all4family

Hi, What is high flow pots? And what is hyperadrenergic pots? All I know is I have orthostatic intolerance. I don't ask many questions, because I travel, and that makes me tired which makes me confused, and I forget things. That is why I come here to learn. I have tried many kinds of exercise before I knew what this was. I tried walking, and running (went real bad), swimming was probably the easiest on me, but still would get buzzing in my head. I was told that I was just out of shape, so would try and get in shape in the name of getting better. It left me on the ground unable to get up more than once. So I was hoping that these special exercises would help. Thank you for that information. I will keep trying them "just in case" they help. But certainly at a slower rate. Suzy

I haven't had any official tests on this, but my legs do have a tendancy to turn blueish, and my stomach, and chest, and if my hand is low it does also. Do they test you for this in an official way? Or is it just based on symptoms? Suzy

Hi, I am also interested in the clotting factors. How was this found in you? I have had many of my D-dimer tests come back high, and for this reason a pulmonar embolism was suspected more than once. Is this associated with pots? I also wanted to say that I know how hard that is to stand up to a doctor who treats you that way. It was shameful of him to do so. If only we could get a glimpse of how they are going to treat us before we go in we could come prepared for their attacks. I just got the bill from an allergist who had treated me so badly. He made $550.00 for lecturing me about how he is a human and can't take that much information. Well then why don't you make a more human salary? And why don't you have human compassion? You are only a human when it works for you because you don't know the answer to my problem. I sure wish I could go back and redo my appointment with him. They seem to get away with this superior way of thinking, and that is a real shame. They have never had to walk a mile in your shoes. (or probably more like 100 feet). They should treat everyone like they would want to be treated. Unfortunatly too many have been programed to think that they are somehow better people. That there education makes them better than you. Instead of being appreciative of there good fortune to have their health, AND an opportunity to get a education, and mecical degree. They are just luckier than others. That's it. I hope you don't let them get you down, and I thank you that you are willing to be a "lab rat" to try and help others with your same condition. That is how treatments or even the cause may be discoverd, and I thank you for doing it. That makes YOU the superior human to HIM. Could you picture him laying there on the bed feeling half dead taking that treatment? He wouldn't do it!!!! He wouldn't have the guts! So sorry for your experience. I hope things go better for you. Suzy

Hi, This is all very interesting to me, because I have had strange hive reactions ever since I have been sick. Reactions to things that no one has reactions to. I just did the QSART test, and on just one of the places where I wore the cup thing I had a bubbly hive rash just the perfect shape of the cup. But I usually get hives all over my body, and can't make any definate connection with a food or anything. Plus I get racing heart with medications, and muscle weakness,and strange swelling that gets blamed on infections, and just a whole bunch of strange things happen to me that are not in the classic realm of allergies. And I am definately sicker when I am on my period. The other thing that intrests me is that when I was pregnant it was found that I have a RH- factor. Which is where the mother of the child has a negative blood type, and the father a positive blood type. If the baby is a positve blood type the mothers body attacks the baby like it is a foreign object. For this I had to take rogham which is like a immuneglobulin thing. And the way that my pots was discovered was the blood test for autoimmune antibodies to the ganglia. And I was told it is a "neurological autoimmune disease". Is there any connection between these allergy type reactions you get, and anything specific, other than your period? I notice I get my hives more when I am tired. I read somewhere that there is a tendancy for people with dysautonomia to have chemical sensitivites. I don't remember where I read this though. This was an interesting subject, thank you for posting it. Suzy

