Deb

I fogot about the fries! That's definitly the best way to get salt! I also forgot that if you like tomato juice, Campbell's brand has added sodium and potassium, and it's more than what is in Gatorade without the added sugar! I also love OLIVES!! I think that's a Pennsylvania thing. Hardly anyone here in Virginia seems to love them like I do. Too bad. There're great. Oh, and salted nuts. I like cashews. They have the added bonus of providing good-fat and protein. My diabetic husband is supposed to eat 1/2 cup of nuts a day for a snack, so I think they are probably good for most people.

Hey, I buy from them too. They are by far the least expensive that I've found. I like waist high ones. I tried the thigh-hi, but they are too tight at the top. Deb

Thanks for all of your replies. I made an appointment with the cardiologist I saw when I was in the hospital being testing to see what autonomic problem I have. I liked him a lot, and he got me in the end of next week. I had all the tests that are normally done to rule out heart disease, so the likelihood that it's a heart attack is pretty slim. But the pain was so bad that I just kept focusing on it. I know that I shouldn't, it's just so hard when you're hurting. This sounds pretty silly now, but I kept thinking that I was going to die right before my birthday (which is today). I probably made it worse. I am going to keep my appointment to see my neurologist and discuss this with him, along with seeing the cardiologist. I let you know what they say. Thanks again, Deb Morgan/Debbie, There are a lot of Debs. I had three is my class when I was going to grade school and high school. I work with two others right now. I think that most of the Debs I know are late thirties to late forties or a little older. I'm 47, today!

I try to eat salty foods, but it doesn't seem to be enough so I started putting a half teaspoon of salt in a large glass of water each morning. It really has helped me. I've been doing it for about four months now. Sometimes I also have my salt water in the afternoon if I am going to be doing something more strenuous like grocery shopping. I also drink a large glass of water just before I take a walk or do anything more than I normally do during the day. It seems to help.

Thanks for the advice Morgan and Jackie. I started to feel a whole lot better around 2:00, so I didn't call the doctor. I felt normal by the time I went home, and I had a very restful sleep last night. I have an appointment on the 22nd with my Neuro, and I'll talk to him about it then unless I get the bad pain again. I don't have a cardiologist that I see regularly, so I think I'll ask for a referral. I find it hard to know which doctor to call when I don't feel well. My PCP doesn't know much about POTS, and I'm trying to find another one that does. The Neurologists only will see me for the POTS, but if it's anxiety (caused by the POTS), then I have to see the psychiatrist. When I go to the ER, it is such an awful ordeal that I have been reluctant to go back. I was there seven times in three months. I'm sure the worry of the pain was making the anxiety worse, too. It's such a vicious cycle with POTS. I think it would be so much easier to deal with the other POTS symptoms if I didn't react so dramatically to every stresser. I know some of you have symptoms that are so much worse than mine, but every time I have a bad episode, I react like its the first time. It can be so darn scary. Well, that's enough for now. I'll let you know what the neuro and cardiologist say. Thanks again, Deb

I have been having that awful chest pain again. It feels like something pressing against my chest with the weight of an elephant, and periodically a pain shoots up my right side into my armpit. Sometimes it feel like I can't breathe. And now I have a splitting headache. The pain seems to be moving up into my shoulders and neck and down to my arms. I have never had the chest pain this bad. I don't know if I should call a doctor or wait. I think Nina, aka Mighty Mouse, wrote once that she sees a doctor if a new symptom lasts longer than three days. I go so often anyway, that I just hate going if there isn't anything that can be done. Any advice? Does anyone know of anything that can relieve it?

I take a 100 mg tab at night because it made me sleepy in the mornings, too. I was on Lorazapam but I don't need to take it any longer. When I was taking the two of them, I didn't feel doped up. I'm not familiar with Bisoprolol but I assume it's a beta blocker with the lol at the end. I believe there are many people who take Zoloft and a beta blocker with good effects. Morgan is quite right about starting out with a low dose and working your way to a higher dose VERY SLOWLY. It can cause increased anxiety when you first start on it, and each time you increase it.

