Deb

I don't know anything about your new dx, but I'm feel pretty certain that you aren't going to burn in **** the rest of your life! You must have had the same nuns in school that I did. I'll try to do some research about Central Pain Disorder. I sure hope that having a dx will at least put your mind at rest. One of the worst periods of my life was when I didn't know what was wrong with me. Now I understand some of these strange things that I feel. Keep your head up high, and remember that autonomic problems wax and wane, and you'll have some good days again. I hope this is one of them!

Danelle, There isn't much I can add after all of the great advice you've already been given. I do want to tell you that for me, the midodrine and the florinef basically saved my mental well-being. I was getting so depressed not being able to do anything that I started having thoughts about suicide. Fortunately I had someone to talk to about it. The midodrine works almost immedietly. I can feel it eight minutes after I take it. Nina is right about trying it. It only lasts four hours. So if you can't stand it, it's gone very quickly. Florinef takes longer to start to work. It was a couple of weeks for me, but I've heard that it's not so long for others. If I could only have one of them, I would choose Florinef because it had less side-effects for me. But everyone is different. Midodrine can cause your hair follicles to stand up (all over your body!!!!) which feels like chills and tingling and sometimes a little like your skin is crawling. At first I didn't know what it was. I thought I had another weird symptom of POTS, but it mostly went away after a few weeks. I got used to it. I have become intolerent of the Florinef now. Like most people with POTS, I have severe reactions from medications. The Florinef was effecting my breathing. I felt like I was having an asthma attack, but my inhaler didn't relieve it. I was taken off of it as of yesterday. But it worked great for almost six months for me. I sure hope you get some relief soon. Keep up posted as to how you are doing.

Gosh my heart goes out to you. I hope you're feeling better. I was on a medication regimen similar to yours, except for the amount of Florinef. I took only one .1 mg pill once a day. Instead of Xanax I was on Lorazapam and Zoloft. I was taking the mega doses of potassium, too. And, I only had the IVs when I was in the hospital. (Yes, I was in the hospital - three inpatient stays for a total of 16 days and seven ER visits in four months.) I can hardly believe you were on that much Florinef. Your poor kidneys must be working overtime to try to regulate the electrolyte and water balance in your body. You must be as thin as a rail with all the energy you're using every time you stand up. Unless I missed it, you didn't mention anything about eating extra salt or drinking extra fluids with added electrolytes. Unless you add A LOT of salt, the florinef will not be able to increase your blood volume which is what will increase your BP. It also should help the tacycardia. The midodrine also helps with the blood volume. The kidneys filter the blood, reabsorbs things like sodium, potassium, chloride, and water from the blood that the body needs, and then secrets the fluids, ions, and other molecules that the body doesn't need. Some people with POTS have low blood volume primarily because the kidneys cannot reabsorb the water and sodium that it needs to keep the blood volume up. So when you add the extra water and salt to your diet, it increases the chances of your kidneys being able to reabsorb what it needs. Florinef increases the number and type of transporters in the kidneys that attach to the sodium further increasing the chances of enough sodium that can be reabsorbed. Unfortunately it does this at the expense of the potassium. That's why you have to be careful about your potassium intake when you take Florinef. I didn't mean to make this a biology lesson, but I believe it's very important for POTS patients to get enough water and salt in their diet. When I was first put on Florinef I drank 16 oz. of water every two hours while I was awake. I added extra salt and drank Gatorade, but I still felt terrible and lightheaded. After reading on the DINET web-site a newsletter that contained an article by Dr. Low about extra sodium, I started putting 1/2 teas of salt in a glass of water every morning. I started feeling better the very next day! I better end this or no one will want to read it. I do hope you start feeling better. It's no wonder so many of us have anxiety problems. Look at what we have to face everyday! You continue making a Valient Effort, and you'll have good days again. I almost forgot to add that everyone who wrote before me is correct about staying in bed. Everything I've read says to stay in a recliner if you need to rest. It helps with your blood pressure, and it's supposed to help with your blood volume, too. Good Luck, and we're here for you!

