andersondebra Posted October 2, 2011 Report Share Posted October 2, 2011 Hi,Well I said I would keep you informed about the pseudopheochromocytoma dx after visiting with the psych doc, also got into the new cardio doc ahead of scheduled appt.So, here is the news, the psych doc said that this was NOT pseudopheochromocytoma, she said that if I had that then I would be having attacks, much like panic attacks that would come and go and it would be inconsistent. However, I am not having attacks that come and go nor do they look or act like panic attacks. For me EVERYTIME I get up or get physical my BP and HR go up as they should except that they do not stop going up nor do they steady off at any certain point, which leaves me with climbing BP's and very fast HR's that are extreme and have now caused irreppable heart and vascular damage. Also I do not show any signs of panic, because I remain calm, but sweaty and breathlessness from the tachy. So, this dx was way off base.I then was able to get into see a new cardio doc right after seeing the psych doc. This new doc is new to me but not to my family. He has taken care of my mom, uncle, cousins, etc.. most of the family who have had EDS vascular problems. So, he knows the family history with EDS and has watched most of the family die from vascular, aorta , or organ ruptures. Anyway, he has not dealt with dysautonomia with any of them but was willing to see me and now that there is vascular and heart damage due to the extreme BP's and HR's he felt it necessary to continue to watch me closely, so he got me in right away.Anyway, he listened to what I had to say and examined me, even gave me the orthostatic BP exam. He then said that I definetely had hyperadrenergic dysautonomia, but felt my problem was not with my autonomic nerves, but instead with the cerebralvascular control, meaning it was coming from the brain. He said with that being my issue that topral would not control the BP and HR, which it wasn't. It worked great if I just stayed sitting down or had to get up for a quick walk, but anything more than that and my BP and HR would go through the roof. So, he told me about a brand new drug that litteraly just came out on the market, it is Bystolic, and it works at the cerebralvascular center of the brain, so it stops the brain from sending the message to up the adrenaline, as opposed to topral which does not stop the brain from sending the message and from the glands sending out the adrenaline, topral just stops the heart from reacting to the adrenaline, but will not stop all the other dysautonomia type problems because the adrenaline has been released into the blood stream and is setting everything off and if the body becomes to over run with adrenaline the topral is unable to block the heart from reacting to such a large amount therefore the heart will still react, giving me high BP's and HR's and all the other dysautonomia symptoms..Anyway, he gave me a trial bottle and a prescription, but the pharmacy had to order the script because it is so new that they do not have it in yet, so I am using the trial bottle he gave me. I have now been on it for three days and I am happy to report that I am no longer in a wheel chair, my BP's are not getting higher than low 100's on the top and high 60's to low 70's on the bottom, and I have not had one episode of tachy!!!!! NOT ONE!!!!!! I have not had one adrenaline surge since starting the drug and I have done everything, from cleaning my house to taking a walk with my dog. Now this is all great but, (yes here is the but part), my ankles have been swelling up and hurting really bad by the end of the day, and I feel exhausted all the time, now I am not sure if this is due to my over doing it since I have been in a wheel chair for 2 months straight or if it is the drug, but I will be calling the doc on Monday to inform him and I will keep you informed. Let me just say one more thing I am not suffering with dizziness, blurred vision, uncoordination, brain fog, or any other symptoms of dysautonomia or side effects that topral caused, so It seems really great other than the two things I am experiencing. This drug has little to no side effects as the other drugs do, so that is a big plus, but like I said I will keep you all informed. This brand new drug may actually be the answer for people who suffer from hyperadrenergic dysautonomia, and the reason why is because it works specifically on the part of the brain that causes the hyper type, as no other drug out there does, so it stops it before it even happens. I hope this gives hope to all of you who suffer like I do, please check this drug out and ask your docs about it the next time you see them, it is definetely worth it, and like I said it is brand spanking new, so new that the pharmacies do not even have it in, and some docs may not even know it exists yet, so check it out.Best wishes,Debra Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 2, 2011 Report Share Posted October 2, 2011 Debra,I tried Bystolic over a year ago and it did not do much for me, it lowered my HR, but my BP stayed up too high and it did nothing for my tremors. I am glad that it works for you though, your improvement is encouraging! Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 Hi,Are you sure it was Bystolic because the doc told me it was brand spanking new and my pharmacy, which is Walgreens, has said that they have never heard of it and they would have to order it for me, so are you sure you it was bystolic? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 2, 2011 Report Share Posted October 2, 2011 I have a friend that started Bystolic a couple of years ago. That's what makes me think it is not brand new. BUT, I have never tried it, and I have the same symptoms as you(no EDS). I do not do well on other beta or alpha blockers, so I may ask to try this at my next doctor visit. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 2, 2011 Report Share Posted October 2, 2011 (edited) I am absolutely certain that it was Bystolic (nebivolol 5mg) because I still have the rest of the bottle. It was great for HR, but did nothing for my BP or tremors. I do well with a low dose of Propranolol and a heftier dose of Klonopin and 2xdaily dDAVP. The dDAVP drops my BP to normal levels even better than the BB, but the BB is good for the HR surges. Nothing has dropped my exercising HR, it still climbs to 180+ bpm very quickly, but the BB handles "daily life" rather well. Edited October 2, 2011 by firewatcher Quote Link to comment Share on other sites More sharing options...
lieze Posted October 2, 2011 Report Share Posted October 2, 2011 I am so glad that you found something that is working for you.I have also heard of Bystolic.It maybe a newer drug but I don't think it's as new as what you are being led to believe.One of the nurses at work also has very high heart rates and it was about a year ago also that she reported to be in Bystolic and it does seem to help her she described herself as just having a freaky heart that didn't work right.Maybe it can help more people out there-I'm glad it's helping you. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 2, 2011 Report Share Posted October 2, 2011 It seems like there should be a way to circle back to the doctors we've seen previously to let them know what we've discovered for a positive purpose of helping others.Since medicine is a practice and physicians partially work based on experience if they would have more information it seems like society as a whole would benefit.I wonder if the psychiatrist reported her findings back to the previous cardio? Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 You may all be right, that this drug is not so new, I am not sure why this doc said this to me, or why the pharmacy had to order it, but for those of you who have not tried it, I would look into it. Now maybe it won't work for everyone like it has for me, but maybe some of us can find some relief.Firewatcher- I am sorry that you are having so many problems and that this drug did not help you, I hope you find the drug or combination to help you get better, soon.Sue- I was like you too, I have been on several different BB and aldomet and either could not tolerate them or they did not work, some just lowered the BP but never touched the HR and others were vise versa, but so far this one seems to be controlliing it all, but I ahve only been on it for three days, so we will see longterm how this is going to go, but for me this is a really good start. Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 Lieze- you are so right, in your last posting, and no the psych doc was not going to report back to the cardio doc, but it is in her report and I WILL be sending it to the cardio doc. However, he had such an attitude that I do not think he will think much of it, he was one of those "I am the doctor and I know all and you are the patient and you know nothing", arrogant types, so I do not think this will phase him or make him think twice. I wish there was a way that we could report to a national site doctors who are like this, so as to warn others not to see this type of doc, maybe then these docs would get the picture and change their ways. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted October 2, 2011 Report Share Posted October 2, 2011 I take Bystolic as well and it has been the 'miracle' drug for me too! It does not control the tremors, however but now that I am taking Melatonin for sleeping the tremors have dissapated a lot. If the Tremors get really bad and my heart rate is going bizerk the Doc said I could take 1/4 of a pill of Propranolol which works well too. The Doc tried to switch me off the Bystolic to strictly Propranolol but my HR was 120 to 140 again just getting up & going to the restroom. So I agree with you, Bystolic is the drug of choice for me. It took a couple of weeks to really get to working though and I had that flip-flop feeling in my chest quite a bit right when I started it. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 2, 2011 Report Share Posted October 2, 2011 Firewatcher is right. I've been on bystolic (I take it only as needed) for about 2 years. That being said, it is new for a beta blocker. Most of the other ones have been around for decades. Not all pharmacies stock bystolic yet. It is supposed to control HR without lowering BP. It is helpful b/c many of us have a high HR and low BP. I was on atenolol before bystolic, which also worked well for me.As for pseudo-pheo, I think the symptoms for pheo overlap with POTS. So if you have those symptoms without testing postive for pheo, you could get the misdiagnosis. Doctors are just in a rush to diagnose us with something...glad you looked into it further and cleared it up. The one thing I don't understand is your doctor's statements about cerebrovascualar vs autonomic (I have not heard that distinction before) and his reasons for chosing toprol vs. bystolic. Usually docs can't tell which drugs work before testing them out, and as for mechanisms, usually that takes forever to figure out too! Oh well. I hope it works for you! Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 Yogini-I went to Vanderbilt to get dx first, and they ran al their tests, and then dx me with Hyperadrenergic dysautonomia, but all the dysautonomia tests showed them that there was an autonomic problem but the specific tests that were done showed the docs that there was no damage to my autonomic nerves, which meant that the problem causing the dysautonomia was not coming from the autonomic nerve endings, the problem was coming from the autonomic control center in the brain, which is known as the cerebral vascular center. This makes a big difference in treatment and possibly the cause of your dysautonomia. You see if your tests come back showing that the nerve endings of the autonomic system are damaged then the docs need to be looking for a possible cause of nerve damage, things like Pure Autonomic failure, Famialia Autonomic, MS, or auto-immune disease, in those cases then a neurologist or other specialist needs to get involved and there may be other forms of treatment that are needed to control the under lying disease that is damaging the nerves. However, if the tests show that the nerves are not damaged and causing the autonomic issues then the doctors look to the autonomic control center as being the cause, which brings you to the cerebral vascular center of the brain. This dx is a hard one because the medical community does not know wnough about the brain and how it works to really be able to effectively treat dysautonomia when the brains control center is "broken" or "haywire". This makes finding a drug or regime of drugs a hit or miss experiment, with each person being different.Anyway, when I was dx my tests showed that there was no nerve damage even though I have EDS, so my problem was the control center. So, what happens to me is I have low blood pressure when sitting or lying down, but as soon as I get up my BP and HR go up, like it should, that is the bodies normal response to gravity and activity, but in a healthy person within seconds to 3 minutes the BP and HR should steady off and even drop back down to a normal level, but for me my cerebral vascular center does not have the ability to shut of the adrenaline response needed when getting up or getting physical, so my BP and HR would just keep going up and up and up to extreme levels. Now when I say extreme levels I am talking about BP's that get well over 200's on the top number and up to 130 for the bottom number with HR's that get up to 170 and even into the 200's. It was so bad that when they did the TTT I not only went unconscious but also stopped breathing because my heart rate was so fast that the heart was unable to fill with blood and oxygenate it and send it to the lungs and brain. This happend to me every time I got up and I mean everytime. I was in the University of Chicago Hospital when this was happening and the docs there called around to other university hospitals in the area to see if anyone knew of this kind of thing, all the other univeristy docs were pointing my docs to Mayo, or vanderbilt. So, after talking with docs from both institutions it was decided that I needed to be at Vanderbilt and so that night I was air lifted to Vandy because they said that I could not make the drive with these levels. I spent two weeks at vandy going through a butt load of tests, when they finally came back and confirmed that I had hyperadrenergic dysautonomia that was being caused my the cerebral vascular center of the brain, another words the control tower went on vacation! I was told that this was the hardest dx to treat and had the least good results and they figured it was probably caused by my EDS, but could not say for certain. Anyway, I was started on treatment and within 9 months I had gotten better. Then for what ever reason I got hit again this summer and was right back in a wheel chair and dealing with the problems all over again and this time the meds were not working like they had the last time, so my doc here was convinced that it was this pseudopheo thing, but I have since found out that it was not.The new doc I am seeing choose Bystolic over topral for two reasons, one was that I was on it and it was not lowering the BP or the HR, my numbers again were extreme and now the echo showed that I was in the beginning of what is known as "high output heart failure" this is where the diastolic number is extremely high but the top number is high but no where near as high as it should be incomparison to the lower number it also means that my HR is staying well above 165 and damaging the vascular areas and the heart. The echo showed that the left ventricle was badly damaged and the heart itself was enlarged all of it due to the extreme BP and HR. So, we needed to get me off of the topral because the topral does not stop the