jump

Hello all, This may sound like a silly problem in light of all the much more serious things everyone here deals with, but lately I've been feeling really upset/guilty/distressed about this. I LOOK like a very healthy young woman - I don't need to use a cane or a chair, and when I walk into a room I'm not obviously ill. In fact, many people in my life (some of my co-workers, some of my acquaintances) don't even know I have dysautonomia, in part because I try to hide it well (I feel self-conscious) and in part because I'm lucky enough to still be functional. Anyway, I often find myself in situations where I MUST sit - I start feeling very unwell and on the verge of a faint, so I take a chair. If I'm somewhere public - on a bus or train, or at an assembly of some kind - I feel really guilty because I feel like people are looking at me and thinking, "Why is that young person hogging a seat instead of offering to someone else?" Recently I was at a political event that was very hot. There were limited seats. I had had doubts about going at all, but it was for a cause I had worked very hard for, and I wanted to be a part of this event. So I went, but once I was there I realized it was maybe too much for me; my heart rate was completely out of control, and what is more, I was alone (no friends or family with me). I found myself a chair in the shade and started to feel at least tolerable. I knew I needed to sit or else I'd faint; I also knew I couldn't drive home until my hr had calmed down some. Meanwhile, the area began to fill up, and many elderly people arrived long after the seats were filled. All around me people my age were jumping up to offer their seats. I felt so embarrassed! There was a part of me that wanted to yell, "I have a disability, I have to sit!" I just felt so badly, and I felt like everyone was looking at me critically. I would have offered to sit on the ground, but it wasn't permitted -- I either had to hold on to my chair or stand, and standing (and walking, at that point because of the heat) was out of the question. I know there's probably no solution for this. *I* know I had to sit and I really had no choice. I know I couldn't really have done anything differently. But I still feel so badly about it, and these situations always make me feel so self-conscious. Anyway, I just needed to vent to people who understand.

Have you been being treated for Hashimoto's for a while with a different medication, or is this a new diagnosis? Improper treatment of hypothyroid disease can CAUSE adrenal fatigue. If you are taking a medication that causes your TSH reading to be normal but your T3 and T4 readings to be off, this can result in adrenal fatigue. However, I was under the impression that this is usually caused by synthetic thyroid replacement therapies - NOT by armor thyroid. In fact, as far as I've heard, usually people are given armor when they develop adrenal fatigue in conjunction with hypothyroid as a way of resolving both issues. There's a good website on the adrenal/thyroid connection that someone here posted -- I can't find it right now but I'll look for it later. If you try a search of these message boards you'll probably find it.

Yes, in fact I would say I ONLY get headaches because of standing. I don't get migraines, and prior to developing POTS I never got headaches. Now I get them (and coathanger pain) if I stand still for too long, or if I have an overly-upright day. What is a csf leak?

They just did a big study about how people who know they have terminal illnesses and people who survive major trauma or the death of a loved-one are, by in large, HAPPIER than people who live with chronic pain. In fact, chronic pain and chronic illness is one of the FEW things that can cause a generally up-beat person to become chronically unhappy. I'll try to find the article tomorrow and post it here. It was in the NYT magazine a week or two ago.

Hello all! When I was first diagnosed (over a year ago now, wow!) my doctor told me to drink a lot and eat more salt. I already drank a TON because of being excessively thirsty, but at the time I was hardly eating any salt (because I feared it would make me more thirsty). I don't tend to eat processed foods so my salt intake was quite low. At the time of diagnosis, my sodium levels would sometimes come back high and sometimes come back normal. My potassium always came back normal. My BP has never dropped upon standing, and sometimes increases when I stand up. My resting BP tends to be on the high-ish end of normal (at the time it was consistently around 120-125/60-70). So I was REALLY worried about increasing my salt-intake, since I thought it might make my BP higher and/or my sodium levels higher. Finally about six months ago I started trying the increased salt thing because I hadn't really tried it yet, and it's made me feel a lot better! My BP hasn't gone up (in fact it's a little bit lower now, in the 115/55 range) and I don't feel nearly as thirsty as I did before I started eating more salt. My tachycardias aren't as bad, either. I noticed a difference almost right away, and now I make sure to add salt daily. If I didn't have low BP and if my potassium wasn't off, why is the increased salt making me feel better? Does anyone know?

