Sara831 Posted May 19, 2004 Report Share Posted May 19, 2004 Hello,I am 15 years old, and since January i have whatched how horrible having a dysautonomic disease can be. My mom, Sallyannsturgill, had passed out at work and hadnt stopped passing out or feeling horible since. She had a tilt table test that was positive for Neurocardiogentic Syncope. I saw how hard things were for her to the point where she was often frightend to leave the home, and had to go on sick leave from work. she would always tell my dad that he could never understand what she was going through but i had always felt sick and dizzy my whole life, and had come close to passing out several times. In third grade I had many tests on my head to see why i often felt 'in a dream state'. Of course, all were negative. About three weeks ago, i passed out in my bathroom and fell so hard they thought i had fratured my back, and stayed out for a long time untill my dad picked me up off the floor. When we started talking to all of my moms doctors we were met with most thinking i had faked it for attention since my mom was passing out. that was so frusterating! My moms cardiologist did take me seriously and set me up for a tilt table test that i had a week ago. I vomited and passed out before the table had came to a full upright position. I too have Neurocardiogentic Syncope and i can say I understand how horrible it is to have a dysautonomic Disease first-hand. I am really confused why my mom, age 41, and me, age 15, with both be strongly faced with this within months of eachother. I have been feeling worse since then, and today I had my first episode at school. I struggle with Brain Fog pretty badly, and I was wondering if anyone has any suggestions to help with that? I will not ever give up my search to find a way for me and my mom, who is my best friend, to live a normal and healty life. I wish the best of luck to all of you. -Sara[font=Times] Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 19, 2004 Report Share Posted May 19, 2004 (edited) The only thing I can say is that when the rest of my symptoms are under control, so is the brain fog. When my blood pressure or heart rate are doing okay, so is my brain and attention abilities. If you've not been on any treatment, that would be the place to start. There are non-medication treatments, including eating more salt, drinking more fluid and wearing compression stockings. You should read through the main sections of the http://www.dinet.org site. Michelle has tons of info on there. In addition, NDRF offers a free pdf download of their book, The NDRF Handbook for Patients with Dysautonomias. A hard copy costs about 30$. http://www.ndrf.org/NDRFHandbook.htmWelcome to the board -- I understand you and your mom don't live all that far away from where I am, just outside of Philly Nina Edited May 19, 2004 by MightyMouse Quote Link to comment Share on other sites More sharing options...
beala Posted May 19, 2004 Report Share Posted May 19, 2004 sara831brain fogI wish I knew-my sixteen year old son has pots and his biggest compliant is brain fog. Nothing the Dr. has suggested has helped, he has suggested our primary Dr. give us a ssri to see if that will help_have heard clexea and welbetrin have helped some people.But my son is not anxios to try any more drugs right now we have tried sooo many. We have an appt to se Dr. Grubb this August hope he might have some ideas-Who is your Dr? Good Luck to you ~ Quote Link to comment Share on other sites More sharing options...
Sara831 Posted May 20, 2004 Author Report Share Posted May 20, 2004 I wish the best of luck to your son, i understand how frustarating it can be. I have had a bad experience with the drug, Zoloft, before (It made me feel horrible and crazy) so I am very scared to try any other medictions as well. My Doctor is Dr. Pennington, and hes a Cardiologst. I hope everything turns out alright with you. -Sara Quote Link to comment Share on other sites More sharing options...
Sak Posted May 20, 2004 Report Share Posted May 20, 2004 I wish the best of luck to your son, i understand how frustarating it can be. I have had a bad experience with the drug, Zoloft, before (It made me feel horrible and crazy) so I am very scared to try any other medictions as well. My Doctor is Dr. Pennington, and hes a Cardiologst. I hope everything turns out alright with you. -Sara My experience has been that SSRIs worsen brain fog. The only effective medications I've found for it are CNS stimulants. Unfortunately, when they wear off, they tend to exacerbate the physical symptoms of the dysautonomia. This is something I'm learning to live with. With Adderall, at least I can work well for about four or five hours a day, as opposed to zero. Quote Link to comment Share on other sites More sharing options...
beala Posted May 20, 2004 Report Share Posted May 20, 2004 Thanks, my son did use dexidrine for awhile but he was using others meds at the same time. Right now he wants to try nothing ,so I need to let him be, I just would like him to have a better senior year, being his last year of high school. We have a appt with Dr. Grubb this August so might see what he has to say. We have been going to Mayo in MN. Quote Link to comment Share on other sites More sharing options...
Sara831 Posted May 21, 2004 Author Report Share Posted May 21, 2004 I hope he can a good senior year even off any meds. Let me know how Dr. Grubb works for you. Me and my mom have stayed with our cardiologist, and were looking for another doctor thats more expeirenced with dysautonomia. Thanks. Quote Link to comment Share on other sites More sharing options...
beala Posted May 23, 2004 Report Share Posted May 23, 2004 Best wishes to you and your Mom~ you sound very close LauraLooking forward to having a break from school soon~ Quote Link to comment Share on other sites More sharing options...
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