LindaJoy

Persephone, I have been worried about you all day. I'm soooo glad you are doing better!! Please keep us posted on your progress as I know how, with POTS, we can all go up and down at a moment's notice. You have too much to celebrate right now to be so down!!! Hang in there. Linda

Hey, let me know what I can do to help because I, too, would love a bracelet and a t-shirt. I'm making it my life's work right now to get the word out about POTS, and wearing these things could really help. Linda

Persephone, I, too, am quite concerned about your blood pressure being that high, AND the fact that you're slurring your words periodically. My mom's blood pressure wasn't nearly that high a few weeks ago, but it was high enough. When I called her doctor's office, her doctor was out and would be for two weeks, so they told me to get Mom to the ER or community medical center right away as she was in danger of a stroke. Mary from Ohio was definitely correct in saying that. I told my mom that the doctor said she could have a stroke, not to frighten her but to get her to take her condition seriously and do something about it. Not that you, Persephone, aren't taking your condition seriously and don't want to do something about it--I understand your hesitancy to go to the ER. Believe me, I hate those places even more than I hate the smell of liver, and that's pretty bad. But, I do think your high bp and other symptoms need to override your fear of bad treatment right now. You need to get that bp down to a safe level. Are you on a bb? My mom was put on Toprol. I take Cardizem CD, a calcium channel blocker. Mom's bp came down within two days of beginning the Toprol. Please, keep us informed. We're all very concerned. As far as the trip, I'm sorry, but it wouldn't be good to go flying with a bp that high. POTS patients don't fly well to begin with, even when not experiencing symptoms at the time. Having a bp that high is really just inviting more problems. I am soooo sorry you're going through this, especially after being so happy yesterday with such good news. Please keep us posted. Linda

Thanks, everyone. I'm sorry to be such a wet noodle. I guess I was expecting too much too soon. And, I'm starting to get more of this from my family: When are you going to get better? Haven't you been sick long enough? I thought your medicine was helping. My mom doesn't even get why I can't travel three states away with her this month to visit relatives. I'm feeling worthless. I just want to cry. I'm beginning to hate nighttime because, one, I can't sleep and two, the attacks are so much worse at night. I'll go now before I make everyone depressed. Again, I'm sorry to be so down. I know I have to just keep doing what I'm doing, not overdo, etc. I haven't learned my limit yet, I guess. I'll say it--I wish I could know what it's like, for just one day, to be healthy: no severe allergies, no POTS, no fibromyalgia, no hypoglycemia, nothing. Thanks, everyone, for letting me cry on your shoulders. I'm into my third month of being really down with POTS, and I think it's just starting to really get to me. Hope you're all doing well. Linda

Persephone, CONGRATULATIONS!!! It took me six years to get a four year degree--it doesn't matter how long it took, just that YOU DID IT!! Now what are you going to do with it? Linda

Hi, everyone. I've been feeling really good for the last week or so, since I started taking Florinef. Then, my family doctor started to lower my Zoloft. That was okay. I had some anxiety, but that was it. Yesterday, I felt good, so I vacuumed, did stairs, helped move some furniture, made supper, etc., virtually everything I haven't done in months! Well, last night, after I took my lowered dosage of Zoloft (about three hours later), I began to have some bad anxiety and couldn't sleep. Then, around 2 am, I awoke with a start and started to have tachycardia, irregular beats, sweaty feet and hands, shaking, chilling, had to pee badly, which getting up only made my symptoms worse. About an hour later, I began to feel better. I felt like I did two months ago, when my POTS problems all began. I could have cried, but I didn't have the energy. Will it never end? I am so depressed right now. I thought I was getting better. I thought the Florinef was my miracle drug. I thought, wow, I can be normal. Now, I feel like it will never end, that I'll always be sick, that I'll always have to limit my life, like I'll never be healthy. I guess, knowing POTS, I never will be, and that stinks. Was it the lowered Zoloft, all the extra activity or both that set me off? I just want to crawl in a hole and not come out again. I'm sorry to go depressingly on and on. Could you all please let me know what you think caused this major setback? I'm still not feeling very good today, lots of irregular beats. I feel like I haven't made any progress in getting better in the last two months, like I"m right back at the beginning. I feel like giving up. Please help. Linda

