Deb

Hi Cherie, I hope you're feeling better, now. I seem to run in spurts of being tired all the time, and then I have periods of not feeling tired. I've learned to take naps when I'm tired, or else everything else gets worse. Just an hour makes a big difference for me. I don't lie down, though. I nap in the recliner so that my head isn't real low, but my feet and legs are up. Make sure you eat as healthy as you can. If you can't eat much, then try to at least eat a balanced diet. The last thing you need is to run your body down. Hope things are going better for you.

I suppose the leg pains are going to be something that I'll have to deal with. I have found that soaking in a warm bath helps. Mostly I just put them up. I'm afraid to take pain relievers because my Mom has bad arthritis and is super sensitive to pain relievers and can't take any of them. I'm afraid that will happen to me, so I'd rather not even start taking anything. I had the autonomic tests again on Thursday - tilt table, valsalva(that's the blowing thing), and measured deep breathing. My heart rate didn't go abnormally up this time. My blood pressure was everywhere, and I had several of the shaking, jerking episodes with slurred speech and blinking eyelids, so they saw first-hand what happens to me when my blood pressure wacks out. I haven't heard anything, yet, but they sort of hinted around that it might not be POTS, but something else. Lovely. Oh well. If they can just tell me if I should get a wheelchair and handicapped license plate, fine, but I can't keep falling down all time and wondering if I'll ever get better, or always be this way.

I don't know what some of those things are that you wrote about Danelle, but I will try to send you some energy to get through what you need to do. Deb

Hey Merrill! Sounds like you had a good visit! That's good to know about the salt. Someone wrote (Nina?) awhile back that we need an additional teaspoon of salt, so that's been my goal each day. That and two quarts of water. And now I wear the compression hose not because I was told to, but because my legs really feel better with them on.

I think I started it March 10th. I just realized that I believe I started with the 25mg dose. It's the tiny one that comes in a one week supply starter kit with a two week supply of the 50s. I increased from 25 to 50 after a week and then two weeks to 75 and then two weeks to the goal of 100 a day. It was about five weeks from when I started taking the tiny 25 to the 100. Then it was probably two to four weeks before I really started feeling better. I was also being weaned off of Paxil at the same time. So the Paxil was declining in size of dose while the Zoloft was increasing. I had to write it out to keep it all straight! Paxil is the only other SSRI that I've tried. It caused a horrible increase in anxiety when I went from the first tiny dose to the next size dose. That's why I was switched to Zoloft. I hope it works as well for your son. I don't want to step on your parental toes, but I feel that I should tell you that SSRIs can sometimes cause feelings of suicide and physical harm in people under 18 years. There was a lot of information about it in the mass media, as well as here on this forum and other medical related sites on the Internet.

I've had full-blown POTS now for eight months. I can honestly say that the only improvement I've had is keeping my blood volume up which has kept me from fainting/blacking out. All the other symptoms are the same or worse. Specifically, the pains I get in my legs when I stand. They used to come only occasionally, then I only had them mostly behind my right knee and my big toe and foot. Now I have them all up and down both legs, even in the groin sometimes. And they are so painful at times. I also am having numbness and tingling in my legs at least once a day for about 30 minutes at a time. Does anyone else have this? And, if so, what do you do to relieve it? It's gotten so bad in the past week that it's now waking me up at night. HELP!

That was an excellant article. I've been wondering if my headaches were migrains, but after reading that, I don't believe they are. I certainly have the GI discomforts and the muscle pains that the subset of migrainours have between episodes.

Hi Beala, I am taking Zoloft and started with the 12.5 dose. I now take 100 mgs. a day. I felt worse the first two or three weeks, then nothing, but then after about eight or ten weeks I noticed a big improvement. I almost never have brain fog anymore, my GI problems are a lot less irritating, and the anxiety I was experiencing is gone. I didn't want to take another medication, either, but I'm glad now that I stuck with it. I hope your son starts to see improvement soon.

Those posts made me laugh! Sorry, Nina, I wasn't laughing at you, just with you! I too am a clutz. About the funniest, stupidest thing I did was run into a guide wire that caught me under my chin. My legs flew out from under me, BANG, I landed on my back and was knocked unconcious (sp?). It's hard to believe, but I've not broken any bones or gotten stiches, "yet". Just call me black and blue!

I'm sending hugs and healing thoughts to Kelly, her family, and all her friends, especially you, Nina. Deb

Yes, it's all weird. Just wanted to add that I've had those episodes for months, and I too went to the ER. I really thought I was having a stroke. Now I just wait them out. I get numbness in my face, a headache, a pain behind my right eye, a pain in my neck and shoulder, and weakness on my RIGHT side. I sometimes get a shooting pain in my right leg, foot, and/or big toe. And I've had them in my right arm, but not very often. I've had all those urine tests, too, but nothing has ever shown up. It has to be the POTS. It always leaves me tired. Glad you're feeling better, but sorry you have another new symptom.

