Michelle Sawicki

Hi, Please do see a cardiologist. My sister has atrial fibrillation and describes it as a "jiggling feeling". There are probably several different things that can cause the jiggling feeling, and a good doctor will be able to check into it for you. Best wishes, Michelle

Interesting article Pam! Thanks for posting. Michelle

I'm happy for you! Michelle

I haven't heard of geographical tongue being related to dysautonomia. You might want to ask a dysautonomia doctor, though. Michelle

Hooray! I know you were really hoping to get in. Can't believe you got in so quick...that is WONDERFUL. Make sure you keep us updated! Michelle

Oh can I relate! When I first became ill with POTS I craved water. I drank glass after glass and could never quench my thirst. I can tell you that this symptom can improve...I still drink a lot of water, but I no longer have that unquenchable thirst. In retrospect, I now wonder if desmopressin may have helped this symptom. Hopefully the florinef will help you to retain water and be less thirsty. One thing I found that did help me was drinking pedialyte. My heart goes out to you. I know this is a miserable symptom. Michelle

Hi Jessica! Have you checked out this website: http://www.orthop.washington.edu/arthritis...ehlersdanlos/01 Did he mention any possibility of EDS type II (the milder classical form)? The geneticist I saw told me that my other family members would either have classical EDS or not have it....that it was cut and dry. This doesn't exactly seem to be the case with my family. One sister has very stretchy EDS-like skin on her face, and the other is very hypermobile. The one with the stretchy skin on her face occasionally has problems with pooling blood. The hypermobile one has fainted a few times. My son, a green-eyed blond, has the same stretchy skin on his back that I do. He has had an excessive increase in heart rate and a drop in blood pressure at times, though it seems not to affect him much and he lives a very active life. He is not hypermobile at all. Not sure what to make of all this....and I'm not sure that the doctors have it all figured out either. I think we still have a lot to learn. Michelle

I've always wondered if maybe it was the interaction between calcium and other minerals at the cellular level that could be the reason. Who know? I did come across this article while researching, which I thought was interesting: http://www.eurekalert.org/pub_releases/200...s-rrc020304.php Michelle

I don't think Sid Gliman treats POTS...I think he is more into MSA. I've seen Dr. Russell at UofM. He tested me for everything under the sun when I went to see him. I think I talked to Dr. Rogers on the phone awhile back...(if I'm remembering the right doctor) he seemed nice, but I've never personally seen him as a patient. Here's Dr. Russell's contact info: Dr. James Russell 4410 Kresge III 200 Zina Pitcher Ann Arbor, MI 48109 734-936-9020 If you've been to UofM, he's in the Taubman Center. He used to have a really nice resident working for him, Ryan Kaplan, but he moved on. Best wishes, Michelle

Marg, Scoliosis can be a symptom of Ehlers-Danlos syndrome, which has been linked to POTS. Has your daughter been checked for it? Michelle

This doctor is listed on the American Autonomic Society website: Frisca L. Yan-Go, M.D. Department of Neurology UCLA 710 Westwood Plaza Los Angeles, CA 90095 USA Phone: 310-206-8005 Fax: 310-794-7491 E-mail: fyango@ucla.edu Multiple System Atrophy (Shy-Drager Syndrome) Autonomic Failure (PAF, secondary Autonomic Failures) Orthostatic Intolerance (POTS, mitral valve prolapse) Sleep Distrubance and Autonomic Disorders I don't know anything about him/her? The doctor I was referring to in an earlier post was Dr. Rick Boles. As far as I know, he treats children. Here is his contact info: Los Angeles Division of Medical Genetics Box 90 Children's Hospital of Los Angeles PO Box 54700 Los Angeles, CA 90054-0700 Main program telephone: (323) 669-2178 Director: Richard Boles, MD Telephone: (213) 669-2178 Best wishes! Michelle

Glad to hear you are hanging in there, Dan. We're here for you. Michelle

Yep, I've had this too, and I'm 32. I think - in my case- it is tied to the sympathetic nervous system. Excessive blushing/flushing can be caused by an overactive sympathetic nervous system...I've had instances where I've suddenly felt very hot and flushed for no reason. It is always a good idea to mention any strange symptoms to your doctor. There are many things that can cause hot flashes, and they should be ruled out. Michelle

Hi Jackie! I had symptoms very similar to you when I first became ill, except I didn't have anxiety or a rash. Calcium has also made me feel worse. I know a doctor in California is doing some research on dysautonomia and mitochondrial disease. He's the only one I've heard mention rash as one of the presenting symptoms, though rash can be a symptom of many, many things. You mentioned that others in your family have dysautonomia. Does it seem to run in the males, females or both? Here are some answers to your other questions: I take 12.5 mg toprol (beta blocker) daily. (I cut a 25mg pill in half) Many women report a worsening of symptoms around menstruation and many people report GI problems. There are some doctors in Ohio listed on the physicians page of www.dinet.org We also have a "Meet Others" program that will put you in touch with others with dysautonomia in Ohio. You can sign up for it at the DINET site. I hope this helps! Michelle