Hm this is interesting to me. I, too, can easily touch my foot to my forehead. I didn't know some people can't do this! My joints have always been a little too loose. My doctor once told me I have loose tendons, or ligaments, or something. When I used to run, I injured my ankles a lot because they would roll so easily and not snap back into place; the range of motion in my ankles is unusual for someone who does nothing to increase it. However, I feel very certain I'm no where close to having a connective tissue disorder. In fact, all my siblings have the same "loose joint" problem - we're all flexible without stretching or making an effort to be, and we've all had ankle problems from the ligaments being too loose. I've always thought of my flexibility as a good thing for the most part, and while I certainly don't think it has caused my POTS, maybe it helped me be "predisposed" to developing it or something.

I second the suggestion of frequent small meals. My doctor also told me to avoid high-fat foods and not to eat quite so much fiber -- that, while fiber is good for the health, it can make issues of low motility worse. In my case, too, eating gluten-free made a huge difference. It's like I have a brand-new gut. I no longer have any symptoms of low motility except that I don't really get hungry -- but the bloating, cramping, pain, etc is completely gone. It's not for everyone, but if you try everything else and it doesn't work, consider trying GF for two weeks and see if it helps.

Here are some articles about D and Calcium and how they influence insulin: http://jcem.endojournals.org/cgi/content/abstract/92/6/2017 http://findarticles.com/p/articles/mi_m088...16/ai_19913495/ http://www.medscape.com/viewarticle/500874_9 I can understand why your sister feels upset! I felt the same way -- everything I read about type II diabetes just talked about weight, age, lack of exercise, etc. Nothing described me. I even eliminated all sugar from my diet and lost ten pounds (when I wasn't overweight to begin with), and this had no impact on my blood glucose levels. At first, my doctors just looked at my BG levels and said, "Oh, you must be eating too much sugar, you must not be exercising enough" etc because that's what they're used to seeing. I had to really pipe up and say, "Look, I'm only 28 with no family history! Even if I lived on jelly beans I shouldn't be having this problem!" But diabetes type II is one of those "guilty" illnesses - people, including doctors, are quick to assume you're doing something wrong if you have it, rather than assuming something unusual must be going on. Good luck!

Definitely dysaut related, although I don't have any answers for you! My thirst was easily my most trying symptom for years (now I've kind of gotten used to it). I literally can't function if I don't have access to water. I carry a water bottle (or two or four) at all times, but if for some reason I can't have water for more than an hour or so I get really sick. I WISH I knew how to manage this symptom, but I've never found anything that works. I just drink constantly all day long, usually about 3-4 liters, but in hot weather or if I'm exercising I can drink 5-6 easily. I would love to just be a normal, 2-liter-a-day girl. Maybe someday.

Hey, In my case, it turned out to be a vitamin D deficiency. Apparently a D deficiency is a relatively common cause for a-typical type II diabetes (ie, the individual is young, eats well, exercises, doesn't have high BP or a family history of early-onset type II). But even my doctor didn't know about this - she caught the D deficiency kind of by accident (because I was also very tired), and then put all the pieces together later. Taking a D supplement has returned my blood glucose levels to normal. The thing about this that I found kind of weird is that I've been tested for D many times, and it always came back normal. Then this one time I was tested it came back EXTREMELY low. My doc speculates that I always used to have physicals in the spring or summer (true) when a D deficiency would be less likely to show up, and when she looked at my history all my D tests were always in the low end of normal... so probably every winter I was dipping into deficiency, and over time this was affecting my body's ability to regulate insulin, etc. I hope your sister finds some answers! If she hasn't had it tested all ready, she should definitely get her D tested, just in case it's something as simple as that.

