Introduction, Unusual Leg Involvement/

[Randi Free]

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

[pat57]

I have. I have neurocardiogenic syncope, which is indicated by your post also. I am also on Norpace. "We" (folks on Norpace) are a minority- that's for sure.

99 out of 100 times the weakness starts with being in a daze or leg heaviness. However I have totally lost muscle tone (out of the blue)in my legs a few times- while maintaining cognitive functions at what I thought was normal.

It is a strange thing.

It has not happened since being on the Norpace (for me).

Tell your daughter to get a few immediate release Norpace capsules as "rescue medicine" to be used in the event of taking a dose late. . Controlled release can take as long as 3 hours to be at full levels. Immediate release only 20 minutes- tops. Also have Dr. explain proper use for optimal blood levels.

She needs to take the medicine religiously. That is -I do.

Has she tried graduated compression stockings?

I suggest also that she stamp her feet- in the sitting position before rising- it might help. I do this instinctively. If I was forced to guess at the problem for this occurrence MY GUESS would be

lack of circulation in the legs

leading to lack of oxygen to the muscles

leading to profound lose of muscle tone.

I find this very helpful also

http://www.forgettingthepill.com/cgi-bin/F...+Timers+1+383+1

[Megan]

I have had this issue before. Actually, sometimes I lose control of my legs completely and I have to stay in bed for a few hours until feeling and movement come back. I've always just attributed it to POTS.

Meg

[Jersey Girl]

I am so sorry your daughter has these horrible symptoms. Reading your post reminded me of when I was initially ill and did not have a diagnosis. I vividly remember not being able to get up off a stretcher after having an MRI because my legs wouldn't support me--it was so frightening. I have had POTS for over 6 years and still have weakness in my legs on a regular basis--exercises have helped somewhat. Martha

[Randi Free]

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

I am so sorry your daughter has these horrible symptoms. Reading your post reminded me of when I was initially ill and did not have a diagnosis. I vividly remember not being able to get up off a stretcher after having an MRI because my legs wouldn't support me--it was so frightening. I have had POTS for over 6 years and still have weakness in my legs on a regular basis--exercises have helped somewhat. Martha