No, I don't have any heart problems, either, except for the tachycardia and orthostatic hypotension. I had all the tests that Merrill had, and all of my organs are as healthy as a twenty-year old's. (I think they were being kind.)

Danelle, I can't answer most of your questions, but I would like to address your question about what are normal POTS symptoms. I have POTS, and I wake up in the middle of the night, too, with most of the symptoms you are having - sweating, hear-racing, short of breath, confused, trembling, etc. It happens occasionally during the day, too, when I'm sitting at my desk at work. My heart races for no reason, and stops just as quickly at all times of the day. I don't have the blue toenails, but I've heard of others that do. My BP used to go up and down, but I think the florinef has helped even that out. I take midodrine, too, because my BP was more low than high during the day. It made me feel pretty whacked out until the florinef started working. I don't have the neck and shoulder pain, but I do have the leg pains, stabing pains in my chest, pain that feels more like pressure in my chest, occasional joint pains (especially my big toe and right knee), and headaches that come and go. IVs and oxygen make me feel better. YES, I have felt like a prisoner in my own body. I sometimes cry because I don't know what's going on inside of me. And YES!, I am afraid of being alone and I get scared that I'm going to die without being able to say good-bye or I-love-you to anyone. When that happens I try to calm myself down and remember that POTS is NOT life-threating. It sure can feel like it, though. Just remember that you are not alone!!!!! You can come here and read what others have to say, and write what you need to say. It always seems to make me feel better. I used to be scared about every new ache or pain, but I think that we really DO get used to the pains. Just knowing that others are going through similar experiences is so reassuring. It was the not-knowing that was driving me bonkers. Keep writing and asking questions. The bad times will pass, and you'll have good days again.

Ernie my heart goes out to you. It's so hard to lose a sibling. Welcome to the group, and congratulations on completing your studies. That must have been really hard to do. What an accomplishment! Good luck as you enter this new journey in your life. Deb

I feel so much better knowing that some of you forget things like I do. I thought that I might have something really wrong. Especially when I, too, woke up one morning and didn't know who I was. Several times last fall the docs thought I might have had a stroke although they found no evidence of one. This was when I was starting to have my worst period pre-diagnosis. But I still think sometimes that maybe they just didn't see the damage. Now that I've found out that many of you have the same symptoms, it is so much easier to accept. I still drive because I always recognize where I am, I just can't seem to remember how to get to where I'm supposed to be going. I have always been able to find my way home, though. I also forget words. Like asking my husband to get me something out of the refrigerator, I forget what the refrigerator is called. These bad episodes always seem to happen towards the end of the day when I'm tired. Thankfully they don't last long.

That is so wonderful!!!! I did the same thing. I got my Associate's at a community college and then went on and got my Bachelor's in Criminal Justice. You keep trying to get all the education you can. It's something that you will never regret. You have all kinds of oppurtunities ahead of you. Good Luck! Deb

About the midodrine and florinef puzzle. I was started on both, too. My blood pressure kept getting really, really low that the docs were afraid of a stroke. I'm 46 and not as young as you. I really didn't feel any better after I started both of the medications, in fact I felt a lot worse. However, I felt remarkable better about seven days after I started the medicines. The doctors said it was the florinef and the added sodium because I was finally keeping the fluids in my body instead of excreting them through my bladder. I will never forget the day I started to feel better. It was the first day in weeks that I was able to take a shower without someone holding me up, or having to sit in the tub halfway through. It was wonderful. I don't take as much of the midodrine now. I think I take about one-third of the original dosage. The florinef works very well for me. Good luck Danelle, I'll be thinking of you during the week and hoping you'll start to feel better.

