Vasovagal syndrome

Discussion in 'Fibromyalgia Main Forum' started by karenz, May 1, 2008.

  1. karenz

    karenz New Member

    I was recently diagnosed with vasovagal syndrome, aka vasovagal syncope. I imagine a lot of us have this disorder. I have been going to doctors for years, and complaining about these symptoms, and have never had a doctor identify this. Finally went to a cardiologist (at my request), and got this diagnosis.

    Symptoms: waves of sweating, light-headedness, nausea, especially when sitting/standing for any length of time, or if I push myself too hard.

    Vasovagal syndrome is basically a problem of blood pressure regulation. When sitting/standing, blood pools in the ankles, and not enough blood gets to the head. The heart is supposed to send a message to the brain to increase blood pressure, but my heart is not doing this.

    I love the solution: more salt and water. More water increases blood volume, and more salt helps the body to retain the water. Doc says salt is fine if you do not have heart disease or high blood pressure. Also, if standing, walk in place, or if sitting, get up and walking around. This keeps the blood moving.

    I suspect many of this have this problem and are undiagnosed. I cannot tell you how much a simple salt shaker has improved the quality of my life. Wow!

    Hope this helps someone out there!
    sonomasyrah likes this.
  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, I haves had this since I was five, the first time I fainted.

    At 7 I saw a neurologist who found it. He said I will learn to control it unconsciously as I grow up. In the mean time, I should lay down real quick if I feel faint.

    I would faint every couple of years. That doctor said nothing about fluids or salt.

    I went over a decade without fainting between 18 and 28. So I fainted again, and this time was grand mal seizure. (I had light seizures before: loss of bladder control and breathing irregular) So I went to neurologist to see if anything had been learned since I was 7. Had EEG. She said I don't have "seizure disorder," that it is a vasovagal response. I asked why I faint and others don't. She said, "Some people have a lower threshold. Under enough pressure, anyone will faint."

    I asked why I have seizures.

    She said, "Some people who faint have seizures." She didn't know. I tried to look up info then, but Internet wasn't as large as it is now. I looked up stuff in library. I found the dysfunction could be in my hypothalamus, nerves, vessels or chemicals communicating with all of the above. I gave up.

    Studies have been done which show the connections between CFS and vasovagal (neurally mediated) hypotension.
    sonomasyrah likes this.
  3. karenz

    karenz New Member

    Thanks for the info usedtobeperkytina,
    I don't actually faint, just have pre-syncope symptoms multiple times a day. Did they ever give you medication for this? If so, what? I am definitely feeling better with increased water and salt, but have a long way to go. I guess I will just go with this and see how it works out. If not major progress, I will ask about meds.
  4. mezombie

    mezombie Member

    Yep, this is a common symtom in ME/CFS, and is usually treatable.

    I was diagnosed with it in 1992. Researchers at Johns Hopkins U. made the connection between Neurally Medicated Hypotension (a form of dysautomia, just like Chronic Vasovagal Syncope) in 1995. Since then, Dr. David Bell and others have noted that many of us also have low blood volume.

    Along with increased salt, some people benefit from licorice root, which raises blood pressure. Caution must be used with the later as it can cause hypertension.

    Medications that help include beta blockers, fludrocortisone, and midodrine.

    It took me some time to find the treatment that worked the best for me. I am now taking fludrocortisone and midodrine together in the a.m., and more midodrine in the afternoon.

    Thanks for posting this, Karen. A lot of people are unaware that they have this, and that something can be done to help.
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I took fludrocortisone for a couple of months last summer. I didn't know what I was taking it for. I was desperate and my brain fog was real bad. I just did whatever the doctor told me.

    I don't remember what conversation we had when I stopped taking it. I have had problems recently with getting dizzy every time I stand up. So I started taking licorice. I am doing better.

    No one had said anything about medicine until I came down with CFS. It seems they think my blood pressure is in normal range except when it suddenly drops from stressor.

    I think I need a blood pressure monitor.

