lejones1

Yes, so frustrating. I've seen 24 doctors in the past year. I guess if they can't figure it out, they'd rather pass you on to someone else than have to look into something difficult. The only thing worse than being referred on to another specialist is being referred to a psychologist! I thought that getting a POTS diagnosis would make things a bit better, but it hasn't. Apparently it's too much to ask to want to investigate the cause of this illness that has made me pretty much housebound. I also get frustrated trying to explain to my family how tiring this is. I know I have a lot of free time to pursue doctors but it is emotionally exhausting to be tossed around between a bunch of doctors who, at best, just admit they don't really understand what's going on with you. And to repeatedly get your hopes up and then just be disappointed. After all that whining though, I do have a positive note! I had an appointment with a neurologist who specializes in POTS and it was great - the whole office staff was really kind and gave me big cups of water and was so understanding about needing to lie down, etc. It was only one appointment so I'm trying not to get my hopes up, but I am optimistic that are there some good ones out there!

I get this too! It's so weird. When I'm feeling good it's not really a problem, but on bad days I startle so easily - sound, touch, whatever. If I'm crashing really badly I don't like to be touched at all because even if I know it's happening, my body is still startled - it's like it just does its own thing, independently of my mind.

I get this sometimes too, not from reading out loud but sometimes from having long conversations. Like you, I don't really know how to describe except that it feels like my brain is just trying to shut down...or like you said, like I'm dying! It's terrifying, and I really don't know what causes it. Sometimes I can push through it and it passes but usually I just try to lay down in the dark for a little while. Ugh! I hope you figure it out, I'm sorry that happens to you too!

I can't work. I tried to go back twice since this started, once full time and once part time. But I would just end up just laying down on the floor for a couple of hours at a time, so I finally accepted it was time to quit. It's really depressing. I'd love to get well enough to work again but I have no idea how I'd explain this to a future employer!

Do you mean the kind with wooden slats instead of box springs? If so, it depends on the bed. My mom has a platform bed and the wood panels come up an inch or two around the mattress. She has elevated the head of her bed and it doesn't slide. Are you asking because you're shopping for a platform bed?

Hi and welcome! I'm sorry that your son and your family is going through this right now, but it sounds like you're finally getting some answers so that's good! My answers to your questions are just based on my own experience, what's right for your son may different, but hopefully they can give you some ideas. Why more tests? Because POTS is a syndrome, not a disease, meaning that it's really just a set of symptoms without a clear cause. Doctors still don't really understand the mechanisms behind POTS but there are number of things that seem to cause it - viruses, autoimmune disorders, other genetic conditions. Lots of, if not most, people can't find a cause but if you can and it's a manageable condition, that may help guide your son's treatment options. Your willingness to keep searching may also depend on the severity of his symptoms- if they're not too bad and are easily managed, it may not be worth going through the endless doctors appointments, testing, searching, but if it's severely affecting his quality of life you may decide it is. Also you mention that his diagnosis was likely POTS - there are other forms of dysautonomia and until those can be ruled in or out, that would be another reason to keep testing. Heat is bad! I don't know that it's universal but it's definitely very common for people with dysautonomia to be bothered by heat. If you search around this forum you'll find plenty of posts about it. You can probably find a more scientific explanation elsewhere but basically the body's response to heat is vasodilation, meaning the capillaries on the surface of the body expand and the blood flows there to release heat. So the body has to work a little harder to keep pumping the blood from the surface back to organs - heart, brain, etc. This is a particular problem for people with dysautonomia because our bodies already struggle to get enough blood our organs. So the reason your son feels like that is because his body is overworking and he's still not getting enough blood to his brain. I don't go outside much but when I do I make sure I have a cold water bottle. You could also use wet cloths or ice packs. I think you can get cooling vests to wear as well but I don't know the details. Whether your son's tachy is dangerous is definitely a question for his cardiologist because everyone is different - if he has another heart condition that's something to be aware of. If he's having tachycardia not relieved by laying down, that's something to mention to the doctor. But here's what mine told me: tachycardia in the absence of an arrhythmia isn't really dangerous, but it also depends on how high, how long, etc. Like your son, I don't really notice it...I may get tired and lightheaded but I rarely feel palpitations. I wear a HR monitor a lot and have occasionally looked down and noticed a HR of 200 or 215 but it drops as soon as I sit down. It was a little shocking at first and still frightens my mom, but now that I know that, for me, it's not dangerous, it's not something I worry about. Other things that can bring tachy on...for me, caffeine and alcohol. I think some people have actually said a little caffeine helps them but if he's a coffee or soda drinker, just ask him to watch how they affect him until he's sure. And I know he's underage but as a 23 year old I also know alcohol laws aren't always strictly followed...if you think there's a chance he may drink alcohol, or just as something to keep in mind in the coming years, you may want to mention to him that alcohol can be bad for dysautonomia. Like heat, alcohol causes vasodilation and also dehydration. I've tried it a couple of times and even a little bit makes me so miserable. And I agree with the above posters, maybe don't try to limit his socializing and activity. Dysautonomia is awful thing to deal with at any age, but when we're young the social aspect is especially frustrating. We're supposed to be "invincible" and be able to run around and have fun and not really worry about getting tired or not taking care of ourselves or whatever, and it's difficult to accept restrictions. He will learn eventually learn his limits, even if takes a little pushing and crashing to find them. Good luck!