Hi, I just want to say I understand how you feel. I thought that IF I ever got a diagnoses that would be it I would take something or have a surgery, and go on with my life. So I got the diagnoses, and threw myself into "feeling better". I was going to do everything I could to just make it go away. I have a appointment for a EGD, but have to wonder why I am doing it. Then I got the information that they still had to rule cancer out. I went for 5 years being rejected from doctors, so I gave up on them. And I completly understand what you are saying about "now that it seems like there is nothing wrong that will actually kill me". I don't want to have something that will make me feel this bad for the rest of my life, but I don't want to have something that will kill me even worse. I did stop going to doctors, but it was before I had even heard of this disease. It was relieving for me in the sense that I wasn't worried about their oppinions, or the procedures. But in another sense it was stressful because I knew I had something making me very sick, but I didn't know what. I always worried that by the time whatever it was making me sick 'showed itself" it would be too late to do anything. So there are somethings that I think were positive, and some were negative. I still don't have a regular doctor at all. My local ones are the ones that were very unkind to me, and I can't bring myself to find one. I really hope you find a happy balance in your life. I think the hardest thing about having a chronic illness is finding a balance in your life with the medical side, and still living a life. I think someone who has not been chronically sick does not understand the balance that goes into it. They will sometimes say things like "just quit thinking about it all the time and you will feel better". They don't understand how hard it is to "quit thinking" about a body you have to live in 24 hours a day. When feeling good (if you are so lucky) you want to run screaming from the medical establishment, and leave them behind. When exhausted from all they do to you, you want to crawl away and hide from them just for a break. But when at your worse you (probably reluctantly) seek them out in hopes of feeling just better enough to withstand another second. And the worse part with this disease is how much can they really help? A lot of it is withstanding the bad, and just get through until you feel a little better. Take care of yourself, and I hope this problem just finds a way to balance itself out for you. You have enough on your plate to deal with without adding these stresses. Suzy

Hi Jan, On my report that I am sure doesn't have all the values on it, it says the blood pressure response to the valsalva maneuver were normal. then is says the heart rate responses to deep breathing and the valsalva maneuver were normal. This completely shocked me, because I thought if there were going to be any abnormalities it would be on that test. after doing the test I felt like I was blacking out. As I started to come to I looked at the b/p monitor, and it was 76/- which I thought was awful low, but I don't know what is normal on that test. Aparantly that was. If I get copies with more info/numbers on it I will let you know what they were. I thought the test wouldn't be positive, because I felt really well that day, and I didn't even come close to fainting. But mine was positive for orthostatic intolerance. On the tilt test it said my heart rate had exceeded 120 bpm, but didn't stay there. It kind of makes me wonder how high it is when I feel really bad. I have since gotten a heart rate watch, and can tell you it goes pretty high. In line at walmart the other day the lady was doing some kind of a price check, and I kept telling her never mind I didn't want it because I was feeling real faint. I looked at my watch because I am trying to make notes, and it was 168. It was the first time I felt really bad like that, and understood why. I hope this helps you some. Did you get the report from your test? I want the second by second one of mine, just because I am so curious. Was the doctor the one that did the test? Or was it a tech? Mine was done by a tech. I was glad, it made me less nervous, and she was a really nice person. Just me and her in the room. Take care of yourself, and I hope you find all the answers you are looking for. Suzy

HI Suzy!! YES at first I had a hard time getting UP to the 40..then sustaining it. It seemed to finally get up to 40 and it deflected then rather quickly. When he told me he needed a good 10 secs to measure.. I really really tried!! Did your tech.. yell and cheerlead you on?? and ON??? LOL.. Well maybe the fact that you could not even DO the test will tell them something. Let me know ok? Jan I am glad to hear I am not the only one who had a hard time. She actually didn't cheerlead me, I think because I either came close to fainting, or I did faint. I never can tell. My chest hurt, and I ran out of air in 2 seconds. And still only got it to 18. But on my report it said that my blood pressure response and heart rate response were normal. It didn't even mention the fact that I only did it at 18. I guess for this test it is not for testing breathing. The first time I did it and was trying to get it to 40 all the blood rushed to my head, and everything started going black in a circle. Next thing I remember she was trying to get my arms down and telling me to hold real still. Comparing the tilt table to the breathing test the tilt table was easy for me. I also got a rash where the cup thing was strapped to me. The lady said she had never seen anyone react to that. I'm such an odd duck. I'm glad you got your testing done. I hope things go well for you. Take care. Suzy

When my aunt was in a hospital with lung cancer they offered us a room.. It was just a room and bathroom, but it kept us there, and close. There was no charge for this room. I don't know if this is what you mean. It was very nice to have. Kept us all close. Suzy

Did anyone have trouble on the breathing test? I know it was hard, but I couldn't get my number past 20. The lady doing my test said not to go past the 20, because I couldn't. Just wondering. Suzy