  6. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    See this:

    I understand that a seizure is different from fainting in that a seizure is when things like bladder, breathing, and other automatically controlled systems fail, along with unconsciousness.

    sonomasyrah likes this.
  7. mompain

    mompain Guest

    Another name for something like this or the same thing is POTS (Postural Orthostatic Tacachardyia Syndrome). I had the tilt table testing along with the other testing done to diagnose mine. The cardiologist who diagnosed mine put me on Klonopin. It worked wonders and I don't have as many problems with it now as I used to. Maybe yours will do the same thing and improve with time and medication.
    sonomasyrah likes this.
  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    There's a slight difference between vasovagal (neurally mediated) hypotension and POTS. From the CFIDS Association:

    There are many types of OI, but two forms have been linked with CFIDS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

    NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.2

    POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing.1 It is also known as chronic orthostatic intolerance, or COI.11
    sonomasyrah likes this.
  9. mezombie

    mezombie Member

    September 26, 1995
    Media Contact: John Cramer

    Results of a new Johns Hopkins study show that chronic fatigue syndrome is strongly linked to a common and potentially treatable abnormality of blood pressure regulation.

    The findings, reported in the Sept. 27 issue of The Journal of the American Medical Association, link CFS with a blood pressure regulation disorder called neurally mediated hypotension and advance earlier work that drew similar conclusions among fatigued adolescents. Both studies found that symptoms such as exhaustion, exercise intolerance, muddled thinking, and dizziness cleared after neurally mediated hypotension was diagnosed and treated.

    "This study is the first to demonstrate that the symptoms of CFS can be improved with treatment directed at neurally mediated hypotension," says Hugh Calkins, M.D., associate professor of medicine and pediatrics and director of electrophysiology. "Further research will help us define the basis of the link and a randomized, placebo-controlled study is still needed to confirm the favorable response to therapy that we observed."

    In the Hopkins study, 22 of 23 patients (18 women, five men, median age 34 years) with CFS tested positive for neurally mediated hypotension. After treatment, nine patients reported full recovery from fatigue and seven others noted some improvement, say researchers.

    Neurally mediated hypotension cannot be detected during a routine blood pressure or heart rate screening. Tilt testing, available in most hospitals and academic centers throughout the United States, is the only means of positive diagnosis.

    Each patient in the Hopkins study underwent all or part of a head-up, three-stage tilt table test. The tilt table rests at a 70-degree angle to simulate standing for long periods -- a common trigger of neurally mediated hypotension (NMH). Heart rate and blood pressure were monitored throughout the test.

    Of the 22 patients diagnosed with NMH, all experienced lightheadedness, nausea or fainting and a 25 mmHg decrease in systolic blood pressure without an associated increase in heart rate. All became tired and lethargic and remained so for several days after the test, suggesting that fatigue can become chronic if neurally mediated hypotension occurs frequently enough, says Calkins.

    Sixteen of the 22 CFS patients who tested positive did so at the first stage of the tilt test, unlike four of 14 controls (10 women, 4 men, median age 36 years) who tested positive, at a much later point after a drug was administered to simulate high adrenaline levels. "The difference is that those with CFS generally had a drop in blood pressure more quickly and without artificial stimulation," explains Peter Rowe, M.D., the pediatrician who first made the link between the two disorders.

    Patients with neurally mediated hypotension were treated with drugs commonly used to regulate blood pressure. While some of the drugs work by allowing the kidneys to retain more sodium, others block the body's response to adrenaline, a kick-starter of the blood pressure abnormality.

    More than half of the patients experienced some improvement over time, but the researchers say that compliance with these drug therapies proved challenging.

    "It takes a great deal of persistence from the patient and physician to find the right combination for each individual," says Rowe. Careful monitoring by a physician is required because the drugs pose a risk of serious side effects such as excessive elevation in blood pressure or depression. In addition, patients often need to change therapies three or four times over several months before noticing an improvement, he says.

    Part of therapy also includes increased salt intake combined with increased fluid intake, but diet changes alone may not be effective for treating patients with CFS or neurally mediated hypotension, warn researchers. "We believe salt plays an important role in blood pressure regulation, but it appears to be most effective when used in conjunction with drug therapies," says pediatric cardiologist Issam Bou-Holaigah, M.D., lead author of the study.

