Joann

I am like everyone else on this post. I still do not believe I have "just POTS". And even if it is, I want to know why, the cause of it, the type of it. I am tired of doctors just looking at one symptom and trying to treat that. I often feel that there is a cardiac related problem or neurological problem, but so far no one is interested in looking any further. I finally saw a local "expert" and she only wants to treat the bp and heart rate, she even said she didn't know about the other symptoms, she was not aware that these were symptoms related to this syndrome. It has only been online here that I am finding information and people with similar experiences. I too, want answers. My next step is Cleveland Clinic, I have heard good things so I am hopeful I will find that doctor that will go further.

Jen, Just another thing we have in common. I have been losing hair for the past year with this sillly syndrome. When I am in the shower, and when brushing it, I have really noticed it. For a while I was worrying I would become bald! I have fine hair, but used to have a lot of it. Good thing, I guess. I am not sure if its part of dysautonomia, part of body just being under stress, medication, or part of vitamin deficiency. I have had low d and b12. I had to take large doses of vit d a while ago and I am getting monthly b12 shots, I still am losing hair but I think it is not as bad as before. I actually had a bout a week recently where it seemed like it had slowed down, but it started up again. Oh, and I have begun to get a LOT of gray hair. A friend of mine is a hairdresser and she said when your body is under stress (physical or emotional) this happens. But I thought of one good thing, if I am having grey roots showing up so soon after coloring, it must mean I am having a lot of new hair growth, because your roots may fade in color but don't go back to gray ! So I lose a lot and grow a lot!

I am so sorry you are feeling bad. It seems like there are so many weird symptoms with this. I have many odd problems that the cardiologist said are not related, but I find that many of us have these pains. I think they are related, the doctors just don't know enough yet to understand it. I hope you feel better. I am watching the 24 hour marathon of The Christmas Story, it always makes me laugh, and I have Christmas carols on in the background. Wishing everyone and little relief and some happiness this holiday.

Southbel, I so understand your rant. I too have a daughter and am so frustrated and more, that I can't "do" Christmas like I used. This is the first year I bought Christmas presents early, because I am so afraid I may be in the middle of an episode and not be able to get them later. Of course, because I am unable to work., I don't have much money to buy many presents either !I have changed our Christmas dinner to something more simple and have told my husband he will have to help.Hopefully, I will be ok tomorrow, because I have not bought our food for Christmas! LOL. Imagine Christmas dinner with takeout from the local Chinese restaurant. Of course, I have to avoid salt because I am hyper pots, so I would be limited on what I could eat, probably wouldn't have an appetite anyways if its the middle of an episode.' I also had to change the location of our Christmas, because I can no longer go downstairs to our finished basement, where our large living space is. My family can't find the Christmas stockings and I can't go down and look! It really *****. I did manage to buy the items to stuff the stockings, just no stockings. Ho Ho. . But... at least we are both still here to celebrate Christmas with our families. Sometimes it seems like the little things are what make us reach that breaking point. Who knew how much I would miss being able to go downstairs and do my families laundry? Or run down to the pantry to get my Christmas platters? I can't complain to my husband about my former white now blue shirt, because at least he is doing the laundry. One day we will laugh about these things right? Still I am hoping one day we will all be able to celebrate like we want to. I really do not have suggestions on medications for you, I am still trying to figure it out. But I have had awful reactions to both Lexapro and Celexa. I did try ativan and I don't have a problem with it, but it didn't really help me either. Right now the only things I take are an alpha and a beta blocker. It seems like every one is so different that what works for one person may not work for another. I hope you get some sleep and that you are able to enjoy the holidays with your family.

I don't have any answers for you. I am a mom too and I know you feel worse when your child isn't feeling well, than when you yourself are ill. My daughter is twelve and she came home from school telling me she hadn't felt good. Said she was fine when she was in class but when she got up in between classes her head and stomach hurt and she was really tired. My first thought was oh, not don't let it be POTs. But I think she has a virus. She is sleeping right now and has a fever. Can your kids see your doctors? Could you try your blood pressure cuff on them? Hopefully, it is not anything serious. Wishing all is ok. I

