Deb

I too like a glass of wine with dinner. I stayed away from it for months until my medications/dosages were stable. I started with just half a glass of wine but I drank 16 oz. of water, first. I now have a glass once or twice a week, but I always drink extra water to compensate for the diuretic effect. I haven't noticed any problems. I think that you need to review your medictions very carefully before you try drinking again. I take Florinef, Midodrine, and Zoloft. This message took me forever to write. I had one of those brain fogs in which I couldn't remember what I was writing or even recognise some of the words I had written. I really hate that symptom.

I have asthma, rhinitis, and eczema which are all caused by allergies. Along with POTS, I have IBS which was probably caused by the POTS.

APB, It took about two weeks for the Florinef to start working for me, but when it did, it made such a difference in how I felt. BUT, I HAD to increase my water intake and my sodium. Try to drink 16 ozs of water every two hours. Put a teaspoon of salt in one of the glasses of water and see if you don't feel better tomorrow. I had low blood volume, and every time I stood up my heart rate jumped real high and within minutes my blood pressure fell and I would pass out. I never had pooling in my legs, my fainting was mostly due to the low blood volume. The hot spells were attributed to the increase in the adrenaline that was released because of my heart working so hard. Plus I was low in potassium. So most of my problems are relieved by keeping my blood volume up, and keeping my potassium, sodium, and magnesium levels within normal range so that my heart rate doesn't go out of control. I am not a medical professional, but I know that most POTS patients need extra water, and some need extra sodium. Ask the doctor that thinks you may have dysautonomia to give you a Heads-up Tilt Table Test. If that's not possible, then have him have you lie down on your back very still and quiet for ten minutes, then take your blood pressure. Then you should sit up and continue to keep still and quiet for ten minutes and take your blood pressure again. Then have him help you to stand up while he takes your BP for the whole ten minutes. You may need to have someone else help keep you standing. This test can tell if you have orthostatic tacycardia. You may get hot during the test. This is the adrenaline causing that. I had to edit this because I forgot one of the important parts of the test. The doctor should also be taking your pulse in between checking your BP. Sorry I left that out. I really hope you can get some help soon. Everyone says it will pass because it does. I still get the hot spells occasionally when I am in a hot place, but they were NEVER as bad as those first ones. I really thought I was dying. Sometimes you have to be AGGRESIVE about your medical treatment because you have so much at stake. Good luck and take care, Deb

Hi Steph, I suffer from that, too. It just comes and goes with no apparant cause. It is always worse in the mornings. I just try to keep typing when it happens. I have my elbows resting on the arms of my chair and the heels of my hands on a soft pad in front of my keyboard. This way all I have to move are my fingers. I wiggle my fingers and clench my hands into a fist and that helps, too. But for me it seems to help to just keep trying to use my fingers. I also quiver a lot, and it seems to help that, too if I keep working. Of course, I make a lot of mistakes that I have to fix, but that's okay, too. Deb

APC, I had that burning problem, too. I thought I was dying. It felt like my body had gone completely haywire. I had it several times over the course of about three weeks last December, but I haven't had it since. I also got very cold during that same time period. And, like you, I didn't have a fever, either. I believe it was due to low blood volume. After I started on Florinef and a high sodium diet, most of those swings in temperature have stopped. I suggest you go to a Doctor who specializes in disautonomia. In the mean time try drinking a lot of water (I drink a gallon a day) and add more salt to your diet. If you find that hard to do, then put salt in your drinks. You can add it to diet colas, gatorade, tomato juice, and plain water just to name a few. It has helped me tremendously. I never liked a lot of salt, so I put half a teaspoon of salt into a glass of water twice a day-morning and afternoon. Give that a try, and please try to see a Neurologist. The DINET website has a list of doctors you could try. And, confide how you feel to your boyfriend and your other friend. They will want to help you. Just being able to talk to someone about how you are feeling makes such a difference. Of course you can always talk with us here, but you also need someone closer to you. Good luck, and keep us posted as to how you are doing. Deb

