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L4UR3N

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Everything posted by L4UR3N

  1. I think the problem is that there are no universally accepted diagnostic criteria to distinguish between the two types. One study defines Hyperadrenergic POTS as standing NE above 600pg/ml, while another one defines it as above 1000, and sometimes over 2000 pg/ml. Both agree that postural hypertension must be present though. I was diagnosed with Hyper POTS simply because I am hypertensive when I stand. My standing NE levels were above 600 pg/ml, but not anywhere near the 2000 pg/ml mentioned in some literature. I did have positive urinary methylhistamines, which seems to go along with some types of Hyper POTS. My dopamine however has never been seriously elevated--actually it's right where it should be. I do have venous pooling which I think may be the cause of my hypertension. Both my BP and pulse normalize with a NS bolus. Salt loading has unfortunately never worked well for me, and no doctor has prescribed florinef due to my hypertension (though I would really like to try it given the paradoxical reaction to NS). I dont think that you need specialized care to get some tests that may prove valuable to you. Take some articles to your family doctor and ask for the tests that you need. You should have plasma (not urinary) NE levels lying, sitting and standing. They can measure the rest of your catecholamines at the same time. If those levels are elevated your doctor will most likely want to run some other tests on you just to exclude some other causes. If they are not elevated, and neither is your blood pressure, then you may have your answer
  2. Yep! I had that done. Mine came back negative... was kind of hoping for a positive result to pinpoint exactly whats going wrong. If you go to www.mayomedicallaboratories.com you can look up the test you want and print out the directions for storage and shipping to the lab. This will be helpful for your lab and they will be much more willing to do a send out there. Initially my lab told me that they dont send out to Mayo, but after I made it super easy for them, they were willing. Sometimes you just have to do a little leg work to get what you want .
  3. A shift in barometric pressure that aggravates symptoms would certainly make sense if the Driscoll theory is accurate. People who have a brain tumor, or have had brain surgery with shunts are highly affected by barometric pressure changes due to their inability to regulate CSF correctly. I actually have a watch that gives the barometric pressure--it does seem to correlate mildly with my symptoms. As for me, I notice the biggest increase in my symptoms with changes in altitude. I am best at sea level. It's such a dramatic difference that even traveling by car can be difficult. I took one trip that was non-stop hills and valleys--every time we would go up the huge hill my head would kill me and I would feel very dizzy,...relief only came at the bottom of the hill. It really impressed upon me that the pressures in my head cannot be right
  4. I should have added nasal stuffiness. Sometimes I get this while other times I dont--not sure what makes the difference.
  5. Another poll inspired me to do this one.
  6. I would get rid of the flushing because other people notice it the most . I simply hate having to try to explain why the upper half of my body looks like a cherry. I never know what to say. Also when I am flushed is usually when I feel the absolute WORST. Cannot seem to keep fluids in me no matter how hard I try. Other than that I guess my second choice would be dehydration. I think if I could just keep hydrated well enough, many of my other symptoms would go away. Great poll!!
  7. Wow, so sorry to hear that . As PotsyTurvy already mentioned, a high resting heart rate in addition to POTS like symptoms could indicate Inappropriate Sinus Tachycardia (which is another form of dysautonomia). IST seems to be even less common than POTS. My sister actually suffers from this and has had good success with a very old beta blocker that they hardly use anymore (I forget the name of it, but I will find out). I have the hyperadrengergic form of POTS. There are a few different theories about IST and HyperPOTS. Some doctors believe that it is actually different manifestations of the same disorder, while other doctors believe that they are different, but call them "sisters" because they have many similarities. The differences between my sister an I are : I have a very low heart rate when sleeping, while she has a high one. My heart rate increases dramatically every time I stand up, while hers seems to remain high all the time. She does not seem to have some of the other symptoms that I do, such as Raynauds, vertigo, venous stasis, and she has never passed out. She does not seem to need to drink / pee as much as I do She is able to tolerate beta blockers (I am not) and she has definitely been helped by them!! The similarities are: Both of our heart rates increase inappropriately to what we are doing (for example going up the stairs). We both have IBS, EDS, endometriosis, dizziness, chest pain, and fatigue. We both respond well to eating more salt. We both had an acute on chronic onset -- mild symptoms all of our lives, but dramatically increased in our 20's. Again, I am just going off of a personal experience, and really cant give you much more information than that. I am still waiting to meet someone else with POTS and IST in the same family . Obviously there is a genetic component to it.... not sure exactly WHAT though. I hope this helps in some way.... ***Added later: One interesting thing is that when I was under general anesthesia (so basically "asleep") I was tachycardic the entire time, while my sisters heart rate actually came down. Kind of the opposite to what we normally do!