Thanks for all of your advice, I do plan on PMing all of you, but for now wanted to let you know what happened with my appointments. First Dr. Jaeger is booked until late winter/spring. The Grand Consult also known as National Consult, I think,, wants to set up my appointments for Feb 12th. But when I asked about Dr. Shields, Jaeger and Dr. Fouad-Tarazi, I was told none of them were available at that time. Well, why am I making a trip there if none of the doctors have specialty in any autonomic area? I am willing to look at other areas also, but I definitely need them. So then she wanted to make the appointment for May! Any how, I have an appointment for Dr. Shields at the end of January. They will try and book some of the other doctors the Grand Consult wants me to see for this day or for the Feb. date. So I may need to go twice. Not sure how I will find the money, but maybe Dr. Shields will have the answers and I won't have to come back! Oh, and Dr. Shields had an opening for Dec 26th if anyone needed an appointment. I couldn't imagine having my records ready by them, nor do I want to leave my daughter on Christmas! I suppose if I was in the condition I had been in last May, I would have jumped on that date. Still, I have discovered you have to be forceful and look out for yourself, I could have traveled to the Grand Consult appt in Feb and had appointments with doctors that are not familiar with dysautonomia. I think the doctor that reviewed my case, should have been more specific with the schedulers. I think I am going to call the two other doctors offices directly and see if they can't see me if they have colleagues that could.

Has anyone discovered why so many have problems with stairs, inclines and lifting? I too cannot do these things and yet some days can walk long distances with no problem. I could understand a bunch of stairs, but just one level seems crazy. Especially when many of us seemed to have been in such good condition and able to do these things daily. For me the effects of doing stairs can last for days, and sometimes I am not immediately effected but I start to feel bad a little bit later? The doctors keep telling me to try and do a few stairs every day and then add to this, but it does not work. Has any doctor given an explanation for this?

When this first began, I had such problems eating. It hurt to eat. Then I lost my appetite and was so sick the thought of food made me ill. I am 5'7" and was down to 100 lbs. I was trying to explain all of the odd (now know POTS) symptoms and the doctors would just say it was acid reflux or anorexia. It has taken over a year but I am up to 115. But everytime I have a flare up, I get so sick I can't eat and lose more. The highest I have gotten is 118. My goal is to hit 120. I was really close this month but am in the middle of a bad spell so I am now losing again. If I ever can I would like to gain extra weight so I can have it for illness. Being underweight is really dangerous and makes symptoms so much worse.

Hi, I looked thru the older posts but didn't see anything about this. Has anyone been to the Cleveland Clinic? Could someone give me some suggestions on what I should try to get them to test for. I called their Grand Consult department recently and they had me email a brief summary for doctors to review. They have called back and left a message that the doctors have reviewed and given their suggestions on what doctors I should see. I have to call back tomorrow to schedule my visit. The nurses said the doctor, wants me to see a nuerologist, nephrologist, gastrologist (sorry my spelling is awful). She also said we can schedule a cardiologist. Should I ask for anyone in particular or should I include another specialist? I am both nervous and excited to go. I am afraid I will go there and they will not have any answers and then I will feel so hopeless, but excited that maybe I will have some answers. I am also afraid I will go there and not ask the right questions or see the right people. I need to make the most of this opportunity. It will cost my family a lot of money, which I know you all understand. I have a primary doctor at home, who has basically told me she doesn't know what else to do, she has never had a POTS patient. I have a cardiologist who does have POTS patients, but not so much on hyper POTsies. I have been told she is very good, but so far, I haven't really gottenn much help. But its early I have only seen her twice, but she did say she only treats the POTS symptoms. She seems to think the heart rate and bp are her department, but the neck, chest, face and stomach pain are not. Sometimes I think what I have is hyper POTS but sometimes I think it is something else. Some of my sympotms are like people here, but many of mine are different. I am not complaining, but I do not have problems with the shower, I don't faint. I do get high bp and pain. If anyone could give me suggestions on what I should do on this visit it would be appreciated. I think they are booking for Feb. appts. Thank you

So sorry you are feeling crappy. I know what you mean about flare ups when you least need them. I am trying to get ready for Christmas and yet not overdue it. My daughter has a tournament this weekend that I really want to be at. Now last weekend, I felt pretty darn good, you know how you start to think, " if I could feel like this, it would be okay. I mean, I am still not better, but manageable" and then bam its back. I began feeling bad Sunday night, and I have tried to find that balance of not doing too much and not doing too little. Of course, today I feel worse and am so hoping it turns to better before Saturday. I hope your body took a surprising turn for the better before your final.

I get twitches also. Not as many as you mention. I am wonder if we are deficient in some vitamins and minerals. I have tested for low vitamin d and low b12. I currently get monthly b12 shots and I was given huge doses of vitamin d in late summer/early fall. My vitamin d came up to 70 and I was then told to stop and just maintain with over the counter vitamin d. I have not yet found one that doesn't bother my stomach. Thinking of trying a liquid vitamin d3. I think that the twitches were less when I was on the high doses of vitamin d. I also notice they are worse when my POTS symptoms are worse also. Maybe you could call up your doctor (especiallly neurologist) and ask them?