Wow, Karyn, you've really moved some POTS mountains lately. Bless you! Yes, I am going to carry some of my medical paperwork with me wherever I go, just in case, with the diagnosis! Thanks, Linda

I haven't driven in over two months, and I'm not very excited to give it a try just yet. My doctor said that if I have a POTS spell while driving, even though I get plenty of warning before I pass out, I'm to pull off to the side of the road and call my husband to come get me--I'm not to drive again for awhile. Well, I'm not real thrilled at the thought of being stranded, so I just don't drive. I get terrible neck pain and headaches while driving, then I get really tired, for days tired. It's better for me to just hitch rides with family and friends right now. Linda

Thanks, everyone, for your support. I dropped off the packets yesterday. I hope I get some positive feedback, like they're actually learning about POTS now!! Wareagle, I downloaded information from the DINET sight, mainly the introduction to POTS and the symptoms list that follows. Then, I have a report by Dr. Grubb, that I just got from the library at the Cleveland Clinic, that I made copies of and included, and I also found a great article by Johns Hopkins Children's Center: Chronic Fatigue Clinic, that talks about NMH and POTS. I don't have the website for it, but the article is called, "General Information Brochure on Orthostatic Intolerance and Its Treatments." It gives some really good info on POTS. I also include a copy of my TTT results so that the doctors here, who aren't familiar with TTT results, can see what a POTS patient actually shows during this test. Oh, and I give them my contact information so they can talk with a real POTS patient if they would like to. I've been told by some health care people here that doctors don't like to be shown that you know more than they do. I've lived that, for sure. I just hope they pick up a little bit from these packets so they can start treating POTS patients instead of dismissing them. Oh, what's great is the article that Dr. Grubb did, that I got from Cleveland Clinic, specifically says, "These patients (POTS) may frequently be misdiagnosed as having panic attacks or chronic anxiety." I highlighted this section to give to the doctors. Hope this helps. Linda

Hi, everyone, This is very off topic, but I'm working on a magazine article for a local family magazine I write for, and I could use a little help. Since many of you are moms, I'm hoping you can help me. The article is to go in a column called "Nutrition Nook". I will be giving tips, from real moms, on how they get their children to eat their vegetables, such as putting peanut butter on celery or making cute flowers out of tomatoes. If you have any words of nutrition wisdom that I could give to my readers, please let me know. Also, please include your name, city and state (and country) you live in, the first names of your kids and their ages. If I get enough replies from our forum, I'll copy and download the magazine article so you can all see your names and maybe make a copy for your scrapbooks. Thanks, everyone. I do know this is very off subject, and I apologize for that. Yet, you all know so much about nutrition and health--I needed to come to the experts!! LindaJoy

Hi. I have two questions I hope you all can help me answer. One, I got my paperwork from the Cleveland Clinic, with my test results and diagnosis. One of the things Dr. Fouad diagnosed was hyperkinetic heart syndrome. She told me, after my hemodynamic testing, that my blood circulated through my system too quickly. Is that what hyperkinetic heart syndrome is? I looked it up on the Internet and found some definitions, but none of them matched what Dr. Fouad said. Also, what causes this syndrome? Or, is this just another name for POTS? Two, my new family doctor, of which I'm becoming increasingly disappointed in, wants to take me completely off of my Zoloft, although Dr. Fouad thinks I should remain on at least a small dosage to control my vasovagal response. What do you all think? I was actually getting anxiety from my normal 100 mg dosage, so I wanted to lower it, but I don't think I'm ready to go completely off of it. I began Zoloft back in 1999, when my POTS was really bad, and it actually helped. I do think I need it to control some of my symptoms. My new gp does not listen any better than my old one--and I had such high hopes since she said she knows all about POTS. Anyway, what should I do? Dr. Fouad said she doesn't like to overrule family doctors, but heck, I've only seen my new gp once! Any information or suggestions would be greatly appreciated. Thanks, everyone. Linda

