Kathy Rothweiler learns hard way about 'safe' supplements
As recently as March of this year, Kathy Rothweiler didn't think she was going to live to see her 17-year-old daughter graduate from high school. The Council Grove, Kansas, woman, who suffers from both mitral valve prolapse and mitral valve prolapse syndrome, had spent almost two years battling ongoing side effects from an herbal supplement she took as a diet aid in 1996 when she made her first visit to the Mitral Valve Prolapse Center this year.
"A couple of summers ago I was dieting to lose some weight for an upcoming high-school reunion," said Rothweiler. "I was drinking a lot of coffee, so my potassium levels were low, and I had dehydrated myself and was exercising on top of it, although of course I didn't realize all these connections at the time. A friend had this diet product that had the herb ma huang in it, and it was supposed to be safe. Gotu-kola was also in it, and other herbs that were stimulants, kind of like caffeine.
"I had been on it five days when I got up one morning and passed out. I woke up on the bathroom floor."
Rothweiler's son Jacob, now 19, drove his mother to the hospital, where she again passed out - this time in the exam room. The doctors and nurses couldn't find her pulse, but then it came back - and she came to. They moved her to a room with a heart monitor, and it was in that room that Kathy Rothweiler came so close to death.
"My heart quit on me, and they performed CPR," she said. "They told me I flatlined for 30-40 seconds." After she left the hospital, the 37-year-old optician began what would evolve into a series of visits to different heart specialists and other doctors. She took her herb boxes on one visit, and the health practitioner told her that the herbs were the most likely reason for the heart stoppages Rothweiler had experienced. And along the way, there were the occasional mentions of mitral valve prolapse, but never a firm diagnosis.
"Those doctors told me they weren't concerned about that," she said, remembering. "Then about a year later I start having anxiety problems with my heart racing and tingling in my legs. It was almost deja vu - they hospitalized me and did another EKG. They still didn't find any good evidence of mitral valve prolapse.
"That went on from June until the first of this year - panic and anxiety attacks. In February I had gone to my doctor for the umpteenth time, and another patient had given information on MVPS to the doctor, who gave it to me. In the meantime one of my girlfriends found all of this information on the Internet about it, and showed it to me.
"When I saw the symptoms I just cried. That was me."
Rothweiler visited the Mitral Valve Prolapse Center in Birmingham March 30. "I have been so much happier since then," she said, "because I am so relieved and more in control of my life. Before, I was afraid I was going to die before Amy graduated from high school in May."
She is now on a beta blocker, Zebeta, and an anti-anxiety medication, Buspar, has cut out caffeine, and exercises on a regular basis. Until she began her medications, she said, she had so much severe anxiety and physical pain she "just didn't want to live anymore." Even after her clinic visit, she said, she had bouts of depression, but reading the center newsletter helped her "connect with other people" and realize she wasn't alone. Her advice not only to people dieting for high-school reunions but to anyone - not just MVPs patients - considering herbal supplements, diet and otherwise?
"Stay away from them," Rothweiler said. "Avoid them at all costs. To me they are a threat, especially to an MVP patient. They will harm her rather than help her. The ephedrine in those products makes it like you are taking speed.
"Just because something is natural doesn't mean it is always helpful. I took a very potent and harmful chemical and I didn't realize it at the time." Rothweiler said that the company that manufactured the herbal supplement she took eventually paid for her hospital bills and time off if the business is still in operation. And since her brush with death, an investigator claiming to be with the Food and Drug Administration came to visit her and her family doctor to hear about her experience with ma huang - but he didn't leave a card and hasn't been back.
"I wish people would please read the labels of any diet products they are taking," she said. "If it lists any ingredients called ma huang, ephedra, or epitonin, I urge you not to take it. The FDA has issued recent warnings to doctors and the public stating that this dietary supplement can be potentially fatal. "I know."
FDA Convenes Panels to Evaluate Herbs
Following a number of adverse reports, including death, the Food and Drug Administration has convened panels to evaluate a number of products containing ephedrine, a powerful stimulant extracted from a Chinese herb variously called ma huang or ephedra.
In China, the Ephedra sinica plant has been used for more than 5,000 years as a medicinal agent to treat hay fever and asthma. The plant contains both ephedrine and pseudoephedrine, which can cause vasoconstriction, cardiac stimulation, and their attendant increases in blood pressure and heart rate. Nervousness, insomnia, vertigo, and headaches are also common effects.
