Pacemaker for NCS?

[Lee9709]

Has any one out there had a pacemaker with NCS?  If so did it help?

[Lee9709]

We live in South Georgia.  A dysautonomia website recommended a Dr. Kusomoto, who is a cardiologist at Mayo in Jacksonville Fl, however we could not get an appointment with him, but they said they had three Dr's there that specialize in NCS.  My insurance is actually BCBS of Tennessee, but Vanderbuilt will not adolescents.

[halbashes]

I'm sorry, I just realized that you mentioned Mayo Clinic in your above post.  Was he seen by one of the Autonomic Neurology Specialists in Minnesota?

[halbashes]

I'm sorry your son has experienced so much difficulty with his diagnosis, and treatment.  Where is he being seen currently?  Has he ever been seen by a team of specialists in an academic teaching hospital?  If not, I would recommend that as being the next step.

[Lee9709]

My 16 year old son has NCS.  He had been treated for epilepsy for 3 years without any control, and actually started having gran mal seizures while taking epilectic med Keppra I requested a cardiac work-up due to these gran mals occuring immediatly after exercise.  He also had a hx of migraines after exercise, but these had subsided about the time I noticed these Absence seizure  like activity.  The cardiologist right away said he thought it was NCS, poss with a seizure disorder too.  We did have a tilt table, he bcame sick  (nausea and chest pain) and his heart rate dropped from 122 to 70 in a matter of one minute,  The Dr. stopped the test, and they didn't get a bp.  We started him on increased fluids 4 quarts water, 2 -20 oz gatoraides daily.  Florinef, remained on lamictal, weaned him off keppra and the gran mal stopped, only had 2 in past year and these happened with a decrease in fluid, and after prolonged standing, but these absence activity still continues2-3 times a day.  They are noted with a change in position sitting to standing, out burst of laughter, I took him to mayo and they are going to redo his tilt table and the Dr said he will not stop the test.  I am a RN and I just believe it is related to the syncope due to his resistance to seizure meds (5), and has been on 2-3 at a time and this activity is unaffected.  I have been wondering if he is having a bradycardiac episode if perhaps a pacer would help stop even more vasodialation.  I sorry this post is rather long, but just wanted to give you the picture of what is going on.... It has now been 4 years and my son is waiting drive!!!!! Thanks for your response.

[halbashes]

I do not have a pacemaker, but it has been discussed as an option for me in the past.  Do you have NCS?  Is your specialist considering a pacemaker to help control your symptoms?

Depending upon the exact mechanism of the patients symptoms, a pacemaker may help to eliminate some fainting episodes.  Though, I wouldn't expect it to eliminate all symptoms.  It could, but it won't necessarily because the patients blood pressure could still crash.

Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196