Joann

I am so sorry you are going through this. I wish I had an answer for you. I have had some flares too, and alwaysafraid I will be back to my worst. I am getting over the flu and during the flu I had no bad POTS symptoms but the day my fever went down, it flared awful. One thing I think that may help us a little is recognizing the symptoms and maybe learning some little things that help? Rest, not to push yourself to much, but its that fine line of not pushing but still pushing? For me, if I have a flare up, I know I have to take it easy, but I can't lay down for too long of periods of time or it will be worse.Sorry for my ramble. I hope you are back on track soon. And hopefully someone with more experience can offer you some advice.

CMReber, That is some wonderful news. What lifestyle changes did you make? and did you start on that amount of metroprol or did you build up to that amount? Did you follow an exercise program with it? Are you able to walk up and down stairs, that is one thing I cannot do and really would like to be able to - to access my entire house (I live in a bungalow and haven't been able to get to my laundry room (some may think that is a bonus) my finished basement or my upstairs and storage area. Plus, I never realized how many places involve stairs or serious inclines. Obviously, I am happy that most days I can get up and do things in my house, Thanks again for some good news. To know there is hope to at least be normal is great. I too, was very active before this and this will sound terrible, but when I see people that so obviously abuse there bodies with food, alcohol, drugs, laziness and they are doing the things I want to do, I get so mad. I mean we know life isn't fair, but I want to shake them and tell them to appreciate what they have! Thanks again for the hope.

Bebe127, Maybe your husband could set up a reclining spot in your school room for you? Having a little change is always nice.

With this syndrome I think we all have experienced this reaction from doctors and people as a whole. I saw a very nice neurologist early who never even gave a thought to dysautonomia, she just wanted to look at my neck and told me to go to endocrinologist to rule out a pheo tumor and cardiologist for bp issues. At the time, I didn't know that neurologists often treat this symptom. Just keep searching, its all we can do. I know its exhausting, sometimes I take a small break because I get so upset.

Arizonia, I am on Doxazosin (an alpha) 2mg in a.m. and Metoprolol SuccER, 1/2 tab of 25 mg. a.m. 1/2 in p.m. In the beginning I tried whole tab in p.m., had side effects, then this past fall new doc had me add 1/2 in a.m. One doctor suggested switching doxazosin with clonidine, I haven't yet. I am scared of switching. Dr. Shields wanted me to just try and get off doxazosin and not replace with anything. I can't see getting off the meds helping me. I am extremely sensitive to the metoprolol, if I am late I know it. I wonder if its like the clonidine was for you. My bp and heart rate are good when suspine, except when I have a bad flare, then the bp and heart rate go down, but are higher than normal. My bp is more concerning than the heart rate. Dr. Shields said he would like to see the tilt test redone without the bps because he said it was a really odd reading and wondered if they were contributing to it. He said it showed heart rhythm irrirregularity but her wasn't sure what they were. When I had the test done, I thought it wasn't going to show anything, because I did not have any bad flares. It showed my bp and heart rate going up but during the 45 minutes it went up and down back and forth. I am going to call Dr. Grubb again, they wouldn't put me on the wait list until I fax my records and I didn't have them at the time. Now I have too many records!LOL. So do you think, you are getting better? I don't mean that you are cured, but that with medication you will /are better?

Arizona Girl, I am still going thru testing, but my symptoms seem to indicate hyper pots. I had several poor man tilt tests and I had a tilt test also.At my worst I had labs done that showed increased noeprhine (sp?). They thought I had a pheo, but that has been about 99% been ruled out. My tilt test was done while on medication and I was told it showed POTS. I just went to the Cleveland Clinic and they want to re-do the tilt test and do several other tests. Dr. Shields said the tilt test showed some irregularities and he would like me to do them off my meds. BUT... I cannot go off them. If I even am late for a dose I begin to feel very bad and my bp goes crazy. He said " you may need to be uncomfortable for the test" but this is not uncomfortable, I can't even get up to get to the doctors, I get near hypertensive crisis without them, so not sure what we will do for the tests. I want them to let me know if this is low flow, or chemical or ? He has done a bunch of lab tests and nothing seems to be coming back wrong, one kidney doctor there just showed a trace amount of blood in urine, so that probably is nothing. I seem to be disgustingly healthy on paper, but totally not that in real life! 17 months of getting someone to help me figure this out. My bp meds have helped me get out of bed and some days I am able to do SOME normal things. Got hit with the flu last week and the day I started to feel better, my POTS flared worse than it has in months very scary. So I am trying to not do much and recover fully. Prior to the flu, I had been doing ok, avoiding my many things I know I can't do, so this flare reminded me of how incredibly scary and awful the bad episodes are. I keep hoping they won't happen again, but they do. Hyper Pots8,- I am 45 also and this happened at 44. The woman who told me this had dealt with such health problems for so long, I don't think she realizes how devastating that thought was to me. She started out with what she thought was pots but she now has Not sure pure autonomic failure? I know its a lot worse than just POTS. I don't know if I can say mine was immediate or over time. The first day it happened four times, then it happened over the weeks and then within 3-4 months it was debilitating. In seven months I was in hypertensive crisis and that was the first time I had anyone start to help me. I have found no doctors in my area that can help and I have searched this site for lists. Dr. Grubb is only an hour or so away but the wait list is a year right now.

