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Backwards Blood Pressure by Laura Zeller How many of you suffer from bizarre symptoms that nobody seems to understand? Many thousands of patients, myself included, have at some point been left completely puzzled at the mystery of our unexplained medical conditions. In my earlier article, ``Quest for a Diagnosis,'' I shared my tortured journey towards my diagnosis of Lyme disease. My story represents a small picture of how frustrating it can be to pinpoint the true cause of a medical problem.
Lacking intricate knowledge of complex emerging diseases such as Lyme disease, many physicians become overwhelmed and baffled, and simply give up. Rather than spend the time to accurately diagnose you, they instead label you with something like chronic fatigue syndrome (CFS). This jumbled diagnosis gets them off the hook, and as a result you are left dumbfounded and bewildered as to what the cause of your symptoms is. In my opinion, many physicians give up easily, and ``pass the buck'' on a patient without thoroughly investigating the true nature of the patient's problem.
Before I knew I had Lyme disease, I suffered for years from recurrent spells of lightheadedness and dizziness. ``Zombie mode'' is how I used to describe the mental fog I walked around with every day. Whenever I stood up after sitting for a while, I got a ``head rush,'' and felt woozy and off balance. Hot weather, hot showers, and standing in lines often brought about an increase in my symptoms.
I developed very uncomfortable feelings of anxiety and shakiness after my ``head rushes.'' The dizziness would often get markedly worse after I ate a full meal. This was very odd. I thought the shaky feeling might be stemming from low blood sugar (hypoglycemia). Exercise was impossible due to the exhaustion I experienced afterwards. At times, this post-exertional fatigue would last for 2-3 days. I figured my exhaustion was due to the earlier diagnosis of chronic fatigue syndrome (CFS) my flock of doctors had slapped me with.
Disoriented and exhausted, my mental confusion took on the forms of difficulty in concentrating, slurred speech, and panic attacks. As time went on, I became so weak I could no longer drive my car, and I required assistance with simple tasks. My plethora of doctors decided I had Addison's disease (another wrong diagnosis) and prescribed steroids for 3 years with no resolution. According to my endocrinologist, my adrenals had shut down for ``unexplained reasons.'' It was not until I was correctly diagnosed with Lyme disease that the cause of my strange symptoms was discovered.
Being a brilliant researcher, my Lyme Literate Medical Doctor (LLMD) sent me a cardiologist to have a tilt table test. Gently remarking that Lyme patients are ``backwards'' in nature, my LLMD suspected I might have a form of autonomic dysfunction. A tilt table test is designed to help diagnose neurally mediated hypotension (NMH), also known as vaso-vagal syncope, neurocardiogenic syncope and autonomic dysfunction. The medical terms for fainting and low blood pressure are syncope and hypotension respectively. Tilt table testing is a rather simple concept, but requires supervision by a cardiologist.
I was fortunate to have a very Lyme literate cardiologist administer my test. In fact, before my test began, one of the residents in the room griped that he had never heard of babesiosis, which I listed on my patient history form. My cardiologist gave the resident a look of disappointment while remarking that he should study harder if he wanted to make it in the medical profession. Babesia microti, a piroplasm similar to malaria, is one of the tick-borne diseases that complicated my condition.
My tilt table test began with me lying flat on my back, with blood pressure cuffs on both arms, and heart monitors attached to my chest. Measurements were taken at scheduled intervals as I was transitioned from lying flat into a standing position. To prevent me from fainting, I was secured to the table with safety straps. After being raised to an upright position, and remaining there for several minutes, I was returned to a lying down position. Phase two began with an injection of Isuprel, a drug that simulates a stressful situation, thought to mimic the symptoms I was experiencing. Once the drug took effect, I was again raised to an upright position. My heart rate reached 165, and then suddenly dropped to 65 in one beat, as my blood pressure plummeted from 130/70 to 50/0. I fainted and was out cold until they stopped the test and administered the antidote to the Isuprel. Normal blood pressure is typically 120/70.
It was an exhausting experience, however, this test turned out to be one of the most significant tests and discoveries of my health journey. I had a combined neurocardiogenic and vasopressor response, a double fail. This meant that the Lyme bacteria had inflamed my vagus nerve, which is the major communicator between the heart and brain.
My cardiologist graciously explained that when a healthy person stands up, blood normally pools in the legs due to gravity. To compensate for the lower quantity of blood returning to the heart after standing, the body releases adrenaline. The adrenaline surge makes the heart pump harder and faster, thus allowing the blood to pump quickly back from the extremities to the brain and vital organs.
In neurally mediated hypotension (NMH) there is a miscommunication between the heart and brain. As you stand up, and the heart needs to beat faster, the brain ``misfires'' and sends out the message that the heart rate should be slowed down, and that the blood vessels in the arms and legs should dilate. More blood is taken away from the central part of the circulation where it is needed, and lightheadedness and syncope (fainting) can result. These symptoms occur because the brain is not getting enough blood. Although frightening, fainting can actually help the patient by returning him/her to a flat position, removing the pooling effect of gravity in the extremities, and allowing more blood to return to the heart.