Morgan, I read your entry to my husband--I hope that's okay--because we just had our own nightmare ER visit, though it was not nearly as horrible as yours. I am sooooooooo sorry that you had to experience that! I'm more than sorry, I'm totally irate at those lame people who call themselves medical professionals!!!! I have severe allergies, and I will break out in hives when I've taken certain medications or eaten certain foods. Never has it been said that I have anxiety when I've shown hives!!! What morons! I really hope, when you get your strength back, that you call the ER administrator to complain and maybe even offer the websites for your condition so they can educate themselves a little about POTS. Can I help you in this? I'd be happy to run some information and mail it to the hospital for you, if you just let me know where I need to send it. I'm just livid by how you were treated. Bless your heart, you hung in there. My heart goes out to you, honey. If I can help you, please let me know. I so understand what you went through, though, like I said, my treatment wasn't nearly as bad as yours. But, I think, through sticking to our guns and offering education, we can make an impact in the medical community, eventually--or, am I just dreaming? I hope not. I hope all of these negative experiences haven't been for naught. Get well, Morgan, and please keep us posted on your bump progress!! LindaJoy

Hi, everyone, Anyone who read about my ER experience last week knows that I called and reported my feelings about the doctor I had who blew me off and said I had depression, even though I told him of my POTS diagnosis. Anyway, I didn't think I would ever hear anything back. I did. It seems, the patient advocate at the hospital I called contacted everyone she could think of to tell them about what I told her about POTS. She said she was received with great interest. The educator at the hospital is even considering putting POTS on the agenda as one of the classes docs at the hospital will need to take. To prepare, they asked me to put together a POTS packet for them to review. I had another doctor's office call and request POTS information after that. I thought, Oh, this is too good to be true. They put me down as a POTS patient who would be willing to talk with them about POTS. I would LOVE to educate some of the doctors around here!!!! I put together three packets so far, one for the area hospital and two for individual doctors (I'm sending one to the doctor I had years ago who told me to just keep taking Xanax so I'd leave everyone alone). I'm excited about the progress, but I don't want to get my hopes up too much. We all know how doctors can be. Just wanted to let you all know. Oh, and the patient advocate said that she reported the doctor to his supervisor, and I should be getting a call once he is talked to. I hope so, even if it's just to say that he was warned to take patients more seriously from now on. Linda

Hi. I have to chime in with my love of my compression hose. I wear the thigh high every day and feel like I can stand and move around better with the hose on. I only take them off to bathe and sleep. I, too, have blood pooling once the hose come off, but while they're on, I feel pretty good. I've never worn them over the summer, so we'll see how that goes. Do the white ones go well with shorts? Linda

Hi, everyone, Again, thank you for your responses. I must be getting stronger as I age because, ten years ago, when the POTS first hit me hard, I would have never, ever dreamed of doing what I did in the ER. I took whatever the docs said, which was usually, "Anxiety, panic disorder, go home and call your shrink." Now, I'm just so tired of it all. I think, too, after reading all of your stories here, and what all of you have been through, too, with trying to get help and being told it's all in your head, that made me even madder and more determined to stand up for what we all have. I'll let you all know if anything is done about my telephone complaint. So far, I haven't heard a word. It will probably be filed under "Not important enough to reply" and that will be it. I'll let you know. Again, thanks for your support. I'm glad to have been strong enough, at that time, to stand up for all of us a little bit. Linda

Hi, everyone. I'm still deep in my POTS hole. I'm sorry to see so many here with me. Maybe, soon, we'll all be out of the hole and onto better days! Take care, all! Linda

