briarrose

I fit right into this post. My blood pressure is getting to be a horrible problem. When I first developed POTS I didn't have any blood pressure issue. The pressure issues started a good 6 to 12 months after initial symptoms. I think that most of my cognative, memory and vision problems are due to the BP. Lately my pressure is spreading in gap. 100/40. I normally run about 90/60. I've been as low as 60/40. As high as 164/can't remember. I just wish I didn't have the memory problems with this issue. I'm sure it's lack of oxygen to the brain.

Sorry you've been feeling so bad. Multiple symptoms are horrible to sort out especially when the doctor has a snap to answer. Hang in there and if you're not improving be a PAIN at the docs office

That was Great! You should submit it to someone.

Hey guys I've made a few posts about visual problems. I have different problems go on. 1. If I'm in the bright sun without glasses on then I get eye spasm that lasts until I put on glasses. 2. I have bouncing up and down of my vision. 3. When I look down to read in a sitting position, sometimes my vision is bouncy. Can't explain it yet but very uncomfortable and I won't read. I usually have to hold something straight out in front of my face. 4. When I had squiggles, flashing, ex. looks like a candle flickering on a wall. My Neurologist said that was a painless migraine with Aura. I would've never guessed that that was an Aura. I use to think that an Aura was a full circle but mine was only a half. 5. My vision blurs out, I think this is a blood pressure issue. 6. When my POTS symptoms are at there worst. If I walk into a warehouse with a high ceiling like Costco, then my vision and balance are Extremely Uncomfortable. Everything is distorted. Very weird symptom. 7. My own tears often burn my eyes. I think that's about it. Think that's enough anyway

Thx everyone for your responses. I think that we are all pretty much on the same page of just wanting to make things easier for all. Michelle, Nina & Melissa - Thx for always having an open mind and letting us take this opportunity to try and help. I understand a FAQ would be hard, especially since Dysautonomia isn't text book yet. I think we could start very basic and eventually expand. I will work on something and email it to you guys in the next week or two. Sorry would like to write to all of you guys individually but can't hold my concentration or vision this week. steph

Thanks guys that helps!

Just home from the Rheumatologist. He still doesn't know what to make of my stiff, painful joints in my thumb & knee. He's saying Fibromyalgia again and that was after last month when he said I didn't fit the criteria, go figure. He gave me 2 new meds to try Zanuflex and Mobig. Even though I work in the medical community, I've never heard of either of these medications before. I'm wondering if anyone on this forum has tried either. thx Steph Might be Zanaflex, can't really read his writing Might be Zanaflex, really can't read his writing.

Happy Birthday Nina! I hope you did something fun and relaxing. Steph

Thanks Steph You said everything I was thinking but much better. I feel horrible that I haven't welcomed and responded to enough of the new people here but most days I'm just functioning enough to get to work and take care of my family. But I want everyone to know that we care and are willing to help. I'm just trying to think of the best ways to help. Thx again Rita your visual earlier was very much appreciated for anyoen that didn't understand what I was talking about. I didn't want to seem rude because we've all been new at one time and had many of the same questions that could be easier answered without taxing everyone ( I don't mean that in a negative or bad way, please don't misinterpret.) I just think we can spend our energy in better ways. After someone has read something if there question wasn't answered then please throw it out there. I'm more than happy to tell anyone about my experiences with POTS, Meds, Doctor's, symptoms, life. Please always feel free to post or send me a personal message. I'm not an expert but just speaking from experience. thx Steph

Thank you Rita that's exactly what I mean

Because those are websites that you can do research and what I'm proposing is commonly asked questions and answers. Some people might not know what to look for in those websites if there new and not very computer literate. I'm in NO WAY proposing more work for the moderators. I'm asking a question and propsoing a new idea that I thought would be helpful. I've been here for a long time and new people, including myself at one time, have many of the same questions. I just thought it would be helpful for all involved if there was something a little more simple, that's all. You can discard the idea, it was just an idea.

Nina, Michelle and all of our family here at Pots place, What do you guys think of a category for frequently asked questions? i.e. Have you tried this med, possibly symptoms, tests, docs. I know that there is much information on the main Pots Place website but there are several frequently asked questions. I'm not saying for people to stop asking but to give them the base foundation of frequently asked things. Then we/they can ask or converse. I went to one of the Lyme disease website to research something yesterday and it was nice to see there frequently asked questions and answer page as it immediately told me what I was looking for and I didn't have to search any further. This is just a thought. Not trying to make more work for anyone and if you thought it was a good idea I would even volunteer to work on it and hopefully recruit someone to help. What do you guys think? Steph

