autumn

Thanks, everyone. KeXia, your doctor might be referring to something like Hashimoto's, where your body attacks your thyroid till it just doesn't work. Abetterjulie, according to my ENT, inconsistent labs can also be a sign of Hashimoto's, in the stages where your thyroid is still working. My labs seem to have always trended more toward hyperthyroid, even though most doctors who test me expect me to be hypo. Over the last couple of years, my TSH has been .58, .83 and 1.1, the last number coming from November labs. Nothing has been remarkable about my other thyroid labs. My doctor said almost all of her POTS patients have thyroid trouble. Plus, my mom is hypo, her mom was hypo, and I know my dad's mom had thyroid trouble at my age, but I didn't get anywhere when I tried asking her about it yesterday. She's 85 and shows some signs of Alzheimer's (her sisters who lived into old age had it, too), and she's in a nursing home and doesn't have to deal with her meds, so she doesn't know what she takes. My mom thinks doctors might have killed my grandmother's thyroid at some point, which would indicate hyper, but I don't think I'll ever know.

I don't know where else to go with this because, even thought it's not POTS-related, you've all been through so much with your health and know so much that I figured I'd get good feedback here. I'm in the middle of the thyroid and uptake scan process; I go back for my final scan tomorrow. A couple of years ago, my ENT did a CT scan, and it showed an enlarged thyroid and lymph nodes. An ultrasound showed cysts but no solid mass. There was no mention of an enlarged thyroid, but measurements were included in the report. My blood work was all normal, though the ENT said I leaned toward the hyperactive side. (Side note: My lymph nodes go through cycles where they swell and shrink; my mother thought I had cancer when I was in elementary school because they got so big, but no cause was ever found, and then they shrunk.) I just saw another ENT for a completely different reason, and in the rushed appointment, she said my thyroid was prominent and said I probably have Hashimoto's. She gave me a blood work script, but I did all the blood work in November, and it was all fine. (I did repeat it, though -- along with a bunch of others -- yesterday.) My next appointment with her isn't for a couple of months, so my PCP ordered an ultrasound. I still have scattered cysts, though at least one has grown. I also have a nodule now, but it's quite small, at 6.7mm. Also interesting, my thyroid is *smaller* than it was two years ago, and the ultrasound said it was a normal size -- even though it's visually prominent, according to the doctors. My first uptake scan, at six hours after taking the radioactive iodine pill, was normal at 20.5 percent. The tech said my nodule is likely too small to be picked up on the thyroid hot/cold scan. I go back early tomorrow morning and will get my next number then, but I'm guessing it'll be fine. I am really, really confused. Everyone seems to think something is wrong with my thyroid because of it's prominence. My blood work has always came back normal. I have stuff growing in there, though, which I understand is fairly common. However, I'm 24, and I guess being this young with growths increases the risks for something not so pleasant. My doctor is lovely but has been fairly busy this week, so I haven't called to ask what she's looking for, what she thinks I have, what options I'm looking at. I just don't know, and I'm tired of Googling. Does anyone have any similar experiences? Any insight? My last doctors dropped the issue, but clearly things have changed in two years, so I'd like to stay on this till it's sorted out.

Thanks for all the support, everyone! Reen, I'm supposed to take my BP/HR three times a day, two readings each time. I don't have the paper handy and I haven't started yet (oops), but I think the first reading is supposed to be after I've been supine for at least a minute, and then the second reading is after I've been standing three minutes. I still haven't been able to get through more than two liters of water a day. It's difficult because the fluid literally goes right through me. At work the other night, I was in the bathroom three times within 45 minutes, and I just don't have the time to pee that often! Maybe the answer is lots more salt?

I just got back home from the appointment. Boston traffic is a nightmare! Anyway, I thought Dr. Freeman and his fellow were great. Kind, pleasant, thorough doctors, and they listened to what I had to say and answered my questions to my satisfaction. They didn't brush me off, which was my major concern with having only borderline-abnormal tilts and otherwise normal tests. They won't diagnose me with POTS, but they won't take my PCP's diagnosis away either -- yet. They said my clinical history is certainly consistent with POTS, so they want me to repeat the autonomic testing; they said patients have fluctuations in symptoms, and they agree with me that they probably caught me on a good day. They indicated that they expect to get a positive test and are still treating me as though I have POTS: a high-sodium, high-fluid routine, plus Florinef. They also said it looks like I might have EDS -- I already knew my joints are hypermobile, but I didn't know that my skin is abnormally elastic, which made me laugh a little -- and they want me to have genetic testing to confirm. They said it could explain my POTS symptoms and the blood pooling and whatnot. I have to sort out whether insurance will cover that testing. If it doesn't, I don't know what I'll do. I showed some nerve issues during the workup, so they did some bloodwork to look into that further. I'm also supposed to have a sleep study -- done locally, thank goodness. These doctors were fantastic, but I don't want to drive a six-hour round trip just to have a test or two. I'll probably schedule the repeat autonomic testing for the summer, when the heat will have me more symptomatic. I also have to keep a BP and HR journal. I'm so relieved they're taking me seriously. I'm also pleasantly surprised with how well the appointment went. I genuinely liked both doctors. (And a side note: Dr. Freeman has awesome hair.)

