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TXPOTS

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  1. My sodium has never been high, so it was a challenge getting a proper diagnosis of hypovolemia, diabetes insipidus, and hypoaldosteronism. Later, it was discovered my renin and aldosterone (responsible for sodium retention) were low and unmeasurable. So, despite the normal sodium, I was indeed dehydrated. I think this may relate to the renin/ aldosterone paradox that Vanderbilt and Dr. Stewart have noted in some POTS patients. At one point, it was awful: no skin turgor, tears, dry mucous membranes, severe weight loss, and these awful veins that would not give blood during draws, but my sodium was always normal. I look and feel much better on the Florinef and DDAVP, though I am not free of POTS. I imagine even POTS patients who do not have absolute hypovolemia still have thoracic hypovolemia and cerebral hypoperfusion when upright. I wonder how this plays into the high hemoglobin and HCT. We appear to be hypoxic individuals because the blood flow is not getting to where it needs to be at the right times. Good question about the thick blood. I also wonder the same.
  2. Wow, how frustrating for you!!! Still, the pilates is enough to keep your heart and skeletal muscle from becoming deconditioned, so why push it?. I think you know your body best and have found a way to stay in shape without putting yourself in jeopardy. Hopefully, you will eventually get back to where you were in 2007. I find the progress in POTS to be super slow and variable. I don't even know if I am really making progress, but just learning what works and does not work for me. I had 2 endocrinologists tell me DI and one endocrinologist doubted it, but I went with the endocrinologist who specializes in DI. The formal water dep test confirmed it, but it was a tricky diagnosis because my aldosterone was unmeasurable and hence I was never hypernatriemic.
  3. I agree with the theory of vasodilation and increased stroke volume during exercise. My POTS doc does as well. I wonder if the high expelled CO2 at rest is simply lack of oxygen rich blood being filtered out of the lungs at rest from reduced venous return? I don't understand the mechanics of the pulmonary circulation well. My physician claims to perform many of the metabolic stress tests on POTS patients and does not see my result. On the other hand, I am in better shape (during exercise) than the majority of POTS patients. I imagine this is due to the specific mechanism behind my particular POTS because I know many patients with POTS simply can not exercise or get much, much worse. I was in bad shape back in December. My heart rate was up in the 160s just standing up. I would try walking up and down our street to get moving. I was crying, gagging, and blacking out. My mom bought me a recumbent bike with a high back that was adjustable, and the improvement started relatively quickly from there. Never in my wildest dreams did I think I would be exercising for 2 hours a day. I feel great for about an hour afterwards and during my exercises, but at rest I am still so debilitated. Have you ever tried a rowing machine? It took me awhile to get used to it, but it barely raises my heart rate, and feel really wonderful while rowing. I think the seated position is helpful for POTSies. It's interesting that we both have DI, high blood counts, excessive constriction, and 2 boys . Do you also have low aldosterone as well? I am on Florinef, but I can only take 0.1mg due to my blood pressure getting too high on a higher dose. Are you still on Inderal? I haven't tried a beta blocker, but I'm skeptical because I did not respond well to clonidine, which was a big surprise to all.
  4. Mack's Mom, I've had the high hemoglobin, HCT, and borderline high MCV for as far back as I remember. It's possible that this coincided with the polyuria that I first developed at age 16. I was worked up for polycythemia years ago, and this was ruled out. My POTS specialist told me this is a finding that he sees a lot. He calls it hemoconcentration from dehydration. This is NOT funny anymore, but I used to joke with my husband that I must have diabetes insipidus and that my hemoglobin was higher than his, and he was the big red meat eater. Now I believe these were little warning signs of what was to come. My vitamin B12 is at the high end of normal as well. I am awaiting methylmalonic acid results. Thanks for your reply to my CO2 post.
  5. Thanks so much for reply. I was disappointed when my POTS specialist could not come up with an explanation, and I am even more frustrated that we can not find a pulmonologist who has encountered this. The POTS specialist thinks this is my main issue and claims he has only seen one other patient with this result back in the 90s who he was unable to help. I just don't understand why a physician would perform a test without being prepared to research/ explain an abnormal test. It annoyed me that he suspects this is my main problem, but basically told me to go find someone out there in the medical universe to interpret it.
