Do I have POTS or something else?
May 10, 2016 7:09 PM   Subscribe

Is this as likely to be POTS as I think it is? It seems straightforward that I have the symptoms, except I have other symptoms too. I am desperately hopeful that I have finally found what can be treated.

So I came across the term "dysautonomia" here for the first time several months ago, and it was like a revelation. I had known by body seem to have no normal ability to regulate itself, but could never come across cases like mine (extreme reactions to both hot and cold, for example) and doctors when I had insurance back then looked at me like they never heard of such a thing either. My biggest problems are problems standing, and the heat and the cold, and the extreme fatigue that's related to those things. Here's a list. I will try to be thorough.

1. When I go outside in humid and hot weather (above 75 with humidity) then I feel ill within a minute. It feels extreme. I feel fatigued, faint, disoriented, confused, bad and anxious, and I have a lot of trouble thinking straight (which really increases my anxiety). I walk slowly, and feel like it's taking huge effort, even when I am walking much slower than my usual pace, due to the fatigue. Psychologically and physically it feels like a huge ordeal to walk 2 blocks, and most days in the summer I can't leave my apartment. When the humidity is low I am fine up until 80 degrees, but the humidity is always high in summer here. I try to get by wearing light clothing, and taking a cup of ice with me, and rubbing myself with them as I walk. Oh, and I have a weak sense of "walking straight". I feel so faint that although I can manage to walk straight, it somehow seems more like I need to try to do so.

2. I am extremely sensitive to cold. My fingertips shrivel up within a couple minutes of being in air conditioning. I can't wear tank tops, shorts and sandles when it's hot out, because even with a coat on I freeze with the way they crank the air conditioning in indoor environments here. I carry with me, in the summer, Hot Hands, an extra cardigan, Uniqlo ultra light down coat, scarf, fingerless gloves, and an extra scarf to lay over my lap (on the train, or when sitting). I put them on as the train pulls up because the second I walk it I feel like walking into an extra cold cooler. This is a huge pain, because everything feels super heavy to me in summer and adds extra weight to my bag, and the fact that I look weird on the train. Even with that, sometimes the seat is so cold I feel like crying while I sit even with long pants on, and I feel so faint from being in the heat, I have to sit even when the chair is like ice. While the air conditioning greatly strains my endurance and I feel exhausted from it afterwards, I don't get the faintness, or same degree of mental confusion as with the heat.

3. I have eaten a lot of salt since I was a kid. I have only met someone once in my life who ate even half as much. I eat most of my food at home, and I refill my slat shaker very frequently. Everyone who sees me eat comments on it, and I would guess that I eat 10 times as much salt as a typical person at least. I salt my food in layers. I sprinkle lots everywhere, eat that, sprinkle the next layer and so on. A few months ago I was extremely low on money so for the first time in my life, I started using salt sparingly for a week, because I didn't even have money to buy a new jar and I was low. I was more fatigued than usual (I mean standing and doing basic things around the apartment), when it occurred to me about the salt! I google, and yes salt is used to help symptoms of POTS too. I drank an extremely salty half cup of hot water, and the invigoration was noticeable. My blood pressure when taken is always normal.

4. When I was young I used to smoke pot occasionally. More than I half dozen times I blacked out and fainted. By blacking out, I mean that my eyes were wide open but I couldn't see, not that I forgot anything the next day. I would think I would be walking straight with my eye open (but blind), but apparently I was walking all over the place. My friends would be laughing hysterically, because that's funny when you're high. It never occurred to me it was a health problem though, just really weird.

5. I have gotten occasional panic attacks my whole life. Often when I do, I can't stand. I mean right that second, my legs give way. I can be conscious, but I have to fall to the ground exactly where I stand. I don't think it's a common symptom of panic attacks, but I read somewhere that when you have an attack, all the blood goes from your extremities to your heart, and that's why your legs can give way. I would also say that extreme anxiety, even when it's not nearing a panic attack, makes me feel like I have to try harder to keep upright, like it's a strain.

6. I can't drink much, less than half a glass of wine, and only then with good sleep and food beforehand, and even then I feel not symptomless ( before it was bad (all these symptoms) I might drink a pint of beer, but i'd be drunk like I drunk 4 pints not one)). And I can't stand when I drink, at a party or a bar, I feel like I am leaning on walls, and using all my energy to act like I am standing, drinking, talking, but really I just want to sit. Waiting in a standing line at a bat room at a bar is also often miserable. I definitely can't drink and dance!

7. Just as prominent as the above symptoms, I have a lot of mental fatigue all the time, but much worse if I don't get a lot of sleep. Problems focusing, planning, problem solving, reading and writing. This post is quite a long effort for me. Even thinking in basic ways often feels draining. If I sleep badly I feel like I cannot think at all. Often not even the effort to browse very simple sites on the internet or follow a tv show or movie.