Sisblostg, My daughter asked me in the beginning if this would happen to her, at the time I thought I had a cardiac issue and told her no. I am still actively trying to find my cause of POTS for me and for her. As for her friends, in the beginning my daughter didn't want me to tell any of her friends. I think at that age any thing different is embarrassing. But now they are aware that I have health problems. We don't go in to details, but they just know I can't do certain things and they are ok with it. So many people around my home seem to have health problems, one mom has cancer, a dad has congestive heart failure, etc... Kids deal with it, but try not to think about it too. As for the kids around the house, I have always been the one to watch everyone's kids. I still get calls asking me to get their kids after school. I was at the Cleveland Clinic and two moms text/called to ask me if I could get their kids home from school! Hello, I am in a different state. The parents know I am having health problems but figure that if I am not picking up my daughter, my parents are and that they can get their kids. Now that gets me a little mad. But I prefer to have the kids at our house, where I know they are safe and they have their freedom but have rules.Too many parents do not watch their kids or let them do things that I feel are unacceptable. I trust my daughter but there are too many crazies in the world. So many of her friends are left home alone for long long periods of time. I was told for years by many parents that they owed me big time and if I ever needed a favor, well so far none have them have offered to help at all. My mom said I should ask, but I won't unless I get really bad. This health problem has made me change some of my parenting but I will do whatever I can my way.

I am on some other sites with Potsies and I asked one person who is very experienced in this area (she is an advocate and involved in many dysautonomia sites), if she was aware of any of hyper pots finding treatment that made them better, or at least able to live their life relatively normal. She said no, she did not know of one hyper pots person like that. That hyper pots patients are not like other pots patients. She did not say it but inferred that we just progressively get worse. Is this true? Is there any hyper pots out there that still manage to work, drive, live a somewhat normal life? I am in my forties, will my life never get better? I do not want to believe this, but on that one site not one person knew of a person that was doing well. If you are doing better or know of someone please let me know. Thanks

When all of "this" started, I thought I was having angina. Pressure/tightness at sternum, left side of neck, face and leg pain. Often after activity and it continually got worse, and would then stay even after laying down. I would be told my heart was fine. It eventually got so bad my bp just sky rocketed. It continues to be my worse problem and still not addressed. What did they suggest you do, Emma? Imapumkin, I understand how awful it feels and wish I had answers for you and me and everyone else.

I don't get dizzy. I have a hyper form of pots, but the same result is I have to do a lot of parenting from the couch or the rocking chair. I have a twelve year old and this began two days before her 11th birthday. We have always been extremely close and we were both very involved in multiple things. I am trying to have her continue to be involved in things, but sometimes it is difficult when I am not sure what I can commit too (driving, helping etc). I encourage her to join all the school things and I made all but one basketball game, in the fall. I am lucky that my parents live close by and can pick her up from school when I am bad (like today). My husband has had to take over many of the things I did. She is in travel baseball which is a lot of time and commitment and travel. Last year I missed the first tournament and the last one, I found myself lying in a hotel room, hoping my bp would go down and I wouldn't have to go to ER. I am learning to be a little more realistic at what I should do if I want to make thru a game. We have had to do more movie nights, t.v., crafts and I have her invite her friends over. I try not to have her on her ipad or ipod too much. On good days, I try and take her places that are special but not too strenuous. We have always gone camping for vacation and last year my husband took my daughter up without me, that was so tough. My parents did take me up for a couple days, but it was horrible, I did it for her, but this year we are renting a house so hopefully it will be easier. But if I had my way I would have picked another vacation spot. I have always been the softie in the house and I am trying not to give in too much to her poor me attitude when we can't do things. I just tell her " life isn't fair" and she has it so much better than most. In fact, and I bet a lot of you are like this too, I ask her how many of her friends parents do as much with and for them as I do.Being present for our kids in the end is more important than what we are doing. Sometimes we forget that. This has made me cut the apron strings a little and forced her to be a little more independent. The one thing I do try to do is to not hide what is happening, but also not scare her when I have my episodes. Sorry probably more than you wanted to know.

