Connie

We are in NC.

Christy, Good luck with getting your son back to school. I hope you have success at the Mayo clinic October. Sometimes it feels like a long haul. Hope

Today my son received a new diagnosis - mast cell activation in addition to POTS with hypermobility. I am certainly hoping we can turn the corner after a long ride. In addition she thinks a lot of his "brain fog" is called by Topamax. His cardiologist prescribed 400 mg a day. She want him off of Topamax totally since he is having so many memory issues. She wants him to see a Neurologist who specializes in migraine treatment to work with us on his migraines and daily headaches. She wants him to see a physical therapist for exercise therapy so they can monitor his vital signs - long haul. Looks like our work is cut out for us finding the different medical staff and my son's work in getting more active. But I am very pleased to start down a different path since the other path was not working. Will try to keep everyone informed.

If you are a nurse, can you try working for an insurance company? Or a manufacturing facility? I am sure there are other companies that hire nurses where the work would not be as intense or strenuous. Hope

My son salt loads when his blood pressure gets real low and he is having an extremely bad day. He can eat a bag of salt and vinegar potato chips and drink a lot of fluids it seems to help him. He doesn't do it often only when he is about to pass out and his blood pressure real low. He has days like this if he becomes too hot for instance.

My son had the same test at Duke and it took a little while but his system is really fast so the dye moved thru in 20 minutes. But of course you have to set up everything so I guess it took about 1 1/2 at the most for us. But we had the test done about 3 - 4 years ago. I remember the person doing the test telling me that my son's system was very fast. I hope things get better for everybody and Kayleigh stabilizes. Please keep us posted. I will be praying for you and your family. Hope

One field to look at is Customer Service without going back to school. You will have a lot of experience in this field. Some companies are paying a nice salary for good customer service reps because they realize the value.

I hope your daughter is doing better. It sounds like you are doing a great job watching her and noticing how the medications are effecting her. My son's Dr at Duke is Dr. Carboni and he is an excellent surgeon. He is the Dr that diagnosed my son. If you have to see someone before next Monday, I would ask to see him of possible. I hope things turn around soon for K. Please try to take care of yourself too. Lots of hugs, Hope

I am sorry you have to go through all this. I know Duke's Children's Hospital Cardiology Dept has a cardiologist on call 24/7. I would call Duke and explain the situation to the cardiologist on call. Perhaps he can or have your physician call the Dr at the hospital you are at. I would give it a shot. You have nothing to lose. I hope things stabilize soon. Good Luck. I will be praying for you and your family. Hope

Well if the heart is topping completely then it would make sense to need the pacemaker. Good luck with everything at Duke.

This is interesting because my son sees another cardiologist at Duke for POTS and bradycardia. We were told they are not sure if a pacemaker would help or not. I know sometimes it is worth it to try a pacemaker. I think I would ask for a second opinion if this is what they recommend.

Dr. Blair Grubb is in Toledo, OH at The University of Toledo Medical Center. Several patients see him and he sees pediatric patients. He saw my son when he was 13 and children are seen much sooner. Our wait was less than 2 months. We liked him and it was ok for diagnosis not good for trying to find the combinations of medications that will work for my son.

My experience weaning off SSRI was terrible to the point it took me over two months. I ended up gradually coming off to the point I took a fourth of a pill for over three weeks trying not to be dizzy, having nausea, and/or chills. I thought at first I had a virus until my sister and I put things together. I hope I never have to take a SSRI again. Especially Effexor.

My sons: 1. Extreme fatigue 2. Severe memory issues 3. Itchy skin, flushing 4. Migraines, daily headaches 5. Sleeping issues

I take my son to a regular physician who is willing to try different medications. I have not been able to find a Dr. that specializes in POTS in NC. My son is being checked for a possible mast cell disorder and the Dr. checking him told me she works with a Dr. closely. When I find out the physicians name I will be glad to let you know. Unfortunately it will be about two months before we obtain all the lab results back from the mast cell issue. As far as Dr. Grubbs, I was glad we went and we did receive a slightly different diagnosis from him than from Duke. I feel it is too hard to work long distance on trying to find medications that work even though our regular physician is willing to work with Dr. Grubbs. All the medications we have tried have not worked. That is one reason I am looking at another illness. I feel there is more than one illness involved. As you probably will discover in order for your daughter to receive the best of care you will have to champion her medical care. That is one reason I love this Forum. It has made such a difference to my mental wellbeing. Everyone on the Forum is so supportive and helpful. It makes such a difference to me to know we are not alone. I spend a lot of time researching POTS and other illnesses to try to be as supportive of my son as possible. I have finally realized I need to apply for disability for him because his memory issues are so severe. That has been a long process for me. I hope you are able to receive a diagnosis for your daughter and hopefully the medicines to treat her. Again as soon as I have the name of the physician in NC that specializes in Dysautonomia I will pass along the name to you. Try to stay as positive as you can and trust your instincts as a mom. Good luck at Duke.