lilsagestar

I sat down and spoke with my family today, and we discussed some of the topics you guys brought up. Considering I'm stuck at home anyway (post-surgery healing and all) we've decided to change a couple things around the house to make it safer for me, and (until I can get to the doc to discuss this new development) they're going to take over some of the things that I normally do, like cooking, that are dangerous for me. Thank you for your advice and tips - the tripod chair is an excellent idea - I really appreciate your help. Thank you.

I apologize if I sounded a bit over-dramatic last night. It all kind of hit me at once and I freaked out. Thank you for your advice - I didn't even think about going up the stairs on all fours. That would make it a lot safer for me, wouldn't it? Also, I'll ask my doc about NCS the next time I see him, I don't think I've heard of that before so thank you for putting me onto it. Thank you so much for listening to my freak out and trying to help - I truly appreciate it.

I am 21 years old and have had POTS for four years now. It's never been really under control, but it was constant for a long time, I knew what to expect. As of late, I've begun to decline, and my docs can't seem to stop it. I recently had to have surgery for something unrelated (chronic pelvic pain) and this left me weaker than I've ever been - even more so than two years ago when I had two major surgeries back to back and was bedridden for months. Now, I have counted myself more than lucky that when I have an episode I only experience near-syncope. Granted, it doesn't feel any better than full syncope, but it's easier to hide in public and I'm less likely to fall on people or crack my skull on some pavement. For four years I never passed out, not once. Not even under extreme physical and emotional stress. Then two days ago I blacked out for the first time. I felt an episode coming on and reached out for my mom's arm to steady myself, then suddenly I was on the floor with my family standing over me. I have never been so scared in my life. Then, earlier today, it happened again, but this time with no warning whatsoever. One moment I had a knife in my hand, about to cut a cake, and then I was waking up on the floor. I have never not felt an episode coming, not had some warning that I needed to sit down or grab something. It was a simple miracle that the knife fell on the counter and didn't collapse with me, or that I didn't wake up covered with cake. Then, just to add insult to injury, I found out today that by Florida state law I will never be able to get my driver's license. I haven't gotten it before because of one thing or other - I broke my arm three times after my 16th birthday, my family moved and I didn't have a car to practice in, I was simply too busy with school or work to take the time - but I've always had the option. If I didn't feel broken enough all ready, now I find out that I'm going to be a dependent for the rest of my life. I've been okay until now. I was okay when I was forced to leave school two years ago, I was okay when I was forced to quit my job. I was okay when my friends started abandoning me because I couldn't leave the house. I was even okay when I was told that I needed another surgery - just when I was about to start school again and start living once more. But I don't know how to be okay when I can't trust my own body anymore. I don't know how to be okay when I'm scared of climbing the stairs in my house because I don't know if I'll reach the top or pass out half-way there. I don't know how to be okay now that attacks are hitting me without warning. How am I supposed to fight that? Please, if any of you have hit this point, tell me how to get past it, if you were able to. It's not a matter of trying to find new meds combinations or therapies, I just want to know how to get past the fear. That nagging voice in the back of your head that keeps reminding you that you could black out at any moment - that you need to second-guess every action because you just might. Is there anything I can do?

I have two doctors who have been a real Godsend to me. Without them, I would have no quality of life whatsoever. When I was a senior in high school I started experiencing bits of near-syncope and irregular blood pressure. I was exhausted all the time and had to fight through an almost constant brain fog. In addition to that, I was dealing with early-onset endometriosis - I had been popping cysts and dealing with painful menstruation cycles for about two years and the new symptoms were only making it worse. My two docs at the time, general and obgyn, both agreed that all of my problems, including the "invisible cysts" were all in my head as a result of "teenage anxiety" and they both suggested that instead of seeking medical help I talk to the school counselors. Unfortunately, every woman in my family has had endometriosis and I was well aware of the warning signs, so I KNEW that something wasn't right. Shortly after the end of high school my family moved to a very small town in Alabama (Alexander City) which had a surprisingly advanced and learned medical community. At that point my syncope and blood pressure problems had gotten much worse, with the new additions of hot flashes and irregular heart rhythms, and so my NEW GP sent me to a cardiologist to get checked out. Dr. Natello is quite possibly the most compassionate doctor I have ever met. In our first appointment he discovered that my problem wasn't cardiovascular, but he refused to send me to another doc until he knew what was wrong with me. He performed dozens of tests, including EKGs and a 24 hour heart monitor, fully examined me and shared the research he was doing for me with each visit. It took about two weeks of visiting him almost every day (I even celebrated my 18th birthday in his office) but he finally came to me with an answer - POTS (and for the record - he was also the first to diagnose my endometriosis, but he wanted me to go to an obgyn to confirm). Even though it wasn't his specialty, or even a disease in his department, he still insisted on being my treating physician. He worked with me to find a treatment plan that was effective, had his nurses call me at home every other day to see how I was feeling and (since I needed blood drawn once a week) instructed the nursing staff on special ways to draw blood so as to avoid blood pooling in my hands. Until the day I moved away from Alabama he personally watched over me and made every effort to make me more comfortable. Now as for my endymetriosis, it wasn't until I reached Texas that I found an obgyn who didn't pass my problems off as "phantom pains" and suggest psychiatric help. Dr. Franklin of the Women's Hospital of Texas instantly saw my pain for what it was, and in my first appointment he set me up with a treatment plan AND two of his partner doctors who would all work together to fix my problem. He made sure to listen to every little ache or pain (even researched POTS so he could tell what was gyncological or autonomic) and set me up to have the surgery that I truly needed. Even now, two years after the first time I saw him, with my endometriosis under control, he still keeps up with me. Most docs will just deal with the emergency, then just let you fall back into their files until another problem arises, but Dr. Franklin and his staff are committed to not only getting their patients well, but keeping them that way. I owe both of these doctors a HUGE debt of gratitude, and if anyone either in Alabama or Texas is looking for a brilliant doc, I would be more than happy to send you their way.