Hi Sue, Sorry about the disappointment. I do hope though that you'll look into the cardiac rehab. My husband had a mild heart attack last October, and although he was very skeptical about the rehab, he went. As it turned out, he loved it. They are very careful about monitoring the patients. They don't let you do more than your condition can handle. That might just be the thing for you. It was covered by our insurance with a small co-pay, like about $10 each visit. Jim is also diabetic, so they also monitored his glucose levels while he was there. Exercise helps the body to use insulin better so his glucose level went very low a couple of times. That's even worse than too high if you don't take care of it. They had him stay until it was at a normal level again. Hope you get to do something soon.

This discussion is very interesting. I'd like to know more after you hve your test Futurehope. I go from day to day doing the same things, drinking the same amount, eating healthy, and then WHAM, I have a day when I am lightheaded and can't seem to grasp things. Sue, I occasionally get dizzy when I turn my head to the right looking downwards. I've had it since last November. I don't get as dizzy now as I used to, but it still happens. I think there is a connection with turning my head at a certain angle, and pinching an artery to my brain. I also agree with what several others that wrote that your additional dizziness is probably because of your weakened state due to your recent very hard, difficult episode. Not to mention just being in the hospital lying flat for days, not sleeping, and being poked and proded had to have had a negative effect on your body. Like April wrote, hang in there and this too shall pass. I think this is going to be my new mantra, "This too shall pass." I'm having a bad day today. It's so unfair because it's beautiful, and I can't enjoy it.

Hope this doesn't sound dumb, but what IS water therapy?

Amy, I had many of the symptoms you have when I was at my worst. I lost fifty pounds over six months. That was one of my first symptoms. The muscle weakness was one of the worst symptoms. I was put on florinef and midodrine and between the two of them I stopped losing weight, and put some back on. It took me a good three months to get back my muscles and stamina. I exercised as much as I could each day. I don't understand either what happened to my body, but I think it was the florinef that helped stop the downward spiral for me. I still get the dry mouth, but the sweating has almost stopped. About the MRI, I don't think it uses radiation. I think it uses a different type of technology to get the images. I had several MRIs to eliminate things that might be causing the symptoms I was having. As far as I can remember, MRIs cause no biological damage. Hang in there. You should start to feel better soon. Try to take care of yourself as best you can. It's almost impossible with a baby, but let the housework go and take a nap. Deb P.S. I forgot to add that I was told I was having panic attacks/anxiety attacks. I know that wasn't it, and fortunatly my husband or my best friend was with me each time I was taken to the emergency room and they both insisted along with me that the attacks were NOT due to panic or anxiety. I think that helped the ER docs to look for something else after about the third or fourth time. I knew that it couldn't be all in my mind, and I'm sure it's not all in your mind either.

Sorry, but that's a new one. I know that there is some connection between the autonomic nervous system and the eyes, but I can't remember now what it was. I don't think you're freaking out. I think it is probably normal to wonder. Try not to worry too much about it, and ask your doctor about it. I certainly know how you feel though. I am sooooooo afraid of fainting again that it sort of runs my life if I don't keep a handle on my fear. I HATE always worrying about my health.

Hi April, I know what you are going through. Even though I am doing very much better with most of my POTS symptoms right now, I still have episodes of that. I have a tiny prescription of Xanax, only ten pills. I used two when I had what I call the quivery episodes and it didn't help either time. I have it right now. My fingers quiver, I can feel something in my chest quiver, I get that I can't think fog, but my pulse and blood pressure are normal. (By the way, I love the BP cuff you recommended!) I just try not to worry about it any more. It used to freak me out. I've only had this strange symptom for about two months. It just comes and goes. I have discovered that if I am doing something with my hands, like gripping the steering wheel or a broom handle, etc, then it goes away temporarily. If I'm around people, I can clench my fists or hold my hands together to make it stop. I still can feel it inside, but at least people are looking at me. I have absolutely no idea what brings it on. Like right now, I'm sitting at my desk, finishing a bit of work without anything bothering me, and all of a sudden my hands start to quiver. It's very hard to type or do anything that requires small muscle control, but it does go away. I've had it as long as about eight hours, but that was when I was tired from adjusting to going back to work. Keep your spirits up, and I hope you'll feel better soon.