Thank you Susan, It is usually when I feel so tired I have to lay down and go to sleep. I was told everyones heart rate and blood pressure go that low when they are sleeping, but when I had a 3 hour stay in the heart hospital that My b/p and heart rate were being monitored the alarm bells on the machine wouldn't quit going off and they had to shut it off. (the alarm bells) They thought I was having congestive heart failure. I was on beta blockers at the time, and they made me feel real sick. I was taken off the beta blockers because of this, but still have the issue. Since I got a heart rate watch whenever I get this real sick tired feeling where I have to lay down, it runs between 30 and 50, with spikes up to 60. But then I have other times like after my squats yesterday it wouldn't come down untill after I had laid down for about an hour. Then it was real low again. Maybe I will start keeping a log, and show my doctor. Thanks so much for your help. Suzy

So would a heart rate running betweem 30 and 50 when you are laying down, and feeling very bad like you can't lift your head off the pillow be too low? Suzy

Thank you all for the helpful suggestions. I can see I was a little too enthusiastic about it. I woke up this morning with what feels like a ear infection, and not feeling well, so I guess I will be waiting a day or two to start. But much slower this time. I might skip the squats because they really make my muscles and joints worse. I guess I thought I would just spring back to my old self when I started these...Oh well. Thanks all for the help. Suzy

Hi Sara, there wasn't a number filled in on any of them. I guess he just figured I would do what I could. I didn't realize how hard it would be, and guess I figured I should push to do as much as I could. At the 1st one I had pain. On the 3rd one I was having building head pressure. By the 6th one I felt like I was loaded, and on the floor! After looking at the paper after I did it it said to stop if you felt pain. Wish I would have read that snippet first. Thank you for your help. Hi Nina, I didn't realize how hard we have to work. That is a lot of work you did to get where you are. You should be so proud of yourself! That is encouraging to me. I definatly need a emotional outlet. I took a yoga class a while ago, and did fairly good in it. I also have a ymca with a pool, and different classes that I used to go to all the time, but quit when I passed out in the gym in front of a huge crowd. Guess just bad memories. Do you faint? And if you do do you tell people you are working out with like your trainer that you do? I want to swim, but am worried I would faint in the pool, and someone just think I'm floating. Is that silly? Anyways. Thank you for the help. Suzy

Hi, I was wondering if anyone could tell me how many times you should repeat the exercises the doctor gives you. I tried 10, and I did fine untill the squatting standing. (which was the first standing one) I made it to six, and flew like superman into the floor. How many did everyone else start with? It had a space for how many times, but it wasn't filled in. Thanks in advance. Suzy

Thanks Maxine, I always wondered how to do that. And thanks for the laugh. I really needed that. How are you feeling? I hope that virus took a hike. Take care. Hugs Suzy

Hi, I am glad you said something on this subject. Because while I have had my fair share of *blunt, cold, and upsetting* doctors there were some real gems along the way. I would be nowhere without my cardiologist who although may have thought I was having anxiety always said it in such a caring way you couldn't not like him. He reffered me to the Mayo clinic when I told him from the bottom of my heart I don't think this is anxiety. He said that you need to go to the Mayo Clinic. If anyone can get to the bottom of rare and unusual things it's them. And then at the Mayo Clinic I only had one out of 7 there that I had a bad experience with. The other 6 regained my faith in the medical system. I even shared with a head neuro some other experiences I had had (only because he was asking me about certain situations) and he was shocked at the way I had been treeted. When I told him in my story "I have to admitt I was BECOMING anxious at this point" He said "I would be too". That felt good. like I was talking to another human being. Then my to my GI doctor I mentioned a idea I had of what might be wrong, and she tested me for it. And even said good idea. She is the one who did the appropriate testing that got my diagnosis. She told me "I believed what you told me." Thank you for reminding us of all the good ones out there. Suzy

Hi Maxine, I am so sorry for the virus you've had. And I am sorry you missed your date for your colonoscopy. I have a EGD no sedation scheduled for 2-17. I'd like to miss it! But know I need it done. I hope you get feeling welll real soon. And I just gotta ask you where did you get your smiley guy????? Its funny! Take care, and get better soon. Suzy

