lynnie22

Thanks for the hugs, bigskyfam. And lulu soccer, what a great idea! It really helped for this part of my night.

I just got the second half (strange of my doctor) of my flu shot on Tuesday and within a few hours developed a cough. Today I woke up feeling like I have the flu and my fever has been escalating, and with it, my heart rate. It is now almost impossible to stand -- HR is climbing to 150, sitting is 110. I was told not to take a betablocker in evening because my bp goes down too much. I feel horrible in all senses. I don't know what to do -- bottom out my bp or go to an ER (not a great choice) where little is known about POTS or simply endure the fast HR. Any ideas? Please?

When I wake up, my blood pressure is usually 90/60 or so. So I drink two glasses of water with salt so I can take 10 mg of inderol. During the day my blood pressure is normal, 110-130/70-80. But around 4pm or so (depending on stress level, big factor), it starts going up and can reach 180/120. If I take more inderol which I was doing, in about an hour it begins to go down, but within three hours it plummets to lows of 65/47. I just came back from Mayo hoping they could help me with this problem. They could not. They suggested more salt and water and 5 mg of inderol twice more daily but it really bottoms my bp out. So I am trying to take only the AM dose and ignore my spike in bp which they said was okay to do, but of course then my HR goes up at night and the spike is scary. Has anyone else experienced something similar and found a solution? Thanks!

Thanks Jackie for bringing up this topic! I have exactly the same heart rates as you in all the positions. I have nothing much to add -- inderol in that low dosage which I was taking affected my HR to the same extent. I now have to lower the dosage or eliminate it after the AM dose because my BP after a brief soaring for two hours, plummets to the 60/40 range. Boy does that feel lousy! I am really glad the biofeedback has helped you with circulation, and would love to hear more about these herbs and teas you are trying. Sounds interesting. The only thing Mayo recently recommended to me was exercise, so we will see. They didn't recommend mestinon curiously.

That sounds helpful, Angel. We all need adrenal support I think because most of us have out of whack sympathetic nervous systems and stress hormones. The biggest problem for me with that, EXPENSE. I do believe it is very valid though. Rachel, I don't know if you'll get back to this, but I just wanted to say I hope the more holistic approach is helping your son. I know it is a shocker that Mayo really seems limited, at least in my case. You would think they would do a vitamin level tests. When I asked the neuro consult why he wasn't doing more tests, he said that he was only a consult. Do keep us informed about him.

I want to add that my experience wasn't bad, just inconclusive and limited -- and not with the answers I hoped to get. I really like the main doctor, as said, who tried to look at me as a whole person, and thus my osteoporosis and thyroid issues came under scrutiny along with possible areas that he felt, upon reading of my notes and examining me, warranted further studies. If anyone ordered tests, he did. The problem was with the POTS workup. There wasn't much of one at all And believe me Katy, my goals and concerns were on a sheet, enumerated over and over again to each consult. I am pretty forthright. I asked the neurologist if he were going to do further tests to address my concerns. He did not. I was surprised at this and voiced this. In general, the consults came in after their fellow or other doctor under them interviewed me. The consults did not stay long. That was the tricky part. My questions, my concerns remain mainly unanswered. I got to voice them to the first one, tried to voice them to the consults. There is a belief that if I can get my blood pressure up in the AM, it may go down in the PM. Of course, getting it higher in the AM may be the challenge, and the effect of anxiety on its rise later is a factor, but then there are the adrenal surges I know I am getting. I feel comfortable addressing my unanswered questions to the main doctor once I hear from him, and hope to get some answers. I asked him already the best way to reach him, which isn't easy. I AM in poor condition, unable to exercise regularly and believe that they are right in this being a PART of my worsening condition. So Rachel I am not in good shape, and the main doctor is going to send me, he said, an exercise program, which I eagerly await. But I agree with you about a metabolic factor. Naturopathy isn't covered here either. I believe they could have tried to look deeper into my problems, tried to find the cause, the type...I don't know. I will follow what they said, but there are parts of the plan which continue what I do now which isn't working. So I will follow up with questions which I hope will be answered. Sorry for your experience, MedicGirl. I hope you've been able to find some help since. I hope we all find help, and can share it as we get it.