This is one of my biggest problems and so far no doctor has addressed it. They just say for now avoid stairs. I live in a bungalow! So a huge part of my house is unaccessible to me. I cannot go up or down stairs and avoid inclines as well. I haven't tried jogging, but I have been walking quickly,, and I hit tennis balls back and forth with my daughter for about 20 minutes (I wasn't running all over but still) and that seems to be fine. It justs seems crazy to me that 15 months ago, I went up and down stairs, even running up them with no problem. Now I cannot even go down 13 steps without awful results. I don't get out of breath, and sometimes my reaction is not right after, but an hour of more later. But it will trigger symptoms for days! If I ever get an answer, I will post it. Once I did try just going up and down 6 or 7 steps hoping I could do his for a few weeks and keep increasing the amount of steps, but I did this for 3 days and later that night had the sympotoms begin and last for about a week, so I stopped that experiement. I am ok going up 2 or 3 steps, so I can get in and out the door okay. LOL Could our body get that "deconditioned" that quickly, (i hate that term) that we can't do stairs. Can't lift heavy things either, that causes problems too.

We are the second family to our neighbors dog, Bella. Since I have been feeling bad and not working, Bella spends most days with me. She definitely helps me stave off depression. Having a cuddle buddy who loves you no matter how you look or feel is a wonder drug! Bella spends so much time over at our house, that I "almost" feel guilty about it. But they are so busy, I think it works out for both families and Bella.

Alright. This did not occur until after I started becoming ill. It concerns make-up which for a while I was too sick to care about putting on. Hey, it was a good day if my hair was pulled back in a pontail and there wasn't too much grey hair poking thru! Showering every 4 days was a good thing. Anyways, I am having problems with my eyes. When I put my eye make up on no matter how gently, my eyes get extremely bloodshot. Especially the left (everything is always worse on my left side LOL). It kind of defeats the make-up. Lets enhance the blood red eyes. Oh don't you look extremely zoombie-ish. My eyes can get blood shot at times when I am not feeling well also. I know high blood pressure can cause this and sometimes that probably is it. But does anyone else experience this. I wondered if its a POTs thing or could the beta or alpha blocker medication cause it? Or is it just another symptom that no one else can figure out? The only make-up I usually wear is eye liner and lip gloss. I feel that I look totally different without my eye liner. I have been trying to look a little better, trying to fix my hair and look more like I used to. I know its not one of the important problems, but hey can't I at least look good, even if I don't feel good? Oh, and don't get me started on how I suddenly need to dye my hair more often or look like I feel. LoL. My twevle year old who is a natural beauty and hates all girly things, said "yea mom you need to dye your hair, you do not look good in gray. " Thanks, hon!

Just wanted to chime in that I also get delayed reaction to exercise. This thread makes me feel a little better, just knowing I am not the only one. I have told my doctors how several hours after doing stairs or exercise I will get extremely ill and they look at me like I am crazy! I guess I should be used to that look by now! LOL. I agree with several of the posters, it makes me afraid to do more than walk, because I am so afraid I will pay for it later. Do any of you notice that after you have triggered that response, that it is more easily triggered for quite a while?

Me again. I checked the old posts and didn't see what I was questioning. So. I went today to pick up my compression stockings. They have a person fit them with you. I put one on and before I even got the second one on I was feeling bad. I put the other one on and stood up. The person there asked how they felt. I told him I wasn't feeling very good. He said some people have trouble with them and takes a while to get used to. I asked what kind of trouble and he said they bother their legs. Well my legs felt fine, but my head was getting that full pressure feeling and under my sternum and neck were tightening. I was overall feeling like my upper body was tightening. Even my arms felt like there was fire coursing through them, ( I don't know how else to explain it). I told the guy I was going to take my blood pressure. My blood pressure was 150/96 and heart rate 110. I waited and took it again and it errored on me twice. Earlier that morning it was 119/84 heart rate 88, standing. I know the blood pressure isn't terrible but for me when my blood pressure goes into 130's or diastolic in high 90's or above, I begin to feel as if I am having a heart attack. I also feel bad when my heart rate hits the hundreds. Of course, back when I was exercising and healthy I am sure it was higher but I didn't feel it. Now I feel it. My blood pressure has been staying pretty consistent on the blood pressure medicines. I took the stockings off and by the time I got home, my bp was going down, and I was shaking/like I was cold but I wasn't. I sat for a while and then got up and walked the block three times, which then dropped it. Has anyone had problem with the compression stockings making your symptoms worse? I have a call in to the doctor. I did not buy them. Since insurance will not cover, and they arer $149.00! If they were less I would buy them and experiement with them, but after that experience I do not want to waste $149.00. Does this make sense, I wonder if there could be something wrong with my leg? I am having these problems when I bend, try stairs, get up in the morning, and in the past when I would be on my knees (kneeling playing a game with the kids, or putting clothes away,etc), and going into the water at the beach was terrible. Now the compression socks. Any ideas? I have a feeling the doctor is just going to think I am nuts and that anxiety and my mind is doing this. I know it is not.