Ok...you got me curious...here are the stats from the Meet Others Program as of today: Alabama - 3 Arizona - 3 Arkansas - 2 California - 9 Colorado - 4 Connecticut - 1 Delaware - 1 Florida - 12 Georgia - 5 Illinois - 15 Indiana - 3 Iowa - 3 Kansas - 3 Kentucky - 4 Maine - 2 Maryland/DC - 11 Massachusetts - 5 Michigan - 15 Minnesota - 7 Mississippi - 1 Missouri - 4 Montana - 1 New Jersey - 7 New York - 20 North Carolina - 18 North Dakota - 1 Ohio - 36 Oklahoma - 1 Oregon - 4 Pennsylvania - 13 South Carolina - 6 South Dakota - 2 Tennessee - 4 Texas - 17 Vermont - 1 Virginia - 13 Washington - 2 West Virginia - 4 Wisconsin - 12 Wyoming - 1 Other Countries: Australia - 4 Canada - 11 Germany - 1 Italy - 2 New Zealand - 2 Norway - 1 United Kingdom - 11 Interesting stats...maybe I will include them in the next newsletter. Michelle

I have more people in the Meet Others Program from Ohio than any other state. I'm not sure if it is because there are more doctors in Ohio that are familiar with dysautonomia, or if there is some other reason. The overwhelming majority of DINET members are on the East side of the US. If you slice the US down the middle, there are VERY few patients on the west side. However, there are also very few doctors in the western part of the US. Michelle

Dan went to the ER today after having another throat closing episode. This has been one of his most debilitating symptoms. Please keep him in your thoughts and prayers. Dan's medical journal is at: http://eye-q.com/POTS/LogInForm.asp Michelle

I have an "Intelli Sense" by Omron. It takes both blood pressure and heart rate. It works well, except for when my blood pressure is really low....then I just get "E" for error. I think the lowest it records is in the 60's...Lower than that I just get "E". Has anyone found a bp monitor that registers really low bp? Michelle

I would LOVE LOVE LOVE to have Dr. participation on this forum. However, my experiences with dysautonomia doctors is that they are SWAMPED. There are too few doctors and too many patients. Many doctors probably don't have time to read their mail, let alone read the forum. Though I think they would get a much better understanding of dysautonomia if they did read the forum. I went to a dysautonomia conference a couple of years ago where some of the big wig docs were presenting. One of them was actually standing up there saying "POTS symptoms are present at all times. If a patient comes to you that has POTS you will always be able to tell they have POTS. Their heart rate will always go up 30 beats per minute". Now I don't know about you guys, but there are days I feel really good and my heart rate might only go up 20 or less beats per minute. I suppose, if I went to see this doctor on one of those days he would tell me I didn't have POTS....? Scary, because these are the people publishing research about us and telling all the other doctors what our disorder is all about. But I've gone off on a tangent.... My hope is that more and more doctors will continue to get involved in treating and researching dysautonomias. I think most of us know we have limited time at the doctor's office and probably are only reporting our most severe symptoms. Hopefully more research will one day be published on the fluctuations of dysautonomia, and how patients can feel good one day and awful the next. Hopefully then people will begin to understand... Michelle

They have locals without epinephrine. You just have to let them know that you can't tolerate epinephrine. Best wishes, Michelle

Hi Vickie! It's great to have you join us! It's been a long time since we talked. Drop me a line and let me know how things are going when you get a chance (or just post it here ) Best wishes, Michelle

Hi Lisa! I've had POTS for almost 5 years now...since I was 27. I have regained much of my functionality. I returned to work (a part-time job) about a year after becoming ill. Michelle

Hi UnicornIsis! I used to get very shakey when I was at my worst with POTS. I had sudden onset as well and, like you, I have a connective tissue disorder that predisposes me to POTS. I can honestly say I don't think I had POTS all my life, even though I obviously had the connective tissue disorder. There is a "Meet Others Program" that you can sign up for at the www.dinet.org site. It will put you in touch with others with dysautonomia in your area. The contact information is mass mailed and sometimes filtered as spam, so make sure you check your "junk mail" every once in awhile if you do sign up. Welcome to the board! Michelle

Hi Carmen, Probably most everyone on this forum has been through a period where they were frustrated, discouraged, and possibly questioned their sanity. These disorders have so many odd symptoms, and few doctors understand them. One thing I have found that helps me greatly is drinking a glass of water before I get out of bed in the morning. Also, like Sally, I avoid sweets. Compression stockings help too. There are several different meds that are used to treat these disorders. Beta-blockers work for some, but not all. There is a list of meds on the "what helps" page of the www.dinet.org website. I know there aren't many docs in Canada that treat dysautonomia. If you can, I encourage you to see one of the doctors that does. Best wishes, Michelle

I have this problem as well. I also noticed I'd hold my breath at inappropriate times, such as when walking up stairs. I now breathe much the way Pam described when I walk up stairs....slow, deeper, evenly spaced breaths...and I do much better. Michelle