Hi Maxine, Thank you so much for those encouraging words. And thank you for the humor! I would love to kick start there brains! But they are usually sitting on them when I go in! Thank you for the advice on medical records. I have narrowed mine down to a stack small enough to carry! I have carried them through the last 6 or seven visits, and the only time I was asked for something in them was the one time I forgot! wouldn't you know it! But that is good advice. It is so sad that Drs. with such high schooling and training forget common sense. I agree there is too much arogance there. The people going to them are in bad positions, and they should be compassionate. But too often they are not. I remember a doctor who had just got through "convincing" me I probably had colon cancer had a drug salesman come into his office. I was signing out, and the drug salesman said hi Harry( that's not his name. I can't remember it). I was tired and confused, so when he asked me a question I couldn't think of his "doctor" name, and said ok Harry. He puffed up and got really nasty, and said thats Doctor Herman to you! In front of a whole office of people. What kind of arrogance is that?!? You would think, (or even hope)that doctors from Johns Hopkins and such would be so much better. I am sorry you had to go through so many doctors just to try and get answers. But I am so glad that you stood up to them the way you did!!!! You go girl! I'm taking notes. And the funny part is I wouldn't let any doctor treat my children or my mother or my husband that way. (I wouldn't even let the vet treat my dog that way) Why do I let them treat me that way?!? And it isn't making me feel better. It just gives me emotional issues with doctors. Which in turn keeps me from getting what I need. I need to hang out here and I can tell in no time I will be back to my old self, and telling them off in no time. Of course only the really arrogant ones! Yes I have liked every doctor at Mayo. Except the allergist. Even if they thought I was nuts, they didn't say so. And it was the GI from mayo that did the test on the acytelcholine receptors. She said she always believed me. I think she was very pleased also to have been the one to "figure out" this confusing patient. I am so sorry you have cancer in your family. I do to. Yes the cancer word is a scary one. I thought I was crazy when I was happy about the diagnoses. I thought why would I be happy about this. But that is why. I thought that meant it wasn't cancer. I am sorry you had to go through that scare of cancer. But am very glad it was not. I'm so glad you just laugh at the doctors about the gait test. I can't believe they came right out and accused you of faking! I was upset that a doctor had said I walk at a romberg. It makes me feel like something is wrong with my brain. I don't want anything to be wrong. But that doesn't make me feel better. And how do you fake a structural problem?!? You are so right. Thank you for your thoughts and prayers. I have been reading about your struggles, and am praying for you too. You got quit a full plate, and are so courageous in handling it. Take care, and thank you. Thanks so much for the reply, and I hope things are going good for you. Hugs Suzy

Hi Flop, no, I don't have a follow up with him right now. I don't know if he is waiting for my upcoming GI tests. Thank you so much. That is very reassuring about the gait. When I do the close your eyes thing to see if you can balance, I know I fall, so as soon as a start to feel myself going I open my eyes and try to regain my balance, because I don't want to hit the floor. I tried 3 times to close my eyes, and finally told the doctor I couldn't do it. My hips always seem to go in a circle like they are trying to balance me. I feel it, but I have a hard time correcting it. I wonder if that is what is meant by only falls nearby a physician. I wouldn't fall near a physician either. I just don't want to fall period. It hurts. Yes that is very reassuring to me that he said once cancer is ruled out. It's almost like he is expecting it not to be. Thank you for pointing that out. I didn't think of it that way. I just heard the cancer word, and set myself to worrying. I don't have a pcp, (gave them up for my health...just kidding)the only doctors I have right now are the ones at Mayo who are trying to diagnose this. But they are real good with answering calls. Maybe I will just call, and ask some questions. Yes I have gone to the ER once for a fall. I twisted my ankle and thought I broke it. I think I was making an exagerated effort not to walk funny, because the last time I did the walk test the doctor said I walk at a romberg...I didn't look that up. So I was nervous about the way I walk. Thanks for looking that up, and the suggestions help. It is so hard to think things through when you are feeling so much emotion about them. Hi Firewatcher, thanks for that info. I have real bad problems with my eyes. Between dim vision, and blurry vision, and then they turn red all the time, and not just a little red in the whites, fire red everywhere even the skin around them. I agree with you that I need to wait and let them check, but it is just so hard to do. I feel like I have waited 5 years for some answers, and the more they find the more nerve wracking it gets. And you are right with the cancer. If I found out I had it I would most likely want to start improving my overall outcome with nutrition, so that is something I can do now. And I don't even need a diagnoses to do it. That is funny...I never thought of that. the chicken and the egg thing. I can see where there are a lot of conditions that would cause dysautonomia, and that dysautonomia could look like a lot of conditions. I will have to keep that in mind. It will be reassuring. Thanks for the help thinking all this through, Suzy