I'm not sure how to write about my trip without going against the rules here, but I will try. I had a main doctor, a cardiologist who I saw three years ago who orchestrated my consults, which included a neurologist. Unfortunately, the neurologist saw me very briefly, did not do additional tests and my major advise from this trip was to exercise. I liked my cardiologist very much then and now, but the answers I had before I went are the same ones I left with. There were new areas of focus, non POTS related, like osteoporosis and arthritis, need for cancer screenings, etc. But I didn't get real answers, although there is always hope that when the doctor sends me a follow up letter, it will contain more. I was hoping to learn what type of POTS I have, and what I can do to better control my symptoms, especially the low blood pressure in AM, labile BP in PM, tachycardia upon standing all the time, anxiety and exhaustion. There was no real answer for the low BP in AM except what I currently do which hasn't worked very well (salt). A good anti anxiety medication (to be found) was recommended for anxiety, although one of the few tests done was a lying down and walking stress hormone comparison test which showed a huge disparity in the stress hormones, a great increase upon standing. The main suggestion offered was exercise for all the problems. I am hoping that building up my leg strength will make the huge improvements they said. I was surprised that more was not done, after my long trip and difficult problems. It seems that it is all up to me. Any suggestions/thoughts?

I am very upset -- I'm sure I am overreacting -- but this trip to Mayo in simply trying to get it together with scheduling has been a nightmare. My day starts at 7 AM, and I have to race from one test to another to a doctor to a test where you can't eat for hours without anytime in any case to eat. The next day I am supposedly attached to a blood pressure cuff while meeting with two of my consults.....Then hours and hours free every other day. I feel like it is too much. I am anxious about going it is true. So this is purely a vent, because there's nothing I can do about it except not go. But I am not going to go through a day without eating or taking medication. I will call them tomorrow once more.

Thank you for posting! Fascinating...

I am planning on going to Mayo in a few days. It will be done through the cardiologist I saw there three years ago. (I have written too many posts about this visit to be.) What I wanted to know, if any of you have the answer, is since I am over 50, I will be denied the usual POTS clinic access, but am set up to meet with a neurologist in mid stay. Will he be offering the full testing? Does anyone know why they will not see anyone over 50 in their clinic? It's disturbing to us older folk.

I am going to Mayo in a few days. Someone here recommended a PT there for POTS which I think is a really good idea. But I can't find the post or info or person who recommended it. PLEASE, if you are out there, could you give me that name again? Thanks!!

I was horrified to read all this. But he is just one doctor, an unethical one at that, and I would have him reported to the board. If you did not sign anything giving permission to release your records to other doctors, then he cannot, at least here, legally release any of his 'findings' to other doctors. I wouldn't worry about school. This should not affect it. You have enough substantial findings from your other doctors, it seems to be, but if he remains as intrusive, get a lawyer to write a very strong letter. Many of us have come across doctors who say it's 'psychological' and then we hopefully find enough support to discredit that doctor. I hope he gets discredited soon -- quack sounds like a good word, yes.

I'm sorry about your daughter, MommaBear. I hope she begins to get better. What road to recovery did Dr. Fischer mean? I don't know about the Dr. Bell book but it sounds interesting. I imagine, at least my opinion, that cause can be important, if it comes up at least. It is frustrating when everything is 'normal' and it isn't that at all. Are they doing anything for her migraines? I imagine that even a viral cause can suggest immunity building. A lot of people on this site are doing many alternative healing and vitamin or diet approaches that seem to help. Not me as yet. Anyway, I was at Mayo three years ago and it sure is cold. I booked at the Doubletree because of its closeness but boy is it expensive! It is probably too late to find anything else but I was worried about the money. Don't have it, once I thought about it. I have some points, but I don't think enough for my hotel. Using it for the plane though. Jackie, it sounds like you've had quite a lot of experience at the airports! I'm definitely going for the wheelchair.

Hi. Katy, that's a really good suggestion about the wheelchair -- I totally didn't think of it. I'm going to try to carry my bag, however, not carry perse, maybe the wheelchair attendant can also wheel the bag? --the standing at the baggage claim is really hard for me. Good to hear from a up all night comrade. I will check out your blog, Jackie. Thanks! I did keep up with it when you went to Dallas. How is that working? I will definitely read about the sweat test. I can't imagine not passing out with low bp at that hour and no fluids. I did call the main doctor's assistant today. It sounds like he's been quite busy. I'm a big worrier. Obviously. Wasn't always. I'm waiting to get over a bug I've had to have the flu shot before I go....will be on the way to the plane, it looks like. I also made the mistake of booking an expensive hotel, and right now, I don't have the money. Where do people stay that's affordable and close to the clinic? I am going by myself, which makes it harder.