Hi April, I hope today is going well for you. I tend to have a couple of bad days in a row, and then several good ones, so I hope today started a run of good days for you. I seem to remember that florinef takes several days to start working. Keep drinking and (if your doc said to) consuming a LOT of sodium. Don't forget that florinef causes the potassium in your kidneys to be lost, so eat a lot of dark greens and bananas and prunes, etc. I take Zoloft, too. You may remember from the first time you took it that it takes a week to three or four weeks to kick in. I had a bad reaction to Paxil which is another SSRI similar to Zoloft and Lexapro. That whole period of going on and then off of Paxil was awful. I used a tiny dose of Lorazapam to ease the anxiety symptoms from the Paxil and until the Zoloft started to work. I didn't need it at home as much as I did at work. On work days I took one pill (I think it was either 0.1 or 0.5) each morning and one at night. I then cut out the night-time dose and took only the morning one. I only take half of one now. I'll be off it in two weeks. I'm not encouraging you to take more medications, especially since you're going off and on different ones, but I can honestly say that it helped me a lot. I don't think I could have worked in the condition I was in. You hang in there. I know you've heard this and read it many times but it's something you may not believe when you're feeling really bad - this will pass and you will have better days, and soon.

I don't have any other suggestions about flying other than to stay away from carbonated drinks. Water and tomato juice are good choices. As for emailing your new doc, I email mine quite often. She encourages it. It saves a lot of time when I see her, because she already knows why I'm coming and what questions I have, etc. I love it. I don't think your new doc will be offended, but he/she may not be comfortable with it due to the HIPAA privacy rules. But if he/she doesn't want to communicate that way, he/she will let you know. I just heard a report on NPR this week that talked about doctors using email more.

Yup, it's all of those things. The worse for me is the short-term memory loss. It can be positively scary. While driving to the grocery store a couple of days ago, I couldn't remember how to get there. The looking and speaking and acting stupid is bad enough, but being lost is the pits.

Hi April, I take Zoloft. I started it around March 8th. I started on 25 then went to 50 then 75 and now I'm on 100mg. I just saw my psychiatrist on Wednesday and she said I could go to 150 if I have any more problems with anxiety. She eased me up to the 100 mg dose over a six or seven week period. Each time it was increased the anxiety was a little worse, but it got better in 2 or 3 days. The 100mg. seems to be working very well for me. I have been on that dose for three weeks now, and since last Friday, I haven't had any brain fog episodes, the tremblling is only very slight in the mornings, and the chest pressure is gone. I also have been sleeping better. I have been on a tiny dose of lorazapam since January, but it's down to half of the original dose, and I'm going completely off of it over the next two weeks. The lorazapam helped while I was first taking Paxil and then started on the Zoloft. Now I don't need the lorazapam. I started taking the Zoloft in the mornings, but I was sooooo sleepy. I now take it before be, but I was still getting very sleepy around mid-morning. I started drinking a cup of coffee with breakfast after I have a quart of water, and I don't get the sleepiness much anymore. I think the Zoloft is amazing for me. It has really helped me with so many symptoms. I was alway slightly light-headed and my muscles twitched and my gait was lopsided. I was always walking into door frames and leaning against walls. I had three panic attacks shortly before I started the Zoloft while on Paxil, and I had one about two week after that, but there haven't been any since. I feel better now than I have in a long time. I know part of that is due to keeping myself hydrating with water and salt, and getting enough potassium and other supplements, but the Zoloft has really evened me out. There are some who think the SSRIs are bad for us, but they aren't for all of us. And sometimes it does take a bit of trying to find the right one. I think it it was definitly worth the trying and the period of worse symptoms that I went through because I feel so much better. If I could just get my GI problems resolved, I'll be almost me again! Notice I wrote almost . I know I'll never be the same, but I am dealing with the problems and working with them. I have to rest a lot more, but it puts things in perspective now. I can play with my dogs or sit on the deck and not feel as if I should be doing something else because I'm doing what I should be doing for me . I'm taking the time to enjoy the things around me. I'm having fun watching the corn coming up in my husband's vegetable garden. It's a new world for me, and I think I like it.

That's a good description about it feeling like glue in your lungs. I've had it very bad recently. I think someone said it was like breathing through the end of a pen. For me it's like trying to fill up a balloon inside your lungs. There is a lot of resistence but if I keep breathing in, I can get my lungs to fill. It's very uncomfortable.

Gayla, you are too much! I can just picture that HUGE needle coming at me!