My cardiologist explained that because I had both low blood pressure and the rapid heart rate (tachycardia), I would need a combination of treatments to get my symptoms under control. He recommended Atenolol, a beta-blocker designed to regulate heart rate. I had what he called ``backwards blood pressure'' and he explained how beta-blockers are normally used to control high blood pressure (hypertension).
In addition to the beta-blocker, he recommended I take the antidepressant Zoloft, plus the mineralocorticoid Florinef to help regulate my blood pressure. Florinef works by acting on the kidneys to keep increase blood volume, thereby increasing blood pressure. Along with the Atenolol, Zoloft and Florinef, my cardiologist suggested I add more salt to my diet, avoid dairy products, alcohol, and caffeine. He also mentioned how essential it would be for me to drink at least 2 quarts of water per day, and double that amount in warmer weather.
I also learned some basic techniques to help me manage my NMH better. Simple posture, it turns out, had a lot to do with the degree of symptoms I felt. Crossing and elevating my legs would help stop blood pooling in my feet. Using cooler water while showering sitting in a chair would help prevent episodes of NMH brought on by the heat. The bizarre dizziness I experienced after eating was due to the blood moving to my digestive system. Eating smaller, more frequent meals helped resolve that uncomfortable symptom. Using a motorized scooter in the supermarket, or shopping during off hours would help prevent the standing in lines that brought about the blood pooling and anxiety/shakiness. The fainting reflex could be activated whenever I stood upright for a period of time. As my LLMD later explained, the Lyme bacteria were the cause of the NMH, and the cause of the inflammation of my vagus nerve.
Determined to always seek the cause, I was relieved to gain understanding of such a commonly misdiagnosed disorder. Just to be clear, some physicians will talk about NMH as if it is a disease. Actually, it is a functional disorder that clinically indicates something much greater. In my case, in order to treat the NMH, I first had to aggressively treat my Lyme disease with antibiotics. By reducing the inflammation caused by the infection, the symptoms of NMH would, in turn, resolve. The medications and dietary changes I had to make would help control the symptoms.
Different treatments for NMH are available, and there is no single course of treatment that will work for everybody. It took several years of antibiotic treatment to get my NMH under control. I tolerated the beta-blocker and the Zoloft well. The Florinef helped me for a short while, but I had to discontinue it due to side effects. As my condition improved, the medication doses were tapered down gradually. I discontinued Zoloft, and reduced the beta-blocker to half a pill in the morning. My tolerance to heat, exercise and prolonged standing improved greatly. Lowimpact exercise with weight training and yoga gave me back enough strength to walk on a hot Caribbean beach without symptoms.
Based on my experience, I know there are plenty of folks out there suffering from NMH without a clue as to what is going on with their bodies. If you are experiencing symptoms of lightheadedness, dizziness, shakiness, brain fog, and intolerance to exercise, ask your doctor about the possibility of NMH. It might be a good idea to see a cardiologist and have a tilt table test. It has been speculated that NMH may be the cause of chronic fatigue syndrome and fibromyalgia. Although I agree that NMH causes one to feel extremely fatigued, the cause of the dysfunction must be investigated.
NMH can be difficult to explain, even to medical professionals. In simple terms, although in reality it is more complicated, you can call it orthostatic intolerance, low blood pressure, or syncope. Most medical staff should understand that basic medical terminology.
Whenever I had to list my medications for a doctor visit for whatever reason, nurses always assumed I had high blood pressure because I was on a betablocker. Time after time I had to correct that inaccurate presumption, and explain the neurological technicalities of NMH. It is sadly entertaining because the paid professionals are supposed to be taking care of me, and there I was, educating them!
As I have mentioned in previous articles, I cannot stress enough the vital importance of educating yourself about your medical condition. Ask questions, take notes, research and arm yourself with as much detailed information as you possibly can. It is my hope that my story can help you on your journey towards perfect health.
Betty help me out here if you wish, Al
Posts: 789 | From CT, | Registered: Jun 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
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another important find!
Posts: 3975 | From usa | Registered: Aug 2007
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Does anyone know how much this test costs? I've had low blood pressure for as long as I can remember but no one ever said anything (well, one nurse asked me if I was alive).
I'm always weak and dizzy and out of it. The mental fog is the worst.
I have a physical exam in a few weeks. I'll ask my doctor about it.
Thanks so much for this information.
brooke
Posts: 117 | From PA | Registered: Aug 2008
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I also had a positive tilt test and it was the worst test I've ever had. Dysautonomia was one of my first symptoms and remains one of my most disabling. I've been sick for 20 years.
I'm so hoping that treating the Lyme will help me. Do you have Lyme? Are you treating for it? (forgive me if you said this already. I had some trouble reading you whole post. I get a lot of brain fog when reading long things so I tend to skim.)
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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