I tried an elimination diet for 10 weeks. It was pretty extensive - no wheat, dairy, eggs, soy, pork, beef, shellfish, peanuts, nightshade veggies, corn, sugar (or any sweeteners), mushrooms, oils except olive and coconut...maybe a few other things. I actually became significantly worse - I've had POTS for a little over a year and the 2 months on that diet were by far the worst. I did it under the guidance of a doctor who said I must have been cheating...I wasn't, I never ate outside the house and ate no processed food. I reintroduced foods one category at time, every other day (except wheat, which I decided to stay off indefinitely, and pork and shellfish which I just haven't felt like eating). I had no reactions to reintroduction and actually started to feel much better. I think my problem was what I substituted while on the diet - a lot of nuts - nut milk, nut butter, just plain nuts - rice and beans. I'm now on a nut-free, bean-free, low-grain diet and doing way better. I saw improvement within a week - better off than I was before starting the elimination diet. Despite my bad experience, I would actually recommend trying it anyway. Just be aware of the foods you start eating more of, in case you're like me and one of those is actually what your sensitivity is to!

I've had problems with sensory processing too. When it was at it worst, it wasn't just going out it public, it was everything really - I couldn't stand lights in the house, TV, on the very worst days I couldn't stand to be touched or even really hold a conversation. For me it's really been the most frightening part of this disorder. I got POTS suddenly last May and didn't have any new symptoms until my sensory issues started in February. By April I wasn't leaving the house and was barely leaving my blackout-curtained room. At the beginning of June I started getting better - a lot better. And now it's been 3 weeks since I've had any issues - I've been out to the grocery store, to doctors office (which were a huge trigger before), had friends over, etc. I'm not on any medications and the only thing that changed in my life was 2 supplements - at the end of April I started taking magnesium and at the beginning of May I started zinc. A doctor recommended the magnesium because it's supposed to be good for migraines and sensory sensitivity is common in migraines. The zinc I was taking for an immune boost, may be completely unrelated. Anyway, this may just be a lucky phase, I know that lots of times the cause/effect relationships with our disorders aren't very clear. But the change has been so drastic for me, I thought it might be worth sharing for anyone else! Also if you read about magnesium and sensory processing issues in autistic kids, I think there's fairly good evidence that there's a connection. And it's definitely good for regulating the sympathetic nervous system, which we all need anyway! So I would definitely recommend giving it a try. I take 3 teaspoons of Natural Calm (magnesium citrate) a day - about 500 mg.

I have this problem too, mostly just with medications and supplements though. I only had one drug allergy before getting POTS (a year ago) and now all of a sudden I can't tolerate anything. My POTS came on after some sort of viral illness - I was given a bunch of antibiotics at first when they couldn't figure out what was wrong, no problem, then suddenly a month later couldn't take the same drugs. I have no idea what causes it or what to do about it - I've asked a few doctors and none of them have any ideas. One actually refused to keep seeing me as a patient because he didn't want to indulge my "medication anxiety". One suggested I had "leaky guy". He put me on a diet to improve gut inflammation and gave me a supplement but the diet made me significantly worse and I had an allergic reaction to the supplement, so now I gave up on that and I'm back where I started! I wish I had better advice to you but I have no idea what the answer is. I hope you have better luck in finding a solution!

I seem to dream a lot more since I've had POTS (or I guess remember it more). I rarely remembered my dreams before but now I usually remember a couple a night. The only exception to this is during "crashes" - they usually last a few days and during the first night I wake up every hour or so and I don't think I dream at all.

Do you have the Omron brand? I used one at a friend's house once and the positioning was actually kind of odd - definitely different from upper arm cuffs and she told me that her readings were way off if she didn't do it correctly. I think you're supposed to hold your arm up to your chest, almost like saying the pledge of allegiance (I'm hoping you're American and that makes sense). Your wrist is supposed to be right in front of your heart and you can use your other arm to hold that one steady. There were little beeps and a symbol showed up when it was in the correct position. I think she got all of this from reading the manual. If you have a different brand that may all be different though!