Hi April, I've been having the same problem for almost a week, too. I've had symptoms of POTS for over a year, probably closer to two, but I didn't get bad until this past November when I started fainting. Along with the fainting I started having what I called "episodes" in mid-December. I would sort of space out, my head would hurt, I couldn't concentrate, I felt light-headed and heavy-headed at the same time, I could feel my heart beating and it felt out of rythym, I'd get nausous sometimes, and sometimes my legs felt like they couldn't hold me up and wouldn't work right. I had pains behind my right eye and in my jaw and neck and my right hip and knee. My eyes would flutter uncontrollably, and my hands would quiver. I didn't always have all of the symptoms, but most of them. The episodes and the fainting got so bad that I couldn't stand for more than a couple of minutes. I was in and out of the hospital and ER several times during this period, but it wasn't until January 1st when they finally made the diagnosis of POTS. I've been going to UVA Medical Center and they supposedly have a specialist in POTS. My TTT was the worst they had ever seen, so I guess you could say I was in terrible shape. My heartbeat and blood pressure were out of control. I was put on Midodrine and Florinef and Paxil. I'd been back to see my doctor, and I couldn't tolerate the Paxil so I was switched to Zoloft. By early February I was feeling so much better that I made plans to return to work February 16th. A couple of days after I started back, the episodes started again, but they were so much worse because the quivering became shaking attacks, like seizures and I was crying a lot. I tried to get in touch with the Neurologists since my GP doesn't know anything about POTS. I finally went over to the clinic (I also work at the Medical Center). I was crying and could hardly walk and I begged them to let me have an appointment with the specialist. They were very nice and made the appointment for the very next Monday. But to my great disappointment, he, too, said it was anxiety and that I needed to increase my medicine. He said my symptoms were not POTS related, but was anxiety. He made me an appointment with a Psychiatrist since they supposedly know more about those meds. That was my long anticipated meeting with the "specialist". Well, to make a long story shorter, the Psych. increased the Zoloft, gave me Lorazapam and Xanax because she thought I was having panic attacks. The Zoloft seems to have helped even out my moods a bit. I'm not crying anymore. The Lorazapam helps me sleep at night, but doesn't seem to do anything to relieve the episodes. The Xanax didn't do a thing for anything. I felt absolutely no change when I took it. I don't believe these episodes are panic attacks. After reading what a lot of others have written in this forum, I believe that these episodes we're having are symptoms of the POTS. I'm sure some of it is anxiety, too, and I hope that they will abate. But for now I seem to be in a cycle of having a several good days, and then having several bad days. The good days are the ones that are realatively free of episodes. The bad days I'm sure you know about. One good thing, though. On my good days I'm able to do a lot of things I like - cooking, gardening, taking walks, playing with my dogs, etc. I just have to learn where the boundary is because sometimes I over do it and suffer the next day. When I'm having those episodes and my heart feels like its racing and my chest hurts, I try to breath deep and slowly and think about something pleasant or if I'm at work I try to concentrate on something like looking at a plant. The pain and racing heart seem to ease up in a couple of minutes. I know my heart is fine because I've had every test imaginable. It's the responses that are so out of whack, and they aren't life-threatening. Try to hold on to that, April. It is so scary, and frankly it still is. But I know that the episodes will pass and I'll feel better. I hope my story has helped you some. I've really only started my journey with POTS as I suspect you have, too. I've learned a lot from this forum and I hold great hope that more research will soon discover the underlying cause and then a cure. Hang in there, April, and know that there are many people here who care about you. Deb

What exactly are the involuntary movements you've been having? I have a lot of weird movements and jerks. Sometimes my left hand sort of jerks backwards, my small fingers on both hands press against my ring fingers and I can't move them for several seconds, my right sholder has a twich, my right leg jerks, and my big toe on my right foot used to do some weird thing, but that hasn't happened in weeks. I think it's from the POTS because I had most of these things before I started on any medications.