Hi Cath and EarthMother, it is interesting what we leave out when talking to people,and why. My experience with the abnormal EEG's was also very negative. That is why I came here and asked the question. I always proceed with a great deal of caution when telling anyone about my health care,because when I went through my local medical comunity trying to find out what was wrong they found neat little ways to "punish" me for seeking health care. The abnormal EEG was one of them. Interestingly when I had it done I hadn't fainted all out yet. So it wasn't ordered even for fainting. A doctor (not a neuro) said that due to my symptoms of chest pain, and such, (I think he was reffering to "panick attacks") he was doing a EEG. He said that he had seen patients have seizures that weren't like normal seizures. So doing what the doctors told me at the time without question I did the EEG. And the most interesting part was that I was on xanax, which I was told is used to supress seizures. (I was WAY sicker on the drugs they gave me then before I had taken nothing.) When I did the EEG I was concerned it would come out positive, and was actually hoping the xanax would help supress it, because that is how I understood it should work. I asked if I should stop taking the xanax, and they said no take it as scheduled. So I did. I was taking it every 4 hours, because it was being pushed on me to take a larger dose, and if I took that dose less frequently it would make me even sicker. (trust me when I tell you they went to large extremes to make me take these drugs even though I told them they were making me sick. Even threatening me.) My scheduled time to take it was one hour before the test. Which I was hoping would help me fall asleep like they wanted me too. I did the test, and the doctor (still not the neuro mind you) called me on the phone and told me I was having seizures. I was in a public place, and had to sit on the ground while this doctor told me about the drugs I would need to take, and such, and such, and such. Then he asked me which pharmacy I use. I told him, and hung up and started crying (still in public). I found a quiet place to sit, and called my mom. After blubbering all this to her she said I wouldn't take the medicine untill I talked to a neurologist (thanks mom!). So I did not go pick the medicine up, and after I hadn't gotten it in a couple of days the docotor called me, and when I said I want to talk to a neuro dr first before I start taking such a serious medication, he got angry and said I told you to take it. You are going to talk to a neurologist. Then he started freaking out saying I shouldn't drive. In one week I recieved a letter from mvd that my drivers license had been medically suspended. It took me a few months to get it back after seeing a neurologist. He concluded that it wasn't seizures I was experiencing. And the most interesting part of all this is for the first test I had what was called rare sharp activity over the left temporal lobe. I was on xanax, and was told it is used as an antiepileptic. I asked if it could have caused this, and was told no. It would cause slowing. not sharp activity. The second test I had been off the xanax for 3 years. It had slow wave activity over left temporal lobe. So thank you for sharing this. I didn't push for the second EEG. But find the info on it interesting. Just happy that they didn't feel I was having seizures also. Suzy

Hi Pat57, Thank you for finding that for me. It is very caring of all of you to help me through this. I wonder what I did before?! Thanks a lot. Suzy