    Neurocardiogenic syncope, neurally mediated syncope, vasodepressor syncope, vasovagal syncope and neurally mediated hypotension are different names for the same disorder. The condition commonly occurs when the autonomic nervous system, which controls heart rate and blood pressure response, misinterprets what the body needs during periods of upright posture and sends a message to the heart to slow down and lower blood pressure. This is the opposite of what the body needs at such times, says Jean Kan, M.D., Helen B. Taussig Professor and director of the division of pediatric cardiology. Neurally mediated hypotension occurs typically after exercise, long periods of standing or exposure to warm environments. If the heart slows down at these times -- when heart rate and blood pressure should be increasing -- lightheadedness, fainting and headaches are common results.

    In contrast to all that is known about neurally mediated hypotension, CFS remains poorly understood. It is estimated that nearly 25 percent of the population will develop prolonged fatigue at some point in their lives. Chronic fatigue syndrome is a related but less common and more severe condition with worldwide prevalence of up to three per 1,000 people. It is defined as a profound fatigue lasting at least six months, often beginning abruptly after an apparent viral infection, and not explained by known medical or psychiatric disorders. The fatigue often worsens after physical exertion and other symptoms include lightheadedness and blurred concentration (see attached definition from the CDC). Many medical professionals used to dismiss CFS as primarily psychiatric, but these results suggest that NMH may be the physical underpinning for symptoms in a large portion of patients, says Calkins.

    Bou-Holaigah was partially funded by the Saudi Arabian Oil Co. (Saudi ARAMCO).

    The Johns Hopkins Medical Institutions are pleased to assist those seeking more information about chronic fatigue syndrome and neurally mediated hypotension. Please help us help them by publishing the following telephone number - 410-614-4823 or 1-800-624-4562. Callers can also request a copy of this press release, the JAMA article or an information sheet about an upcoming randomized-controlled trial in the Baltimore/Washington region.

    [This Message was Edited on 05/02/2008]
  10. mezombie

    mezombie Member

    Check out

    There is tons of useful information on this site on various dysautonomias, including Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Vasovagal Syncope, you name it.

    Causes, management, treatment, etc.
    sonomasyrah likes this.
  11. sonomasyrah

    sonomasyrah Member

    I too have had Vasovagal Syndrome (POTS) since I was a child and no MD knew what was going on with me. I had many accidents as a kid. Then many single car accidents as an adult. The MD's always tested me for epilepsy and when the test was negative they said I was just a bad driver. The when my heart rate ranged from 144 beats per minute to 50 or less they said we have no idea what you have but we can't help you because there is nothing to treat both high and low blood pressure. It is so good to finally talk with people who know what it is like to be me. So glad I found this forum. I wish I had been diagnosed sooner but had my tilt table test last Feb. I heard about the salt and does help to some degree. A cardiologist also put me on beta blockers to keep my heart rate from going so low that I fainted. Though I have read that beta blockers shouldn't be given to POTS patients. They have helped me though.

    Used to be Perky Tina....I feel ya.
    Last edited: Oct 26, 2014
  12. sonomasyrah

    sonomasyrah Member

    Tina I am SonomaSyrah....please read my comment below. I have so much in common with you. So nice to finally know someone who has the same condition after being out there all these years undiagnosed and feeling so alone.
  13. Cattttttt

    Cattttttt Member

    Would like to know how some of the patients who posted on here years ago are doing now, and how they are treating this problem. I posted something the other day on another thread. Just diagnosed with this. Did you solve the problem? How?
  14. ChadHoughs

    ChadHoughs Member

    I have Vasovagal Syncope..never had anyone say its diagnosed but I even have gran ma seizures and have loss bowel control and sweat like crazy ..ringing in the ears they call it Aura I get a weird smell in my nose and heightened senses its strange..then colors in my eyes and pass out..specially when getting blood draws..I take ativan before any blood draw now..sometimes I get it while watching tv if I see something that makes my phobia of blood kick in . I am glad to have found this forum. Hope I can learn more on things I can do . Should I get treatment other than taking ativan ??? Opinions would be nice ..I am and have been curious for yrs..I am 42 and have been doing this since I was a kid.