Hi Chrissy, What kind of pain is it? Sharp and acute or something different? I have a chronic, crushing-type chest pain that I think is part of my POTS, and it is worse when I lie down and worse in the morning. My resting hr is often on the low end, around 50-55 and my sleeping hr is usually in the low 40's high 30's. I was SURE this wasn't POTS-related, because this symptom didn't start with my other POTS symptoms, but after having everything checked out and finding nothing wrong, I'm kind of left with POTS as the only conclusion. I had my heart and lungs both checked out. The pain, for me, is pretty much every single day, but some days are worse than others. There was a period of about two months when for a while it got MUCH worse - to the point where I could hardly move - but fortunately that subsided and now it just seems to be chronic and not getting worse or better. I haven't found anything at all that helps it (not advil or any other kind of OTC pain killer, not heating pads or anything like that), but I have found it's worse on days when I am significantly more active and/or if I talk a lot more than usual (like if I have to give a presentation or if I have a very long phone conversation). If you find anything out, let us know 'cuz I'm curious!

I also think this is really interesting. Just the other day, I was talking to a friend of mine and reflecting on how I was a year ago or a year and a half ago, and commenting on how much "better" I am now and how relieved I am to have a little relief from the extremity of some of my symptoms. But then, as I thought about it, I feel better because I've modified my life style so drastically and my expectations for myself are so dramatically less. If I was trying to live the life I had roughly two years ago, I think I would easily feel as sick if not more sick than I did at that time. I think, too, I've gotten so used to my symptoms. Right now, as I sit here typing, my hr is 100 which is technically in the tachycardia range -- and a year ago, I would have noticed this and been thinking, "Oh my god, what is WRONG with me that I can't even sit and type without my heart beating like mad??" But now it doesn't even register at all -- I didn't even think my heart was going fast before I took my pulse to see what it was. I've read a lot about teenagers with POTS who recover, but I've read very little about adults with it. I know my mother probably had NCS all her life (she used to faint all the time and had low bp, and doctors just said she was "prone to fainting" - but she also suffered from extreme exhaustion and a myriad of digestion problems) and now that she's gone through menopause she says she feels a lot better. So maybe in the very long run some of us will improve even if we don't experience any improvement for several years. I know for me, I am just now coming to a point of acceptance, where I am starting to accept that this is just what my life is now. Like others have said, I'm not calling my doctor nearly as much. If she were to ask me how I am, I think I would easily make the mistake of saying "better than before" because my MENTAL state around all of this is so much better. My symptoms are pretty much unchanged, but I don't feel nearly as upset about this all as I did a year + ago. I wonder if all of these things contribute to doctors thinking their patients are doing better than they really are.

Actually I don't think this is weird at all, since there is lots of evidence and theories out there that some types of POTS/dysautonomia are caused by some kind of autoimmune problem (the body attacking its own autonomic nervous system, and/or POTS as a symptom of other autoimmune diseases like Hashimoto's, RA or diabetes I). When the body is under stress, the autoimmune system is suppressed -- and therefore people with autoimmune diseases feel temporarily better. This phenomenon was seen recently with the victims of Hurricane Katrina -- while most of the population affected by the hurricanes had a huge surge in illness (colds, flus, respiratory problems, depression, chronic pain), people will autoimmune diseases (lupus, type I diabetes) experienced a huge DROP in symptoms for about 18 months. Then, while the "normal" population slowly started to have less illness, the autoimmune-diseased population started having an increase in symptoms until they felt the same or worse than they did before the hurricanes. To me, the most likely explanation is that your POTS is somehow autoimmune-related. When you have a cold, especially for the first few days, your autoimmune system is suppressed and therefore not "attacking" your autonomic nervous system as vigorously as usual. Then, as your body starts to heal, your autoimmune system rebounds, and you feel your normal set of POTS symptoms.

You mentioned you were in the Polish mountains -- were you vacationing at a higher elevation than you usually live at? I find that an increase in elevation of more than about 1,500 - 2,000 feet of what I'm used to noticeably increases my tachycardia. Very high elevations can actually make me quite sick. I believe it has something to do with there being less oxygen in the air. I'm sorry you had to cut your vacation short, but as others have said it was still really good that you tried. You just have to keep trying - remember, you had a few pleasant days before this happened. You wouldn't want to have missed out on those few nice vacation days! I hope your EP can help you get back on your feet again.

