avidita

Hi: I would like to once again tap in our collective knowledge and ask your thoughts on the hyperadrenergic type of POTS. Here are my facts: *For past 2 years all TTT that I've done have shown POTS (pulse goes up, blood pressure stays stable). *This year I had a TTT where Blood Pressure went to 50/25 with pulse increasing as usual, so I have one doctor telling me I don't have POTS since my blood pressure plummeted on the latest test; and another telling me that sharp drops sometimes occur with POTS, so the blood pressure drop doesn't mean no-POTS. *My BP is always low, so I've never had orthostatic or any other type of Hypertension * Had a 24 hour urine catecholamines test during which I made sure I spent most of my day on my feet (walking for 1.5 hours, then shopping for another few hours) to really test my system and the results were completely normal (smack in the middle of the ranges), as follows: - epinephrine, urine: 4 ug/L (undefined) - epinephrine, 24hr, urine: 9 ug/24hr (0-20) - norepinephrine, urine: 16 ug/L (undefined) - norepinephrine, 24hr, urine: 36 rg/24hr (0-135) - dopamine, urine: 113 ug/L (undefined) - dopamine, 24hr, urine: 254 ug/24hr (0-510) So, my question: Let's assume I still have POTS, despite the one BP drop. Do the low values of my 24hr urine catecholamine test prove that it is not the hyperadrenergic type? The 24hr norepinephire is actually on the low end with 36, when the range is from 0-135. I did my best to say on my feet all day. I know the right way to do it is to draw blood when I am laying down and then after I have stood for 10 minutes, but they won't do it at this point. But if that is the case, and I stood almost all day, that should be reflected in the 24hr urine test, too, right? Please let me know what you think. Thanks!!!!

I have reactive hypoglycemia (plummeted to 35 on the 3rd hour) and the endocrinologist did not find anything that could be causing it as far as excessive insulin production, etc. So said I was just very sensitive to carbs. A funny thing happened to me recently that you might relate to. I was taking a long walk and in stead of feeling progressively better, as I usually do when I walk, I was getting progressively worse to the point where I started getting the same symptoms I did right before I blacked out on my most recent and confusing TTT (where my BP went to 50/25 after years of normal BP on numerous other TTT tests). So I thought I would pass out, sat down and called my husband to get me. When he took me home, I took my BP and pulse - both normal at 110/70 and 70 respectively. But I was still feeling bad and about to pass out....so it dawned on me to check my sugar - 50. There it was, the reason for my symptoms at that time. Pure and simple, I eaten mostly carbs all day and nothing for the 2 hours before the walk. So now I make sure I eat often and especially before any physical activity.

I am not quite sure about that statement. It might be true for some, but I got test happy when I was in Europe and other than a slight vit D deficiency (I stay out of the sun to ward off wrinkles) and slight Mg deficiency (only by 0.1, which is now normal), I didn't have any other deficiencies and I tested for a LOT of things. My B12 was actually twice the norm, not sure why . Also, as indicated by a lot of users above, many people gained weight after their diagnosis, so they must be absorbing nutrients OK....

I am 5'7", currently 115 lbs after having to gain weight from 106. Before I got diagnosed with Autonomic Dysfunction, one cardiologist in Europe told me that am a "gracile type" and it was normal for people like me (read thin and tall) to suffer from lightheadedness, etc. Since my symptoms started I got from 120 to 106 over a period of time and was getting thinner and thinner, so I had to really pay attention to my food and make sure I eat enough calories. I generally feel better at lower weights, though. As an experiment, I tried to gain and maintain 125lbs beginning of 2009 and it was when I felt worst.

Thank you everyone for your replies! They do sound like they are very thorough. I will wait out my Mito diagnosis and if nothing comes up there, I will definitely make an appointment at Vandi. Wish I had started there. Thanks again!

Hello fellow sufferers I am anxiously awaiting the Mito results from Dr Shoffner in Atlanta....In the mean time, since my diagnosis went from POTS to Autonomic Dysfunction due to my latest TTT blood pressure dropping to 50/25 on the 15 minute, I was wondering if it would be worth it to go to Vandi to shed some light on what type of autonomic dysfunction I am dealing with. Since I've already had a barrage of tests, I was wondering if anyone who has been to Vandi would tell me what tests they do there. I wonder what they do that puts their finger on a more specific diagnosis than autonomic dysfunction....On a different note, I am also confused about that blood pressure plummet. I've never had one before and I've had a 25hr BP monitor plus I am obsessive about measuring it all the time....I am not sold the one time deal rules out POTS, since some POTS patients faint and I am not sure how that would come about without their BP dropping at one point.....Anywho...I would appreciate anyone who is willing to share their Vandi test experience with me. Thanks!