I think it's something to do with the autonomic nervous system, too, aside from BP or tachycardia. I get it all the time, except when I'm in bed at night. I've told every doctor I've been to because I've had that symptom for years. NONE of them have put any real importance on it, or tried to find a cause. Yes, I do have asthma, but it is not related to what is going on. My neurologists have said, that's not a symptom! Ha! I don't think we all would have it, if it wasn't!!

I have hope, too, that we'll there will be a breakthrough in the research. I've been wondering myself if POTS is progressive. I sure don't feel any better than I did eight months ago when my symptoms all got much worse. That's interesting about menopause. I'm 47 so I could be starting menopause. That might be something to ask my doctor about.

Jessica, I am so happy for you. It should be wonderful to be closer to your parents, and being able to stay in your grandparents house while you get things together sounds great! Don't tire yourself out!

Thank you for the feedback and encouragement. It really means a lot to me! I've been feeling terrible and haven't had the energy to write back sooner. I can't sit or walk for very long before I start feeling lightheaded and nausious and have trouble breaathing, and if I move my head, I get dizzy. It's been three weeks of none stop symptoms. My tilt table test is scheduled for next Thursday. I know how it's going to turn out, I've already had two. Maybe I'll beat my record of the worse response with an even worse one!! Just kidding!! To answer some of your questions, I do get worse when my period is the heaviest. It doesn't seem to help when I increase my fluids, so I think it may be partly due to the increase in hormones instead of blood loss. That's the only thing I've been able to connect to feeling worse. I've been keeping a journal of how I feel and I can't find any connections to anything. I'm not on any medications now except my asthma medicines, the ace inhibitor for the high blood pressure, and Zoloft. The Zoloft took a long time to start helping, two months, but it has made me feel less anxious, and it's made my GI problems better. That's a big plus. I don't think the ACE Inhibitor is working very well, but I don't think it's making my POTS worse. I still have times of high blood pressure, 140-50 over 90s. I have lots of swings of 20 to 30 points. And my heart rate is all over the place. I have noticed that when my blood pressure goes down closer to normal, I feel much more lightheaded than when it's up. Hopefully I'll find some relief soon. I hope all of you are doing well.

You know I'll be thinking of all of you, and sending out get well vibes. Deb

Have any of you had all of your POTS symptoms come back when you were taking midodrine and florinef? I started taking those medications in January and did well for a few weeks. Then I had all the symptoms come back except the near syncope. I've had this happen every few weeks. I've been so bad the past 2 1/2 weeks that I made an emergency call to my doctor. I can't stand for more that about five minutes and then my legs get so weak I can't stand. I feel like I've run a marathon walking into the bathroom. My doctor is setting up another tilt table test. Just before we hung up she said that she is doubting now that I have POTS! I think she is basing this on my nonresponsiveness to the midodrine and florinef. Actually I guess that's not quite correct, I respond, just not in a positive way. The midodrine doesn't seem to help at all, and the florinef caused crushing chest pressure after about four months. Has anyone else heard of another autonomic disorder that has the same symptoms as POTS? I checked my heart rate earlier this week when I was feeling especailly bad, and it went from 76 sitting to 119 standing. I think the two biggest differences in my symptoms to what others have written about are (1) my blood pressure and (2) my normal and bad days. My blood pressure started out normal, went to high, went to low, and is now back to high. I'm taking an ACE-inhibitor to help with that. I don't remember anyone else writing that they are taking an ACE-inhibitor. And my good days are really good. I can actually forget that I'm sick when I'm having a good day. And I always get several at a time. Do I have some disorder that no one has heard of? My husband would like me to go to one of the clinics, like Mayo, to have more testing done. Do you think that I should? I sure don't feel like I'm much better than I was eight months ago.

I'd love to help in some way, too. Steph, I think you posted the observation of your Dentist? I found that amusing because even when I am feeling crappy, I have people tell me how good I look. I think that must be why some people don't really believe POTS is a "real" illness.

I have the thigh ones and the waist ones. I prefer the waist high. I have skinny legs, but the thigh high ones squeeze me too much. I have about eight pairs now because I wear them everyday. I can feel a big difference when I have them on. AND you DO need to allow some time to put them on. I get hot and tired each morning, but they really are worth it.

