Rachel

I think that all photos have to be 100 KB or smaller. I tried uploading a photo that was 101KB, and it didn't work. But as soon as I resized it to be under 100 KB it worked.

This was great! Thanks so much for sharing!

Has your son been tested for gastroparesis? That could explain the nausea and lack of appetite. Rachel

You may find the "What Helps" page on DINET beneficial: http://www.dinet.org/what_helps.htm. Here is an old topic where many members shared helpful tips for making life with dysautonomia a little easier: http://forums.dinet.org/index.php?/topic/9500-simple-helps/page__p__87357__hl

We have a finalized date for January. I will be emailing the date/location to everyone who has said they can come in January. We are hoping to also have a February meet, so even if you can't come in January hopefully you can join us the next month!

Hi Bruc, I have heard of someone who has severe gastroparesis as her only dysautonomia symptom. She is a friend of a friend, so I don't know her personally. From what I remember, her gastroparesis was bad enough that she couldn't eat at all. She either had a J tube or tpn for nutrition. She was fairly healthy and able to work. It might not be very common to have GI problems as the only dysautonomia symptom, but I do believe it is possible. I'm sorry you are having difficulty figuring out what is going on for you. I hope that 2012 will bring some more answers to the puzzle. Rachel

We do still try to do a quarterly newsletter. There wasn't enough content do do both a summer and fall newsletter this year, so we only have a fall 2011 newsletter. I just checked, and it has been posted. You can find the fall 2011 newsletter here: http://www.dinet.org/Fall2011.pdf I'm sorry for not announcing this sooner. I didn't even realize it had been posted! Thanks for keeping me on my toes. Rachel

I would like to get our January plans finalized on Saturday of this week. That will allow time for those who need to make travel plans, take time off of work, or find a driver. If anyone else wants to chime in with a date/time that will or won't work for you, please send me a PM asap. We would like for as many as possible to be able to come! If you can't come in January, it is possible that we will have another get together in February. If there is a particular weekend that would work well for you in February please send me a PM and let me know.

I'd like to move this discussion to email so that we can make specific plans off of the forum. I am going to send a PM to everyone who has replied to this topic. If anyone else would like to join us, just send me a PM or reply to this topic and I will include you in our discussions off the forum. Rachel

Merry Christmas!

That's great that so many are interested in coming! I'm excited to meet you all. I will be in touch after Christmas and we can chat via email to get a time, date, and place set up. Rachel

Hi Everyone, DINET has joined twitter! If you are interested, you can find us here: http://twitter.com/DINETorg

Wow! That's great that so many of you are interested! I had no idea that people would be willing to travel for this. I just thought I might be able to find 2 or 3 local members. This might be a big group - that's exciting! I'll have to rethink a location as this might get too big for a Starbucks. Please let me know what days of the week and times of day work best for you. Mornings are completely out for me, but afternoons and evenings would work. Please also let me know what kind of needs you might have that would dictate where we could meet. For example, if you can't be in a noisy place, a place with fluorescent lighting, etc, or if you will need to lie down. I'd like to find a place that will be as comfortable as possible for everyone. If you aren't comfortable posting your available days/times or your specific needs on the the forum, please send me a PM.

You know you have POTS when...your children don't have a toy doctor's kit; they just borrow your real one. My children love to play with my blood pressure cuff, stethoscope, thermometer, and pulse oximeter, and they use empty IV saline flushes to give me "shots."

I know that a small heart did not cause my POTS. When I first came down with POTS symptoms I was a year-round competitive swimmer. I swam 3 miles a day and did weight lifting 2-3 hours per week. Yet my heart rate kept creeping up, and eventually my heart rate while sitting was always 120, sometimes 140. Tests showed that my heart was in excellent condition. Lack of physical fitness certainly didn't cause my POTS, and if exercise was truly a cure, I don't believe I ever would have gotten sick to begin with.

I would like to organize a get together in the Atlanta area sometime in the new year. Are any of you Georgia members interested? I was thinking we might be able to meet at a Panera Bread or a Starbucks. Both of those places have couches, which could make it easier for some of us to sit and/or recline if necessary. I'm hoping to have a meet up sometime toward the end of January or February. If you are interested, please let me know! I would love to meet some of you in person! Rachel

Thank you, everyone. It is a pleasure to serve you all. DINET was a huge help to me back in 2004 when I first found the website, and I'm so happy to have the opportunity to help out now. I can't take credit for the website. Michelle Sawicki is the one who researched and built the site. I am grateful for all of her hard work over the years. ArizonaGirl, we'd love to have you join our volunteer team whenever you are able. Just let me know! I want to add my thanks to all of you DINET moderators and volunteers. I couldn't do this without all of your hard work. You are greatly appreciated!

Cute! Merry Christmas to you too.

Thanks so much for posting this, Nina. I was wondering what was going on with midodrine. It's a necessary medicine for so many of us, and it would be awful to have it taken away.

Do episodes like this happen often while you are sleeping? I'm wondering if a sleep study would be helpful. It could show what is going on in your brain, with oxygen levels, and with your heart rate during those episodes. If you can get a sleep study that also monitors your blood pressure, that might be helpful since you think your bp is dropping. Of course, sleeping with a bp cuff going off automatically every 10 minutes is hard to do! It would be good to check in with your doctor and let him know of the recent changes in your health. I hope you can find the answers and help you need. Rachel

The brand I have is ReliOn. It has a manual inflate, which made the price cheaper. I don't think it is one of the "better" brands, but it has always been accurate when we have compared it with the manual blood pressure cuff and stethoscope method. If I am alone and not feeling well it is really hard to inflate the cuff on my own. If you are able to afford an automatic inflate, then that feature could be very helpful. Blood pressure cuffs can be pricy, but if you keep your eye out for a sale then you will probably be able to find a good deal somewhere.

Yes, that happens to me too. I always shower with a shower stool now, and this makes it much easier for me. When necessary, I run cold water on my legs and feet to help the veins constrict so that I don't get so dizzy. After a shower I usually have to lie down in bed for a little while to recover.

Rich, I usually wear knee high compression. I also wear mid-thigh to waist compression from Spanx. I get the strongest compression they have, but it isn't graded like the medical compression. I would guess it to be about 30mmHg. I used to wear thigh high compression, but am no longer able to do so. I have also tried waist high compression in the past, but it it caused stomach pain. I need 40mmHg on my legs, but only 30 or so on my stomach. I find that with compression I am generally able to be upright for about twice as long as without compression. So instead of being able to stand semi-comfortably for one minute, I can safely push it to two minutes with compression on. Instead of only being able to sit in my recliner for an hour, I can sit for closer to 2 hours with compression.

Rich, Compression stockings and midodrine help to lessen the blood pooling for me. I wear 30-40mmHg compression, and I take 15mg of midodrine every 3 1/2 to 4 hours. Rachel