I haven't written much in the last week. After April told me about the BP cuff, I went that afternoon and purchased one. It is great! I can take my BP whenever I feel a little funny, and it takes my heart rate, too. This has been such a help! I suspected the midodrine was making my BP too high, and I was right. I no longer take any. In fact, I wrote my Doctor an email about the BP and cutting out the midodrine, and he said that I probably can cut back on the Florinef, too! I am so happy about this! I see him and the cardiologist, that several of you recommended I see, next week. That horrible chest pressure is gone, and my breathing is greatly improved. PLUS, I have been sleeping so much better! I knew the midodrine was causing a lot of side effects, but I'd forgotten how good I could feel. If I could go back to when I was so terribly sick and choose to take the midodrine or not, I would still take it. It gave me back a semblence of life. I have been doing so much better that my hope that I'll be able to do more of what I used to be able to do has swelled to the combustion point! I wish I could send each of you some of my good feelings. I certainly hope that each of you also continue to improve. I know I probably will always have POTS and that it will more than likely show itself over and over again at totally unexpected times, but for now I am just glorying in how well I feel. Now all I'm taking is the 0.1 mg of Florinef and 100 mg dose of Zoloft, plus my allergy and asthma medications. Of course I also wear my compression hose everyday and drink two quarts of water and eat lots of foods with sodium and potassium. And get as much sleep as I can. So, here's to good health to us all!!!

I'm not sure I know what you mean by floaters. Is it something on the eye itself, or something that you see that isn't there? If it's the latter, I've had them for years, and I am also very near-sighted. Sometimes they are white, and sometimes they are black with a ring of black, kind of like when the moon eclipeses (?spelling?) the sun. If it's the former, I haven't had them, and don't remember anyone who has ever mentioned them.

Hi Sue, I'm glad you are starting to feel better. I was having a lot of trouble a couple months ago and wrote out all of the info you are thinking of using. It was very useful when I was taken to the ER because I couldn't talk. Those episodes were mostly due to medication. When I stopped the Paxil, they stopped. So now I carry a much smaller note in my wallet with my meds, and a brief medical history. I've told all of my friends and family members that I carry my medical info in my wallet, just in case I can't talk and have to go to the hospital. Plus, even when I was consious, my brain can be so fuzzy that I can't remember anything. Good luck with your quest. Deb

WOW! You are amazing! I really don't know how you do it! Congratulations on getting your papers done. How much longer to you have until you'll be Dr. Nina? I hope you'll be able to enjoy your summer before the the school year begins again. Deb

Before I was diagnosed, and for a short time afterwards, I had a lot of pain, but it was on my right side. I still get it a little, usually when I'm tired from doing too much. After I rest, it usually goes away. I have no idea what caused it, but I think that when I drastically increased my salt intake is when it mostly went away. Hope you feel better very soon. Deb

Hi April, I applied for it and received it for the two months I was off. It was only a problem getting my medical records sent to the insurance company. But when they were sent, it went very smoothly. I was already back at work before I got the money, so they cut me one big check. Deb

I may as well add that I wear the Mediven brand, too. I'm 5'6 1/2" and weigh 140. I tried another brand that was a great deal less, but they were too short, and I put my finger through them trying to get them up. They were plenty tight, but just too short. You can get the Mediven Elegance with MediSilk 30-40 pantyhose for $73.56 with the discount that Nina wrote about. The discount code is spring04. The company is Ames Walker and they have a web-site that you can look at all the products. If you spend over $60, the shipping is free. When I was released from the hospital in January, my husband went to a supply store here in Charlottesville and bought me a couple more pairs. They cost $99 apiece at the store.

Some of what you think are causes actually sound like symptoms of POTS, although the sinus infection might be allergies. I had swollen lymph glands and I had loose bowels, but lost weight because I couldn't eat, and I started getting migrain-like headachs as my tachycardia got worse. Most of those things went away after the florinef started working, but I still have a lot of GI problems. Yes, POTS can be caused by a virus. There is some school of thought that if that is the cause of it, then it sometimes goes away as spontanously as it came. POTS also can show up quickly or it can take months before it can be diagnosed. So it's very likely that you could have had a virus and then you contracted POTS all within a couple of months. In my case it was months before I had full blown POTS because I didn't have the tacycardia until later. I'm so sorry that you feel so bad today. Are you on any medications?