I have a favor to ask - is it alright if I print out this discussion and take it with me the next time I see my doc? He has a training practice, and the staff there has shown interest in my case. I think if I showed them that other docs (if you won, a lot of docs) are interested as well I might be able to stir up some support in my area. Thank you for showing dedication to our cause! We "orphans" truly appreciate it!

I'm near Houston and I have a Neurologist who at least knows about POTS and knows the basic treatments for it. He's been willing to work with me to improve my treatment. Dr. Jose Diaz 507 Park Grove Katy TX 77450 (281) 206-2127

If it helps, I've been taking Glucosimine/Condroitin for about six years now, and I got diagnosed with POTs about four years ago. I've always noticed a definite improvement with my arthritis with the G/C, and I've never had any problems with it interfering with my POTS meds. Especially in the beginning I was really sensitive to changes in my meds, but the G/C never gave me any grief.

I have IBS too, and it may or may not be the same as yours, but my doc says it spawns from Insulin resistance and intolerance to certain foods. When the digestive track is exposed to something it can't handle it spasms and revolts, causing the pains, cramps and whatnot. There's a lot of trial and error that goes along with it, but you CAN find a diet that keeps you in relative comfort. The way to start is to take a food group (I suggest you start with sugar as that can cause major problems) and go a week without eating it. If you notice a significant improvement, then you've probably found one of your triggers. If not, try something else (like diary - also a common activator) for the next week and see if that helps. I can tell you that the most common things to cause someone with IBS problems is sugar (including natural/fruit sugar), dairy, red meat and complex carbohydrates. I've found that eating white meat and vegetables as a staple of my diet keeps me on the right course. Also, if it turns out that sugar is your problem (meaning you're insulin resistant) start counting how many sugars you eat during the day. Unlike diabetics whose sugar levels rise and fall, people with insulin resistance usually have a set number of sugars that they can eat before the cramps kick in. For me, if I eat less than 35g of sugar a day I don't have any cramps at all. However, if you're going to switch to sugar-free foods as a result (which are much better for people with IBS and actually help you lose weight) I'd watch out how many sugar alcohols you ingest - like sugar, some people can only have a certain amount before your body rejects it. Like I said, it's a lot of trial and error, but you can find a diet that works for you. I hope you feel better, and if you need any more help feel free to message me.

Thanks for the welcome ajw, I've found so much help on this board - it's amazing!

What is the difference between syncope and near syncope? A lot of people don't realize how "near fainting" can be debilitating.

Thank you all for your input, and I'm really sorry to hear about your license Morgan. Maxine, the Florinef is what keeps me going, so I hope it helps you too! I actually went driving for a while today and I tried the techniques that you all suggested - the toe bounce, knee thing, and the leg compression that the links suggested - and it actually helped a great deal! I managed to get through the whole drive without getting the vertigo I usually do. It could have been adrenaline or just me being really focused on it, but I'll keep using the tricks and see if they keep helping. Mary - I know how you feel with the abdominal pain, I have endymetriosis so I get that too. I don't know if it will help you, but when the pain gets bad for me I use a heating pad (an industrial version of the rice-in-a-sock) and it REALLY helps. Usually if I can manage to back off the pain it doesn't trigger a blackout episode. Maybe that could help you? And HAPPY NEW YEAR everyone! ~Heather

Thank you for the links Pat, and for the tip, taylortot! I actually hadn't heard of gatorade helping before I got to this site, and I've been drinking it for the last two days. It's helped tremendously! All of you are so wonderful for helping me out - thank you!

I read about compression stockings on the site, so I'm going to try them and see if they help, but I'll try the knee thing too. Thank you for the tip! And thank you both for the welcomes!

Hello everyone, I'm new to the forums here. I'm 21 years old and was diagnosed with POTs over four years ago, and so far I've been trying to find what works by trial and error. I've already found a lot of wonderful information on these forums to help me, so I wondered if anyone had a solution to this: I still haven't been able to get my driver's license for a multitude of reasons (mostly because I have brittle bones and I keep breaking my right arm over and over) but one of my big problems is POTS related. Whenever I've been sitting in a car too long, or I've been out walking around and then get back in the car to drive home, I get a rush of dizziness and feel lightheaded. I've never actually fainted, but I have cases of near syncope all the time. Usually I deal with those episodes by putting my feet up to level out, but I can't do that in the car. I'm worried that I'll have a moment of disorientation in the car and crash. So, is there a way when you first sit down after walking around or when you've been sitting a while to get your blood moving so you don't have an episode? Thank you all! ~Heather