I have a vitamin D def. also, and I did find I felt a lot better - not cured, but definitely better - when I started a D regimen. My levels were 12, but my doc only told me to take 800 IUD daily The lowest they sell them in is 1000 IUD, and then I did my own on-line research and I take 2000 IUD's daily instead. I tried just taking 1000 since it was closer to what my doc recommended but I still had all my same symptoms (insomnia, mostly) and I feel better when I take the 2000 IUD. If you have a bad reaction, you can take a daily dose instead of a weekly or monthly dose and that should help some. You CAN over-dose on oral vitamin D, so you should read up on the warning signs just in case.

I get hives from stress, too, and I don't have any allergies at all. I usually get itchy, blotchy patches on my neck and chest, but sometimes I get small hives on my face from stress. This happens to my mother also, but, unlike me, she used to have a variety of allergies (pollen, bananas, dust, animals....)

Ram, if someone experiences the vasoconstrictive activities of norepinephrine, does that mean their body produces too much NE or too little?

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? My doctor seems to assume ALL people with POTS have blood pooling. I've never been tested for this. For the most part, I don't have symptoms of blood pooling (no blotchy skin, no swelling), EXCEPT if I stand for a very long time (more than 1/2 an hour) I start having severe neck/shoulder pain, headaches, and if I stand a very long time (an hour or more) I slowly start feeling like I'm at a high altitude, like I'm getting oxygen deprived. But on a day-to-day basis I don't think I have blood-pooling symptoms. 2. Have you ever been diagnosed with EDS or suspect that you may have it? No. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? No. When I lie down after being awake all day, I have uncomfortable heart palpitations. But when I wake up in the morning, before I actually try to move out of bed, I feel very normal. Once I sit up/stand up, I have symptoms, but the only time I have lying-down symptoms is after I've been up for a while. These lying-down palpitations are noticeably worse when I stop taking magnesium and B supplements. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? My doctor doesn't seem to be aware that there are multiple forms of POTS - however, I don't have the flushing or other symptoms that I've read about here, so I'd suspect I don't have this form. 5. Have you ever been informed by a doctor that you have low blood volume? Not really, but I've never been tested for it. When I try to give blood, it takes FOREVER for the blood to be collected and I'm usually sick for days afterward - like completely incapacitated (since getting diagnosed with POTS I've stopped giving blood). My doctor has recommended I drink a lot and eat more salt, which I know is sometimes what they tell people to do if they have suspected low blood volume, but she never specifically told me she thinks I have that. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes, and for a few years I thought I had IBS. But then recently I was diagnosed with Celiac disease, and since following a GF diet I have hardly any symptoms at all. Once in a long while, if I'm having a bad POTS flare, I will have IBS-like symptoms if I try to stand up. But this hardly ever happens any more since eating gluten-free. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? YES. My hands and feet are almost always freezing cold, and often white or blue in color. Definitely much worse when I have to stand. 8. Did your POTS arrive suddenly? No. 9. Is your skin pale? No. 10. Please the top 6 worst symptoms that you experience with POTS: Right now, in order of most peevish: Chronic chest pain Overwhelming fatigue Excessive thirst and excessive urination Easily get out of breath (exercise intolerance) Insomnia Tachycardia/feelings of pre-syncope upon standing Before treatment, the tachycardia, bradycardia and uncomfortable heart palpitations were by far the worst symptom and kept me from doing a lot of things. With meds, the tachy, brady and palps are much more manageable, and most of the time I have no noticeable bradycardia or palpitations any more, just tachycardia, which is worse in the mornings.

If there is no change in BP or if BP increases, and the heart rate increases 30+ bmp or goes above 120, that is usually considered POTS. If the BP drops and the hr increases, that is usually indicative of NCS. In fact, many doctors believe that if the BP drops when the heart increases that rules out POTS and must be another form of dysautonomia. So, you might not need to see an acupuncturist so much as a more knowledgeable doctor.

