kholdefer

Hi everyone, I haven't written in a while, because I've been feeling crappy but I wanted to chime in on this one. My cardiologist is very insistent that I swim, so I swim. It is very hard, because I am so tired afterwards. I have been experimenting with different methods for a while, and I am in a routine that seems to work for me for now. I swim for about 20 minutes every other day. I feel really good in the water, but like many of you, I've kind of shot for the rest of the day. That is why I do it every other day. It is important for my mental health that I can get a few things done the following day. My card would also like me to do more walking and wieght lifting, but I physically can't right now. Good luck to all of you who are trying to swim. Try not to push it even if it feels good in the water, because you might pay afterwards.

I am going through a lot of the same stuff. I am up for reconsideration but know I will get denied. I already have a lawyer, but its really tiring and disheartening. When I got denied the first time I did curl up in a ball and cry, so don't feel bad. Its really bad feeling like people don't believe that you just can't work. I think we both need to find a new doctor, although that's a lot easier said than done. Whenever I mention disability to my doctor he says, "now why would you need that," or finds an excuse to leave the room. He also wrote me off at my last appointment because he says its been a year and I should be doing better than I am. Maybe we have the same doctor. =) I'm so sorry you're going through this and you have every right to be angry. You also have every right to curl up in a ball for a little while. A good cry can be a lifesaver. I hope things go better. Kady

I have been addicted to sushi lately. I drench it in soy sauce. I like it because its cold, and doesn't make me feel so full. Its hard for me to eat anything lately, but I think I could eat sushi every day. My poor boyfriend is getting sick of me calling him at work and asking him to pick up the take-out I just ordered on his way home.

Hang in there Nikigirl. I often feel very undone after any doctor's visit. How's your support system? Who makes you laugh? You need to do something, anything to take your mind off of this. Even if its something very small. When I'm really sick I feel like my entire life is my illness, and then I start to feel even worse. My grandpa always sprinkles me with "wiffle dust" this imaginary cure-all, when I'm really sick. I have a little left over. I'll send it through this message with all my hopes and prayers that you feel better soon. Kady

Hi everyone, I am contemplating going to Vegas with my boyfriend's family in December. Its a free trip, and I know it sounds a little crazy, but I'm so sick of sitting in my apartment. I think I will use a wheelchair to get around, and see how it goes, maybe. It will really depend on how I'm feeling at the time. When they scheduled the trip, I was feeling much better and I've been feeling pretty bad lately, so we'll see. Anyways, the thing I'm most worried about is flying. I've heard that is really hard for us Pottsies. Has anyone had any experience with this? Any advice, suggestoins.? Kady

I've heard that stress can trigger it, but I don't think it causes it. Before I got sick I went through a really bad break-up with my boyfriend. I think that may have had something to do with it getting as bad as it did, but I don't think it was the cause of it. I'm sorry to hear about the heartache in your life. Kady

I'm so sorry you're going through this. It ***** to be bedridden. I was that way for a long time, and I eventually wanted to through the TV out the window. I think when your meds start working better, you'll be able to get up and around more so that your body can try to adjust. I hope you feel better soon. Kady

I really have the same problem. And exercising really made me feel terrible, plus it was scary to exercise when my heart was going so fast and my bp was dropping. That is why, on days that I can, it really makes me feel better to swim. I don't know if you have anything available, but the water sort of evens your body out and makes it act more normal. I lived in a really small town when I was first diagnosed; what I did was ask the motel if I could use their indoor pool. I think they charged me three dollars when I used it or something like that. I just walked around in the water or swam a couple of laps if I could. I don't know if this would help you, but you could try. Kady

Thank you all so much. I can't adequately express how much this place helps me. Both the practical advice, the support, and the humor (lthomas521), is invaluable. I just laughed for the first time in a few days reading that post. I am going to try to find a different doctor. I am going to show my ignorance; I have no idea what an electrophysiologist is, but I am going to try to find one. The headaches have subsided, but (this is wierd), my left eye is killing me. The last two days it feels so bruised when I move it, and by the end of the night my vision is all blurry out of it. Has anyone else experienced this? Kady