I can hardly believe how supportive all of you are to each other, and now to me. As I read through what you've been writing, I realize all over again how fortunate I truely am. I'm 46, I've had a full and happy life so far, I have three grown children, I've had a successful career, I have a wonderful, thoughtful, and supportive husband, oh, and two of the best Golden Retrievers around! . One of you wrote today that you used to be the most optimistic person, you'll be that way again. Start by thinking about the little things. The first time I walked down the steps without having to think about it was a HUGE milestone and I whooped and hollered when I realized I had done it. Getting out of bed and not having to go and sit down immedietly, taking a shower by myself, sleeping through the night without waking up soaking wet or burning up, there are so many things that you can be happy about. Learn to celebrate the small things and you'll start to see the old you return. Deb

Thank you for your replies. I've looked at the DINET website dozens of times since I was diagnosed with POTS, but I never noticed the forum before. I am so glad I found you because (like many of you) I've had some sad and frustrating days just dealing with the questions about my health. Everyone is so kind and considerate, but only my husband really knows what I'm going through. It's a struggle everyday just to try to put on the facade of my former self so that I'm not constantly being asked "how are you today?". I was taken to the ER by my office mates and friends five times since November 12th. I work in a large medical center so having an ambulance come to take me to the emergency room which is in the next building was a big thing. Now I have Employee Relations talking about having to make special concessions for me. All I want to do is to work, but now I'm thinkin that maybe I shouldn't have come back so soon. I was off for two months and was feeling great (not like my old self) but at least normal-like. Now I get so tired during the day, just like I did before I started any medications. I've read a lot of what others have posted and it sounds like many of you go through bad spells that last weeks and months. I've only been diagnosed for four months, is this what happens? a couple of months of feeling good and then a period of feeling poorly? Is that why so many of you seem to be not working, or working part-time? Oh Yeah! I almost forgot to say that most of the times when I was taken to the ER, I wasn't able to speak. I have my medical history written out and carry it with me. When I have one of those really bad spells when I'm shaking, my speach gets very slurred and/or stuttery. I think that's probably a bit of anxiety, but each time it happens, it's almost like the first time. It's so scary. I keep telling myself that my heart is okay, but it feels like it might explode. So, of course, I'm always crying, too. Thankfully it doesn't happen real often. Most of the time I can deal with it, especially when my husband is around.

Have any of you ever experienced periods of trembling, expecially the hands? And has it ever gotten so bad that you actually shake, like a seizure, except that you are fully concious of what is happening? Before I was diagnosed with POTS, one of my symptoms was trembling. It started with two fingers, then moved to the other hand, same two fingers. Then I got to where my whole right arm would tremble some, and my right leg would jerk, rather violently. It happened mostly at night and would wake me up. Then a few weeks ago I started shaking violently. It almost always happened in the early morning hours while still in bed. Then I had an episode at work and they thought it was an epileptic seizure. I was taken in an ambulance to the hospital, and as soon as they heard that word "POTS" it was like I was no longer worth their effort to help. I was still shaking so the Neurologist on call got me in for an EEG right away. It turned out to be okay, so then it was blamed on anxiety and/or panic attacks (I'm sure many of you can relate to that). "We better raise your Zoloft" was the unanimous cry. A week or so later I saw my Neurologist for a "routine" checkup and was actually listened to about the spells not being due to anxiety. She thought my midodrine dosage was too high and could have been contributing to the shaking. She was right. The day after I cut my midodrine in half (I now take three 5 mg. tabs a day instead of 6) I felt so much better. That was two weeks ago, and I haven't had the shaking since. Have any of you had anything like that happen? Since the Zoloft (and Paxil before that) doesn't seem to have any effect on the trembling, could it be from the POTS or do I need to swith SSRIs again? Is there any relief from the trembling? By the way, I tried a beta-blocker for about a week, and I felt like I was going to die. Deb

Did you ever find out the results from your tests? I hope something came from them. I had another CT scan today. My docs thought I might have gotten POTS from having lung cancer. They took tubes and tubes of blood and sent it to the Mayo Clinic, and then did a biopsy of a tiny mass in my lungs. This was back in January. The blood samples showed normal, no cancer and no auto-immune problem, and the biopsy showed only scar tissue. YEAH for me! This CT was a follow-up to see if the mass is staying the same or has changed. Did any of you go through the battery of tests that the Mayo clinic does? It was a huge relief for me to know that my POTS wasn't caused by something even worse than the POTS. Of course, no one knows why I have POTS, but at least I know that it's not life-threatening. What I have to fight almost everyday is the fatigue. I INSISTED that I drive myself to work. I know my body well enough that I can tell if it will be dangerous for me to drive, and I then ask for a lift home from a neighbor. My husband gets very worried about me, but I tell him I have to try to lead as near a normal life as I can, and that includes driving. Of course like you, I spend most of my weekend catching up on sleep.

