So I think they mean if I'm just standing or sitting around and it's 120 or 140 or higher, then that's too much. Thankfully I'm not hitting that point ... but I realize that the next three months are going to increase the chances that I do.

As for salt, because my BP is not low, they do not encourage extra salt. I find that more salt makes me retain water in my legs and does not make me feel any better, even when I drink more fluids. Obviously there are many women who benefit from this, but I just don't think I am one of them. The only thing that seems to help my heart rate is exercise. I find it's elevated for a while afterward, but the rest of the day or the next day it's lower.

Amy

Went for my 16-week checkup on Monday and everything is surprisingly going very well. I am finding I have more energy in the last few weeks than I have since the last time I was pregnant -- guess it's all those extra hormones that I need to keep me alert.

My heart rate is definitely higher and I'm shorter of breath than usual, but unless I hit a heart rate of 120 or more on a regular basis, I can remain med-free. I've been running in the 100-105 range at the highest, and usually in the 80-100 range.

I did have an episode of near-fainting yesterday. I became dizzy over the course of an hour or so, even after I was lying flat, and then had some alternating tachy and brady episode that lasted just a half hour. Then I was fine. Hope this doesn't happen again, but if it does, I will probably have to go back on the beta blocker.

So I have minimal nausea and not much fatigue. The gist is that so far, everything is nice and boring and maybe will stay that way! Thanks for the support.

Amy

As far as I know, I only have POTS and autonomic dysfunction (POTS is just a specific type of autonomic dysfunction). I have symptoms that don't quite fit into POTS but that aren't a different disease, either.

Amy

I think since there aren't any concrete ways of eliminating POTS, many doctors are discouraged from working with POTS patients. They all like tangible evidence and treatments that they know will correct diseases, and I think some aren't up to the challenge! But these are just my opinions.

The condition is definitely, definitely underdiagnosed, and I think it's temporary for many people, so that's another reason why maybe it's not much of a specialty.

Amy

Dayna,

I have found that in the last year, my sitting heart rate is almost as high as my standing one. But if I lie flat or squat down, it goes down to a normal range. It's almost as if I am getting worse with being upright in any form. I don't really feel any worse; it's just annoying that my heart rate isn't slowing like it used to when I sit.

Amy

I tend to have a pretty narrow pulse pressure (100/80, 90/80, etc.) when I am standing, from the few times it's been measured. It seems to be fairly common w/ POTS.

Amy

That's great news! What an accomplishment.

Amy