I was just talking about this with my boyfriend! A few months ago, I couldn't stop the itching. Now it's mostly confined to my torso/stomach area. No idea what it is.

I had my autonomic testing at BIDMC in November, and everything came back normal, except for the tilt-table test, which was borderline abnormal for orthostatic intolerance -- I was having a pretty great day as far as symptoms go. Not long before, I had a TTT done, ordered by my primary care doctor, that showed the typical POTS tachycardia. So two tilts, two different problems revealed. I'm bringing the report from the first tilt for Dr. Freeman to look at. Anyway, I've heard Dr. Freeman can be ... difficult. Can anyone tell me what I can expect? Anything I should do to prepare? I'm bringing what medical records I have, including a bunch of tests and holter monitor reports from my old cardiologists. I have a handful or two of questions, too. I'm not really looking for a cure-all or a major treatment plan, really. I wasn't even interested in seeing him, but my PCP said I ought to. I'm hoping because I'm not going to go in there expecting him to fix me, it won't be a frustrating appointment for any of us. I just want to know if he can help me figure out what parts of me are malfunctioning. The secretary also said there's a possibility he'll want to schedule more tests. I live three hours away, so I'm kind of hoping that they can schedule them for the same day or next day so I can just stay in Boston and not have to make a repeat trip. Did anyone have more tests after the evaluation with him? What were they? I'm wondering what he'll want to do now that I've had to two fairly different -- and not normal -- tilt-table tests. I'm so nervous. I'm also pretty tired of doctors and tests. Any advice or words of encouragement are appreciated.

I agree with Dani: It sounds like allergy- or sinus-related problems, especially with the ear involvement and congestion. A good nose spray, like Dani suggested, would probably help quite a bit.

I didn't have a home phone line when I had my last monthlong monitor, which was a little more than a year ago. My doctor used CardioNet for the monitor, and it was able to transmit wirelessly.

I have sustained v-tach off of medication and nonsustained v-tach on meds. I'm on verapamil, a calcium-channel blocker, not a beta blocker. It can't hurt to have another echo or even a cardiac MRI to ensure your heart is structurally sound. (All my cardiac workups have come back normal, and multiple cardiologists/EPs have assured me that the v-tach is NOT a concern because my heart is physically OK. My exact dx is idiopathic monomorphic v-tach.) Honestly, just by the beats, I can't always tell the difference between SVT, PVCs with sinus tach, and the v-tach -- especially when it's nonsustained. (Sometimes I get episodes where all three are involved, I think.) For me, the biggest tell that it's straight v-tach is a change in my vision; I usually lose it during sustained episodes, and it grays out a bit, sometimes even just for a second, during nonsustained runs. If the v-tach is mostly new for you, they could give you another stress test or do an EP study to see whether they can induce it. If they can, they might be able to do an ablation. They haven't been able to induce mine, so that's not an option for me yet. Have they put you on a monthlong event monitor? That seems like a logical next step to see how often this is happening and to try to determine what part of your heart it's coming from. That kind of information could also help them decide whether you're a candidate for an ablation.

It sounds as though we have similar cardiac issues, shoegal. I'm on a calcium-channel blocker for my v-tach and IST, though it's hard to say whether it helps with the latter. It does, however, keep my v-tach episodes nonsustained, which is nice. My EKGs have always been normal. Press your EP for more testing and answers. You're armed with more information now -- about POTS and other avenues to explore. Please keep us posted.