8. When I get my period I have even more trouble standing. If I get up to brush my teeth, or make a cup of tea, my whole body feels so fatigued it's screaming at me to sit or lie down. I have to do things with lots of breaks. Get up, drink water and pee. Lie down for a while. Get up wash face, put on contacts. Lie down for a while. Get up feed cat, lie down. and on and on. And it doesn't feel ok because of the rests, it feels like I can't and shouldn't stand all day long (the 2nd day is a lot better). I have a similar extreme reaction if I get sick with a cold too.

9. So I guess this is the most basic symptom that makes me think POTS. I simply have trouble standing. I think I have felt fatigued at standing my whole life, but that it's been worse this last 6 years, and also now I am sensitive to the heat (when I was young hot humid weather was fine). The above symptom of my period with lots of starts and rests, that's me everyday, but not quite as bad. I simply have to sit most of the time. It's very hard to clean my apartment, cook, groom, go grocery shopping, etc. All these things have to be managed with a lots of sitting and being anxious at feeling so fatigued that I have to sit. If I go to the library, I walk the two blocks from the train to the library and have to rest as soon as I get there, before looking for a book. Again, I rest before heading back out.

Related to the above, any upright activity that is not standing perfectly straight feels SO exhausting. Vacuuming, bending over to clean something, bending over to pick something up, cleaning litter, even washing dishes because I am leaning forward a little to wash them, I think feels much more draining than just walking slowly. It often feels like when I bed forward I am having to use energy to avoid completely falling forward. It feels like a workout. Oh, and I don't like "still standing". I am definitely a pacer, especially at the bus stop, I often feel more tired just standing, so I shuffle from side to side, or hop on my heals, if there's no seat.

10. I am very sensitive to bright lights, movement of many kinds, and noise and stimulation. I tend to think it's sensory processing disorder, but I just found out that sometimes it is a symptom of POTS.

So why I think maybe it's not POTS? I have had my blood pressure taken at the doctors when they make you lie down for 5 seconds and then stand again, and it's always been fine (but it always seems silly to me, I've been out and about, and lie down for 5 seconds?), but I have been very faint doing Sun Salutations during yoga before, so that I have to rest my hands on my knees. Also, I'm not sure the coldness is a symptom, though I know symptoms can vary greatly, and I'm sure it seems like another possible part of dysautonomia.

So I was wondering how likely it is to be POTS? I have health insurance for my first time in many years, so I am hoping this is what's going on (when I had insurance many years ago, doctors mainly looked at me like I was crazy as soon as I went beyond "yeah, I don't like the heat and the cold that much".
posted by Blitz to Health & Fitness (9 answers total) 1 user marked this as a favorite
From this page: The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.

You don't mention your heart rate. POTS can cause all kinds of symptoms, but unless you have a racing heart, it's not POTS. Sometimes the fast heart rate is an unmistakable feeling, your heart is just going THUMPTHUMPTHUMP and you can feel it in your chest and/or neck, and you might have chest pain or left arm pain or other things that feel way too much like a heart attack. Other times you maybe just feel hot and woozy and crappy, but you wouldn't know your pulse was racing unless you took it. For me fatigue is a real issue and my POTS can definitely get worse in the heat, but cold has never been an issue.

Try checking your BPM at various times, standing and sitting. Really hoping you have some answers and feel better soon.
posted by Ursula Hitler at 7:31 PM on May 10, 2016

I have pretty severe POTS (see my current question on dealing with the migraine(??) thing I'm on day 6 of.)

You need to do an at-home tilt table test. The stand-up blood pressure thing at the office is bullshit and doesn't show anything for me.

Get a blood pressure cuff that shows your heart rate. I bought this one.

Lay down for 5 minutes. Test your BP/HR when you lay down and after 5 mins.
Stand up and check your HR/BP upon standing. Check it every 5 minutes after standing. It helps if you have a buddy who can press the button and write it down though some of those have a memory feature on them. Wear shorts when you do this.

For POTS, basically your BP stays pretty even but you heart rate rises as you stand. Generally at least 30bpm above your resting rate, or stays above 120+bpm after standing.

For me, my legs turn bright purple as they fill with blood, my heart rate shoots up past 130, I sweat, I can't breathe, I get dizzy, I feel like I'm going to literally die, all my muscles hurt, my stomach freezes up and I feel nauseas. It's hell.

After seeing the POTS specialist, I didn't have to do a formal tilt table because I had my at-home results and the photos of my purple legs (the PA's eyes got huge when I showed them to her.) I just had to do another Holter so they could see the results. (This is after lots of other testing.)

So, I CAN tell you that i get dizziness, migraines(?), heat sensitivity, nausea, stomach problems (some I had before), severe fatigue, headaches, muscle pains, etc. with POTS. I'm unfortunately not in a good place physically at all right now. I don't know if I only have POTS or something else is going on too.

Find a doctor you trust. Do an at-home tilt test. Track your symptoms, food, meds, activities.
posted by SockWombat at 7:33 PM on May 10, 2016

Hmmm, I don't know my heart rate. I do feel like I am a little out of breath, after I sit down from a relatively short time standing/moving. I don't know if heart rate correlates with breath? I think my heart feels weak though, not strong. Like when I climb stairs it feels like it's trying to beat hard but can't, like a little dog that's trying to bark loud, but can't.