  6. I am not familiar with any of the ingredients of the adrenal support. Like you, I would have to research. I have had so many bad reactions to medications that I am nervous about taking any new medications, herbs, or dietary supplements. Now I'm even leery of the D-ribose, even though it seems to be making me feel better. Hypoglycemia is bad, bad news for anyone with POTS.
  7. Firewatcher, Thank you for the reply. I am still trying to get my hands on the official results of the PFTs, but I will be interested to see my lung diffusion capacity. You brought up some very interesting thoughts. My POTS began the last Saturday in May 2008 after an intensive swimming work out. I had symptoms from May-October 2008, but in the beginning, the symptoms only occurred after my mornings of swimming. To this day, I swear the swimming had something to do with triggering my POTS. I swam pretty intensively, and I wonder if I made myself hypoxic after these swims. My hematocrit and RBCs also run high. It has been this way since I have been 16, which is around the time I started displaying symptoms of DI. Speaking of high elevations, I often describe my illness as constantly living with altitude sickness to my family. This is the closest I can come to a simple explanation for how I feel on a daily basis. I'm sorry your HR is shooting up so high when exercising. This was me back in December, but now although my heart rate shoots up quickly, it stays pretty stable, despite a high intensity exercise program. I am baffled that I am able to exercise the way that I can, but I can not sit up straight. In fact, my respiratory quotient immediately improved when I started exercising. Weird.
  8. Has anyone out there had a cardiometabolic stress test? I've had this test performed twice in the past 6 months and have had very unusual results. As part of the test, it measures and resting and working respiratory quotient. The respiratory quotient is CO2 eliminated/ O2 inhaled. My O2 inhaled is normal, while my CO2 eliminated is very high. This is at rest. As soon as I start exercising, my respiratory quotient goes back to the normal range. My RQ at rest is very high (1.3). My doctors says I am like an anaerobic animal at rest. The test was performed twice in 6 months and both times I have gotten this result and have been fasting as instructed. My POTS specialist does not know what the result means, which is very frustrating. He told us to find a pulmonologist, but we have yet to find one that has a clue what this is. I am better physical shape than most of the population, but the problems for me start when I stop moving. I cannot sit or stand without head support. My pulmonary function tests are normal, and I am not short of breath.
  9. I aso tried the D-ribose and it made me feel horrible. At the same time I bought the Adrenal Support, but after the horrible experience with the D-ribose I was too afraid to try it. I'm gad it seems to be helping you. Did you happen to try the adrenal support? I found this stuff on a clinics website for CFS and fibromyalgia. Nmorgen, Have you experienced episodes of low blood sugar? I wonder if the D-ribose made you feel badly because you are prone to hypoglycemia. I take less than the recommended dose 2.5gm in the morning and then at noon. I can not take the D-ribose before bed because it keeps me awake. For me, it has the similar effect of caffeine on how it makes me feel without the elevation in heart rate and blood pressure. The only POTS symptom is helps with is the fatigue, which is low on my list of issues to fix. I would be avoiding it like the plague if it made you feel horrible. It obviously did not agree with you. I was taught in pharmacy school to be very careful when recommending herbal and dietary supplements. For one, the FDA in the states does not regulate the products. Secondly, we were not extensively trained in this area. I may have had one class. I have become a little more open minded with time, but I really scrutinize a product before I purchase, and I chunk it quickly if I notice any adverse effects whatsoever. My POTS physician wanted me to take L-arginine. It is a nitric oxide precursor. I have supposedly "low flow" POTS based on the results of a Hokanson test and absolute hypovolemia. I thought the Hokanson was a flimsy piece of equipment, but that's another story. The L-arginine made me feel awful after a week, so I stopped taking it. After a few more weeks, I tried again, and I felt awful again. We know our own bodies best. I have not tried any adrenal support products. I'm on Florinef already, so there would probably be an interaction. I'd have to analyze the ingredients. I know my natural aldosterone has been non-existant which is why I supplement with Florinef, but my cortisol tests have always been normal. I know adrenal support for adrenal fatigue is very controversial and not in my realm of expertise.