I think pacing is really important, but I also think a small amount of pushing myself has actually made me a little bit better. Marginally better, but better. For me, "pushing" myself to do a certain type of difficult things - standing for a long time, walking great distances, going to long social events where I have to talk for a long time and/or stand up for a long time, doing too much in one day, doing too much housework, working too many hours at my job - NEVER helps me. These things always set me back. I do as much as will make me tired (everything makes me tired) but not exhausted. Because with these types of activities, I find if I "push" myself there is no benefit. But, if I "push" myself to do activities that are challenging but healthy - taking a walk for exercise (not too long or too fast), doing a little weight-training, pushing myself to go for a little bike ride even if I'm tired - I find these things help me long-term. I push myself to try and do some form of (light to light-moderate) exercise five times a week. I've been doing this for a year, and I do feel a little bit better now. But there are some weeks I simply can't do all five days, and this has by no means cured me. But I think it's a good example of how moderate "pushing" can actually be beneficial. I think it's important to have some social life, even if it's a quiet social life like having a friend over for tea or going to a movie. I do push myself to do these things -- again in serious moderation -- because otherwise I get too depressed. I don't push myself to do things like house cleaning or more work than I have to, because these things wear me out with no real emotional return. I think with a chronic illness, you have to pick and choose -- do I push myself because I'm going to benefit in some way? Or am I pushing myself because I hate admitting I can't do this, because I want to be "normal"? Am I pushing myself to do something just because everyone else can do it, or is it something I really want to invest my limited energy in? Definitely a hard balance to find!!!

Can I ask what kind of chronic pain do you have? I havfe had a lot of pain with this. My muscles ache at times and my joints hurt. That is in addition to the chronic terrible chest pain I have. Basically.....I feel many times like I have been run over by a bus! I understand completely about needing to feel validated -- I think that's the thing that this site has helped me the most with, I feel understood here with all these people who really GET it. I have a lot of pain, too, and for me it's a crushing chest pain mostly. Sometimes it spreads to my neck and shoulders -- but it's always a "hit by a bus" feeling for me and not so much joint pain or muscle aches. It's more like my ribcage has been bruised or crushed. If you have joint pain, have you been tested for lyme? Lyme disease is a common trigger for POTS, and one of the hallmark symptoms is joint pain. Never feel bad for "whining" - it's not whining to tell the truth about your lived experience, and we all need to air our grievances aometimes and we all need to be understood. It's part of what makes this board so great!!! take care, jump

My POTS symptoms are definitely worse when my hypothyroidism isn't well-controlled -- and though I believe they're separate illnesses, I think they influence each other a lot. I found when I took synthroid my numbers came back fine but I had no relief from hypothyroid symptoms. Now I take levoxyl (have been taking it for almost nine years) and I find it works much better for me. I've also taken armor thyroid and unithyroid in the past, but the armor thyroid made me MORE sick and the unithyroid was the same as the synthroid. Most doctors don't recommend trying armor thyroid anymore because the pig hormone is actually not as close to the human hormone as the synthetic ones are now. Ten years ago this wasn't the case but now they say the synthetic is actually closer to the "real thing." The thing with hypothyroid (and I know I've said this a million times here, so sorry to be repeating myself, but I think it's important!) is everyone has a normal-for-you range WITHIN the "normal range." Most people don't know what this is since most people don't have their TSH levels tested when they are healthy, just when they start feeling sick, so there's no baseline. But, say you are in the high end of normal and still feeling sick, or the low end of normal and not feeling quite right -- it could be that for YOU personally you need to adjust your medication a little. I personally feel my best when my TSH is on the higher end of the normal range (eg, I take a little less medication). Also, I have hashimoto's, and sometimes my TSH levels are normal but my body is still producing thyroid antibodies -- so now I get both tests (the TSH and the antibody test) done, and this makes it easier to get the medication right. Good luck, and don't be afraid to pursue this with your doctor. A lot of PCP's think that thyroid is just a simple "take this pill" solution, and it's actually a fairly complicated condition to treat.