cerebral vascular part of the brain from sending out the signals to up the adrenaline, all it does is it tries to block the heart from responding to the amount of adrenaline that it is reacting to, but because my "control center" (the cerebral vascular part of the brain) was sending out extreme amounts of signals for an extreme amount of adrenaline, the topral could not counter act it, and so the heart was still reacting to the adrenaline therefore leaving me without any real control over the BP and HR. So, he choose the Bystolic because its pharmacolgical make-up works differently then the topral or other beta blockers. (you see most all BB just work to stop the heart from reacting to the adrenalin, but do nothing to stop the brain from making the body put out all of the adrenaline) This is waht makes Bystolic different than other BB, becuase instead of trying to control the adrenaline surges at the nerve or heart level it tries to control the adrenaline surges from the command center the cerebral vascular part of the brain, which happens to be the "broken" part which causes my dysautonomia. So, now the "control center" is no longer sending out the messages therefore I am no longer having adrenaline surges because my body is not making all the adrenaline, so my heart has nothing to react to anymore, for that matter the rest of my body does not have anything to react to anymore either.Also I think it is important to know that this drug does work on lowering BP, it actually lowers BP sometimes to dangerous levels, b/c one of the boxed warnings with this drug is that it can and has been known to cause heart attacks or MI's because it can bring the BP so dangerously low b/c of that problem with this drug it states that a person should be started on no more than 5mg. and titrated up every two weeks so as not to crash their BP and vascular system. This drug is not meant for only tachy with low BP, it is bascially meant for people with very high untreatable BP's and possibly have tachy as well. This may be why it is used so little, and because of the way it works may be the reason why it is one of the newer BB that most docs do not use. One last thing b/c this drug stops the adrenaline receptors from the brain level, it has a very serious side effect of death due to heart failure b/c if the heart starts to fail and needs the brain to compensate by pushing out adrenaline to keep the heart going, the brain on this drug does not have the ability to send out the signal for more adrenaline to help the heart out. All this means that if you went into cardiac arrest drugs or the paddles will not save your life if you have been on this drug b/c it will prevent your brain from compensating with large doses of adrenaline which are needed to get the heart going again. The one thing my cardio did say is that if I wear an ID bracelet that says that I am on this drug an ER would know to start attempting drugs that are antogonists to help by bypassing the cerebral vascular response of no adrenalline on this drug to help my body to produce the adrenalline needed to restart the heart. Also because of this effect anesthetics are out of the question for the same reason and can be fatal when given without the brain being able to send out signals of adrenaline when needed. So this is not a drug to be used in people with low BP or for people who could be better controlled on other BB. This drug was specifically made for people with uncontolable high BP that is life threatening, you can even read this in the literature.I hope this makes sense, I tried to explain it how it was explained to me by both Vanderbilt and my new doc. So there is no cerebral vascular vs. autonomic issue, they are one in the same, it is just the different parts that make-up the autonomic system, with the cerebral vascular part being the autonomic control center and the nerves and heart being the end result of the control centers out put. I hoped I also explained why bystolic was choosen over Topral and other BB that have not worked for me in the past, and yes you are right that each person reacts differently to the drugs so if you have not tried them how would the doc know, except for two things, one I had been tried on them and they failed and two docs do know how the drugs work because they have the pharmacological make-up from the drug maufactuer which tells them how the drug works by telling them what the drug works on and how it changes it, such as the difference between other BB working at the heart level to block the heart from responding to the adrenaline surges as opposed to bystolic working at the brain level and stopping the brain from producing the messages for an increase in adrenaline. So, with knowing that pharmacological knowledge and with the knowledge of what area in my body is "broken" and causing the dysautonomia, the doc was able to narrow down which of the drugs would best work to control my problem. I hope this all makes sense, anyway, so far I am doing well for the first time in a longtime and I am most happy to be out of my wheel chair again and doing things for myself, without causing myself anymore damage or icky symptoms.Debra Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 2, 2011 Report Share Posted October 2, 2011 Is this like baroreflex failure? Does he have any