  8. Im no expert and have never tried one, but I would think that it could cause further dehydration. Just a thought . At $25 I guess you could try it an see how you feel afterward (maybe just dont plan anything for the next day). Let us know how it turns out if you decide to try it! ....I DO love the beach haha
  9. An echo is done primarily for the purpose of checking the structure and integrity of your heart. It will alert them to any valve issues, congenital defects, and gives a good estimate of your ejection fraction (how much blood your heart is able to pump out). A holter monitor is looking at the electrical signals your heart is putting out--your rhythm. The holter monitor is what will show tachycardia and any other arrhythmias. As was already mentioned, it is better to wear one for a while (get a month long one if possible). Many people with dysautonomia have normal echo's but abnormal ECG's. Some people with dysautonomia are also found to have MVP, which would be seen in an echo. They are really both useful and necessary tests.
  10. I was on Cardizem for a while, which unfortunately did not work for me. It made me very hypotensive and actually MORE tachycardic (the doctors were scratching their head at this one). It was not the worst drug I ever took though, and I found it far preferable to beta blockers which I could not tolerate at all. Everyone is different though, and it might really work for some people! You never know until you try it .
  11. This happens to me too. It's quite frustrating. I have been having a hard time even finding vitamins that agree with me! For the longest time I couldnt take vitamin D because it made me feel horrible. I finally found a brand that my body seems OK with, though still if I take too much (and by too much I mean 1/2 of what I should be taking) I have a problem. When I mentioned this to a doctor she looked at me like I had 5 heads and said "thats not possible". Other doctors have thrown up their hands because I refuse to take things they prescribe that I know will be harmful to me. Your reaction to this situation is perfectly normal. We do seem to have horrible reactions to drugs, and ANYONE who experiences that is going to be very cautious and fearful. I get very frustrated with myself too because I feel like there may be a drug out there to help me,....but I'm going to be too scared to ever try it.
  12. This happens to me too. It's quite frustrating. I have been having a hard time even finding vitamins that agree with me! For the longest time I couldnt take vitamin D because it made me feel horrible. I finally found a brand that my body seems OK with, though still if I take too much (and by too much I mean 1/2 of what I should be taking) I have a problem. When I mentioned this to a doctor she looked at me like I had 5 heads and said "thats not possible". Other doctors have thrown up their hands because I refuse to take things they prescribe that I know will be harmful to me. Your reaction to this situation is perfectly normal. We do seem to have horrible reactions to drugs, and ANYONE who experiences that is going to be very cautious and fearful. I get very frustrated with myself too because I feel like there may be a drug out there to help me,....but I'm going to be too scared to ever try it.
  13. My doctor said the 10 minutes was to rule out anxiety as the cause of your tachycardia. In other words..if your still tachy at 10 minutes, its not anxiety .
  14. I have had both done. I would see if you can talk to the anesthesiologist about it--they have a wealth of info, and it will give you a good idea of if the one you are going to use is familiar with POTS or not. One thing I did do each time was tell them that I absolutely need EXTRA fluid. I specifically said to them that once they think they are giving me enough fluid--hang another bag. Also fluids after you come out of anesthesia are very important--not only to help with your low BP, but to clear it out of you faster as well.
  15. I'm the same way. Havent seen my cardiologist other than for a yearly CXR to check for cardiomegaly. They have been largely unhelpful to me, and since I cant tolerate most cardiac meds, there is really very little they can do for me. That's not to say that a cardiologist who is familiar with POTS and (if your really lucky) even specializes in it would not be helpful, because look at Dr. Grubb . I really think it just depends on the doctor. Technically the doctors who should be treating us are Neurologists, since it is not a cardiac problem, but a neurological one.....however most neurologists are even more clueless than cardiologists (in my experience). Its the Neurologists-- the very people who should be helping us-- who are most likely to diagnose you with a psychosomatic illness.