I feel pressure on my chest, but only in the heat, like someone is standing on it, and I can't breath properly. In the cold I feel a lot of internal pressure in my forehead, but it's not really like a headache.

I will try the at home test.
posted by Blitz at 8:40 PM on May 10, 2016

Sorry if I'm posting too much but I wanted to emphasize the "or something else" part of my question, and also say that maybe without the issue with my heart I should revise my question to be about orthostatic intolerance? It seems many symptoms overlap and the difference is that POTS is a type of orthostatic intolerance where the body tries to compensate with the heart (whereas without that compensation you still have orthostatic intolerance but not POTS?) And some of the treatments seem to overlap too. Does anyone have the symptoms I listed but without POTS?
posted by Blitz at 10:35 PM on May 10, 2016

Is you haven't already you should have your regular blood levels checked then get tests for thyroid and parathyroid disorders. I can image there are autonomic disfuncruon disorders that maybe aren't POTS but even POTS can be secondary to anemia and thyroid conditions. Those conditions are much more common and can account for your fatigue. (Not a doctor, etc but I have a million tests for all that type of stuff that all came back normal before realizing it was POTS. It's a long road to rule out everything else first and POTS is pretty rare.)
posted by SockWombat at 2:06 AM on May 11, 2016

I have both POTS and orthostatic intolerance (it is possible to have one, the other, or both), and as others have said above, there are many things that were ruled out first. I saw a cardiologist, who did several heart tests, and an endocrinologist, who did a battery of blood tests. I also saw an electrophysiologist who confirmed and attempted to treat me.

Keep in mind there are many different flavors/combinations/severities of POTS and/or OI. As a datapoint, standing still is the worst for me. Moving is slightly better as it helps my blood move around and not pool, I'm happy to walk quickly for a bit, but standing still for even five minutes is really, really hard and I begin feeling faint, nauseous, dizzy, mentally foggy, and my vision gets blurry. Among other fun things! And heat makes it worse, so hot showers, hot days, etc. make me more liable to faint. Even sitting up for too long will start to make me feel unwell. My body really, really wants to lay down all the damn time.

Here is one fact sheet on POTS. I can direct you to others or answer any specific POTS questions, but getting to a good doctor and sorting out if that is really your issue is the best first step.

FYI this was the order my process went: I started with the cardiologist who confirmed the POTS and then checked that my heart was otherwise healthy before referring me to an electrophysiologist who specialized in POTS to try treatments (though none of them helped, alas) and an endocrinologist to rule out any of those issues. Good luck, I hope you find answers and relief.
posted by rafaella gabriela sarsaparilla at 7:46 AM on May 11, 2016

I have POTS as well, and yeah, what you describe sounds right in line. Start with the at home "poor man's tilt table test" SockWombat describes, here's a link to a set of instructions as well. If you have a iPhone (and probably any smart phone) there are free apps that will measure your heart rate/pulse - you just put your finger over the flash and lens. This is enough to get you started. I would be really surprised if you don't have a pretty dramatic increase. I would say that after I stand I generally measure every 1 or 2 minutes. When my POTS is bad I have trouble even making it to 5 minutes. Though I don't get the discoloration in my legs, just for comparison of varied symptom presentations.

Those numbers can give you something to then take to your doctor. They'll probably repeat in the office. To be clear, having you lay down for 5 seconds (was that a typo? did you mean minutes?) isn't NEARLY long enough for your body to recover and your heart rate go back down, so the test won't be reflective of the change between resting and standing. You also may need to be standing for a few minutes, so if they are rushing the test and only taking one measurement it again might not be reflecting what's happening in your body. Agreed you will want/get a referral to a cardiologist probably next.

I'm sorry I can't speak to the "or something else" part. I don't have other OI's afaik. I did have Chronic Fatigue Syndrome and Fibromyalgia for about 4 years, in addition to the POTS. It was a big tangly mess of misery. Even if you think you have those as co-morbid conditions, I'd still recommend focusing on the OI issues first because they are better (if not well) understood, and there are some treatment options.

And lots of sympathy, feel free to memail me if you have any question or need a sympathetic ear. POTS sucks.
posted by pennypiper at 8:35 AM on May 11, 2016

I just wanted to clarify, I've had the whole range of Thyroid tests several years ago when my symptoms started, as well as iron, ferritin, vitamin D, and a bunch of others I don't remember.

Thanks everyone for your responses. It feels good to know there might be some sense to all of this, finally. It's been a horrifying and estranging experience.
posted by Blitz at 1:00 PM on May 11, 2016

Just a note that thyroid and parathyroid are different things and need different tests. In some cases you won't even test positive until they remove tumors from your parathyroid. My (registered nurse) mother in law dealt with ten years of unexplained symptoms before finally having surgery and only one of her two tumors even showed up on a scan. Anyway it's just one of those things that many doctors won't know about. Sorry to multi comment but I figured out I had pots due to mefi so any little thing to rule in or out is helpful.
posted by SockWombat at 4:32 PM on May 11, 2016

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