Sometimes the support I get from this group keeps me sane. So thank you all. My health and symptoms have taken a turn down in the last few months and so I am returning to Mayo after three years. I am scared I won't be able to handle the trip there (hardly able to function), won't be able to do the tests that they have ordered for 7 AM everyday (I'm one of those up all night people, very hard to get out of bed in AM), am totally in the dark about what they're going to do otherwise because it's being handled through a cardiologist there (two tests ordered so far) and have these debilitating symptoms lately where I shake all day, and can hardly stand for long. If the doctor here hadn't told me he can't help me, I wouldn't even attempt it, but I'm desperate. I have two torn rotator cuffs and cannot carry bags at all. So that is an additional conundrum about managing. I was fine until about a year ago when things started getting very out of control and now EVERYTHING affects my blood pressure and heart rate. I take a different amount of beta blocker everyday, decided by me -- hate that -- and I know it's not good for me -- but haven't yet been given a treatment plan here for that because my autonomic functions vary so much. Does anyone else have any suggestions for evening out wide ranges in blood pressure? I posted before on this once and thought I'd ask again. But mainly I'm really concerned about getting to Mayo and getting through Mayo and HOPE they schedule the right tests to help me. I won't be seeing a neurologist (first time) until Wednesday. Monday and Tuesday are set up for me to see cardiologist and have two tests including the sweat test, never had, early. They never looked into WHY I have POTS, or what kind I have, which seem important right now. Anyway, am anxious about all of this.

As everyone has said, anything above 90/60 is considered 'normal'. Mine was 90/60 before POTS and I felt fine, but now it goes as low as 70/50, and I feel horrible, and also very high. It drives me crazy. Is the 104/70 when you are sitting or standing? For many of us, it dips when you stand. Also things are very individual, so what feels okay to one person doesn't to another. As far as stores, I find them exhausting and dizzy making. I can't handle being in a store for long, especially if I were to look at shelves. A lot of us have those problems I've seen.

Hi, I just wanted to say that many of the symptoms you are experiencing are ones I commonly experience when my blood pressure is low. 90/60 was my blood pressure most of my life but with a beta blocker, it can fall way lower and then I feel dizzy, especially if I have been bending and get up, foggy brained, lightheaded. My eyes also bother me but I'm not sure what that is a symptom of, it may be the POTS itself. You may need to retest your blood pressure and see if the atenolol is lowering it, very possible.

Thanks Rachel. Yes, I will bring my test results since. I am writing the cardiologist I am seeing (have sent him an email which he hasn't responded to about other concerns) to address other issues. I am also concerned about why.

Hi KJay, I am going alone. I hope I get there. I've been pretty sick for the past six weeks with some infection that isn't getting better. Anyway, I know I'm sounding like a big kvetch, I'm just so frustrated. The neurologist is Dr. Low. I have never met any of them. I'm glad you've had good experiences. I had a good one the one time, just not enough info on my condition or enough of a plan going forward. I probably should have gone back long before this.

Hi KJay, I hope so. I a not being seen at the POTS clinic. I'm too old for the clinic itself, ad no appts available. They squeezed me in to see a neurologist. The last time I went I was impressed for sure but alot wasn't addressed as far as endo problems at least. Because I'm not being seen by the clinic but have a consult only with the neuro later in the week, I'm alittle concerned that there won't be time to really get to the bottom of this. I'm sure they will try, just concerned. I've been feeling so badly that I don't know if I'll be able to make that walk to the place where they have the tests, let alone get through them. Lately getting out of bed and up before late morning seems to be very difficult. Everything is at 7AM.

