ETOLY

Hi Everyone, Thank you all for your responses today. I thought I would pass along the URL for easy access to the research abstract in DINET's Spring 2007 newsletter: http://www.dinet.org/Spring07/spr07news3.htm I also found that the full article is available online, but you need a subscription to access it at www.cardiologyinreview.com. Doctorguest, if you get to read the article, would be interested in hearing your thoughts. Thanks again, Etoly

I was reading the Spring 2007 newsletter abstracts on the research page and came upon "The postural tachycardia syndrome. Medow MS, Stewart JM. Cardiol Rev. 2007 Mar-Apr;15(2):67-75." In this abstract it notes: "Adults with POTS do not have hypotension, whereas children may exhibit hypotension." I didn't believe that this statement was correct, so I emailed Marvin Medow, one of the authors of this abstract. He wrote me back today: "Thank you for your comment. While the statement regarding hypotension may be untrue for you, it is generally true for the majority of POTS subjects who have been studied. As in most situations describing human physiology, there are always exceptions to the rule." I thought I would get the opinion of people on this site. I know you don't have to have hypotension to have POTS, but I didn't think it was that uncommon. Etoly

I found an article on the Good Morning Arizona website that looks like it was based on this video found at: http://medicaledge.org/2006june-3.html Could this possibly be what your Nana saw? Etoly

I like the idea of a conference as well! Although I think that instead of a national conference, regional conferences would be nice. Then it would be easier for people with dysautonomia to attend, doctors and researchers from a region could also attend to educate and be educated, and all interested parties could meet. I also would like to see a call center where a person could talk to a live person and get direction. Doctor referrals, job accomodation referrals, equipment referrals, and anything that would help someone with dysautonomia have an easier life would be handled through this call center. Call center personnel as well as referrals would need to be checked out or educated to make sure that whoever will be giving assistance is knowledgeable in the overall needs of someone with dysautonomia. Then I would like to see PSAs (public service announcements) to begin educating the world on dysautonomia issues. Etoly

I appreciate your offer, but please do not look for any literature about dysautonomia being a possible cause of IBS. I would delete this, but not sure how. Just take care. ETOLY

Bump

How about contacting the National Dysautonomia Research Foundation and see if there is something you can do for them. Etoly

Hi, You must realize that whenever a study is put together there are certain things that the researchers are looking for for that particular study. That is for ALL types of studies. I know that not all POTS studies are or will be looking to study people who faint. If you don't fit the qualifications for a particular study, there may be one that will come along soon that you will fit. Etoly

Dino, I would be careful with trying out any herbs without a doctor overseeing what you are taking. You could be allergic to something in the herbs and make things worse. Etoly

Hi Dino, I think you should call Dr. Robertson yourself. You may get answers quicker about the medication and the other treatments the allergist is thinking of giving to you. There are also many environmental controls that you can do to help your allergies. Your allergist should have a list of these. My understanding is that allergies makes POTS symptoms worse, so getting the allergies/asthma under control could make you feel better in more ways than you think. Etoly

Hi, Thanks Tearose (and blackwolf and Mighty Mouse) for your responses. I know that malignant hypothermia is fairly rare and since no one else, except one relative, has had a reaction to anesthesia...that we know of...we just have never been sure which side of the family it comes from. We are aware of the tests that can be done to see who carries the gene, just don't believe it has been done yet. It is interesting that three people on this site..so far...have both POTS and malignant hypothermia in their families though. Not sure if there is a direct connection, but since MH is fairly rare and POTS, more common, but still not widespread....there may be some relationship there. Etoly

Hi, I noticed in another topic string that Tearose's sons have malignant hyperthermia. I also have a close relative with malignant hyperthermia. We know that it is genetic, but no one else in the family is known to have it. I have been looking to see if there is a POTS - Malignant hyperthermia connection. Does anyone else here with POTS have a relative with Malignant hyperthermia? Thanks, ETOLY

Hi Kristen, Do you have some type of a child care backup plan for when your husband is out of town? For instance, a trusted friend or family member who can care for your children when you have heightened symptoms? Every parent may find that there comes a time when emergency child care is needed. You might want to build up a list of possible people you trust, and your children know well, for when these situations arise. ETOLY

Just thought that I would add that I sometimes take my own pillow and after the plane is up in the air and it is safe, I lie down and, if it is a longer flight, I go to sleep. If there is not an empty seat or seats next to me, I would let the flight attendants know that I have a medical problem and need to lie down and ask if there is an area of seats available for me to go and lie down. Plus it is always nice to have your own pillow when you are away from home! Etoly

I am from the west coast. I did not get diagnosed until I moved to the east coast. From what I have read so far, there seems to be less research being done on POTS on the west coast. Also, there may be less doctors on the west coast specializing in POTS so it may be that it is just not getting diagnosed. Etoly