I want to add my two cents to this and I am saying in advance that what I say will be controversial, but it's my own opinion and I want to share it. I have had symptoms since Dec'06 that were improving until I had my molars extracted under full anesthesia in Dec'09. Since then it's been pretty bad. For a year the official diagnosis was POTS and my TTTs were showing stable BP and about 30-40 bpm increase in HR. This past month on another TTT I blacked out with a BP of 50/25 on the 15th minute and my Dx was changed to "autonomic dysfunction", which to me is a step back, since it's a more generic diagnosis than POTS. For the past months I have been undergoing an array of tests both in Europe and in the US to find out if there is anything underlying my POTS with mitochondrial disease and EDS being the last ones evaluated right now. Now, on the question on recovery. I do believe that there are not enough studies done to have an accurate number. Additionally, autonomic dysfunction (that includes POTS) is considered a condition, rather than a disease. Asking about statistics on it, to me, is like asking what percentage of leg pain gets better. Leg pain due to what? So, here is my opinion from my research and doctor's visits in itemized form. 1. Yes, most people with autonomic dysfunction get better. It very much depends what is the underlying and/or original cause of the dysfunction. 2. Yes, the people on this site, for the most part, represent the 10% who get worse or don't improve. Why I think so? For two reasons. Because when I feel better, I go living my life, and do dwell in dysautonomia forums. And I think most people do, too. And secondly, because I've noticed most people on the forum that have been here for a long time have either Hashimotos, EDS, or Mitochondrial disease listed in their additional diagnosis. If someone has Mito, POTS is secondary to it, and that someone should not be comparing their prognosis and progression with someone who doesn't have Mito. Yes, discuss how you deal with the autonomic part of it, but for pete's sake, don't go telling people "The doctors are wrong when they tell you you'll get better, because I got worse and I haven't seen people getting better on this site". Because I've seen posts like that. 3. Activity is KEY to improving your autonomic dysfunction, regardless of the underlying cause (even Mito studies have shown to help patients). I have had periods where I couldn't walk around the block. And I have had periods where I climbed a 10,000 mount, in record time, in the middle of a bad spell. So whenever whatever I have sends me into a relapse and I find myself bedridden, I start small - 1-5 minutes on the elliptical as many times as I can, a walk around the block, etc. and over time I build it up to a few hours of cardio a day if I have the time and desire to do it....until the next relapse, but that is the only sure thing that has consistently gotten me out of relapses. And when I have a surgery or procedure where I am instructed to rest (read not able to do my mandatory 30 minutes of cardio per day) I always, ALWAYS relapse. Thanks for reading my opinion and I apologize if I offended anyone with it, it was not my intention.

As we all know, mental fog and concentration difficulties come with the territory of dysautonomia. I have recently tried a supplement that I seem to be tolerating well that helps with that and I have friends swear they like it better than Adderall. It's called Piracetam, it's an aminoacid and it's the worst thing you will ever taste in your life. So if you decide to take a stab at it, either buy it in pill form or get a home pill-making kit and go that route. Turmeric seems to help many with the physical fatigue, btw. Just thought I'd throw that out there

EDS, Marfan and Mito are genetic diseases that can be tested by a geneticist. However, EDS and Mito have different subtypes and each test is very expensive. I think the doctor should be able to tell which tests would be appropriate for you and based your family history and examination. Good luck!

It is normal for your BP to increase during exercise and take some time to go down afterwards. In the long run, it should actually help lower your BP. Is the 130/90 what you get when you work out or soon after?

@Mack's Mom Thank you, Julie! I know we all need to hear something encouraging from time to time. @nmorgen I have not been diagnosed with a specific type of POTS. I couldn't find anyone in Europe that could perform the supine/standing catecholamines blood test, but my blood pressure doesn't get high, so I am 90% that I don't have the hyperadrenergic type as that is a very good indicator. Like you I feel bad when my pulse is in the normal range (low for us, but 80 moving around is normal for normal people). It's too bad D-r Zia didn't bother to categorize my dysautonomia, he seemed so happy with himself that he found "autonomic dysfunction" and won't give me the record of the TTT, so I can take it to someone who can go beyond a Dx that I can find on Google )))))) I strongly feel that once an autonomic disorder is found, doctors need to dig deeper to find the underlying issue. For example, I spent quite a bit of time on this forum last November, getting increasingly depressed from the stories of people getting worse. BUT, there are those with underlying mitochondrial disease (not curable at the moment), those with thyroid issues, those with EDS, those with viral onset, etc. While we all have POTS, it is not wise to base one person's outcome on comparing them with someone who has a completely different underlying issue.