idea why this autonomic center in the brain malfunctions? I always like to know WHY. I am SOOOOO happy that you found something that is working for you! Does it help the dizziness too?Naomi Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 2, 2011 Report Share Posted October 2, 2011 (edited) Debra,I was dxed at Vandy too. Propranolol was best for me since I also went hypertensive on standing. Unfortunately, I also go hypotensive AND bradycardic on lying down, so whatever I took had to wear off by night-time or my HR would drop too low. Unmedicated, it is normally in the low 50's-40 bpm at night. Add the tremor and Propranolol was my only real option. I manage well enough with that, but anything more than a brisk walk will send my HR up. I am happy that Bystolic worked for you, I was eager to try it several years ago and disappointed when it did not work out for me. Like you, POTS has given me "collateral damage," only mine is Chronic Kidney Disease/failure instead of Heart failure. Edited October 2, 2011 by firewatcher Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 Firewatcher-You sound like me, I was the same way low BP's and HR's when lying down and high HR's and BP's when getting up or getting physical. Even sitting down and trying to blow dry my hair would send my BP up into the 170's over 110 with a HR of 165, so just getting physical would set mine off too. As far as trying to walk anywhere, even just going from my bedroom to the bathroom would send me off the charts and leave me with a pounding headache, blurred vision, tremors, breahlessness, and feeling faint. I too tried propanolol but it did not work at all then I was tried on aldomet but could not tolerate it and then on to topral which I was like you on the propanolol. It would give me minor relief when getting up and walking a short distance, but anything more than that and I was right back to where i started from. I too also needed to have it out of my system before bed or my BP and HR would drop very low.I am so sorry that this drug did not work for you, so far it has worked with allowing me to get up and walk far, blow dry my hair, clean my house, etcc. and it is not making me go to low when I am down, but again I am only into my third day, so we will see how it goes, but I got my fingers crossed.I really hope you find something that works better for you, b/c I know what this is like. I was really hoping that with my good news that I could maybe help someone else out there in my situation, that did not know about or has not tried this drug, but I hope you find something better than propanolol to allow you to get your full life back. Oh and hey is Vandy not a great place? I love them I had Dr. Biaggioni and he was so caring and comforting to me, b/c I was a mess when I first showed up in their hospital, but he gave me hope yet helped me to realize the reality of this illness and still treated me with such compassion that I think that is what got me and my family though this.Naomi- yes you are right it is like baroflex failure. You see we all have some form of dysautonomia but each one of us may have it for a different reasons, b/c it may be that different areas of the autonomic nervous system have gone haywire or been damaged by some underlying disease or illness. That may be why some of us are the same yet still have somethings are a little different. And to answer your question abou the dizziness, YES- YES it has helped my dizziness, my dizziness was one of the worst intolerable symptoms for me,(that is why my user name on here is dizzyizzy, LOL!) And that was one of the first things I noticed with this drug and then I realized that my head was not hurting anymore and then it dawned on me that I had not had one episode of tachy or adrenaline surge since starting the drug, so yes it has helped with all the autonomic symptoms, and supposedly that is because my brain cannot send out the messages for more adrenaline on this drug, so not only is my BP and HR not reacting to all the adrenaline but the rest of my body is not reacting anymore either b/c it is not making the adrenaline, which may be why I am also feeling so exhausted but I will talk with the doc tomorrow about that. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 2, 2011 Report Share Posted October 2, 2011 I want to jump for joy for you! This is the kind of miracle I want so badly - even if it has to take the form of a pill. I'm too pooped to research right now... would this not be a good drug for people with low BP? Let us know what happens at your Dr's appointment. Will he look for underlying causes you think? Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 2, 2011 Author Report Share Posted October 2, 2011 Firewatcher-I missed putting this in my last posted response to you, so I wanted to let you know that I am very sorry to hear too that you are now suffering from "collateral damage" the kidney failure. Are you being treated for that and since your dysautonomia is not fully responsive to treatment will this issue continue to get worse? I know how scary this must be for you, b/c when they did my echo two months ago and came back with their findings and the doc said high-output heart failure, all I heard was heart failure and I began sobbing uncontrollably. Once I got myself under control and started asking what all that meant, and he began to tell me of the specific damage done to the heart, I was shaken, (to tell the truth, I am still shaken by this and very scared for what this means to me down the road especially with already having the vascular form of EDS) My doc was very good at explaining it all to me but also followed-up by saying that once the damage is done and the wheels have been put in motion there is no turning back. The best that we can hope for now is to try and control the BP and HR so as not damage it any faster, but with the EDS and the amount of damage already done it is causing my heart to have to work extra hard to do its job and so in the long run it will shorten my life span and possibly cause me other more serious complications down the road. However, I will tell you that b/c i had to see a psych doc to determine if this was pseudopheo I have decided to continue with psych treatment, basically taking no meds, just so that I can deal with the dx and what this means for my future. I also know that my kidneys are the next to see damage just b/c the heart is having to compensate for the damage and supposedly this will eventually effect the kidneys and lungs from what I have been told. I am scared by all this, are you too? YOu can PM me if you'd like, but I am interested in how you are handling this, also interested in how they found the damage to the kidneys, or at least what lead them to look at your kidneys. I have been having problems with blood in the urine but figured I would take care of this matter after getting the heart issue settled, now that it is somewhat settled I will go back to my primary doc and we can go back and see why there is blood. However, I have no other symptoms, the blood was found on two urine tests and it was only a small amount, so nothing that my doc or I felt was urgent to deal with, but definetely something to look at in time.You know it is upsetting that so many docs are so negligent when treating people with dysautonomia or POTS, because they feel as though it will not kill us, but as you and I have found out it will shorten your life span and make for other more serious problems. I wish all docs took this dx seriously and wish that drug companies and doctors would do more into research for treating this illness, b/c there is collateral damage besides the altering of your life.My heart and prayers go out to you.Debra Quote Link to comment Share on other sites More sharing options...
issie Posted October 3, 2011 Report Share Posted October 3, 2011 Firewatcher,Like you I have the low bp's mostly with lying down and trying to sleep. I tried Bystolic about 4 years ago. It was one of the first meds tried on me. It was better than the toprol but it lowered my bp too much with trying to lie down and sleep. I'd wake up and have to do exercises to pull my blood pressure up. It wasn't a good fit for me. I have the HyperPOTS too with the brain dysfunction and to date - nothing has worked in the RX line - except Tramadol and Bentyl. I couldn't take the propranalol at night for the same reason and then my bp would really spike at night because of the morning dose wearing off. So, opted to not use it either - although it was good in the am. I figured it be better to have it more of a steady high than such a horrible high spike.I do have a question as to the kidney failure. Did that come before or after the DDVAP? Do you think the med contributed to it?We're all different and what will work for one - with the same symptoms - may not work for another. I think that's one reason the doc's get so frustrated. There's no easy one size fits all - shoe to fit us with.Debra, glad the bystolic is working for you and hope it continues to be your miracle drug. Here's to hoping.Issie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 3, 2011 Report Share Posted October 3, 2011 "I do have a question as to the kidney failure. Did that come before or after the DDVAP? Do you think the med contributed to it?"The kidney failure came before the dDAVP by six years. The decline in my kidney function stabilized once I started the dDAVP. My nephrologist believes that it does somehow tie in to a lifetime of POTS and that the chronic hypovolemia and hypertension probably caused the damage. Hopefully, by stabilizing my blood volume and controlling the hypertension, we can stop the progression...at least that is the plan. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 3, 2011 Report Share Posted October 3, 2011 Izzy - I missed the part about heart damage. I'm sorry, that must be scary. I hope they can find ways to minimize any future damage. I knew this thing was bad, but didn't realize it could do actual damage. Wonder if it's a good idea for POTS people to have regular cardiology check ups? Or is it a case specific thing? I think it's a good idea to keep that psych appointment to help talk this out/deal with all the emotions that come with chronic illness. Firewatcher - how did they determine the kidney damage? Is it definitely related to POTS?I've had blood in my urine for YEARS. Sometimes a little and sometimes A LOT. They have no idea why. I really wish Dr's took all this more seriously. Quote Link to comment Share on other sites More sharing options...
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