Hmmmmm. Well, if you experience a racing heart and you had a sinus tachycardia during your TTT, then that sounds like POTS. When the cardio doctors tell you they can't find anything wrong, what they mean is that there's nothing STRUCTURALLY wrong with your heart and no dangerous arrythmias, which is good -- they don't mean "there's nothing wrong" as in "everything's normal." If you had something structurally wrong with your heart, you probably wouldn't have autonomic dysfunction, you'd have a heart condition. So even though those messages sound conflicting, what you've described with your TTT and loop recorder sounds like POTS. If this has started happening recently, perhaps you just have periods of time when your body doesn't experience these symptoms, and that would explain your normal readings at the doc's. Perhaps you experience tachycardia after standing for longer than three minutes, too, which wouldn't be uncommon for POTS. "Just tachycardia" can make a person feel pretty lousy. I have POTS, and as far as my cardio is concerned, I "just" have sinus tachycardia upon standing. But that tachycardia means I'm exhausted all the time, I have difficulty doing my job, and I have a constellation of other autonomic problems not related to my heart rate (insomnia, difficulty digesting, excessive thirst, exhaustion, chronic pain). So, again, when they say "just tachycardia," probably what they really mean is "phew, you're not about to have a heart attack" -- they probably don't mean there's nothing wrong with you. It's all relative. Sometimes, with POTS, doctors are happy to rule out really dangerous conditions since POTS symptoms look a lot like life-threatening heart disease. But, there are treatments for POTS that should hopefully help with the fainting and with the feeling yucky. If your doctors decide on that diagnosis, the next step should be to find things that help you. It's not like they're going to say, "Oh well, just a little tachycardia," and send you home with no help. Unless they're crummy doctors, which is very possible, in which case you'd need to find a new one.

Actually, to me those seem pretty normal. Neither your hr, your systolic or your diastolic number change more than ten points between sitting and standing, and all nine readings are within the normal range for sitting and standing. As far as I know you would not be diagnosed with POTS or NCS based on those readings alone. Some people with POTS or NCS don't see a change until they've been standing for 5 - 10 minutes -- when you have symptoms normally, is it after you've been standing for a long time? Can you get a tilt-table test done, or is that what you're going to vanderbilt for? You mention you experience lightheadedness and tachycardia. You didn't experience tachycardia in the doctor's office during those three readings, so it seems like it would make sense to have the doctor see what's happening when you DO have tachycardia. Did they suggest a 24-hour ekg, or anything like that? Do you notice the lightheadedness and tachycardia at certain times? For years, I went undiagnosed because my symptoms occurred mainly in the morning, and the doctor kept seeing me in the afternoon -- and checking my BP and pulse sitting and standing, and finding nothing. It was only when my symptoms progressed to being every-day all-day that I finally got a diagnosis, but I wish I had pushed harder to have someone look at me in the morning when I was experiencing symptoms. If you have POTS or NCS or orthostatic intolerance of any kind, it's not going to show up if you're having an a-symptomatic moment. You have to either be in the doctor's office when you're having symptoms, or have a way of recording your HR and BP at home when you're having symptoms. Good luck, I hope you find some answers!

Well, I think there might be a difference between BEING hot, and noticing that objects are hot. I don't do well when I AM hot -- like if I have to sit in the sun, or if I get overheated on a hot day. This causes POTS flare-ups for me. But most of the time I'm freakishly cold and I can't get warm -- and I find I can't really tell when objects are really hot. I love having hot things on me because I'm so very cold, and sometimes they're so hot they burn my skin but I still feel cold. Just the other day, I had these heating mittens on, and I had them turned waaay up high and I was LOVING it -- it didn't feel too hot, in fact, it felt barely hot enough. But when I took my hands out my skin was bright red and it was obviously "too hot" for my skin. But I didn't know it until I looked at my skin. For me, it's definitely related to my hands and feet being so cold all the time -- on the rare occasions that my hands are a normal temperature, I feel like I can gage the temperature of objects much more accurately.