I haven't seen Dr. Jaeger yet, I have an appointment with him in April also, so I am interested in an answer to your question. I did see Dr. Shields this week, he is neurologist that is an associate of Dr. J. and he is the one who wants me to have a consult with him. I am scheduled for an entire day of many of the tests you already have had. Made the trip to Cleveland and was hoping I would get the tests while I was there, but they are so booked, I will be traveling back. They were only able to do some of the lab work. I have had problems for 16 months, the wait for each specialist is so long, that who knows when I will finally get some actual answers. I was hoping Dr. Shields would have the answers, but now I am hoping Dr. J. will! My past doctors have told me they feel I have a form of POTS. Dr. S. says he is not sure, looks to be something autonomic, but maybe not POTS. So, that seems like a step backwards. I have heard really good things about Dr. J. So I hope he helps you and me! Wish you the best, sorry I don't have much to tell you, except I was really impressed with the Cleveland Clinic.

Sorry to hear about the hassle. Is nothing ever easy? I hope it will be cleared up quickly and you never have to do this again. This is just a suggestion,I have been in the process of organizing all of my medical records and it was a daunting task. I even took pictures of all of the mounds of paper on my floor. Every time I began I became overwhelmed. Finally, I started out in small parts. That made it more manageable. I know you are under a time constraint, but maybe just do one thing for a certain time period and maybe it will make it a little more easier. By the way, after I had most of it organized and brought this to appointments, only one doctor asked to see it! Urgh, but now it is done and I shouldn't have to do it ever again.

Altruism, I totally understand all of your feelings. I have had them and some days still do. I am a type "a" person also and my "new" good days are now what my what my "old normal" bad day would be. Just having a baby, your hormones are all over and I am sure that is making everything so much worse. Plus, and I say this as encouragement, you are in the early days. This just started in November? I really think that you will find that medication that will help you and as your hormones settle and you find some doctor to help you you will start to feel better. I am on two medications and it took a while form them to work. I didn't think they were doing much, it took months but, I couldn't get up to go to the bathroom and now on most days I can make all the meals, do the housework, take my daugher to her activities and do some shopping. I am still working to find the right treatment, doctor to continue to get better. I still get down... but I have less days where I can't get up and I have to remember that. Having someone to talk to is important. I have found this site so helpul and I have made some friends thru this site and another, that have become close where we email and phone each other. It really helps. Please PM me if you would like, or one of the others here. We understand and want to help.

Question - those that have gotten better. Are they hypo or hyper or? I tend to have hyper and am wondering if any get better? Thanks.

If you don't mind answering, how long was he ill, how long before this helped. And how ill was he, what type if you know? Sorry for all the questions. But we are all so different. Many things on this site do not apply to me, as to I do not have low blood pressure. Unless I am on too much blood pressure meds., so alot of th info (like salt loading) does not apply to me. I am so looking for ideas. I usually have to remind the doctors that I have high blood pressure.

Altruism, Some days I can't push thru. I have high bp and on some days if I try to push thru it will just continue to climb and the pain involved will tell me, if I continue I will end up in hospital. However, other days, I may feel terrible and have high bp, but if I get up and can walk slowly, it sometimes does get a little better. Can't tell you why this is, and can't say it is the same for anyone else. Everyone is so different. I have some things I just cannot do no matter what. I saw my cardiologist today and I think she summed it up quite well, she said "POTS *****!". That was her professional opinion.

I was just thinking about this. I went to my cardiologist today and thought to ask her. I have been afraid to get it because of possible POTs reactions to the shot. Iwas suprised because I figured she would say yes, get it. BUT.. she said 1. If you haven't aleady gotten it, not too. 2. Many POTs patients have reactions to shot and I shouldn't worry about it. I said even though the media is saying this is the "worst year" and everyone should, she said nope, don't get it. So... Probably other doctors have different opinions. I live in Michigan and it is all over the t.v. here too!

Heather, Totally understand the frustration of good days/bad days. I have times I feel really good and think maybe I am getting better and then for no reason, I feel terrible again. Sometimes there are days that have both good and bad times in them. Although, it is totally frustrating to never know what I will feel. I so totally am glad I am having "some" better days, I never want to get back to the time when I had no good moments. I have discovered that there are times I cannot push through, but there are other times where I have to try and push through. When I am down for too long, it can make symtpoms so much worse. It's learning what is enough and what is too much. The joys of dyautonomia!