I have my second appointment at Mayo in Rochester in three weeks, after three years. My first appointment I was luckily diagnosed with POTS although the initial protocol was exercise and a beta blocker. My symptoms got much worse over the last year which is the reason for my return. I saw a cardiologist the first time who I'm returning to. He has also referred me to one of their neurologists, mid week. So far they have only set me up for the standard tilt table test and the sweat test, as well as I'm sure blood tests and some cardiology tests. My schedule so far is very empty. I want to know if possible why I have POTS and what type and some direction. Rochester is a long way and I'm in hardly any shape to get there, but there is truly no one to see here. I want to know if I should try to speak to the neuro there before I even meet him -- and what kind of tests I should be asking for, what I should want to know. Or just hope that he does the necessary testing. The first time I would never have been diagnosed at all if the cardiologist didn't recognize my symptoms as POTS and order the tilt table test. But I never learned the details of my autonomic dysfunction. I have been tested in NYC where I live 8 months ago and hope that Medicare will pay again for the tilt table and blood tests. No course of treatment has been pursued here, so I am feeling pretty desperate to get some answers. Any suggestions on how to proceed? -- whether to contact the doctor before I go -- if I should be armed with specific questions and requests. I'm feeling pretty desperate to get some help. I did write an email to the cardiologist to tell him of my concerns and asked him if I should stay one week (only scheduled for three mornings so far--maybe they are waiting until they talk to me, I assume) and other things. I haven't heard from him yet. I welcome any suggestions. Thanks!!

Thanks for all your support. It does help to hear that I'm not alone in hitting so many closed doors, but doctors who specialize in POTS giving up? But your stories reflect this too.....I'm glad you've found some answers. If I didn't have so many other problems, maybe I'd feel less hopeless. It's like they have stockpiled on top of one another, but the POTS just keeps getting worse. As far as as being tested for underlying causes, Katy, my PCP knows nothing about my condition, and doesn't test for anything. I've seen him for years, and know I have to find other doctors. I will get someone to test me for all the possibilities. I am hoping to make it to Mayo and am hoping that Mayo will get past the first base this time. I don't know. I met with a cardiologist recommended to me about a month ago who told me he could get control of 90% of my issues. I had such hope! He's a big shot, and said things that made sense, but is so busy that he doesn't even get back to me -- and the truth is, he's not a POTS expert, although he knows about it, unlike most of the doctors I have seen. Anyway, the proof of his help will come when he actually returns my phone calls or sees me again....It's just so discouraging -- as you all know! Every spare moment at this point is spent at a doctor, with little to show for it, at least as yet. But thanks for encouraging me.

I hope you don't mind my venting -- but when you've been to dozens of doctors who do nothing and even the POTS specialist says he can't do anything as you continue to get worse, it's pretty discouraging! I saw him a few days ago, and he kind of dismissed me with 'sorry'. Because my blood pressure is labile, and goes from weeks of very low to a week of very high, the specialist said there's nothing he can give me to help me. I am on a continually changing dose of propanalol, which, because of my currently very low blood pressure is so little that it is not controlling the tachycardia. I am set up to return to Mayo in a month (it's been three years) -- and HOPE they can offer something. My first visit three years ago yielded a diagnosis but not a search for a cause and a time limited treatment that unfortunately didn't work. I have been to so many doctors in NYC since, including three specialists, and no one has so far offered any help. I know I sound so negative, and I apologize. I also know it sounds so unbelievable but it's what's going on. I'm just so bummed. And then I have fluctuating oxygen saturation levels, going quite low at times because of a shunt which may interfere with my flying in a plane -- to get to Mayo. Anyway, I'm looking for hope I guess. I have read many, many posts here and it seems amazing to me that no one has ever looked for the cause of my POTS nor really tried a treatment. I am hoping that Mayo this time will investigate it. I didn't see a neurologist last time but am scheduled to see one as part of my week there this time. But I live in NYC and you would think there would be someone who could help. Anyway, I have a lot wrong right now, and keep on trucking, hoping that someone can help me feel better. But it's seeming rather bleak. Thanks for listening.

Well I didn't know about the nutmeg to be avoided! Good to know. Does the COQ10 lower the blood pressure though, Katy? Isn't that strange that the supplements that calm the heart rate can lower the blood pressure, like magnesium. For me, I am experimenting with different foods to see why my heart rate has recently become so elevated -- sitting too. Definitely sugar, a no brainer I think. Coffee. The apple cider vinegar/honey mix sounds good. I will try it. I didn't know about cayenne pepper. Thanks.

I just wanted to say, clarec, that prozac in a high dose just caused mania in a couple of people I know. I think that prozac has much more of a 'kick' than the others and that other SSRIs are less likely to do that, but you have to start and maybe stay small. I was just prescribed celexa, have had mixed feelings about taking it, but believe that taking a small dose may help. I agree about the benzos! when I was at Mayo three years ago, the sleep clinic people believed that benzos which I take and am trying to stop, not easy could be responsible for part of my dysautonomia.