Wow April, I had no idea they were available to purchase in drugstores. I'm going to stop by CVS TODAY and get one!!!!! I am positive the midodrine is making my BP too high. As the day has progressed, I've felt so much better without it. Thanks again for the suggestion!!!!!!!!!!!

Hi Sue, I don't have NCS either so I can't comment on the medications. However, I can comment on the compression hose. I have gone without them and my legs are so tired and achy that it's worth any ridicule I might encounter. I wear them everyday to work with dresses, skirts, and slacks. Actually, I've never had anything negative, only my friends have asked if they were hot. There are so many choices and colors to choose from it you look on line at the Ames Walker website that Nina posted a couple of days ago. Soome look almost silky, and some look more like tights. If you don't like them, I think you can return them if you haven't worn them. I recommend the panty hose. They are so much more comfortable. I was given the thigh highs in the hospital, but I usually only wear them at home. They are open toe, and I find that annoying, and the band at the top makes me break out in heat rash, and it's soooo tight I am red at the end of the day. Good luck with your appointment. I'm glad you are being proactive about your treatment. Deb

Hey LilBanana, I was interested to read that your doc said your tilt table test was the worst he had ever seen because that's what my doctor had said about mine. It was one of the scariest things I ever went through. I was also interested in your medications. Were you taking Proamitine for low BP? Did the Florinef help enough that you didn't need the Proamitine any more? The reason I'm asking is because I think my blood pressure is too high because of the Proamitine. I've been feeling horrible for a week now, and yesterday was about the worse I've felt in months. But I realized that the symptoms start right after I take the Proamitine (midodrine). So I didn't take any more of it yesterday or today. I don't feel quite right, but I sure feel better than I have been. I sure would like to know how so many people on this forum know what their BP is. I have no way of knowing unless I go to the Doctor's office. Hope you're doing okay with your finals, Deb

Hi VeryBlue, Try to calm down and rest as much as you can today. You probably aren't dying, but I know how that feels when you feel terrible and don't know why. Try to keep your fluid levels up by drinking a lot of water and something like gatorade that will replenish your electrolytes. Eat something salty, too. If you have them, wear your compression hose. The panty hose are the best. As far as it being progressive, it's not in the sense that your organs will start to deteriorate. But it is in that most people seem to have good spells and then bad spells. And sometimes a bad spell is worse than any previous ones. For myself, I think that stress plays into how bad my bad spells are. Even having good news can be a stressor for people with POTS. I had a birthday party on Saturday, and I felt bad the whole time, and even worse the next day. I feel sure you'll start to have good days again, soon. Read through the other posts about how to keep your blood pressure up. Hope you feel better, soon! Deb

I don't know what causes that, but I've had it, too. It is very scary.

You're so sweet! Happy Mothers' Day to all of you, too!

Sue, so glad you're home. So much of what you wrote brought back memories of some of what I went through, too. I had something close to what you had, but I didn't have the seizures. I had trembling of different parts of my body, especially my eye lids. But it was the heaviness and the fuzziness and weakness that was so hard to deal with. That was when I was put on Florinef, but it took about a week to start to make a difference. I was considerably better, but it took a llllooonnnngggg time to recover from the effects of that bad spell. I was in the hospital for eleven days, and I was so weak when I left that I couldn't walk for more than about two minutes. I did get better and stronger, though, with each passing day. I hope that you will too. Like Nina, I have periods of good days, and then a period of bad days. It seems so unfair when the bad days hit because I never seem to have any warning. It's just WHAM and I feel terrible. But they always go away, and then I have several really good days when I go to work and work in my gardens and almost forget that I have POTS. I hope the increased meds help you, and that your good days will start right away. You've had enough bad ones!

Katherine, that would be so nice if you could send her a card. She was supposed to have Doctor's appointment last week, I think. One of her last replies said next Tuesday, so that must have been the 27th. I wonder what could have happened between that and the horrible episode she had on Thursday/Friday. Please tell her that we are all thinking of her. Sue's Daughter, Could you give us the name and room number for your Mom? We'd like to send here a card. How is she doing today? You and your family are in my thoughts.