I'll be sending Stephanie and her baby all the energy I have. You are so thoughtful to let us share this with you. I'll keep you in my thoughts, too. Deb

Gosh Sue, you really have been through it. I was feeling sorry for myself because I had to leave early from my daughter's graduation Monday, and I still feel bad. I don't know why it makes me feel relieved to read about others, but it does. I guess it just helps to know that I'm not abnormal. And I agree with you. Why isn't there more aggressive research and why aren't our doctors trying harder? I can't even get mine to call back. It's been over two weeks since I started this episode, and it's the worse I've had since I was diagnosed. It's so darn frustrating!!!! I'm trying to be the "squeeky wheel", but that's not even mking anything happen. Did you ever find out why you had that really bad episode that put you in the hospital the last time? That had to have been so scary. I could tell from your daughter's posts that she was scared for you. Keep talking with your children about how proud you are of them. I feel sure they know that you are always there for them, even if you can't actually see the events. I bet she was crying because she felt bad that you were so disappointed in having to leave early. She sounds like a very caring girl. I'll be thinking of you.

I have lost all of the hair on my arms, most of it on my legs and under arms, but so far my head, eye lashes, and eye brows have been spared. I was on midodrine and florinef for six months, but my doc had no idea, nor offered an opinion. I think it is somehow related to hormones, too.

Amy, I just turned 47, and I am thin. My mother has the same response about B/P as you, why would I have High B/P when I'm thin and eat healthy, and the only risk factor I have is a parental history of it? I am one of eleven, and only one of my siblings has B/P problems. He's younger than me, and has had it for several years. But his is very mild, like 130/80. (I don't remember exactly.) On the other hand, mine has been upper 140s to upper 90s for weeks, and now is regularly more like 160/100. It really scares me. I really think the B/P is related to POTS, too. I can remember having POTS symptoms (now that I know what they are) back over two years ago. During that time I had a period of high B/P but it was determined to be caused by stress due to a reorganization at work, and us selling our house and moving to another State. A year and a half after that, I had elevated B/P again, but I thought it was due to starting a new job and having a boss that was a real pill. That was in June of last year. Then in November I started fainting, and the ER cardiologists switched around my B/P medicine (they had so many theories, it was ridiculous). That's when I tried the beta-blocker. It made my POTS symptoms so bad, I couldn't function at all. I had to go on short-term disability. Then in December, after finally getting to see a Neurologist (I'd been to the ER five times by then), they discovered the high heart rate and LOW B/P when I stand. So, then the midodrine. I was diagnosed with primary autonomic shut down until I had the testing done after Christmas that indicated POTS. Now here I am again, six months later and diagnosed with HIGH B/P. We never seem to win, do we? I still really do think that it is somehow related. I wish I knew what to do about it, who to see, etc. I am so tired (literally and figuratively) of not feeling well!!!!!!!! Sorry I'm venting so much. I hope that this will pass, too, for both of us. I just don't know if my POTS will EVER get better!!!!!!!!!!!!!!

I've complained about this before, but I am getting so sick of having new symptoms every two to three weeks. I was diagnosed just last week with hypertension. I don't understand it because I had hypotension that got even worse when I stood up. It's in my charts that I have orthostatic hypotension and othostatic intolerance. My heart rate would go wwaaaayyyyy up and then my BP would drop down to nothing. It was normal when I was lying down. I don't know what other illnesses, if any, could cause the POTS symptoms. I had a vast array of tests including a dozen or more EKGs, an EMG, the 24 hour urine collection, the 24 hour heart monitor, I've lost track of the MRIs, maybe four. I've also had more CTs then I can remember. They looked for rare tumors, rare brain function, rare vessel conditions, rare antibodies, and then all the more common things like epilepsy, hypoglycemia, hypothyroidism, liver and kidney disease, and things I no longer remember. They all came back as normal except for the electrolytes levels. Since I started taking extra salt, those have been normal for the past six months. I flunked the tilt table test magnificently! My PCP told me that because hypertension runs in my family, it's not uncommon to believe that I have it with the POTS. I did not respond well to the beta-blocker I was put on, so I just started an ACE inhibitor yesterday. I feel even worse. I still have the orthostatic intolerance that isn't responding any longer to the midodrine, so I feel like I'm falling apart. I barely drag myself to work each day, and then collapse each evening. I would also like to hear from others who have been dealing with hypertension and what medications work for them. I feel like a guinea pig in a laboratory.

Hi Brierrose, I've had almost everyone of your symptoms at one time or another except for the last three. As far as I have understood my doctors, they are all connected to my POTS, whether it's from the anxiety that came after the POTS or from the midodrine that causes the vessels to constrict and thus causes me to have something called myoclonic (sp?) jerk. I just started having the flickering vision, but most of the other spasms, jerks, and shaking is gone. Hang in there. It won't hurt to ask, and to rule out other things. That's what brings peace of mind.