Have you worn event monitors and had a full cardio workup -- stress test, echocardiogram, etc.? Even if you have, I would think that because your cardiac events are happening more frequently and it sounds as if a new type of beat is present, it would be worth having the routine done again. The doctors need to catch the arrhythmia episodes and to determine that your heart is structurally sound. If your arrhythmia runs can be induced, they might be able to do an ablation. Depending on what the other beats are, your doctors might be able to adjust your medication to something that will work better for you (from a beta blocker to a calcium-channel blocker, for example; my doctors said they'd never give me a beta blocker for my inappropriate sinus tachycardia). Keep in mind that often, the weird/flippy/skipped beats can feel so much scarier than they actually are. For some peace of mind at the very least, it's worth wearing a monitor so you can see what's actually going on. Long before my POTS was confirmed, I was diagnosed with ventricular tachycardia and inappropriate sinus tachycardia. The holter and event monitors (I've worn four over the years) have also caught PVCs, PACs and SVT. The runs of these feel SO scary, especially the v-tach, but I've had multiple cardiologists/electrophysiologists confirm that they're nothing to be concerned about -- in light of my other test results, anyway. You can also request a tilt-table test, as Godsgal said, to determine whether this could be POTS. However, even with the POTS diagnosis, you and your doctors need to have a better idea of what's going on with your cardiac issues so you can treat the specific symptoms that come with them. POTS is a syndrome, just a group of symptoms, and the symptoms still need to be addressed appropriately. And an aside/lesson I've learned: In my quest for some sanity and anxiety-reduction with regard to my cardiac issues, I've learned that Googling all these arrhythmias comes up with seriously scary information that really just may not apply. V-tach, for example, is often described as a potentially deadly arrhythmia that requires immediate attention. Even medical professionals freak out when I say that I have it. However, because my heart is structurally normal, it's really not a dangerous arrhythmia at all. I worried myself sick over whether I was going to die in my sleep, and that was just plain stupid. Find a doctor you like and trust, and don't be afraid to seek out a second or third opinion. Once your test results are in, ask for a copy before you walk out of the office; having all your results in your possession will make things easier if you have to see another doctor and/or move to another practice, especially on short notice. Lots of hugs and luck to you, shoegal. I know how scary this is.

I just wanted to add that from what all my heart docs have said -- and there have been many, as I've moved and needed new ones -- even "normal," healthy people have PVCs throughout the day.

Sounds like it might be a PVC. I always described it as my heart beating inside out. It just feels ... weird. Anyway, if that's the case, my doctors have said that everyone has PVCs multiple times a day, and some people are sensitive enough to feel them. Some feel more violent to me than others, but it's nothing to be concerned about. I had one during my latest tilt, and they didn't care.

I usually test about 97.3, but when nurses were coming in the morning for my IV, they were getting me at 99.7. That shocked me! I hardly get fevers, though. A couple of years ago, I was so, so sick, and I went to the doctor practically in tears. He said there was no sign of any illness -- no fever, no swollen lymph nodes, nothing. He ended up sending me for bloodwork and called me as soon the numbers came in the next day, telling me I had to come down IMMEDIATELY. Turns out my white count was really high, indicating that I was "really, really sick" -- his words. But my body temp at the time was in the 97s. I know now that it's likely dysautonomia that keeps me from getting a fever even when I'm sick. I had a similar situation earlier this year, and my doctor, who's really knowledgable about POTS, didn't think it was at all strange when I came in horridly sick with no fever. I hope you can find a doctor who understands you better.

I've been dx'd with ventricular tachycardia and inappropriate sinus tachycardia, and my holters have also shown runs of SVT, PACs and PVCs. My heart is structurally normal, thankfully. I was misdiagnosed with MVP by my first cardiologist. He thought he heard a click when I stood up, but it was probably extra-hard heartbeats from standing up that did it. I've had two or three echos and a cardiac MRI, and they've all been fine.

The physical therapist called my problem myofascial pain, but there was really no explanation. The rheumatologist said my neck is abnormally straight and there's a very slight curve in my spine, but that's it. I do get really tense in my neck and shoulders, and I occasionally get a weird tingly feeling there, too, along with spasms that can last weeks. Muscle relaxers don't help. I've read that myofascial pain can be yet another symptom of POTS. *shrug* I get a different kind of pressure/pain in the same areas sometimes after I stand and/or when my vision blacks out. The pain is usually debilitating during an arrhythmia episode. I definitely think this aspect is related to blood pressure, as I apparently sometimes lose a pulse during the episodes.

So much information! I had never heard of coat-hanger pain, but I've been sent to physical therapy for pain in my neck, shoulders and upper back -- you know, the coat-hanger area. It's neat to learn what unexplained problems can fit under the POTS umbrella. I'd love to be able to run. Good luck with your training, TXPOTS!