I had a food allergy blood test, not sure how reliable it is, but from experience I have narrowed it down to this: * Chocolate (or sweets) - instant vertigo and nausea attack. Rarely fails to hit me * Soy - I was a soy nut for years, but after the blood test I thought back and found that some bad spells I've had were after ingesting large quantities of soy, so.... * Nuts - the test only showed moderate reaction to those, but I know almonds make me dizzy * MSG - that is a no brainer. The Chinese place next door claims they don't use MSG, but I got two vertigo/nausea spells right after eating their food, so I am onto them ))) Scientists can use me to determine if a food has MSG in it or not. * Splenda - loved it when it came out first, hate it now after it floored me a couple of times. Really reactive to that stuff. Even aspartame is better for me than Splenda. * Any artificial sweetener, really. * High glicemic carbs - but I was just deemed reactive hypoglycemic, so that figures.

Thank you for your replies!!!! @sue1234 My insurance allows me to see any specialist that is in the network. All the tests that I have had done so far were requested and paid by me in Europe based on my research. The Euro doctor didn't even want to perform the first TTT because he thought I had nothing and after I begged for it (on top of paying out of pocket for it), he did it and 5 minutes into it, he was telling his med students that they are now witnessing POTS . So, in Europe, I found out I had Mitral Valve Prolapse and POTS, plus I developed irregular heart beat to go with my body jerks. So, when I got my US insurance I made appointments with the MVPS center in Alabama because they are cardio specialists and with D-r Zia in KY, because he is a neurologist, thinking that I will cover all angles. In retrospect, I should have gone to Vandi. The Alabama staff is really awesome and spends A LOT of time with you, by the way. So not all doctors are jerks. @Mack's Mom Thank you for taking the time to address my questions. Let me answers yours, too. When my upright pulse is low, my blood pressure is it's standard 90/60. I was walking around with a BP monitor at one point measuring it obsessively, so I know it hasn't plummeted before. But low upright pulse is only a recent phenomena. It would go to 80 when I walk my dog, etc, but only on occasion. Usually I am standard tachycardic: resting pulse 50-60, maybe 70 if I am REALLY stressed, 110 standing, 130 exercising at a medium intensity. I've had higher, like 130 just standing, but those, too, are episodic. On a daily basis, I have symptoms that on a 1-10 scale (10 being not able to get out of bed) are around 3-4. This has been as of this last February. before that I had a real rough patch. When I am PMS-ing, they get to about 6-7 for a few days and freak me out. I do have months where my symptoms get to 8-9 for no reason and stay bad for weeks, though. I've always been active doing all kinds of sports. Since my dysautonomia worsened 1.5 years ago, I find that I tolerate cardio much better than weight lifting, which D-r Moore in Alabama said was normal, since in weight lifting your BP and pulse have to go up and down on every set, which is harder than just getting them up for a period of time, like in cardio. The weekend after this faining TTT, I did a 12 mile kayak on one day and hours mountain biking on the other, while still symptomatic. Last year in the middle of a bad spell, I climbed a mountain. People hear that and think I am fine, but the truth is working out has rarely made my symptoms worse, it is usually studying or mental exertion that gets me and I am quite symptomatic anyways. BUT, this past November when my symptoms got so bad that I was shaking every time I attempted to even sit in bed, what helped me the most was the following regimen: I started by walking around the block once and going back to lay down. When I felt I could do it again, I did it again. I have an elliptical at home, too. So after a few days of only walking around the block as many times during the day as I could muster, I tried climbing the elliptical for 5 minutes. Then sit down and rest. Another 5 minutes in an hour or so. Basically, my day revolved around doing a little bit of exercise and then gaining strength for another round. I did the elliptical REALLY slowly, monitoring my heart rate the whole time and trying not to let it go over 130-140. In a month or so I increased the elliptical to 10 minutes several times a day and walking as much as I could. Little bouts of cardio seem to help me much better than anything else. But it requires A LOT of patience and not pushing yourself too much. Even a minute of something a few times a day adds up. @Chaos I know what you mean. I carry a list of symptoms and decide whether I want to tell my doctor or not based on the mood he/she is in. If they are dismissive, I don't even bother. Sometimes I wonder how it is possible for people to be more informed from a few weeks researching the net than someone who has spent years in medical school.