  10. I got a chuckle out of this because I am a caffeine tolerated, alcohol crashes me, and better in cold POTSie. But, like you, I am a "better moving around" POTSie. I am also starting to look more into herbal treatments, as well as Eastern medicine. I have found a nutritional supplement for CFS called D-ribose surprisingly effective at boosting my energy levels. I find this odd because I do not have exercise intolerance, though I do have overall fatigue. I would not recommend to patients on diabetes treatment or hypoglycemic episodes, since it may lower glucose levels. Thanks for the recommendations.
  11. Dana, I completely understand. Over a month ago, I had a slew of labs drawn and traveled for a week of various cardiac and autonomic testing. I am having trouble getting all the results. One of the abnormal results the doctor was unable to interpret, so he told us to basically find someone else who could, because he did not know what the results meant. Why run a test if you are unable to interpret and furnish the results? It was rough on my body going through all this, and I am left trying to fight to get results and without a treatment plan. From the ordeal, I did learn that my heart is healthy, and I am not deconditioned, far from it. I understand the frustration....
  12. Dana, I remember when paging through some of Vanderbilt's ongoing studies, one of the common inclusion criteria was a upright NE level > 600. Obviously, this is not necessary for a POTS diagnosis. However, if Vandy was using this as an inclusion criteria, it must be a common finding in POTS patients. I hope you get some more insight on what the results mean as far as treatment, etc...
  13. Dopamine is also synthesized in the the adrenals, as well as the brain and nervous tissue, and is the precursor to NE and E, as L-DOPA is the precursor to dopamine. Technically, normal levels of dopamine, depending on the lab, are less than 30 pg/ml (both standing and supine). Perhaps, the lab that performed your test considered 20 pg/ml the cut off, and they did not report the actual number which could have been 19, 10, 6, or 0??? My other question is whether NE is elevated when going from supine to standing in non-POTS patients? I imagine they have done control group studies on this. I notice that normal ranges of NE run higher when patients are upright per several labs. Where's Rama? He's good at interpreting this stuff.
  14. Dana, Norepinephrine is made from dopamine. You have high levels of NE, most notably when upright, so you must be producing enough dopamine to pump out the excessive amounts of NE. Hopefully, you will get some more answers from other posters. I am guessing the elevated NE is typical of H-POTS or at least a compensatory mechanism resulting in high levels of NE.
  15. Issie, Thanks for bringing up this topic. I lost one of my best friends and several other after my diagnosis. I could no longer keep up with these other moms who lived a very fast paced, overbooked lifestyles. I was left in the dust. To my amazement, other people I barely knew came out of the wood work to help and offer words of encouragement. Funny how people's true spirits are revealed in times of trouble.
  16. Brye, I was a pharmacist pre-POTS, and now I can even remember if I took my meds in the morning. I sympathize with you. I use one of those weekly pill boxes to keep track now. Needless to say, I won't be going back to work where other people's lives depend on me dispensing the correct medication.
  17. I was worked up thoroughly for a CSF leak before my POTS diagnosis. Both conditions can produce severe orthostatic headaches, along with other similar symptoms. A MRI with contrast can look for meningeal enhancement, which is present in 80% of patients with a CSF leak. If they can locate the source of the leak, it may be surgically repaired. In my case, I did not have a leak. I learned this after multiple MRIs, myelograms, blood patches, and traveling across the country to 2 CSF leak experts. Finally, I was diagnosed with OI, along with low aldosterone and diabetes insipidus. The orthostatic headaches and neck pain continue on a daily basis, but at least I have the correct diagnosis now. There is an article by a CSF leak expert at Mayo, Dr. Mokri that details orthostatic headaches without the presence of a leak in patients with POTS. Patients with POTS are often chronically dehydrated which can result in low spinal pressure, producing a low CSF headache without a leak. Good luck. I hope the source of your problems is a leak that can be easily located and repaired. I had a CSF leak by an overly aggressive epidural during childbirth. It was immediately fixed by a blood patch. Yes, the symptoms of a CSF leak and POTS are similar.