Herbs, vitamins, and minerals are classified as dietary supplements. In contrast to regulations for synthetic drugs, manufacturers are not required to prove that dietary supplements are effective or safe. The FDA has now compiled over 800 reports of adverse reactions to ephedra-based products, including strokes, arrhythmias, elevated blood pressure, and the precipitation of acute myocardial infarctions. Different preparations of ephedra-based products vary in amount; one product might have as little as 1 mg of ephedra, while another may have as much as 110 mg.
Recognized enhancers of ephedra's effects, such as caffeine, may be present in some preparations. To address these problems, recent advisory panels recommended and the FDA implemented a number of restrictions on the sale of these products. One proposed FDA recommendation was that supplements blending ephedrine with caffeine and those providing 8 mg or more of ephedrine per dose be banned. Warnings about a maximum dose of 24 mg per day for no more than seven days were included in the proposal.
In contrast to the lack of data about ephedra, another popular herb, St. John's wort, has been used and extensively studied in Germany. This herb's apparent antidepressant properties have been impressive enough to stimulate a recent National Institutes of Health study.
Health food stores, supermarkets, and pharmacies are stocked with products whose labels suggest victory over obesity, fatigue, and impotence. Clinical trial results will help determine whether these claims are valid.
Excerpted from
Cardiology Review, May 1998
MAKING YOUR NEW YEAR'S RESOLUTION FACT, NOT FICTION
Winter is once again upon us, and along with it come those always-dreaded New Year's resolutions. We all make them and attempt to keep them, but usually by mid-January our dedication to them begins to fade.
For millions of Americans, the number-one resolution is to begin a regular exercise routine. This is easier said than done, however. We hope this article will give you some helpful ideas on wintertime exercise activities, as well as tips on overcoming barriers you may encounter as you develop your exercise program.
One of the more frequently heard reasons for quitting an exercise routine is time constraints. Since most of us lead busy lives, daily exercise tends to get left behind. This is our first mistake. We must prioritize our activities in such a way as to include exercise.
- Take a brisk walk during your lunch break.
- Exercise first thing in the morning - mental fatigue sets in as the day wears on.
- Choose a parking space away from the market or mall and walk.
- Take the stairs rather than the elevator.
- Combine activities, such as reading while you walk on the treadmill.
- Find activities you enjoy - you'll be more inclined to stick with them.
- Stay active around the house with such activities as raking leaves, shoveling snow, sweeping, etc.
Other common barriers people encounter are overall fatigue by the day's end, and lack of time in the day after keeping up with their children's schedules. Here are a few hints on how to squeeze more minutes out of the day:
- Swap out workout time with your spouse - let him or her watch the kids while you exercise, and vice versa.
- Recruit a dependable exercise buddy to make you more accountable.
- Make the exercise fun! Include your kids on bike rides or hikes.
- Get your neighbors involved - let them watch your kids while you walk the neighborhood, and vice versa.
- Try to exercise while kids are still at day care or in school.
A final thought to remember: Monitor your diet! Avoid loads of sugar, because sugar tends to give you a high followed quickly by a low. And drink up! Even though it's cooler outside, your body still requires extra fluids (64-plus ounces per day) to maintain a good balance.
Everyone knows that being dedicated to exercise isn't always easy, but keep in mind that exercise is an important part of the treatment of mitral valve prolapse. So try to make it a priority this winter.
Gina Busby and Lori Watkins
Exercise Physiologists
An Inquiry:
I am a desperate person seeking your help… I would like further information about the low blood volume syndrome you described in Health magazine. I feel that it may be the answer to my dizziness, which has puzzled eight doctors and caused almost five years of misery and suffering.
I am a 58-year-old female with many of the symptoms - I am tall and thin and I have a bit of mitral valve prolapse, low blood pressure, infrequent chest pain, infrequent panic attacks (related to specific phobias), palpitations, very high pulse rate, anxiety, and dizziness, but I don't have overwhelming fatigue. Assuming I may have the syndrome, I would like to try your suggested remedy under my doctor's care.
Thank you so much for your help. I feel some hope for the first time in almost five years.
Sincerely,
Name Withheld
Richmond, Va.
