Vascovagal attacks ?

[GAreb169]

I have been home bound for nearly 3 years. If I am exposed to any heat, or much activity, I go into what I call heat stroke.  I sweat PERFUSLLY, unbelievable, I feel as though I have to throw up and defecate at the same time.  I become very disorientated, can hardly walk at onset and later can't at all.  Then the nausea, worst of my life, I throw up until there is nothing left and then dry heave for what seems like forever, then I usually have a chill and an so exhausted that I can hardly take a breath.  This has ruled my life, it started out infrequently the more and more until I have to take a cool shower to make sure the warm water doesn't trigger an episode. I have compensated my life style to the point of having no quality of life at all. My house as to stay around 65 degrees, summer and winter, even my lap-top can trigger these.  No I feel light headed almost constantly and have be afraid to drive during all of this time.  I have always been an active person, and this is no life for me. I have been told it was a vascovagal attack, I have no idea.  I have been to the Mayo from almost the onset, and they never mentioned the vascot nerve at all.  My cardiologist suggested that this might be the problem and after a heart monitor, scheduled a pacemaker, and then I had an appointment and was seen by his brother, who counseled the surgery, saying that it would not help my condition.  What the heck do I do now?  

[Venushakti]

I feel your pain. While I am fortunate enough to be largely free of vasovagal attacks (I'm down to only 1-4 episodes a year and I am fairly experienced with regulating my salt intake, exposure to triggers such as CNS deppresants,  dehydration, etc,  and I recognize the early symptoms so much sooner that I never faint anymore and I can even safely drive again now after a decade syncope-free...

But when they first started happening,  and I would pass out in dangerous places (like the middle of sidewalks on busy intersections at night walking home from work) and so often, that I to became home bound for almost a year, until my cardio and neuro did a tilt table test and I had clear vasovagal syncope issues.

Don't give up hope. I hope you're able to put together a good medical management team for your health care and figure out ways to manage and mitigate your own triggers, to be able to start coming out of the shell again.

Best wishes!
Venus

[Heiferly]

The only genetic dysautonomia known at this time is Familial Dysautonomia (which has such striking features from birth that the diagnosis is never missed) and possibly the NET (norephinephrine transporter defect) gene that causes POTS.

Testing before beginning beta blocker treatment for dysautonomia typically includes Halter Monitoring and EKG. In some cases an echocardiogram, cardiac catheter study, or loop recorder/event recorder may be done as well. In many hospitals a tilt table test may also be performed, particularly if a "poor man's tilt" is inconclusive.

Parasites are not listed in any of the medical textbooks I've read on dysautonomia as a known cause of autonomic dysfunction, with the notable exception of lyme disease and its coinfections, and patients should talk to their doctor if they are concerned that they may have been exposed to any parasite infection, regardless of autonomic symptoms.

[dysautomom]

This not to say don't explore the heart issues.Just be very careful about surgergy,beta-blockers without having the above tests.The problem with medicince is its specialized.A cardiologist is going to want to do what he or she knows.He is not going to know about genetic choline deficency in dysautonmic patients because this paper was just published this past year in . canada.You definitely want to get a 24 hour urine analysist to see if you lose electrlyes too fast which causes many heart symptoms.also want to say my daughter,who was treated at NIH had dysautonomia symptoms since early childhood,the first being heat,exercise hives.Later they got worse with her body temperture crashing in an overreaction and she would go hypothermic.But she didn't have her first full blown vago syncope episode until after a car accident in which she probably suffered a concussion.Hope you feel better soon and you find the treatment that helps you the most to return to function.

[dysautomom]

If this is true genetic dysautonomia you need to get your amino acid panel done to see if you have deficiencies.Also endocronology workup as many dysautnomia patients have problems with thyroid etc.I also wonder if you have been tested for parasites.My chinese niece had been treated giardia but years later it was discovered it was d flagellias another bad parasite.after sucessful teratment her heat hives improve greatly.She also have some autonomic problems like eller danlos and mild autism.The d flagellas needs two course of flagly for 21 days two weeks apart.Heat hives can be strictly dysautonomic but it can definitely be a symptom of an another infection,like parasites or a virus,or it can be a combination,since dysautnomis people usually have autoimmune issues.

[Heiferly]

Vagal nerve dysfunction, such as vasovagal syncope (fainting) and pre-syncope (the set of symptoms that precede fainting, even if you don't end up actually fainting), is a type of "dysautonomia." This means that your autonomic nervous system, the part of your nervous system that controls homeostasis and "automatic" functions such as body temperature and heart rate, is not functioning properly for some reason.

I understand that you had a heart monitor; was that a Holter Monitor/Event Monitor or did you have an implant in your chest called a Loop Recorder? The next step is for you to get a more thorough autonomic assessment, including a Tilt Table Test (TTT or HUTT). Autonomic testing is something either a cardiologist (mainly electrophysiologists) or a neurologist (mainly neuromuscular specialists) can refer you for and base a diagnosis on. If your current cardiologist is not knowledgable in the area of Dysautonomia, you may need to find a new specialist who is.

There are a number of things that you may find helpful in the meantime:

-compression hosiery (rx level is best) and abdominal binders
-increasing your salt and water intake
-cooling garments such as a cooling vest (I recommend the phase change variety, but they are costly; the evaporative cooling ones do not work in areas of high humidity such as the South)

Another thing that has helped me recently was the purchase of a "chillow" which is a pillow with a gel-filled layer on one side that draws heat away from your head, making it easier to stay cool in bed.

If you want more information on anything I've mentioned here, let me know and I can elaborate for you. Best wishes,
H.