When you say healthier eating, can you be more specific? There are so many different ideas of healthy! Since you say clean eating, I'm assuming you mean fewer processed foods. But also...less meat? More veg? Fewer carbs? Leaning towards Paleo, vegetarian, or just eating more whole foods? Different things work for each person and each family, so just trying to get an idea of what you want for yours. I'm a Southerner too so I totally understand how difficult it can be stray from the typical diet here! I think one of the best things to do is start shopping at a farmer's market, if that's an option near you. Often the produce is as cheap, if not cheaper than, grocery stores but it's soo much fresher. Local farmers are less likely to use crazy chemicals on their produce but fresher also tastes better and that can be helpful if you're trying to get your family to eat more fruits and veggies.

Hi and welcome! I'm 5'9 as well and I have some Jobst full length toed stockings that I ordered on Amazon and they fit me well. They're women's small so I don't think they necessarily get longer with size. They seem very stretchy, I imagine they'd fit even fit someone a few inches taller.

They look at both BP and HR. A drop in BP is considered significant if its greater than 20 systolic or greater than 10 diastolic. What it means depends on the degree of the drop, when it occurs during the test, whether it's fleeting, sustained or worsening, how it correlates with your HR, etc. I think symptoms probably only matter to the extent that they correlate with your vitals (used to determine pre-syncope, etc) If you're symptomatic but your vitals are normal it would be hard for them to determine if the test is causing your symptoms or it's just a coincidence.

Have you ever tried an air purifier? I got one a few months ago and it's absolutely amazing. I think you can get large ones for the whole house or but I just have one for my bedroom. For me it's been amazing just to have a "clean" room to go to and to breathe clean air all night. I used to wake up with a lot of drainage and a cough or even wheezing in the morning - no more! Some brands, especially the ones meant for allergies, can be kind of expensive, a few hundred dollars or more, but it you're getting desperate it may be worth it (and I think a lot of the brands have 30 day money back guarantee things so you could at least see if it would work you) Also have you discussed allergy shots with your doctor? I know those are also a last resort thing but sounds like you may be getting there!

When you say you don't fit the criteria, what do you mean? You don't get enough of a rise in HR or drop in BP to fit a diagnosis? Do you know if you would possibly get an IV med to induce symptoms? Also another tip: try to stay really calm before you're tilted up - the whole time, because they may use your highest rate as benchmark. I was really nervous and my resting heart rate, usually in the 60s, was recorded as 96. If you're kind of on the edge and don't usually get big increases, that could make a big difference! Also they definitely will not leave you in the room alone! I had two people in the room the whole time, one watching me and one watching my vitals. The HR monitoring was continuous because I was hooked up to an EKG machine but blood pressure was not. I had a cuff on each arm that would inflate every few minutes. I suspect that the nurse watching vitals could manually choose to take the measurement as well because if you're crashing they like to get a measurement before you faint.

I wouldn't worry, Batik, everything you've said sounds typical. My test lasted an hour - 15 minutes lying down, 45 up. That's the max you'll ever get for a TTT. Even if you don't get 45, I wouldn't worry. I have POTS and NMH (diagnosed at the very end of my test) and they've been treated exactly the same. My cardiologist pretty much said that with the POTS diagnosis the NMH is secondary. I don't have usually issues with hypotension so it may be different, but if you do have issues with hypotension in your daily life, while it's definitely worth knowing, you don't need a test to tell you that! For staying warm, just ask for extra blankets. Unfortunately hospitals aren't really meant to be comfortable and the TTT certainly isn't. It's an hour, just try to get through it. Also, while it's definitely ideal to get continuous BP/HR monitoring, I don't think it's uncommon, especially at smaller hospitals, to get them taken periodically. I think mine were taken every 2-3 minutes. It's possible that where you're going just isn't set up to do continuously monitored tests. If that's the case, maybe ask them to do it more frequently, every 2.5 min or so. This may not be ideal but if you have POTS or NMH it will still give them plenty of info for a diagnosis. Just view it as a step in the right direction - you're ultimately looking to see the specialist and hopefully this will get you there!

I get this too sometimes. It's really frustrating/kind of frightening sometimes. I don't know what causes it so I can't help you there, but you're not alone!