Hi, everyone, I just wanted to say I appreciate all of your responses. I'm printing out the thread so that I can sit somewhere with my feet up to read it through, then I'll get back with all of you. I'm having a very hard time right now with my POTS. My doctor in Cleveland thinks I sat too long at my computer Thursday (over 2 hours), and that put me in a POTS hole. She told me I had to start taking the Florineff because I wasn't retaining any fluids, so I started it yesterday. I'll let you know how it goes. My bp is still all over the place. I did have my adrenal glands checked for a tumor years ago, and they were fine. Thanks for checking! Well, need to go relax--I just can't sit for very long right now. I'll be in touch with you all soon. LIndaJoy

Hi, everyone, I had to give in and go to the ER last night, because I was having POTS episodes every 15 minutes. I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine. Then, my heart would begin pounding rapidly, then go irregular. After that, I would start shaking uncontrollably and have to pee really bad. Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee. After I pee--can I use this word, or should I say urinate?--Anyway, after my trip to the bathroom, where I pee like I've drank a gallon of water, it all starts again. I did this from 9:15 last night until after 11:00, when we called my family doctor, who said she wanted me checked out, I guess to make sure I wasn't getting dehydrated. Question one: Does the above sound familiar to anyone? Now, onto the hospital visit. I told my gp that I didn't want to go. She insisted, so I went. The ER doctor came in and said he had downloaded my hospital file from the last ten years which showed visits to the ER where they diagnosed anxiety and panic disorder. I told him that I just got back from Cleveland Clinic, and they found that I have POTS. One, he didn't know what POTS was, nor did he care. He didn't even ask about it at first. He asked if I've been anxious since getting back from Cleveland. I said no. Then, he asked me what sleep medication I wanted to be sent home on. I said none. He asked why. I said that my Cleveland doctor told me not to take meds like that because they mask my POTS symptoms, and she doesn't want me to mask them. I told him I don't have just anxiety, I have POTS. He burst out with, "Then why do you take Zoloft?" I told him that Dr. Fouad said that Zoloft is good for the vaso-vagul response to POTS, that it's used for more than depression. He wouldn't listen to anything I had to say. He just kept saying that I have a history of anxiety, according to my records, and that's what he's going with. After he left, the nurse came in, and I told her exactly what I thought of the doctor, then I told her all about POTS. She listened and became more helpful than the doctor. Then, my husband asked if the doctor was going to give my diagnosis as anxiety. She said no, he was going to write depression. We went off. Then the doctor came back in. We said, Do you even know what POTS is? He hee-hawed around, then said, "Uh, it's some kind of disease." Anyway, my system calmed down after awhile, surprisingly, then we went home. This morning, I called the hospital and registered a formal complaint against the doctor. I told the woman I spoke with all about POTS, and she looked it up on the internet, downloaded some information, and is going to send my complaint and the POTS information to the hospital's head doctor, with a suggestion that the doctors get some training on POTS. I also asked if my records with the hospital could be somehow changed or gotten rid of, as I think my past wrong diagnosis will affect my future care. She said she'd look into it and try to help as much as possible. I really hope this helps. One other question. I had a tall glass of milk yesterday with whey protein--my blood results showed that my protein is low. I know that dairy really pulls blood away from the heart and stuff to get digestion going, so do you all think that the dairy could have caused my POTS problems last night? Do any of you have low protein with POTS? Thanks. Any help will be greatly appreciated. LindaJOy