Hi. I'm sorry you have been diagnosed with this. You have come to the right place. I was also diagnosed with POTS after a mono infection. There is stuff you can do, contrary to what your doctor says. You can sleep with the head of your bed elevated, increase your fluids, get up very slowly, and try to do very light exercise. I swim, when I can or do some pilates when I can. I don't know if this is what will help you; you should look at this website, they have very good suggestions. You should probably find a doctor who offers you more help. I know it is hard; I'm in a similar situation myself. I tend to take what the doctor says as final, because they seem like such an authority figure. Its important to recognize that not much is known about POTS, so its important to find a doctor who does know about it. I am going through this doctor search myself. Remember that you are the number one authority figure when it comes to your body and how you feel. I hope this forum helps you; it has helped me. Kady

Hi everybody, Well I went to the doctor last Tuesday for worsening POTS symptoms, bad headaches, numbness and tingling in my knee and my arm going dead. I was in really poor shape and scared to go to the doctor, but was bolstered up by all of you, and I did imagine all of you in the office with me. Prior to the visit they doubled my midodrine (proamatine), so I was able to get up and around more. For one of the first times I was really firm and confident (well, as confident as you can be when you're exhausted). And its a good thing too, because otherwise I would have gotten even more ran over than I was. It was a terrible visit. My doctor implied first off that maybe I was partying, which is like, the most hilarious thing in the world to me, because I can barely go to the grocery store. I think because I look young, even though I'm 24, he treats me like a teenager. I told him I absolutely wasn't, and he looked at me with a little grin, like he didn't believe me. He then wanted to know if I quit doing my exercises, which I did on the days when I couldn't walk, and he thought that was the cause of my worsening symptoms, which made me so mad because any day I physically can exercise, I do. Then he wanted to know what time I got up in the morning. I told him at 8 or 9 and he laughed and said, "well, if I slept in that late, I couldn't sleep at night either." Hello, I get up three or four times to pee in the middle of the night and then have a terrible time falling back asleep because of the adrenaline it takes to get myself up. He then told me that POTS patients don't have relapses, and I must be doing something wrong or not working hard enough because I'm not getting progressively better as 80% of people with POTS do. He checked my blood pressure and pulse in each position and said they were looking okay, so I must be fine. The thing is that he only had me stand for one minute. Everything I read, and what he told me when he diagnosed me is that sometimes it takes up to ten minutes for symptoms to show. So I left the doctor's office with a terrible rash of hives all over my chest, which is what happens when I get really upset. What do you guys think of what he says about POTS patients not having relapses? Do you think that this doctor has taken me as far as he can? How does one go about getting another doctor? The thing is, I have been working really hard, treating my POTS has been my life for the last two years. I can't work; when I tell the doctor that he acts like I should be able to. I don't think he takes me or POTS very seriously. I don't know what to do. Thanks for listening Kady Just a quick add-on question. I have been having the most horrific three day long headaches that I never used to have. Does anybody else experience this, and what helps?

Amber, Crappy appointment with no real results. I"m so sorry. No wonder we don't like to go to the doctor. How old are you; why wouldn't they do a mammogram? I was freaked out because of a lump on my breast for a long time, and nobody would really say or do anything about it. It wasn't until I got to the Mayo Clinic that a wonderful internist there said it was cysts. Anyway, I hope things go better. Kady

1. Kady Holdefer 2. 24 3. POTS, Tourette Syndrome 4. 23 5. Lincoln, NE 6. Extreme fatigue, inability to walk, falling, excessive heart rate, low blood pressure, dizziness, bad leg pain, thirst/urination, headache, memory loss, inability to concntrate, flushing, hot flashes, chills, fever 7. Fatigue, some falling, high heart rate, low blood pressure, leg pain, urination (basically, same symptms, just not to the extreme, livable) 8. Stockings made me too hot, didn't really notice a difference; breathing exercises made me fall asleep 9. Midodrine 5 mg 3x daily, swimming daily (really helped when I could, no gravity pulling my blood down), Pilates, Salt, Tons of water, leg exercises (these things have really been helping until recently)

Thank you all! Today is an even worse day, so it really helped to read responses. I did, thanks to all your support, call my cardiologist today and he is going to get back to me. And so the journey begins. Thanks again Kady