Hello Everyone! It's been a long time since my last post. I was on my way to Europe for some tests. Basically, they ruled out anything autoimmune going on and re-confirmed my POTS with a new TTT, 24hr blood pressure and heart rate holter. On my way out of a d-r's appointment, I had severe chest pain and was rushed to the ER with suspected pneumothorax, which was never confirmed, since my X-rays came out clear. I was kept in the hospital for 3 days for observation. I was very stressed and in the middle of all this started getting body jerks when trying to relax and sleep. I literally moved the hospital bed. A few days later, started getting muscle twitches all over my body when I am awake, too. 2 EEGs came back normal.....so, they put me on Lexapro 10mg and my symptoms were improving A LOT for the past 7 months. I still have the twitches and the dizziness and all that, but it's not life limiting at this point. I worked out 2-3 hours a day and am working full time. BUT, I've noticed my pulse has been going slow sometimes. I am in good shape, so a 50 resting pulse is not that abnormal, but sometimes it stays at 60 when sitting and even standing up. I don't know what that is about. I got insurance in the US and spent last week in the Alabama MVPS center and doing tests with D-r Zia in KY. Alabama went OK. But, when D-r Zia performed the 30 minute TTT in his office, I blacked out on the 15th minute with a sudden BP drop to 50/25 (Pulse 125). That has NEVER happened before. I've monitored my BP and pulse for the past 1.5 years and I know that my BP has been low (90/60), but stable. I even did a 30 minute active TTT last year and it never plummeted. D-r Zia spent literally 10 minutes with me (I taped it, so I know) to tell me I don't have POTS, but autonomic dysfunction. I tried to ask questions, but he waved me off and left. I am VERY upset. For a D-r who specialized in autonomic disorders in Harvard, he should be able to do more than interpret a simple TTT test. I read his notes afterwards and it reads: "Prolonged tilt-table testing resulted in a vasodepressor response. The tilt-table test was terminated after 15 minutes due to blood pressure of 50/25 mmHg with a pulse of 125 beats per minute and patient's symptoms. Vasodepressor response with an inadequate compensatory tachycardia, as seen during the autonomic testing, is likely to explain symptoms of orthostatic intolerance. The findings are consistent with autonomic dysfunction." Anyway. I am left with the following questions if anyone here is willing to take a stab at them, I will be extremely grateful: 1. Does the BP drop on this TTT mean that my POTS has progressed into pure autonomic failure? Is that the same as autonomic dysfunction? (note: I did spent the previous two days driving for 10 hours a day if that makes a difference for the BP drop) 2. Is my pulse hoovering around 60 when I am sitting and 65 when staying upright mean that I am getting better or that it is no longer compensating for the low blood pressure? 3. What does he mean by "inadequate compensatory tachycardia"? I understand that my pulse obviously didn't compensate for the blood pressure drop, but on TTT it always gets to 110-120 from about 50-70 and just stays there....The day before this TTT, I had another 10minute one in Alabama and they said my pulse didn't go up that much....so what, now I am not tachycardic enough? 4. It's been 3 years since my onset of symptoms and 1.5 years since it got worse after a surgery. Does this mean that It will progress and it will not improve? I've read that it should clear in 2-5 years, and mine has worsened, so I am assuming the worst.... 5. Do my muscle jerks and twitches mean I have something more than dysautonomia and what could it possibly be? I am also getting checked for MS and Mito, though my 2 MRIs have come back normal. I am so mad at the medical profession right now. I feel that they've let me down. One can't just through a diagnosis like that at someone and leave the room. What I am supposed to do? Google my treatment and prognosis? Anyway. Thanks again in advance to anyone who can shed any light in my little tunnel.

It is normal for your heart rate to initially go up upon standing. The problem is if it stays that way. You seem borderlining. I guess a specialist will be able to tell you more based on your symptoms, etc. Also depending on the activity you are doing and your level of fitness the heart rate may vary considerably from person to person. Someone very fit will have a totally different HR when walking than somebody who isn't. That is why the diagnosis of POTS is based on TTT where you stand absolutely still for a long period of time. I was instructed to not even talk on mine. I hope you get answers soon and I hope they are good.