Dr. Watkins Replies:
You certainly fit the usual profile for a patient who has mitral valve prolapse and dysautonomia. The low blood volume that was described in Health magazine is a large factor in causing the symptoms that occur in patients with this syndrome. Our experience at the center has shown that dizziness is a common presenting symptom in many patients who have this disorder. We have seen patients who first went to their ENT (ear, nose, and throat) doctors thinking they had inner-ear type problems and studies there revealed no abnormalities. In most cases the general concepts of increasing fluid intake, getting regular aerobic exercise, avoiding caffeine, and limiting sugar have been of benefit to these patients.
Again, depending on the particular person's situation, we found that Clonazapam has been very helpful and also that at times, taking a beta blocker such as Atenolol, Betaxolol, or Bisoprolol has also been useful.
I would suggest that you visit our Website, www.mvprolapse.com, and complete the questionnaire you'll find there. This is a very reliable way of estimating your likelihood of having this syndrome. I would then discuss the details of your situation with your family physician and ask his or her thoughts as to beginning medications.
An Inquiry:
I have just read the Health magazine article in which you are featured, and I wept from nearly beginning to end. I felt a profound sense of relief as I read symptom after symptom, intimately familiar with each and every one. I have known for years that I have mitral valve prolapse and, like most people, considered it a disorder itself and not a symptom of something larger. Although I have long suspected that many of my health troubles were somehow interrelated, that feeling has never been confirmed - until now.
Although I didn't seek the advice of a doctor until 1991, for years I was coping with light-headedness, persistent fatigue, cold hands and feet, dry eyes, swelling of my lower legs, a violent hangover whenever I consumed alcohol, excruciating menstrual pain, severe acne, aching joints and muscles, an inability to concentrate, panic attacks, a fluttering heart, and chest pain. During that year, however, all of my symptoms worsened and my panic attacks became severe. Plus, I could now count debilitating tension headaches and tingling extremities among my list of woes. I reached a point where I was afraid to leave my apartment. I was 20 years old and I felt like I was 80.
In late 1991 I finally found a doctor competent enough to diagnose mitral valve prolapse. Unfortunately, he was less competent when it came to explaining the disorder or prescribing treatment. Essentially, he told me it was not serious, there was nothing I could do to relieve my symptoms, just to ignore it, and to be sure to take an ungodly amount of antibiotics before every dental visit.
I can honestly say that even though not all of my ills were mentioned, reading Mary Roach's article was more helpful to me than any treatment I have sought in the last seven years. It gave me a clearer picture of what could be going on in my body than did numerous internists, a neurologist, a chiropractor, a dermatologist, a cardiologist, a naturopath, a nutritionist, an ENT, a physical therapist, three psychologists, three echocardiograms, two CT scans, two EMGs, several EKGs, several thyroid tests, one Holter recording, a vitamin and mineral screening, numerous books, and much, much more. So, oddly enough, I am thrilled to discover that there is more to mitral valve prolapse than I originally thought. The idea of being "chronically dehydrated" explains so much.
Also, I am curious: why does blood volume increase during pregnancy, and what did you do to mimic that process in non-pregnant women?
Sincerely,
Name Withheld
Chicago, Il
Dr. Watkins Replies:
I appreciate your taking the time to write. The Health magazine article generated quite a bit of interest and we received a lot of mail and inquiries because of it.
In answer to your question about blood volume: Blood volume increases during pregnancy to accommodate the extra circulation needs of a growing fetus. Studies have shown that blood volume increases above pre-pregnant levels to a maximum at approximately 22 to 24 weeks. In a patient who previously had a low blood volume, this essentially brings blood volume up to a near-normal level. Consider it as though you have filled your gas tank full while in the past, the gas tank registered full when it was only 3/4 full. At this point during pregnancy, patients generally have few or no problems with their prolapse. On listening to the heart, you do not hear the usual click that is heard in the non-pregnant state and echoes may indeed become totally normal. After delivery, the blood volume tends to decrease slowly over eight to 12 weeks back to the pre-pregnancy level. An exception occurs only when the patient breastfeeds. Apparently, breastfeeding mothers maintain a higher level of blood volume as long as breastfeeding continues. We encourage our patients to do this, as symptoms are less likely to occur in those patients who breastfeed versus those who do not. Maintaining a normal blood volume on a daily basis is critical to helping to alleviate the symptoms that occur because of the chronic dehydration that is present.
Thank you for your letter and your kind comments.
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