I'm sorry you're having a hard time. If this helps, I was diagnosed with ITP when I was a sophmore in high school. Did they test your iron as well? Have they tested your platelets? Because I had such low platelets, I also had, like, no iron in my blood which made me extremely exhausted. They had me on the prednisone for a year and finally decided to try removing my spleen (they thought my spleen was overreacting and killing platelets instead of bacteria). I have had normal patelet counts ever since. They should probably do a bone marrow test too, if it comes back that your platelets are low. I used to be covered with petechia (sp?). The weird thing is that a few months ago, I had an outbreak of petechia on my face and wasn't sure why. Maybe it is associated with your other stuff somehow. Its hard when doctors don't know what to do, but I think it is awsome the your doctor admitted that they didn't know what to do, instead of just telling you some bogus answer, or that nothing was really going on. Best Wishes Kady

I'm so sorry you are having such a hard time. Going undiagnosed is really hard. It took me about seven months. How are you being treated for POTS? I was diagnosed in January, and have been taking Midodrine, upping my salt, and doing a bunch of physical therapy. I swim, try to walk, and do pilates. At first I could only do one lap in the pool I was so weak, but until recently I have been feeling almost 50% of my normal self, which is a lot better! I am going through something new, or maybe a flare up though now. However, I did feel better for a while. I'm only 24, so I know how hard it is to not work, not start a family, not go out with friends, ect. It feels like you're behind in life. But you have to hang in there and find small things to make you happy. A little after I got sick I adopted a disabled cat. She has made me feel whole again, makes me feel useful. Also, its hard to explain to people how you feel; I tell them its like I'm really hung over, but I didn't drink the night before. That is the best I can explain it and I think its helps people understand. Hang in there.

I know doctors do a lot of good things, but they make me so mad sometimes. SJPrice23, my doctor at Mayo Clinic told me that I didn't know how to breathe right too, and this is after I was diagnosed with POTS. What is with this breathing thing? He said I breathed too fast because I had anxiety. Uh, I was standing up, and he was making breathe fast, yeah I was anxious I was going to pass out. I'm not a doctor, but I do know that.

Thank you both for your responses. I know I should go to my doctor. I get really anxious when I go to the doctor, because they kept telling me that I was fine for so long, and I wasn't. The last time I saw my POTS doctor, he told me I was way better and I needed to do more exercises so I wouldn't just be sitting around getting fat. But I just need to suck it up and get in there. The bad thing is, the worse I feel, the less energy I have to actually go to a doctor and explain myself so I make sense. I guess I'm just down because my doctor kind of explained that I would be better within a certain amount of time, and all of a sudden I feel way worse. It helps to read the posts on this forum, though, to know that people have been through way more and come out the other side, or at least are still going. Kady

That's really frustrating. I had the same problem, where the midodrine wasn't really making me feel any better. I don't know if this applies, but my cardiologist explained to me that the midodrine makes it safer for me to try to do leg exercises, which will get my blood moving better and will then help me feel better. Again, I don't know if that applies. I also doubled my midodrine for a while, bad chills, but it got me up and around more. My doctor explained that I can really experiment with my dosage there; it won't hurt me. I hope you start feeling better. Kady

Congrats! There is nothing like the feeling of knowing you're not crazy, and that there's a reason that you feel crappy. I remember when I got my diagnosis, my family made my favorite meal. The emotional relief is amazing. Kady

Hi everybody. I have been reading the posts on this forum for about a year and have been both kind of shy of posting myself, and also wanting to think I would be better any minute and didn't need to. I am 24 and was diagnosed with POTS last January, but am pretty sure I have been sick since at least last July. I had terrible experiences with doctors, but felt very optimistic when was finally diagnosed. I have been swimming every day and and felt like I was getting better. However, the last couple weeks, I feel like I have been run over by a truck, and am experiencing a bunch of new symptoms. This has made me very depressed, and pretty scared. My new symptoms have been knee and foot tingling so bad I can hardly walk, I pee constantly, and also one day my arm went dead. My arm was all heavy and I literally couldn't use it. I wanted to know if this kind of stuff happened to anybody else. I'm scared to go to a doctor, because I know they'll just think I'm crazy again. I also wanted to thank everybody for this forum. I read it when I think nobody understands how I'm feeling, and it makes me feel sane. Thank you Kady