  16. Talk or text with a friend who understands, read the bible, pray, cuddle with my cat, get some sunshine, paint/draw, play guitar, watch a comedy, paint my nails, daydream about how things will change, do some research (always seems to give me hope), do some window shopping online, play games like tetris, words with friends, hanging with friends, etc., listen to some happy feel good music, watch funny youtube videos, search for some great recipes to try, coupon clipping, send cards to people going through a rough time, read the news and reflect on how fortunate I am, ...and many other things I'm probably forgetting! This forum itself is a big source of comfort . Just to know that there are others out there who are in the same situation, and that you are not alone. Also hearing about others success stories, or how well they cope with things is inspiring to me.
  17. When I graduated from nursing school and had to start working I realized how much nurses have to stand. Our shifts are 12 hours and we are standing 90% of the time. Unfortunately for me it has never gotten any easier . I cannot even count how many times I am thisclose to passing out during my shift. Sometimes I go to the restroom just as an excuse to sit down. By the end of the day my legs from my kees down ACHE, my head is pounding, and my neck feels as though it may explode. I typically work three 12 hour shifts a week and have to sleep at least 12 hours in between them. It's really taking a toll on my body. I do all the right things to try and compensate--wear compression stockings (without which I DO pass out), drink tons of water, tilt the head of my bed, salt load, eat all the right things, and do exercises to strengthen my leg (specifically calf) muscles. Unfortunately I have not noticed any improvement, even though I am doing the same thing day after day.......you would think my body would adapt. It reminds me of the time when I was still able to jog. I was jogging daily on the treadmill and for the life of me couldnt understand why walking up the stairs wasnt getting any easier.
  18. I could not agree more!! If your doctor doesnt know how to help you, then it's time to go elsewhere to one who does. No matter how rare a condition, there is always someone, somewhere that knows something about it. Keep searching and dont lose hope!! <3 <3 <3
  19. I do have EDS so maybe that does explain it. I just cant get over how fast it progresses... I just turned 29 and already need my second gum graft :/. The first one was horrible because the anesthesia they used did not work on me, so I felt the whole thing. My mom said she could hear me screaming in the waiting room, and I literally kicked the oral surgeon .
  20. are you sure that the moon cycles do not correlate with your menstrual cycle? I know that mine do, and my menstrual cycle is truly horrible. Makes my POTS a lot worse, and causes debilitating pain.
  21. Also just wanted to add that persistent tachycardia (such as POTS) will actually lead to an enlarged heart called Cardiomegally. For those whose etiology is not cardiac deconditioning, the addition of rigorous exercise will not cure the tachycardia and would in fact hasten this condition. I tried to post a comment on this article but it did not show up yet. I'm guessing it needs to be approved first?
  22. The problem with POTS being renamed The Grinch Syndrome is that doctors would see the constellation of symptoms, and automatically think that exercise will cure it. This is detrimental, and even down right dangerous for those people whose POTS have OTHER underlying causes. If doctors were to reach the conclusion that all POTS is caused by cardiovascular deconditioning, they will stop testing for other causes (such as adrenal insufficiency, celiac disease, other neurological disorders /brain tumors, autoimmune diseases, etc etc etc.) I believe that only a small subset of POTS is actually caused by cardiovascular deconditioning. Improvements in quality of life can come from exercise, but for most people, the etiology of their POTS is not so simple. This theory does not account for the genetic associations that are commonly found in POTS, the high occurrence of comorbid autoimmune diseases and gastroparesis, abnormalities on autonomic testing with MOST POTS patients, the statistically high occurrence of celiac disease or gluten intolerance among POTS patients, and many other neurological and endocrine findings. The square peg just doesnt fit into the round hole.
  23. Does anyone else have erosion of the enamel of their teeth or receding gums? This is a huge problem for me and I actually had to have a gum graft when I was 12....I will most likely need another one soon. The tips of my teeth are translucent and it continues about 1/2 way up. I am really trying to prevent more damage, but no matter what I seem to do, it progresses. I hardly have any cavities, but I am worried that I will loose my teeth at a young age due to this . Not sure if this could in any way be related to my POTS. Maybe I am just a snowball of random oddities . Anyone?
  24. Good point! I should have included medication in this list
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