LisaColumbus

Does anyone know if cerebral aneurysms are frequent occurrences among POTS/NCS patients? I had an MRI done yesterday because of experiencing short term paralysis, confusion etc last week as well as frequently feeling as if my brain is shaking inside my skull. This morning the doctors office called, it seems that I have an aneurysm. Talk about shock! I had to go back in for an MRA earlier today and am awaiting the outcome of that. I tried to call Dr Grubb to find out if I should quit taking the florinef and adderall because as this point I am not sure how those meds affect cerebral blood pressure, but he is out till December and the nurses wouldn't give me a yes or no. Has anyone here experienced this? If so any ideas, recommendations? I am scheduled to see a neurologist tomorrow afternoon, is that the right type of doctor for this type of thing? I am SO clueless with all this and am a tad bit freaked out. Thanks, Lisa

I was told this afternoon that he is out until sometime in December. He will be in my prayers. Lisa

I am taking Adderall XR 20mg. Dr Grubb tried to increase it to 25mg but I wasn't able to sleep at all with that dosage. I'm sure they also base dosage on various criteria (weight etc). I am 95# and take 20mg once a day Lisa

Yes they are all being seen by Dr Grubb for autonomic issues. It seems to run rampant in our family. My mom and grandmother both have autonomic problems as well, even though they don't see Dr Grubb. I am hoping my kids don't have these issues but unfortunately my 13 year old is already exhibiting signs. Happy Birthday to you! And thanks all for the warm welcome Lisa

Hi all, I've been lurking for awhile and decided to take the leap and join you. My name is Lisa, I am from Columbus, Ohio, 37 years old and a mom of 3. I am a patient of Dr Grubb, as is my sister, 2 cousins and a nephew. I became ill suddenly in January 2003. It was pretty much like running into a brick wall. I went from being a go-go-go person to being unable to crawl to the bathroom. After bouncing around from doctor to doctor and then to cardiologist to cardiologist, I was eventually dx'd with NCS, POTS and CFS. The cardiologist originally prescribed florinef, atenolol, potassium, and a variety of SRI's. I am extremely sensitive to meds and wound up in the hospital barely able to speak, unable to write my name etc. I was finally able to get in to see Dr Grubb in Oct of 2003. He changed the meds to Adderall, Florinef and Potassium. What a miraculous combination that was! I was able to get off disability and back to work for six months or so. But eventually those meds quit working. So now I am struggling to work 3 days a week and am basically in bed the rest of the time. I'm getting really frustrated and just want my life back. My next appointment with Dr Grubb isn't until January and I can't find a doctor in the Columbus area that has a clue about how to treat any of this stuff. So that's my story, I am looking forward to getting to know all of you and learn from you as well. Lisa