Randi Free

She is having shooting pain in the fronts of her thighs and says it feels like overwhelming muscle weakness. No lightheadedness or worsening of POTS symptoms. I'm beginning to wonder if the POTS and now this are both symptoms of some underlying illness. I'm doing all this looking on the internet and I keep coming acrss stuff where some of the symptoms fit but then I hit a roadblock because she isn't having the most common symptoms. Has anyone here hears of Friedreich's ataxia? She went on vacation to Virgina months before this all started and I'm wondering if it could be Lymes disease. I know I'm really reaching but these two things just don't seem related. Randi

My daughter has been walking fairly well since her release from the hospital last month. She does fall probably once a day but in between does ok. This morning she stood up out of bed and fell to the floor and has been unable to stand on her own. She is crawling to get around the house and doesn't want to go the the ER as last time this happened they hospitalized her and didn't figure out anything. It just got better on it's own after 3 days. MRI of the head and back show nothing. x-rays of the hips , legs and knees show nothing. With the exception of elevated CPK all labs were pretty good. I don't know where to go from here or even what other tests should be asked for. The neuro doc she saw in the hospital said she has a history of anxiety disorder and I think he blames all of her symptoms on that. The cardiologist thinks it's the POTS but she isn't blacking out or even feeling faint. Randi

ED-Ehlers Danlos, sorry for not being explicit. Guess that could have been several things :Hi Randi, can you explain "ED"? Thanks

My daughter has been dealing with an elevated temperature for about a week now. It gets up to about 101 degrees. She isn't sick. We are wondering if this is a POTS thing? Seems reasonable that if she has no automate control over blood pressure and heart rate it could extend to whatever controls body temperature?I called the cardiologist and spoke to his assistant yesterday. He has no idea about this but he did say that the daily falling down doesn't sound POTS related if she isn't blacking out with it? We see the cardiologist again Tuesday. Can anyone tell me what tests we would need to ask for to rule out ED. Randi

My sister developed vasculitis of the central nervous system. Hers was a rare side effect of chemo. Her first symptom was a grand mal seizure. She was put on several medications for it and after the first 24 hours it kept her seizures pretty well controlled. She also had mental confusion for several days after the first seizure which also cleared up. I don't know if vasculitis is throughout the body or if it can effect only certain areas?

My 23 year old daughter is doing ok since being discharged from the hospital 3 weeks ago. She is much steadier on her legs but is still falling at least 4 times a week. We decided to go to the mall Saturday and she had been walking for maybe 5 minutes when she just fell with no warning. She didn't black out or even begin to her legs just went out from under her. This happened again yesterday in 7-11. She hadn't been standing ther every long at all. I understand falling if you pass out but falling without any other symptoms doesn't seem attributable to the POTS. She has also started getting nausea to the point where she is throwing up at least once a day. Usually it comes on when she has been sitting. Her heart rate will go up to about 150 and she'll feel sick right before she throws up. Anyone else with these kind of symptoms? We go in for a third follow up with the cardiologist on the 20th and I don't know what kind of tests to ask for. Randi

Has anyone noticed whether drinking acohol helps or worsens POTS symptoms? Also, for her leg tremors and weakness the doctor gave my daughter clonipin which does seem to help a little. The norpace seems to be helping the most though as long as she takes it regularly. she has a prescription for flexeril but hasn't tried it yet. Just wondering if anyone else has tried these things.

Martha, Can you tell me what exercises seem to help you ? I go to the YMCA regularly and until several months ago my daughter went with me. Our favorite thing was the nordic track but there is no way she could do that now. I also do Pilates but I don't know about that either. Thanks, Randi

Just a thought. Have you had a colonoscopy to rule out anything inside the colon which a CT scan would not reveal? I had a CT scan for abdominal pain which showed nothing. A colonoscopy found a 9 cm. tumor in the sigmoid colon. It's a long shot and in the absence of any other symptoms not too worrying. It's not a painful test and you are so sedated that you don't remember it.

My 23 year old daughter has been diagnosed with POTS. She woke up about 3 months ago with chest pain and shortness of breath. She had an abnormal EKG and her resting heart rate was 112. She was fitted with an event mnitor which went off every few minutes for the 2 weeks she wore it. Mostly tachycardia. What I dont understand about that is that she is having an elevated heart rate of up to 175 bpm during sleep. She had a tilt test whereher heart rate went up over 30 beats a minute after about 10 minutes. Her blood pressure dropped to 40/30 and the test was stopped. her shortness of breath and chest pain has gotten worse over the last 3 months. About 2 weeks ago her legs started giving out on her with no warning and she would fall. Within 3 days she was hospitalized and unable to even stand on her own. She had an echo, CT scans, MRI's of her head and back, xrays of her hips, legs and knees and nothing unusual was found. She gradually improved to a walker and now a cane. she has been prescribed physical therapy for her legs and her cardiologist is attributing it to the POTS. Has anyone else got this leg involvement? She also has been diagnosed with atrial flutter as the event monitor showed episodes of her upper heart beating at about 300 bpm. She has been put on norpace for this. She is on clonipen for her legs and fludocrt for the BP. None of this sounds like the stories Ive read on this list and I don't know what to do next. We are in Colorado and I have't been able to find a doctor whospecializes in POTS locally. Any input would be appreciated. Thanks