Hi guys, Thank you so much. The test they did was part of a paraneoplastic screen. Paraneoplastic Antibodies are antibodies to cancer cells. That much was easy for me to learn about. I had to look long and hard to find the part where it relates to pots. But it does relate to pots. It just more often relates to cancer. I thought because they hadn't mentioned it it was not a consideration, and I didn't ask. Probably didn't really want to know. Paraneoplastic syndrome (this is just what I have learned, so might not all be right) is like autoimmune dysautonomia in the sense of the symptoms it produces. But the reason for the symptoms is cancer. The antibodies are to cancer. There is a link to pots without cancer. But first cancer has to be ruled out. Thank you Jan. That does help. It's bad enough to feel this sick without someone thinking I am doing to myself. Like I really want to miss out on any more of my life. When I did a search engine on it I came up with a bunch of stuff for phsyciatry. He didn't say anything on his report about phsyciatry, but it upset me none the less. I have been trying to keep going 5 years with that "gait", and it is very difficult for me to walk, or do anything. Once I tried to run with a kite, and my running was so messed up my legs were wobbling everywhere, and my husband laughed (lovingly) at me. I thought I was going to fall. I have fallen several times, and hurt myself, and it is not phsyciatric. I quit going anywhere because I can't walk well, and my muscles hurt, and my balance is always off to where I feel like I am going to fall. I tried telling Drs. about it before, and was told everything from you can't have that many things wrong with you so why do you keep coming here, to you just are out of shape you need to get more exercise. So I gave up. I gave up on it all. I decided I would rather just stay where I could manage with my symptoms by myself then keep thinking I am somehow attention seeking, or just out of shape. I truly haven't been honest with anyone how sick I have been, because when I was I was treated like a phyciatric patient. I am afraid to say I can't go anywhere because of this illness, or it will be said I have agrophobia. You see where I am coming from? Julie, Thank you. I wish they would of told me the cancer was a concideration while I was there. Then I could have asked questions instead of having my head spin with all these what-ifs. Do you know what the rare type of cancer that can pose as dysautonomia is? Could it be the paraneoplastic syndrome I was talking about? The blood test I had positive is positive more in cancer, than in pots. But it can be positive in just pots. But it sounds like the level that it is at which was .48, and anything over .02 is positive. So he said it was notably high. I'm rambling in confusion aren't I. Anyways thank you for your support. Your right a little hand holding would have been nice. hugs and thanks Suzy

Hi Firewatcher, Thank you so much. I am just scared. Scared of the tests, scared of cancer,scared of being crazy! I really wanted it to be done. You are so right I don't fit into a neat little bundle. Thanks for letting me vent here. I promise I won't put anything blunt in anyones head! ahahahaha (how about sharp? just kidding) Thanks for letting me vent. I do need to. I don't know which to do run screaming in terror, or fight em off. (with a blunt object maybe! ahahaha) I do realize it is the idea of dying from cancer, or living with this pain that is what I am really afraid of or mad at. I just can't yell at those things. Thanks so much. Suzy

Hi, I got my overview, and information of my TTT in the mail, and was not very happy with what it said. It spoke about my TTT, and said it was positive, but under impression/plan it said some my symptoms could not be explained by autonomic system disorder. In addition there is some functionality on examination. Whatever that means. Then it goes on to say The acetylcholine receptor ganglionic antibodies are hard to ignore, however. With such antibodies, the first task will be to exclude an underlying malignancy. As such, she would need radiographic studies which should include CT scans...etc. etc. etc. Then it goes on to say once malignancy is excluded the possibility of an immune-mediated autonomic disorder will need to be considered. The antibody is quite high as mentioned and cannot be ignored. etc. etc. etc. I thought that they weren't worried about cancer. Then I read Gait is notable for an astasia-abasia gait pattern. So I looked it up. It has to do with sonomitization disorder which is a phsyciatric disorder where you make yourself sick!!!!! So am I making myself have antibodies too? I don't know if that is what it was noted for, but I won't go down that road again!!! Just when I thought I was done with this and knew what the problems were. Tooo depressing. Thanks so much for listening. Suzy

I have no clue either, but when I am my sickest I have rusty very dark brown urine. I have also passed a kidney stone. My creatinine was low on one, and high on another, but I really don't know what the different ones were. I don't know what different creatinine tests they have, but I had a few on one page. I've also had high liver enzymes...but no one knows why. My dad who I believe had pots as he used to have low b/p and pass out, had glomernymphritis which is a kidney disease. And I have no idea if I spelled that right. I live at a high altitude (5000 ft) I didn't know that could cause a problem. I'd move if it would help! Oh...and it's a really good thing you said something so the doctor could call you back and inform you that your creatinine was high and your GFR was low! but don't worry! if you just restrict your fluid intake it will fix your dehydration!!!!! Maybe if we live in opposite world like spongebob!!!!! I really wish I could help you, but I haven't been able to figure out the thinking of doctors yet! Good luck. I hope you find good answers. Better than the doctor gave you anyways. No wonder you had a headache! Suzy