Asthma can show up at any time. I had it as a teenager, and then nothing until BAM! it hit me even worse when I was 37. You really should be tested. Some of the medications that are used to treat POTS can interfere or worsen asthma. I have trouble breathing like you describe, but it usually happens when I'm in bed asleep. I wake up gasping. I also have trouble swallowing, and it only happens now when I'm in bed. It's just like you describe, as if my body forgot how to do it. Both of these things have lessened greatly since I was diagnosed with POTS and started medication for it. I also occasionally have to take several deep breaths during the day because it feels like I can't get the air in. It was checked, but no one found any cause for it. My lungs were always completely clear. I have wondered, though, if the breathing need isn't somehow related to my body needing more oxygen.

Migrain, go ahead and have a good cry. After all, you have lost something, the you that you used to be. But after the cry, snap out of it (the sound of a slap) and don't allow your husband or anyone else to make you think that your illness is not debilitating just because it's not well known. We all know what it's like. I'm glad you do have some good days. I sure hope they soon start to out-number the bad ones for you. Deb

I worked for years as a Program Manager in administration for the federal government. I was a Logestician. I was almost never sick. I had a year and a half of sick leave saved up when I left. My husband retired and I resigned my position so that we could move to VA where we both wanted to live. I took a year off to get the house and yard and veggie garden in shape. It was during that time that I started having dizzy spells, gastric problems, blood pressure problems, heat intolerance, fatigue, and weight loss. I got a job at the UVA Medical Center and kept losing weight, blood pressure was wierd, up and down, but nothing was found during the routine blood, urine, and ultrasound workups. I believe that because I worked in a hospital, like Runnergirl said, I was more aggressive about finding the cause. There was more pressure from my collieges to find out. I have several friends that pulled strings with doctors to help me. Even so, it was several more months before they could piece it all together because of all the strange symptoms. As soon as they knew it was POTS, though, they started me on medications while I was still an inpatient so that I could be monitored. That was great because by the time I went home, my medication regimen was pretty much worked out.

Nina's right about the antibody being rare, as opposed to often. I had the test done, along with several others, because the neurologists thought I might have a tumor that was secreting antibodies that were attacking my nervous system. They also wanted to check for other antibodies (I think they are also called markers) that were created by viruses that could also be attacking the nervous system. I believe the test is called a titer test. Anyway, I had several tubes of blood taken from my arm under special conditios, and it was sent to the Mayo Clinic. All of the tests came back negative, yeah for me!!!!!!!! So I was happy, but somewhat let down, too, because they couldn't find the cause of my POTS. But like the docs said, it is worse to have a problem with the autoimmune system, and far worse to have cancer. If your doctor thinks you might have a problem, then get the test so that you'll know one way or another. But don't get your hopes up that it will change anything for the better. It will give you peace of mind if it comes back negative.

Being relatively new to the POTS family (diagnosed about 5 mths ago), I'm still trying to figure out my own symptoms and what works, etc. After I was diagnosed, I was given a pair of 30-40 gradual support hose, and told to put them on before I get out of bed, wear them all day, everyday, and not take them off until I get into bed. I was also told to exercise my leg muscles, primarily the calfs so that the muscles could help constrict my veins better. These things are to help return the blood from my legs to my heart quicker so that my brain can get a little of it. That makes perfect sense. What I'm confused about is that I have never had the blood pooling in my legs, not even a little bit of swelling, ever. Before I was diagnosed with POTS, I was told that I had orthostatic intolerance and standing tachycardia. The increased heart rate when I stood was making my heart send out messages that eventually made my blood pressure drop and I collapsed. (That is a very general explanation because I really don't remember the details; I was pretty sick when it was explained.) Within five weeks I went from an occasional spell to daily multiple spells. So when I was diagnosed with POTS and told about vasoconstriction and blood pooling, etc, I just accepted it all and did what they told me to do. But now I'm thinking that I must have had the orthostatic intolerance because of low blood volume. Everytime I was seen by the ER or admitted to the hospital I was told I was dehydrated. So, all of this is leading up to my questions, 1) has anyone else had orthostatic intolerence that was NOT do to blood pooling, and 2) has anyone else corrected their orthostatic intolerence by volume loading with extra electrolytes, especially sodium and the use of Florinef?

Good grief Nina, what an awful weekend you must have had! I didn't realize how much the SSRIs help other symptoms besides anxiety. I hope you're having a better day today! Deb