BelieverEM

I have one. It's really simple to make yourself if you already have the inserts (I use the ones from my cooling vest). To see what it is (or order one, thought I'm not promoting any company), you can see pics at http://www.coolsport.net/index2.html

I realized last week that my onset of symptoms was at the same time that I started giving blood (2nd year of college).

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? yes 2. Have you ever been diagnosed with EDS or suspect that you may have it? dx with EDS, classical type 3. Do you experience symptoms when lying down even after a night of sleep in your bed? not nearly as much, but arrythmia is actually worse at night 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? no 5. Have you ever been informed by a doctor that you have low blood volume? no 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? yes, but then I was dx (by IgG blood test) with food intolerances 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? sorry, I don't really understand 8. Did your POTS arrive suddenly? no, but it did recently get worse suddenly 9. Is your skin pale? yes 10. Please the top 6 worst symptoms that you experience with POTS: 3: difficulty showering 2: heat INTOLERANCE 1: debilitating fatigue/ exhaustion

Many of us feel your pain on this one. Here's a link to a recent discussion (page 4 or 5 by now, maybe?): http://dinet.ipbhost.com/index.php?showtopic=11454 My sympathies! Erin

Chiming in with severe intolerance to Gluten, Milk, Potato, Safflower, and Yeast (all 3+ on IgG ELISA blood test).

Dani, I only wish I had your problem!!!

I have posted this on boards for my other conditions, to no avail, so I thought I'd ask here. One of my difficulties managine my conditions is trying to figure out what symptoms are caused by which condition, which overlap, and which are just me. I've learned I'm not alone (on this board) in my trouble being up (not laying down) very much, but does anyone else SLEEP excessively? Most people need 8 hours of sleep a night, but I need more like 10-12. I also have a lot of trouble staying on a sleep schedule, and often need naps. I'd be interested to hear if anyone else here has this issue. Thanks! Erin

YES. For me, it is due to Chiari/ cranial-cervical instability/ cranial settling. The last two could not be seen on my films BEAUSE THE FILMS ARE TAKEN LYING DOWN. This was explained to me at The Chiari Institute. Here is an article about it: http://www.uofaweb.ualberta.ca/neurosurger...yndrome%203.pdf

I was recommended by an MD to try HBOT a few weeks ago, but have not yet started because of the cost. However, a friend sent me an inside document from my insurance company on "codes" for which it will pay! I now just have to find a facility that will take the rx. If anyone wants a copy of this document (confidential, of course), to show your MD so that s/he can write you an rx that your insurance company may cover, do not hesitate to contact me. Hey, I'll try anything at this point!!! Erin

I am shocked to hear of so many who are in the same situation!!! I, too, had been steadily gaining weight for over a year, despite very limited diet, and I couldn't stop no matter what I did! I have gained about 50 pounds total. No doctor would believe me, etc, and it seems like I was in the exact situation as the rest of you who responded. A few weeks ago, results came back from extensive bloodwork done by my integrative medicine MD, who found that my level of LEPTIN (which tells the body how many fat cells to make) is sky-high. Other results: I'm missing some vitamins etc (Vitamin D, Magnesium, etc), even though I take many of them as supplements. I still have high Myocardial and Gastric Parietal cell antibody levels. The test that measures the level of inflammation in the body (C4a Complement Protein) is supposed to be 0-940. Mine is 57300!!! And then the level of the thing that is meant to combat inflammation was too low to be detected. Logically, my immune system is depleted across the board. And then, he had re-done a blood panel on food allergy/sensitivity/intolerance. Almost half of 100 things tested for came back positive. To try and fix the Leptin level, I'm on a 9-step system detox, which includes an Amylose-free diet. He explained that when your system has too many toxins that it can't get rid of, it will store them in fat cells. It will keep making more and more fat cells in which to store these oxins unless it can get rid of them some other way. If anyone is interested in knowing more about this, feel free to email me. Thanks for helping me feel less alone! Erin

I was on LDN for a while, when my doctor suspected Lyme disease (I tested negative for it, but positive for Bartonella, which he said was a sign, and that may people who are positive test negative anyway). After a few months, I changed insurance companies and the new one doesn't cover it, so I stopped. How long does it take to see results? In YOUR opinion, has it helped with your POTS? Thanks, Erin