Welcome & Ditto to what everyone else said. I have tachycardia with an extremely low blood pressure. I had to try a few different beta blockers before I found the right one for me. A beta blocker is important to control the tachycardia and it helps with any arrhythmias you might have too. My cardiologist in town didn't want to do a TTT on me but I insisted. Several of my other doctor's wouldn't even listen to what I had to say if I didn't get a TTT because they didn't really know anything about POTS. And while my Cardiologist here believed that it wasn't necessary because it was quite clear to him, I insisted so that I would have the evidence to be taken seriously. So I had the Tilt and of course it was positive and there isn't any question in anyones mind, I have POTS. I think you should try what your doctor suggested and if you have any problems he can discontinue or change your medications to something that will help you. If you can control the heart rate and blood pressure, maybe it will help you get a good nights rest. Take care Steph

Thx Michelle for Clarifying that. I pretty much figured that it wasn't a very accurate count of Dysautonomia patients. However, the early numbers in are quite interesting (kind of like an early return from an election) I've often wondered about environment, mainly because some of the illness that have been around for a long time are affected by geographic location, environment, time of year a child is born; i.e. Lyme Disease, MS, CFS, Autism, etc. Some of these illness are still being investigated as to why there are so many in a concentrated area. Just good to keep an open mind I guess, anything is possible. Genetics are definitely a possibility to consider. I?m sure that when they unravel Dysautonomia they are going to find several factors. I know that many people have never been to Ohio but there could be some factor there that is also in other locations. AND not everyone has the same type of Dysautonomia so it's pretty broad. Katherine you did a great job on the map, you were included in my first paragraph, just didn't know who did what, sorry. I think, when they do a research study they should ask certain basic questions to find commonality. It is very broad in that they can ask thousands of questions and never turn up anything but at least they are looking. This isn't absurd in that they are doing it with other illnesses and turning up reasons, Lyme disease is kind of an example of this. d4g7 The abbreviations are states, Tx = Texas. Katie interesting about the Cancer, I'm so terribly sorry. A good Erin Brockovich story. There are those kinds of things all over the world unfortunately. Ernie I didn't realize so many of your family had Dysautonomia. That is truly horrible. It must be a little easier getting support from your family since they are in your shoes. That's kind of how it is with me and my mom, she understands most of what I'm going through and usually doesn't put pressure on me about stuff. Ok have to get out the door, it's going to be a long day. Take care everyone and keep an open mind Steph

Thanks for this post. I have read several of the NASA things over the past couple of years. But I absolutely loved the website and posted some things earlier today. Thx steph

Here are some websites that pertain to Orthostatic Intolerance http://www.sciencedaily.com/releases/2003/...30916073900.htm

I've been searching through many news stories, most of which I've read before but today I came across something new! How Melatonin can be dangerous for people with Orthostatic Intolerance. Study Shows Melatonin Supplements May Make Standing A Hazard For The Cardiovascular-challenged http://www.sciencedaily.com/releases/2003/...30916073900.htm

I just finished reading the 2005 Fall Newsletter. It's always way to short and I would love to read more Thank you to everyone that contributed. The 2 things that kind of struck me and got me thinking were - The most Dysautonomia patients in any one state was Ohio. My question is how many people in other states now, originated from Ohio? Do you think there are more people with Dysautonomia from Ohio because there are doctor's there that recognize the symptoms and can diagnose it or ........ The second thing that I was curious about was the study from Germany. There is only 1 person listed from Germany so where did there tests subjects come from? Or do people from other nations just not know about this website yet?

Rose I'm sorry that I didn't get to come see you in the hospital. I woke up with a bad eye infection, swollen 1/4 the way from center out and 2 of the kids had just been diagnosed with pink eye that day. I hope you are feeling better & I was so glad to hear from you. I experience the low grade fevers all the time. Had one this morning when I got off work. I find that I usually have them going to bed, not getting up. My temp has always run low, usually 97.6 but lately as low as 97.0. I even occasionally sweat and I never use to have that problem. The one thing that drives me crazy is when my core body is sweating and my extremities are all ice cold. If I could correct it, I would look like frosty naked with leg warmers, wool socks and gloves up to my elbows Did you go to Vanderbilt? Dying to talk to you again. Would've called but thought you were out of town. Sincerely Steph

Jessica Welcome! Steph

This sounds exactly like the story that was in the newspaper last year and we posted it here. I haven't seen the show so I can't make any comments. steph

Congratulations! I would love to read it! I always love reading stories like that and it doesn't have to be POTS related. I've posted a couple of great stories here; one on Laura Hillenbrand's illness & the other was about a girl who suddenly became ill and it was her mom that figured out that she had Lyme disease when the doctor's were trying to commit her. Steph

Was this the show you were referring to? I'm asking because we don't have cable here. Abdominal pains and severe headaches plagued 12-year-old Marissa Irwin until doctors diagnosed her with a retroflexed odontoid and Chiari One Malformation.

This was an interesting topic that I hdan't heard before. I hadn't heard anoxic either but looked it up http://www.webmd.com/hw/epilepsy/shc29ras.asp STARS http://www.stars.org.uk/

I hadn't heard anoxic either but looked it up http://www.webmd.com/hw/epilepsy/shc29ras.asp STARS http://www.stars.org.uk/