Aa
Aa
A
A
A
Close
Avatar universal

Doctors seem unresponsive to my neurocardiogenic syncope

I'm a 27yo F who was just diagnosed with NCS following a positive tilt test at the beginning of 07.  My chief symptom is daily, severe (some times debilitating) dizzy spells.  My doctors seem highly unresponsive to my discomfort as they keep insisting that I am "healthy," the condition is benign, etc.  One neuro wrote it off as "anxiety" (although he told me it was migraine-related vertigo), and my cardiologist keeps insisting that NCS doesn't cause dizziness while seated although I know more than 1 person to whom it has happened.

Symptoms started in '03 with major fatigue.  By '04 was having occasional dizzy spells and by 06 the dizzy spells were daily.  Now they are nearly all day, every day w/ more good days than bad.  Other symptoms include neck/shoulder/upper back stiff and sore, feverish feeling/flulike symptoms, blurry vision from time to time, general malaise and nausea.  Usually comes on after lunch or around 2-3pm.

Am on Toprol XL, about 75mg, and Cymbalta 30mg; also drink 64-96 oz of water daily plus high intake of electrlyte bevs like sports drinks.  Also take a calcium, mangesium and potassium supplement and salt pills.  Was previously on Lexapro. Have gained about 25 lbs in a few months, although I compete in triathlons and complete 40-90 min workouts at least 2-3 times a week.  The NCS has kept me from training more than 2 or 3 times a week for months now but excersize early in the day seems to delay onset of symptoms to 5-7pm.

My only other issues are slightly high cholesterol and PVCs.  Have tested negative for nearly every condition - MRIs, CTs, highly in-depth blood tests including lupus and Celiac disease.  Can someone tell me if thie is what my life is going to be like forever?

4 Responses
Sort by: Helpful Oldest Newest
Avatar universal
http://www.dinet.org/NCS/ncs.htm

Read this your doctor sounds to put it nicely an arogant ignorant moran. That is the most common symptom of it. Educate yourself as much as you can. The condintion most doctors dont understand. Sorry that you are having to put up with it and Ive been in your shoes tooo many times. Remember doctors are human and I wouldn't hold them up to high standards even if they have great reputation. We can all be completley wrong. Find an educated doctor that is also humble. They are rare so research. This is your health, your body, and learn so you can stand up for yourself. Ive had this condition for years and been through hell physically and through the medical system. You can't change your body but you can learn as much as you can and stand up for yourself. Dont put your life in someone's hands who is clearly misimformed bc they wont suffer as much as you already are from any of it.  Check out the actual Doctors who speacialize in this condition.
Helpful - 0
Avatar universal
I've had virtually all the symptoms you are experiencing. Now at 55 I am still being tested and retested and besides the vaso-vagal syncopal episodes I have a diagnosis of BAM - basilar artery migraine plus an inner ear disturbance in addition to fibromyalgia and some other problems. That is after years of testing since my symptoms started at approx. age of 22.. with chronic fatigue like symptoms and dizziness. I've had a LOT of doctors that were unconcerned and some that even brought me to tears by telling me it's all in my head.  I have a feeling that a lot of the symptoms you have will eventually "burn out" but you might never feel 100% well. You may have CFS- chronic fatigue syndrome - which is associated with dizziness also. Do you have any memory or confusional problems? I would also go to a top neurologist or better yet - an oto-neurologist and have some inner ear tests done to rule out inner ear problems. One new test is called a VEMP test and it is not painful or uncomfortable at all. You should also have an MRI and MRA if you haven't already to rule out any brain or vascular problems. Good luck and don't give up.
Helpful - 0
Avatar universal
When you say dizziness, do you mean lightheadedness(pre-synscope) or vertigo?

Have you had a full cardiac work-up?  

I, too, was recently diagnosed with migraine vertigo and just recently the ENT told me he was wrong (gasp!) and that he no longer thought my spells were due to migraine vertigo.  But my spells are more like vertigo (feels like my head is spinning and I feel off-balance).  I got the "anxiety" bit too.  I think when they can't figure it out, they label you as anxious and call it a day.  

If you don't feel the diagnosis is correct, seek another doctor's opinion.
Helpful - 0
Avatar universal
I am a 45 year old male and my family physician considers me "healthy". Good bp, low cholesterol, etc.

My symptoms are nowhere near as bad as yours. In fact I passed out only once recently(but passed out several times over a 3 year period about ten years ago).  

Contary to your situation, doctors are very concerned about my condition. Ten years ago(different city) there was little concern. They said I had a fear of needles, or I was dehydrated due to illness. They said take care of myself and always lie down if giving blood or getting a shot. No tilt table test was discussed.

During a recent tilt table test, my heart stopped for 12 seconds, beat once and then stopped for another 14 seconds after I passed out on the tilt table. One doctor wanted to admit me to the hospital and put in a pacemaker. I really questioned that and another doctor said lets try medication and redo the tilt test first. My current neurologist(who had the test done) says to follow up on it because it could be serious.

My point to you is maybe you need to see another doctor(s) or really force the issue with your current ones. If you push them they will might reevaluate your situation. Doctors tend to think they are always right and sometimes won't go beyond the initial opinion unless you question it. You have to live with NCS. Make the doctors aware of how your life is affected by this.
Helpful - 0
Have an Answer?

You are reading content posted in the Heart Disease Community

Top Heart Disease Answerers
159619 tn?1707018272
Salt Lake City, UT
11548417 tn?1506080564
Netherlands
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Is a low-fat diet really that heart healthy after all? James D. Nicolantonio, PharmD, urges us to reconsider decades-long dietary guidelines.
Can depression and anxiety cause heart disease? Get the facts in this Missouri Medicine report.
Fish oil, folic acid, vitamin C. Find out if these supplements are heart-healthy or overhyped.
Learn what happens before, during and after a heart attack occurs.
What are the pros and cons of taking fish oil for heart health? Find out in this article from Missouri Medicine.
How to lower your heart attack risk.