Thanks, Ernie. Your explanations really make sense to me. Linda

Okay, I now have my diagnosis, but I'm not quite sure how they relate. Can anyone help me? I know everything I'm about to say has been talked about here, but right now it's all I can do to hold my head up to type, my neck hurts so bad, so I'm not going to be able to be on here long to research. Thus, I'd appreciate any responses, even if you're repeating. Thank you. Linda I have: POTS with Vasovagul (? spelling) response Venous blood pooling (30%, which I was told by Dr. Fouad is extreme) Rapid circulation (What would cause this?) And, maybe, low blood volume. I didn't hear this, but my husband said he thinks this is something that Dr. Fouad mentioned, as well. What could be causing all of this? Are the rapid circulation and blood pooling somehow related? Does rapid circulation have anything to do with hyperadrenergic? Oh, my doctor said my autonomic tests came out OKAY! No problems. Also, my pituitary tumor is GONE! After ten years, it's been absorbed by the flesh of my pituitary. Now, I'm left with the above and don't know how any of it works. Any help / explanations would be greatly appreciated. Thanks! LindaJOy

Thank you all, soo much, for your support. I took your advice and just concentrated on my tests at Cleveland Clinic, instead of thinking about the stress from my late job. I feel better now about it. I guess I'm still going to be allowed to write for the magazines, just not the newspaper (which is where my career--what little career I can have with POTS, was taking me). But, you're all right on--I quit because of principals, and I can't continue to work for those who don't have any. I do need to move on. Although, right now, I just need to get better, like to the point I can sit at this computer for longer than five minutes without feeling horrible! Thank you, everybody. Linda

Hi, Ernie, It was towards the end of the test, after I'd been sitting up, with my legs dangling off of the table, for awhile. It was like the tilt table--my blood pressure began dropping and I just went black. I'm really nervous that my results weren't normal POTS. Can you shed any light? Thanks. Linda

Hi, everyone. Just wanted to let you know that I just got back from having my hemodynamic test with echocardiagram, and my autonomic tests: sweat test, ice water, sniff test, blow test, and some sort of adrenaline through my IV test. I didn't respond, at all, to any of the autonomic tests. My blood pressure may have gone up a little, or dropped a little, but not much. What does that mean? Now, during the hemodynamic test, I nearly passed out again, right at the end, when I'd been sitting for quite awhile. In fact, I think I probably did black out for a bit. The nurse said that wasn't very normal with this test. The tilt, yes, but not the hemodynamic. What does THAT mean? I'm supposed to meet with my doctor tomorrow, to talk about the results, but if any of you can help me to be prepared for what she's going to tell me, I would greatly appreciate your input. I'm still at the Cleveland Clinic. The guest house offers us free use of a computer, but we have to share it with all of the other guests, so I'm hoping I can make it back on before I see the doctor tomorrow. Any questions I should be sure to ask her? Thanks, everyone. LindaJOy

Thanks, Roselover, Miriam and Morgan, I've told myself that I'm better off because I don't want to work with people who do underminded things that hurt people, but right now I'm their target and it's made it very hard to deal with. You're right that I need to quit talking to those who are running back and telling me things. That's only adding to the stress. Last night, after another horrible day with this job stress, my daughter called, crying, that her marriage is going down the tubes. She lives in another state and said she feels so alone, homesick, etc, and wants me to move there with her. My heart was breaking, while at the same time, my blood pressure was going up, an elephant moved onto my chest, my hands and feet were sweating, I was shaking, I had trouble breathing let alone talking. Finally, I told her I had to go to the bathroom so I had to hang up. Really, it was because I couldn't handle anymore. I truly thought I was going to have a heart attack from all of the stress. Last night, I woke up at 2:00 in the morning with anxiety, racing heart, etc. and had to take another Xanax. I am such a mess right now. We leave for Cleveland Clinic again today, too, for more tests. I don't think they'll need to give me any dye for anything. Just mention The Lima News and I'll give them all the symptoms they'll need! Thanks, you all, for caring. I've decided to cut myself off from anyone to do with this mess right now, so I think that will eventually help. Talk with you when I'm back. Linda

Hi, Stacey, I took a nose dive down there to you Wednesday, and we've been together ever since. We'll make it out, I know we will! Hang in there! LindaJoy