Suzy, Thank you for sharing! I think we all know oblivious people like your neighbor, who insinuate that the only way to be of worth is through wealth or professional achievement. I also know what it feels like to be ignored and elbowed aside while in a wheelchair. I commented to my dad a few months ago that since being in my chair, I've come to see people at their best and their worst, every day. Some people do go out of their way to help me (most often, kids and old people!), but so very many others are shockingly rude! I have a power chair, which can go quite fast, and yet people step in front of me, cut me in line, and worse. Sometimes I wonder whether the majority of people truly don't see me! When I'm in asemi-crowded place, it takes me at least 3x as long to get across a room as someone on foot. People bump into me constantly, they lean on my joystick (sending me flying) because they walk too close, and I lost count of how many times people have actually fallen on me because they don't see me (this is when I am at a stop! not like I snuck up on them or anything!). We all like to think that our society is kind and condiderate to the "handicapped" or the "disabled" or whatever you'd call someone in a wheelchair, but it's just not true. The GOOD news is that I try to just laugh, and try as often as possible to help people become aware of their behavior. Sometimes that means allowing someone to have their feet run over by my 250 pound machine and not apologizing (I just look at the person and wait, and after a minute they realize that they are supposed to apologize). Sometimes it's refusing to park in the corner, and allowing people to look silly for tripping over me. It's not easy, and I'm not always up for it, but unfortunately, as someone in a wheelchair, if I don't help people to change, they never will. Welcome to the ranks. Erin

jjb, THANK YOU for the link to those articles! I've never read the full article. Erin

I'm so happy for you! I remember the day I got my power chair (also used, from a popular internet selling list). If you want a name that menas "new life," how about "Zoe"? I didn't name mine (it's just "my chair"), but it is life-changing, that's for sure. Enjoy!!!

I borrowed my mom's wrist blood pressure monitor to start keeping track of my BP when I'm not feeling well. My question is: When should I take it? How often? How (sitting, standing, etc)? And how do I know what is too low? Today, I took it standing up when I wasn't feeling well, and it was 97/63 (BPM 80). Is there a website or publication that explains any of this, or even a previous thread (I'm new to this site, and to POTS in general)? All I could find on the web about BP dealt with HIGH BP. Thanks in advance, Erin

I have Ehlers-Danlos Syndrome, classical type. You are generally diagnosed by a geneticist. Symptoms of EDS vary, but often include: joint hypermobility (loose/unstable joints which are prone to frequent dislocations and/or subluxations); joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis; soft velvet-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; chronic, early onset, debilitating musculoskeletal pain; arterial/intestinal/uterine fragility or rupture... If you visit the Ehlers-Danlos National Foundation at ednf.org (register for free), you can access message boards like this one, and find doctors in your area. Please email me if you'd like further information or guidance. Good luck! Erin

Hi everyone, I did try one, from coolvest.com (they even gave me 20% off! Email me if you want the discount code, which they said is fine to share). It has 4 panels of 4 sections each, but it wouldn't fit right. I could get it to fit snugly around my stomach, using the straps, but then (starting from under my chest and going diagonally upward), it would stick out at a sharp angle. Thank you very much for replying, though, for sharing your experience, and for the link. If anyone has advice/ tips about one with a better fit, please let me know!!! Erin

Thank you, Sara, for bringing attention to the EDS/POTS connection. After nearly a decade of suffering, I've only VERY recently realized that I have POTS, thanks to other EDS patients who have talked about it. I'm socked that none of the doctors who treat my EDS complications, including my 2 cardiologits, have caught it! I wish there was an easier way to bring about awareness so that we did not have to suffer so long without a diagnosis. Still, I am thankful that patients like you have shared their own stories, to inform within the community. Thanks again, Erin

Does anyone use a cooling vest? It sounds like something I'd like to try, but I don't know which kind to get. It's a big investment (up to $200), and want to get the right one. I'm open to any/all advice! - Is the "phase change" technology as good as it claims to be? - What kind of VEST would fit a woman the best? - Is there a company/ web site that is better than others? Thanks in advance! Erin

I use the Epsom salts (recommended by my holistic doc), but do a foot soak because I cannot tolerate a bath. Actually, the bath is fine, but getting out is a problem

Hi dsdmom, Did you ever find someone here in Boston? I'm looking for someone to get me an official dx, and hopefully treatment. Please email me if you know of a good doc. Thanks! Erin

Personally, the dx of "depression" has helped me, in the sense that nearly every doctor I see wants to first dismiss my symptoms with "you're just depressed" (I can't tell you how many times I've heard that)! Now, I can I reply, "Yes, I do have depression, and have been in treatment for quite a while. My psych doc says that I am doing very well, am mentally stable, and that these symptoms cannot be attributed to my depression." Then the doc HAS to take me more seriously. It's one of those hurdles you just have to climb. Of course, you first need to GET a very good psych. In my opinion, it's worth it, because (as I said), many docs will try to write you off, whether you're really depressed or not. Hope this helps! Erin