I agree with the other posters that this probably just an error - happens a lot with home BP cuffs. Also a lot of them specify that they were really designed to be used on one arm over the other. BUT just in case you do consistently get such disparate readings and it doesn't seem to be an error, definitely tell your cardiologist because it can signal an underlying disorder. A few months ago a nurse made a mistake while taking mine in both arms and found a huge difference and everyone freaked out a bit. I don't remember exactly what it means - something about arterial disease. Really try not to worry though, it's much more likely that it was a machine error, so just check again.

Do you have a neurologist or even just a GP you can ask for a prescription? I just started getting migraines a few months ago and have been using Imitrex. It's amazing. I'm really medication sensitive but don't get any side effects from it and it starts working in about 30 min.

Thanks for help everyone. Alex, those articles are great. Unfortunately I called my neuro and he's pretty adamant about the fact that this can't possibly be neuropathy because it comes and goes + I don't have diabetes or HIV (I don't think he's very open minded). I have an appointment with a neurologist that specializes in autonomic disorders in 3 months so I guess I'll just hold out for that. Naomi, do you take anything for the burning/tingling? Even just supplements? Or have you found anything to relieve it while it's happening?

I've had POTS for about a year and since the beginning I've had burning in my feet. For a while it didn't seem to be getting any worse, but over the last few months it's started spreading up my legs and part of my left foot is entirely numb. The confusing part is that it comes and goes. It can go days without feeling it at all, sometimes it's just my feet, and sometimes it's all the way up my legs. It's usually just burning pins and needle sensation but occasionally it's a bit painful as well. Does this sound like it could be SFN? I saw my neurologist today and he said he has no idea what it is and is confused by the fact that it comes and goes. He also seems unconcerned and has no desire to pursue it. But it is concerning me, particularly because it's getting worse. If this does sound like it could be SFN, does anyone know of any articles or papers regarding the association between POTS and SFN that I could show my doctor?

I think the definition of tachycardia is a heart rate over 100. I don't think it's uncommon for POTS people to get there quite easily. My sitting heart rate is usually in the 80s (from a lying down rate in the 60s) but it only stays that low because I cope by sitting with my legs up or crossed and fidgeting a lot (I probably look crazy sitting in public). If I'm in a situation where I can't put my legs up or move around, and on bad days even when I can, my sitting heart rate can get between 100-110. My cardiologist doesn't seem to think this is abnormal for POTS. When you say 3 or 4 hours later, do you mean after 3 or 4 hours of sitting? Or 3 or 4 hours after he stops sitting up? I would assume that if your son is in a wheelchair he can't fidget/move around much and his legs are hanging down. It would certainly make sense to me if his HR got high after a few hours of that! But if you mean that sitting up for a little while keeps his HR up for the rest of the day...I don't know, that seems like maybe it would be something else. I hope you figure it out!

It may only take 10 minutes to diagnose POTS but it can take up to 45 to diagnose other things like NMH or vasovagal syncope. Also the longer you stay up, the better idea your doctor can get of exactly how your body responds to being upright. I had a full 45 minute test. I "qualified" for POTS in the first few minutes but it didn't make me pass out so they kept me up the whole time. My BP crashed at the very end, something I wouldn't have expected because it never happens in my daily life. It hasn't really affected my treatment but it's still good to know.

1. I wouldn't try to decondition yourself because while it may exacerbate your symptoms, it won't really be an accurate depiction of your condition. You want to know what's going on with your heart and nervous system, not how you respond to dehydration. I had no idea what POTS was when I had my TTT, so I wasn't particularly hydrated and had been told not to drink anything for 12 hours before the test. My BP dropped about 20/10 when I stood, then recovered, but it confused my doctor and he wouldn't diagnose me with POTS. I got a 2nd opinion and we realized that my BP only drops when I stand if I'm dehydrated and it's pretty much a non-issue. Anyway my point is...just be careful with trying to affect your results. Do what you do normally and a good doctor will correctly interpret the results. 2. It probably won't be too bad, it was mostly just boring for me until the last few minutes. Ask for a bag of saline afterwards, it'll make you feel much better for the trip home. My only caution would be to ask how long they'll keep you up and at what point they'll bring you down if you're having a reaction. Towards the end of the test my BP crashed and spent the last 7 minutes fluctuating between 60/40 and 50/30. My vision blacked out, I was shaking, I begged them to stop the test and I finally just slumped over for the last few minutes. It was MISERABLE and cruel and honestly felt like torture. The nurses told me afterward that their policy was to only end a test if the person faints or their heart stops, no matter how uncomfortable they seem to be. As I mentioned above, I switched cardiologists and the 2nd one couldn't believe I'd been kept up that long with that BP. So...just check before hand so you know what you're dealing with!