  18. Erik, I believe you are right. These are more "waves" of normalcy. This is how I used to feel pre-POTS, but now I consider feeling normal euphoric. I got a chuckle out of your Indiana Jones analogy, but this is certainly a great way to describe these moments when I feel well or even that 2 week period. Like you, I also have absolutely horrid moments with nightmarish adrenaline surges. I hate the panic and doom feeling. Now that I have reconditioned my body, I believe my POTS underlying mechanism must be neurologic or neurohormonal in nature since I am capable of feeling well, even if it is for a fleeting moment. Pat57, I would be worried about epilepsy, but I had that one episode that lasted 2 weeks. I certainly feel more relaxed when I get these waves. I have heard that Buddhist meditation can increase parasympathetic tone. We all could practice relaxation and stress relief.
  19. I have this very bizarre symptom that comes and goes since acquiring POTS. I have yet to find another person with this symptom, or a physician who can explain this. I have these very brief waves (seconds) of what I would characterize as euphoric feeling or feeling of extreme well being. They come sporadically, out of the blue, but it feels as though for a moment, I have blood properly flowing to my brain. The euphoric feeling is accompanied by a tingling in my sinuses. My head feels full, but lighter at the same time. This is not like an endorphin, running high, and I do not have sinus issues or do recreational drugs or alcohol. It literally feels like a switch goes off for a brief moment and restores my body back to normal functionality. I have been ill with POTS since May 2008 with the worst symptoms starting in March in 2009. In June 2009, I awoke with this euphoric feeling, and I felt wonderful for 2 weeks, until I started feeling awful again. Since that time, I only have this symptoms in waves and certainly not every day. This is a shot in the dark, but has anyone else experienced this?
  20. Good point, Jana. I had forgotten that some doctors consider a significant DROP in blood pressure a separate entity from POTS.
  21. You are correct that a POTS diagnosis focuses on a heart rate increase. Some POTS patients have a drop in their bp during tilt, while others keep a steady bp. My bp goes up and up and up the longer I am on the tilt. Here is a link from Vanderbilt on PAF. I believe PAF is accompanied by a very low supine catecholamine level when supine that barely rises in the upright position. http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790
  22. Hi Maxine, I've also had what I believe are olfactory hallucinations. Very disturbing. My "bad smell" was sour milk. I've had numerous MRIs and no abnormalities. I have no idea what this is, but luckily I have not had this problem since January. Just wanted to let you know that you are not alone.
  23. I had a Qsart sweat test this am. I was hooked up to 4 electrodes on my foot and leg, and an acetylcholine solution was added to each electrode. Then a current was placed through the electrodes, which felt like ant bites, but very gentle ant bites for 5 minutes. I stopped feeling the current after 5 minutes, and the test proceeded another 5 minutes. It was the easier POTS related test to date. Don't sweat it. . My test came out normal. You probably already know what is involved, but I wanted to share since I was stressed about the test.
  24. Lina, I just want to thank you for stopping in with encouraging news. I am one of the newer members (diagnosed in December 2009, but sick since May 2008). This condition is so debilitating, but it helps immensely to hear from people who have gradually felt better and regained some functionality. Good news. I am happy for you.
  25. I have headaches every time I try to be upright for a significant time. So much so that the physicians thought I had a cerebrospinal leak. After exhaustive investigation, this was ruled out, and I was diagnosed with POTS. Headaches in POTS can be from cerebral hypoperfusion or cerebral vasospam when upright. I second keeping very well hydrated, especially in the heat. Unfortunately, compression did not work for me, but it is worth a shot. I would try the compression hose, along with an abdominal binder. If anyone finds relief from these headaches, let me know. I assume they get better as the POTS gets better.
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