Michelle Sawicki

Hi Danelle, I have a friend who is a nurse who goes through the same thing when trying new medication. If you'd like, I can give you her phone # if you email me: Michelle@potsplace.com I usually start any new medication with a very low dose. If it's in capsule form I will pour some out. If it is a pill I will check with a pharmacist to see if I can cut it into a smaller dose. I also don't start any new medication unless someone is home with me if I were to have a negative reaction. It also helps to take it on a day that I am busy doing something so I am not preoccupied with every little palpitation, etc. That way I am not focusing on every little symptom and thinking it is a reaction to the medication. It is so easy to blame every little symptom on a new medication when you are taking it for the first time. Maybe the meds will help, maybe they won't, but you'll never know until you try them. I always tried to look at it in the sense that this new little pill in my hand might be my ticket to a better quality life, and that I at least deserved a chance at that. Best wishes, Michelle

Hi Lorrell! Thanks for posting about this; I had never heard of it before. Taking a B-complex has really helped me in the past. Unfortunately I now have stomach issues and have to be careful about taking vitamins. The salt tablets just kill me, but I can still drink pedialyte. Please keep us updated on your progress with this vitamin. I find it interesting. Michelle

Welcome to the board, Corina! I'm glad you found us. Michelle

There is also a doctor list at The American Autonomic Society's website. I second Nina's welcome to the board. We have a lot of good, caring people here that will help you however they can. Michelle

If doctors that are well versed in dysautonomia are telling you they don't think you have it, then you might not. If you think you have a heart problem you might find more people with similar symptoms on a forum that focuses on heart issues. As we have mentioned in your previous posts, some people with dysautonomia do have symptoms while lying down, but everything seems to be exacerbated by standing. Michelle

Nina, hope you're feeling better soon. Take whatever time you need to relax and recoup. Michelle

Interesting article, Nina! Michelle

I asked Dr. Grubb this question before. I naturally thought that since we have trouble with pooling blood we must be at higher risk for blood clots. However, he told me that some research has suggested just the opposite...that we are at less risk. I wish I could remember exactly why the research suggested that. This was about a year or two ago, so I don't know if beliefs have changed since. Michelle

I've had people tell me the body cooling vests really help them tolerate heat. There is a link to a company that sells them on our "what helps" page. Jessica, motrin really makes a big difference in me too. Glad to hear someone else is finding it beneficial. Interesting info on the asprin. I'd never heard of that one. Michelle

Emma, So good to see you on the forum. I don't fly...mostly because I'm a big chicken, but I also worry about exacerbating symptoms. Some patients have told me it makes them feel worse, others feel fine. One of these days I am going to get up the nerve and get on a plane and find out which kind of patient am I. We have a little blurb on flying on the "what to avoid" page: Travel by airplane is challenging for dysautonomics and may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some dysautonomia patients to hyperventilate. Hyperventilating makes a patient more likely to get symptoms of sympathetic activation (Robertson, 2002). Those with POTS do need to know that the air in an airplane is some of the driest in the world. Flying can have dehydrating effects in normal individuals. How much more so flying might dehydrate someone with low blood volume. Everyone should be well hydrated before boarding a plane. Also, normal people sometimes have trouble with blood pooling in their legs during flights. Rarely, this can lead to the development of blood clots. Patients prone to pooling blood may want to wear compression stockings when flying. Patients may also want to request a bulkhead seat, as this will give them more room to elevate their legs. See the specific page for references. Michelle

Thanks Dan, you're too sweet. And you are right...we do not have any sponsors or grants, nor are we affiliated with any other organizations. I, alone, paid for over three-quarters of this organization's expenses last year. As you know, that is something I cannot afford to do this year, and we really do need the financial support of our members. I want to continue helping everyone out there that is going through the same struggle I went through with dysautonomia. Every penny we receive is turned around and spent to help make life for dysautonomia patients better. No one at DINET gets paid. Anyhow, now I feel like the one pitchin' on public television...LOL! I really hate asking for money, but if DINET is going to survive I'm going to have to get used to begging. Thanks for all the support you have provided both here and through your emails. You know I keep you in my prayers. Michelle

I'm so sorry for your friends. How sad. They (and you) will be in my thoughts and prayers. Michelle

Sorry - I know I posted "vertical wheelchair" at first. I meant to post "horizontal wheelchair". Hope that wasn't too confusing. Michelle

We're always here for you, Dan! I wish you the best. Michelle

Bumping this so everyone can read....

Vickie, my son just told me you called the other day. Sorry, I haven't been home much this week, but you might be able to reach me Thursday or Friday. Take care, Michelle

You can email me, Michelle, at: Michelle@potsplace.com Michelle

Ditto what the others here have said. I was sensitive to noise, light and strong smells/chemicals when I was first ill. Since the ANS is involved in processing incoming stimuli, my theory is that since the sympathetic system is running in overdrive we might be "hyper-responding" to our environment. Again, that is only a theory....hopefully a doctor will publish some information on this in the future. Michelle

Futurehope, my friend has been told she has POTS by one doctor, and PAF by another. I think she has more than just POTS or PAF. She has a condition where the cartilage in her knees is breaking down, so she can't even crawl anymore. She can't walk at all. Despite her limitations, she is an incredibly positive, inspirational person. She writes beautiful poetry, and recently had one of her poems published. I don't know the specifics of her vertical wheelchair....she just wrote to me and told me how excited she was to have finally gotten it. It really helps her to make it through church services and such. Michelle

Please take a few moments to read the updated Forum Disclaimer listed under the "Welcome to the forum" topic pinned at the top of this forum. Thanks for your cooperation, Michelle Sawicki

One of my friends has such a hard time with sitting that she has had to resort to using a horizontal wheelchair. She is an amazing person, with an incredibly positive outlook on life, despite her inability to walk or even crawl anymore. She really is an inspiration to me. Michelle Sorry - I know I posted "vertical wheelchair" at first. I meant to post "horizontal wheelchair". Hope that wasn't too confusing.

Thanks Julie! This is Debbie's conference for the kids with dysautonomia, so you might want to ask her if she needs help. Last I checked, I think she had everything covered though. That's really sweet of you to offer. Michelle

Thanks to all of you who replied. I will wait a few more days to see if anyone else pipes in, and then I will send this on to my friend. I know she will be very grateful for your replies, so thank you! Michelle

I'll keep the little one and her family in my prayers. Michelle

Debbie, you are very right. DINET is run from donation to donation. There are so many ways in which we can make a difference in educating patients and physicians. However, it all costs money. I'd love to say that I am independently wealthy and that I alone can pay to make DINET's CD's and publish informational material, but that just isn't so. I rely on each and every DINET member to make educating both physicians and patients possible, and I rely on DINET members to cover DINET's operating costs. I do hate to ask for donations, but they are needed badly. We do what we can with the little funds we receive, but it's a far cry from what we could do if everyone on this forum banned together in the fight against dysautonomia. If you want to educate people against dysautonomia, you can't go wrong by supporting active orgainizations like DINET or DYNA that are set up to make things better for us all. Just think of what we could do if we all banned together... Michelle