When I first started it I was really sick, so I don't know what may have been a side effect or what was just my wonky body. But they first started me with .25 mgs in the evenings. My eyes and throat got really dry and I felt like I couldn't swallow. I went down to have a pil, so 12.5 mg and it seemed like that was better. I also take a alpha blocker in a.m. This past fall I started taking 1/2 pill at night and 1/2 in the morning and it seems to be good. If I miss a dose by a couple of hours I feel terrible. It scares me how much I need it, but on my meds my bp is more stablized, as long as I am careful. I am still having some flares and after talking to some more experienced people on this site, I probably need to adjust meds. But for me, this medication is definitely helping me.

Many of us have been told our symptoms are psychological, "all in our head", or "just anxiety". And many us began to believe it, even while at the sametime knowing something was really wrong. Loonymom is right, once a doctor says that, it is time to drop them. I learned the hard way, I stayed with my initial doctor for over 6 months, getting worse and worse. I was told I just had Gerd and anxiety. My symptoms got worse and worse, until I ended up in ER (multiple times). It wasn't until I had to be admitted to the hospital for uncontrollable labile hypertension, did I finally get some validation. Here I was in the hospital crying because somebody finally believed. The best words I had ever heard were "This is not all in your head. If you could make yourself have this type of blood pressure and heart rate response, the Secret Servce or CIA would want you." I am a work in progress on staying positive, but this site has helped a lot, it has given me information and I have made some great friendships. Stick around here and just keep looking/fighting for answers!

Has anyone ever had anything like this or have any ideas? I have been told I have POTS, probably Hyper, because of the tilt table test and my high blood pressure when standing. I have symptoms that are similar to people here and I know everyone has many different symptoms. But I am wondering about the fact that I have most of my pain on the left side and what is really odd is that I get pain around my left knee and sometimes below it. I have flare ups and with the high blood pressure I get pain in back of neck, left side of face, below the sternum, the left side above my hip and around myleft knee. At times I can't hardly bend it. It is not swollen. Things that can set off my symptoms can be bending (noticed that unconsiously I am bending without bending this knee), stairs, I cannot bike, etc. I feel stupid even asking this but right around my first POTs episode, I slammed my knee between the door and dashboard of my Jeep (don't ask, I am just really graceful, its a family trait). At the time I was surprised it didn't cause too much damage, after a day it was sore but nothing else. Could I have done some kind of damage to the knee to an artery or something that could have triggered the POTS? Am I just grasping at straws or ? I am experiencing a flare up and my left leg is kiling me, just lifting the leg over the shower is bothering it. Thanks for any advice.

I agree with Tuesday. When I have some "good days" I am much more optimistic and start planning ahead. And then BAM it is back. Besides the awful physical feelings, ,their is the despair, grief, hopelessness, anger.... I could go on and on. Not being in control of your life and never knowing what is next, more so than the "normal" person can make you feel these ways. I know there are many people that say they feel this has made them so much stronger and you hear how they never complain. Well, I do complain and get upset at times. I try not to take it out on others, but sometimes I do. And let's face it, people always treat those they are closest to the worse. Sad but true. Don't think you are a terrible person, if you need to vent this is the place to do it, because we understand. If it gets really bad, its ok to go talk to a professional counselor they can help and we need all the help we can get. Lol.

I don't think its because of dryness, it seem to be caused by activity, or any touching of the eye area. Its like they are extremely sensitive, and fragile. I am seeing my cardiologist this week and will ask them. I have had blood shot eyes from being tired before, but this is different. I don't know how to explain, but the white of my eyes are now never clear.

It really depends on what kind of books you like. I have read a lot of mindless romances and I find they help me laugh. They are quick and easy reads if you like those I can suggest those. Some of the authors are Jennifer Cruise, Sophie Kinsella, Robyn Carr, Susan Mallery, Susan Anderson, Nora Roberts, But I can give you titles. I also read mysteries and a variety of others. I also like to read biographies, One I read recently was by Michael J. Fox. Let me know what kind of books you like. I am a book aholic, also a librarian.

Underwater Thing, I am still in the learning stage of all of this. But last Feb. when I still didn't know I had dysautonomia, I had a endoscopy and one of the nurses told me that my blood pressure went up quite high while I was under. I didn't know to ask how high or ask about the heart rate. They released me because it lowered as I recovered. But I felt terrible for quite a while afterwards. From what I have seen on this site, this is a common occcurence, don't know why.