November 5, 2014 at 12:54 pm #742IanCParticipant
My daughter has been dealing with so many different ailments for the last 5 or 6 years and only now do I believe we have a path to take towards an answer. Among other things she’s dealt with IBS, Migraines, ADD (or so its been diagnosed), low blood pressure and severe dizziness to the point she cannot walk and even while lying down the dizziness can be overwhelming. It’s had a big impact on her attendance at school and now that she’s driving there have been times that I’ve had to pick her up because the spells prevent her from getting behind the wheel. Every year for the last 5 or so years she gets very ill shortly after school starts and every year she is diagnosed with Mono. She use to get strep constantly but that seems to have gotten better. Lately she’s been dealing with bouts of severe depression and anxiety.
Her primary physician has been great in trying to find answers and she has a great rapport with my daughter. But it wasn’t my Doctor that suggested POTS it was a discussion I had with a friend from work, when asked how my daughter was doing, that triggered my discovery of POTS. He had a close friend with a son the same age as my daughter (16) that was suffering with many of the same symptoms my daughter was. He hooked us up and we compared notes. He had found out about POTS and had his son tested and since then treated for POTS. Now his son has EDS which my daughter does not but the symptoms were too similar to ignore.
There were too many times when I had to bring my daughter to the emergency room with severe migraines and dizziness and the constant fear I had that eventually a Doctor was going to tell me something no parent wants to hear. There have been no answers and every specialist essentially shrugged and threw drugs at the problem which never helped.
After speaking with my daughters Dr last week and explaining what I had learned she setup an appointment with a cardiologist and today is that appointment.
Still too early in the process to know anything but as I was collecting data online to print out and share with the cardiologist I also started searching through YouTube to look for videos of other patients diagnosed and what their symptoms were. I wanted to share these videos with the Doctor as well. That’s when I stumbled across the videos posted by Dr. Driscoll. I learned a lot more about the disorder and what to look for as well as some things that I would never had thought could be related. I’ve still got a lot of research to do but I think we are finally on the right path!
I’m extremely proud of my daughter and how she’s dealt with all of this over the years. She’s still only 17 but she attends an early college school and is number one in her class. She missed so much school this past year due to these symptoms that the school board got involved because she had gone below the legal requirement for days attended. Fortunately all the days she missed were accompanied by a Dr. note and explanations but it was still a fight. Her Dr. volunteered to contact the school but fortunately it never came to that. Explaining to them that despite having missed more days than allowed she was getting A’s in all her college courses by doing the work from home and making up what she could when she was strong enough to keep her head up and focus on the assignments. She studies Japanese on her own time and takes a course after school. Needless to say I was livid that the school would have even suggested taking action. Since then I’ve printed out what information I thought was relevant and had my daughter share it with her teachers, professors and the school administration.
So glad I stumbled across this information and especially across Dr. Driscoll’s findings on the topic!
Fingers crossed! I hope we find the right Doctors and the treatments to help her better deal with what’s going on. If anyone from the North Carolina, US area knows of knowledgeable Dr’s here I’d love to hear about them.November 6, 2014 at 10:38 pm #5103Dr. DianaKeymaster
Hi IanC, Yes! Strep and mono are two HUGE triggers for POTS. I do not believe that hypermobility (or EDS) is necessary for this to occur and I’ll sometimes see some members of a family are hypermobile and some are not (but all have POTS). I hope the book can help get you started with some immediate help, as we work toward identifying the *true* underlying problem (and how to correct it). There is life after this diagnosis — trust me. Gentle hugs, Diana
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