Thanks for all of that info. I drank Gatorade soon after I was told to eat a high sodium diet, but I can't stand it, and it has so much sugar. I started drinking Campbell's Tomato Juice because it is higher in sodium and potassium than Gatorade and much lower in sugars. Plus I can add a little salt to it without gagging. I'll try looking for the Kaolectrolyte. Deb

I didn't know that feeling had a name until recently, but it is terribly scary the first several times it happens. I get an episode on an average once a day. It doesn't last very long, but when it's there, it's terrible. I have that eye problem thing too, but with me, I have to keep my eyes straight because if I move them too much I get dizzy and nauseous. I find that if I can keep still and try to concentrate on something, like a houseplant or the computer monitor, that it seems to ease up without too many symtoms. I get a headache with it, and sometimes a dull pain behind my right eye. I was just diagnosed Jan. 1st, but I'm already battling with my Doctors about increasing Zoloft. They had me on Paxil, and I couldn't tolerate it. Now with the Zoloft, the only thing I can see that it's doing for me is helping with the crying. I used to cry at everything. It was to the point of embarrassment. I know it's the POTS causing me to over-react. I just hate having to take sooooo many pills. And I REALLY hate having the doctors blame EVERYTHING on anxiety.

I've always overreacting to stimuli. I wouldn't describe myself as nervous, but others might because if someone around me as much as sneezes loudly I jump out of my seat or gasp loudly. But that aside, I've never minded giving blood but I freak out if I cut myself or I'm around someone who has cut themselves and I can see the blood pulsing out. I think I can say that I have nearly fainted at times. But I don't think that's caused by POTS. It's a fairly common reaction. I don't watch scary/bloody movies because I dream about them. Same for books. Anything that scares me during the day, I usually dream about it that night. I always remember being this way.

Thanks Louby. I drink a lot, too. I drink about a gallon of water a day, plus what I drink at meals. I goal each day is to drink a pint an hour. I know I need to get more sodium, but that's hard since I don't like many salty foods. I drink tomato juice since it's high in sodium and potassium, and I eat things like sardines, olives, saltine crakers, tuna, and pretzels, but I'm sure that still isn't enough. I started putting a half teaspoon of salt in warm water each morning about six weeks ago and that seemed to help me feel a bit better. What are the electrolyte sachets you wrote about? I have wondered if I should try to have more salt in the afternoon, but was afraid of too much. My worse time seems to be at 9:30 in the morning. I eat regular meals and drink a quart of water as soon as I wake up (I keep a glass of water by my bed to drink when I take my Midodrine). Deb

I don't have as much trouble standing any longer since I have been able to walk and exercise my legs to build up my leg muscles. I do what several of you suggested - crossing my legs and squeezing the muscles, relaxing and then squeezing, doing the squat to examine my shoes, rolling from toes to heels, and wearing unbelievably tight gradual support hose (that cost a small fortune). I do, however, still have a lot of trouble sitting at my desk at work. I suddenly get very fatigued, my eyesight gets blurry, my head starts to hurt, there is a blunt pain behind my right eye, my hands start to quiver and shake (sometimes my right leg jerks suddenly), and my chest feels like a small elephant is standing on it. My brething is okay, and I usually feel better when I get up and walk, but as soon as I sit down again, the symptoms return. It seems as though the only thing that relieves it is to lie down for awhile. I was diagonsed with POTS on January 1st of this year after three hospital stays and five ER visits and numerous doctor visits. The neurologists think these symptoms are anxiety and or panic attacks. I think that's totally off the mark. I've been taking Zoloft and now I've been given Xanac to take when I have an episode, but I haven't seen any improvement. Most of the time the Florinef and Midodrine seem to work well, and I have a very positive attitude. But, when I'm not feeling well it affects my job, and so many other aspects of my life. Do any of you who have POTS have similar symptoms?