Possible PAF or MSA

[scrub146]

HI, I am new to this site and hope this question will not be a stupid one!  I was diagnosed in July 2010 with Nuerocardiogenic Syncope  but have other symptoms such as constipation, blurred vision that comes and goes, stiff neck and shoulder area, frequent urination, along with muscle stiffness after doing my cardio rehab or sitting for periods of time.  I also have high blood pressure and it has been a problem of keeping my bllod pressure at an exceptable level as it is usually to high or too low causing the syncope problems.  I cannot help but think this is possibly PAF or something else.  It appears that my cardiologist is at a loss as too how regulate my pressure or he just doesn't know much about this disease.  Just wondering what your opinion was as to possible treatment for someone with high blood pressure and Neurocardiogenic Syncope or if this is likely some other disease.  I had a tilt table performed and passed out with a bp of 58/0.  I have also been diagnosed with Obstructive sleep Apnea.  I am only 38 and do not want to go throug life like this!

[mtgardner]

Great!  Let us know how it all goes.  Marie

[scrub146]

Thanks all, going to Nuerologists in December!

[mtgardner]

My first diagnoses is PAF and I came into it with high blood pressure.  I had to wean off all of my BP meds as my BP continued to drop (3 meds dropped in all).  Then I started having surges of high BP and had to go back on one of the meds to help control it and pulse rate as well.  I think the body tries for homeostasis but often overshoots both directions initially. I realize that PAF is often given as a first dx and later on as more symptoms are developed the dx changes.  Many people on this forum start with one dx and end up with another or add to the first one.  I have now had neuropathy added to the mix that may be due to Hashimoto's and I have muscle fatigue as well.  I have an endo visit, my first ever, scheduled for mid-January.  I think when it comes to dx nothing is written in blood so to speak.  It is important to have someone manage your BP who is an expert at it.  I am still trying to get testing at a center and like Stephanie think that is a good idea for anyone with autonomic dysfunction.  Most of us do not live in a community that has experts in autonomic dysfunction so we need to be able to at least access them for consults long distance.  Some people have cardiologists or nephrologists or neurologists that help with management in their communities. I travel four hours round trip into another state for my most basic medical care because I live in a rural mountain area.  I hope you can get more testing and someone to manage your BP  with whom you feel comfortable.  Sometimes that one requires a bit of searching.  Hope you find some answers!  Marie

[vbc2000]

Hi There and welcome,
It does sound like more autonomic dysfunction is going on with you than just NCS.  Is there somewhere near you that you can get some testing done?  The centers are few and far between but I think it would be worth exploring.  Good luck!
Stephanie

[beema36]

I have neurocardigenic syncope and have the labile bp. I am on 4 bp Meds one is a betablocker that was added after I started having syncope to help the tachycardia. I was diagnosed by an electrophysilogist. Like u I often wonder y. My bp is better controlled lately but I do have bp spikes for no apparent reason. I actually feel like I am on way too much med for bp. Also the betablocker has slowed my heart so it runs in the 40s to 60s which is awfully low but Dr wants to keep bp controlled. It runs low more often lately than high. I have presyncope most of.the time. Like u I often wonder if I.have wrong diagnosis. My pcp feels I also have POTs and OI so.this will be discussed at my upcoming appt with electrophysilogist.
I don't have any answers but can sympathize with your frustration.
Beema