Thanks for your responses. I had an appt. with my primary doctor to go over some blood work this morning. I had called for results 2 weeks ago and told to wait for appt. Well, today I got there to find out the sample was not valid and the test has to be redone! Seriously, this was done 3 weeks ago, and I called to get results, so obviously no one looked at it. I was waiting because the new cardiologist wants me to switch one of my bp meds, but said to wait and make sure that the test which is used to test carcinoid tumors was ok. So now I have to wait, longer. She wants me to change my BP of cardura to chlonidine. The cardura was originally prescribed because it is one kind of alpha blocker and went with my metropol beta blocker, to prevent possible pheo tumor. Chlondine is a different type of alpha blocker. I do not know the difference, so now I don't know- do I wait more weeks to change. Too be honest I am so paranoid to change medications, I always seem to have reactions to them. And will this kind work as well with my Beta blocker. I know I should trust the doctor, but I have not had good luck with past ones. The two bp meds have keptt bp down most of the times, and the few times I have even been a tiny bit late, I have noticed right away. My primary doctor does not know what else to do. She agreed with another doctor that I should try and call Cleveland Clinic. She also said to go back to cardiologist and nuerologist. She has never had a patient with POTS of any kind. I do think she would work with me, if I had specialist telling us what to do. So I guess I will try and contact Cleveland Clinic. I am continuing to have some bad episodes since past Thursday. I had a month with just little problems, it had kind of given me some false hope that maybe they were gone. I actually was getting impatient at how I was progressing. Now I look back at that time and will be happy if I can be there again!

My vote was for other. Cardio- chest pain, with neck and head pain/pressure, can actually feel blood pressure and heart rate rising.

Like everyone else here. I have been dismissed as anxious. My family doctor of 11 years told me I had anxiety and gerd and that I needed to relax and eat! One cardiologist looked at my BP and heart rate and told me I was also anxious and that was in the first minutes of meeting me, he hadn't even gone over any of my records. He told me I needed to address my weight loss. Even after being sent to a specialist by a doctor that finally felt it was POTS, the "specialist" told me yes it was POTS, but I didn't need to see him just continue my BP meds and eat lots of fruits and vegetables! Just keep searching for doctors. I currently have one that is kind of helping and I am looking into a consult with Cleveland Clinic. The doctors go home to their lives, we have to go home to this, so don't let them tell you there is nothing wrong. Hopefully one day, more doctors will realize what this is.

Hi, I am a new member, although I have been lurking here for several months. Just a little background on me. I am still searching as many are for a accurate diagnosis. My symptoms have now been with me for 15 months. Just this past month I finally had the tilt table test and was told I did test positivily for POTS. I am on two BPs, so although I am battling with extreme increases in BP, that did not show on the test, the doctor did think it may be Hyper Pots. I have been tested for Pheo tumor, and although confilicting results the overall decision for doctors is probably not. (So reassuring, I rarely get a definitive answer on anything). Now another test came back and they are re-running it for a carcinoid tumor (high 5Hiaa level) I never get light headed or faint like many on this site talk about, but instead get intense pressure below my sternum, pain on back of head and neck and left sided pain. Left side can include neck, upper jaw or below eye or near ear, left knee and sometimes left side. And of course the high bp and heart rate. My BP medications definitely are helping, before them I could not even sit up. If I am not in the middle of a bad episode walking seems to help me, I know many people here get worse as they walk. My BP goes down, again unless I am in the middle of a terrible episode. But, I cannot walk up or down more than 2 or 3 stairs. If I try to do a lot f step it will immeditley trigger an episode. The weird part is if its not too many stairs I seem ok, but later on it seems to trigger the problems. I went without doing stairs for a month and while I had some smaller episodes, this past Thursday, I went down about 12 steps (so stupid) and within a couple of hours I was sweating, and the above problems. At bed time even moving in bed was triggering it to the point I was worried I would have to go to ER, where I know they would just watch the BP. Bending too much also sets it off, last sping I couldn't even bend to get clothes out of dresser, that seems somewhat better. Oh, and I can't lift anything heavy. Does this sound like hyper pots, or something else. I worry this is some type of heart, blocked artery that is not being found. I am sick of them telling me it is not life threatening. When BP and heart rate skyrocket, isn't that life threatening. I have not been able to really function since last January, Sorry for the long post. I am just like so many others, scared, frustrated, angry. Thanks for any help or suggestions