That's interesting. My HR has been a lot lower than normal when my BP is high. I suppose it's possible I'm dehydrated; I really hate drinking. I think I had a few sips of coffee, a few ounces of water and half a glass of tomato juice yesterday. That's not enough, I know. I think something is going on, though. I keep getting these episodes where I feel really shaky and like my HR is high, but instead, it's low for me (70s sitting). I'm temperature cycling rapidly and to extremes, really hot to really cold. I'm also flushing and itching quite a bit. I took my BP during an episode last night, and it was normal, but I did get an irregular heartbeat alert. I have trouble with a couple of arrhythmias, so I suppose it's possible that these episodes involve some cardiac craziness. I do remember this happening about this time last year, so maybe it's just a cycle. Today my BP is dropping as soon as I sit up, and it's staying there. Haven't tried things out on my feet yet, but this is more "normal" for me. I know this is all unpredictable, but I'm so curious about what dictates how things will function one day versus the next. I've always loved learning about medical things (my grandmother was a nurse, and her career fascinated me to no end), and I wish we knew more about what's behind dysautonomia. For as sucky as it is, it makes for an interesting read.

My Valsalva came back normal, but at the time I was tested, I was having sudden BP drops, not spikes. I took my BP when I woke up this morning, and it was 105/64. But it started climbing when I stood up, and it was up to 138/70something or 80something after I showered. Knowing it's low when I wake up, after I've been lying down for hours, makes me think the spikes are indeed related to POTS. Honestly, that's kind of a relief. I really didn't want something else to be wrong. However, the doctor said that if I get to 140/90, we'll have to talk about putting me on medication to lower it. What would that mean for the times of day when my BP is actually low to normal? Could this indicate hyper-POTS?

The "episodes" after waking up and moving in bed happen to me ALL the time! Now that I've got my own BP cuff, I'm going to have to see what the numbers look like when that happens. Also, can someone explain abdominal pooling? Like Sue, the longer I'm upright, the bigger my stomach gets, which is incredibly frustrating. If I'm up and around for a while before I change out of pajamas, I lie down for a while so my stomach will flatten out again so my clothes fit better. The bigger it gets, the more uncomfortable it is. It's been worse the last couple of weeks, presumably when my blood pressure and heart rate started acting differently.

Well, I was 122/71, pulse 74 lying down. 116/74, 95 as soon as i stood up. 130/82, 90 a minute later. BP is way higher than normal for me; pulse is way lower. It's hard not to appreciate a lower HR, but I could do without the BP spike. Left a message with the doctor's office.

Thanks for the responses. I guess I'm just perplexed at the sudden jump -- and that it's stayed high now even when I'm sitting. My pulse pressure has been in the 50s, which I've been told is abnormal. I do have some heart issues on top of POTS (or because of it, maybe), which is why this, combined with the lower HR, has me a little concerned. Maybe I'll stand up and see what happens; the last few days, I've taken my BP only while sitting or lying down.

My BP is usually on the lower side of normal, 100-110/60-70, though sometimes it's lower; the other week, it was 90/60ish. My resting HR is also 80s-100s. However, the last week or two, my resting HR has dropped quite a bit, to high 60s or low 70s, which is lower than ever documented -- even while sleeping -- either with monthlong heart monitors or checkups. But with this, my BP has suddenly shot up, and I'm clocking in at 135/81, give or take a few points. This is *really* high for me. My standing HR isn't as high as it was, but I spike to 135 for a minute or so randomly, then drop back down to high 90s, low 100s. When my nurse was here the other day, I was at 130/87 standing, and I asked him to take it again sitting, and I dropped to 110/67. He had me walk around a bit, and my HR went from 73 sitting to 112 by the time I got to my front door maybe 12 or 16 feet away. Then it started dropping a bit and bouncing around. I've been getting headaches when I stand up a lot and have some new symptoms, including some intense and persistent itching when I put pressure on my circulation by crossing my legs or something. I suppose I'll give the doctor a call in the morning, mostly because I'm concerned with the sudden jump in BP, but does anyone know what might be causing this? This is all pretty new for me.

I get it once a week, but my doctor wants me to increase to twice. I have a home health care nurse come and hook me up, and the liter bag runs over six hours, though the nurse is going to try to persuade the doctor to change that to four, which is the fastest it can be administered because of the potassium in the solution. My doctor's other patients have increased over time and are now on daily fluids, and they all have PICCs. I'm trying to put that off for as long as possible. I think the cost is about $167 each time. My deductible was met before I started last year, so I didn't have any out-of-pocket expense, but I haven't seen the bills yet from this year's sessions. The benefits last me a couple of days.

I have visual snow 24/7, in the light, dark and even when my eyes are closed, which seems strange. I get the pinpricks of light when it's bright out, and I also see these small, translucent, bubble-like structures every day in certain lights. I see similar shadowy structures, too, almost like clusters of the bubbles. I also have afterimages that seem to stick around longer than normal. The snow I've seen for as long as I can remember; when I was little, I used to think of it as tiny little bats in my room at night. The other visual disturbances developed later. I've been sent to various eye/brain specialists, and everything has checked out. Unrelated, I think, are the vision blackouts I get, which I've always attributed to low or plummeting blood pressure.