Rachel

Have you ever been tested for gastroparesis? This could explain the lack of appetite, and it would explain why you feel so full after eating just a little bit of food.

I hope you can find some answers and a better nutritionist. There are some good ones out there.

Rachel

We are going to be getting together soon. If anyone else wants to come, or if I accidentally missed your name when sending out emails, please let me know!

Rachel

Warm winter gear and lots of layers helps me. I used to live in Alaska, so I have some pretty warm stuff. I have noticed a big difference in how warm I stay when I wear my winter -30 coat compared to my wool pea coat. When I wear my coat rated for -30 it's like the cold isn't even there.

I also really like my thick fleece scarf. It is soft enough that I can wrap it around my face if necessary. A hat can help a lot, especially a stocking hat that is thick and fits snugly. Mittens are great and much warmer than gloves.

I am becoming more intolerant to the cold as time goes on. It takes so much energy to keep warm that it just wears me out, and I get really tired. I also find it harder to stay warm since I can't walk around and keep warm. I have to go out in a wheelchair, and riding in a wheelchair across a parking lot gets chilly! My legs get cold since they aren't covered by my coat. If I ever move north again I will be investing in a long coat that goes down nearly to my ankles.

Warm thoughts ,

Rachel

It is possible for some people with POTS to have successful careers. Not all of us can work, but there definitely are many who do.

Most people on the forum are here because they are so sick and need information and support. Those who have gotten better from POTS don't tend to stick around on support forums. So there are probably many more with POTS who are out there and working.

I hope that you are able to find the right treatment and start feeling better soon.

All the best,

Rachel

I wonder if the level of activity was too much for her to maintain. Maybe her current level of activity is something she can do for a short time, but not for the long run.

Personally, I can have a couple of weeks were I can push myself and do more than my normal. My health seems pretty stable at first, but I can't maintain that level of activity for weeks on end. If I give everything my body has to give every day, then I always get worse in the long run. I can only push myself to my absolute physical limit 2 days a week or less. I have to pace myself and find the right balance of activity and rest.

I hope you can figure out what is going on with your daughter, and I hope she'll be having some better days again soon.

Rachel

The poll feature on the new forum is a little confusing. After you click "finish" for the poll it will disappear from view until you publish the new topic. You will be back at the normal page for typing up a topic. Type whatever you want to for your post, and then post the topic/poll. Once you click "Post New Topic" the poll should show up in the published topic on the forum.

Hope this helps. Let me know if this doesn't work. Thanks!

Rachel

First of all, Congratulations on your little one! I hope that your pregnancy goes well.

Wow, a bp of 70/40 isn't good, and neither is being dizzy and vomiting. I hope that you and your doctors will be able to find the right treatment for you and your baby during pregnancy.

Here is my experience with my last pregnancy. I took midodrine through the whole 9 months. I took 15mg 3-4 times a day, and delivered a 10lb baby at not quite 39 weeks! No growth retardation there!

I did discuss midodrine with my OB and a high risk OB, and they both agreed that it would be best for me and the baby if I took it throughout pregnancy. Part of the concern was for proper bp and blood flow. I have significant blood pooling, and there are times that there has literally been a line around my waist, above which was normal skin color, and below which was blueish/purple. The concern was that without the midodrine I would have too much blood pooling, thus preventing adequate blood flow and oxygen to the baby.

It is true that midodrine has been shown to cause growth retardation. However, this has only been shown in rat and rabbit studies when the medication was given in 7-13 times the maximum dose. Plus, the rats and rabbits didn't need the medication in the first place. I think it must be different for someone who needs their blood pressure to be raised. From what I understand, midodrine has never been reported to have caused low birth weight in a human baby when the mom took the med during pregnancy. Just to be safe, my OB ordered ultrasounds every month to check the growth of the baby. For the last 6 or 8 weeks I had ultrasounds every other week.

I also wore compression throughout pregnancy. This could be an option if you choose to be off of midodrine. I work knee high compression hose and mid-thigh to waist compression. I wasn't sure if I would be able to wear them even to the end of pregnancy, but it worked out just fine. The waist of the compression slowly stretched with me, and it fit well even when I was 9 months pregnant.

I hope that everything goes well for you. Some women with dysautonomia feel better during the 2nd and 3rd trimester because of the increase in blood volume. Hopefully it will help you too!

All the best,

Rachel

Midodrine has been beneficial for me. Has it helped me to improve? No, but it has helped more than any other medication. I first noticed symptoms of POTS in 1994. Since 1999 I have been progressively getting worse, and no treatment has been able to stop this.

I have been taking midodrine since 2007. Without midodrine I would have to spend even more time in bed, and that would lead to even more deconditioning. So it hasn't helped me to improve, but it does give me a better quality of life.

That is such a great idea, and so thoughtful of your boys!

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