A Health Journey from BPV to PV
Benign Positional Vertigo to Polycythemia Vera

My personal experience with several health issues might help provide you with some insight. It took several years for me to correctly diagnose and find suitable treatment for the disorders. I realize that I may be a little pretentious but I would like to let you know in particular about three disease processes that are often not diagnosed or just ignored.

They are: (1) Benign Positional Vertigo – you will probably be told to “learn to live with your dizziness”; (2) Sleep Disorders especially sleep apnea - many people are aware of their own sleep apnea but ignore the symptoms; (3) Polycythemia Vera - a blood disorder resulting in too many red blood cells and causing high blood pressure and related problems

And now the journey. . .
At age 50 I felt lousy -- my legs felt like logs, no muscle tone and no energy. At 53 I knew I had to find a solution to my health problems. I left my family doctor and went to an internist.  He immediately found that I needed to have half of my thyroid removed. The situation a moderated a little when I was given synthroid, however I still felt I wasn’t up to par.  My blood pressure was high and I felt generally unstable and nauseated at times. The internist ran standard tests and treated the symptoms but he was reluctant to really dig down to find the root causes.

At age 57, I switched to another internist who tried to help me through local testing. During this same time, I underwent a prostate operation. I also had tinnitus, a benign brain tumor and a series of heart stress tests. In addition, I was told by the internist and other local doctors and by the Univ. of Iowa hospital (rated first/second best in the U.S.) that I just had to learn to live with an inner ear problem that they termed motion intolerance. I had constant “car sickness” from head movement that I was unable to work and went on disability at age 58 from Caterpillar in East Peoria, IL.

During my 3 ½ years on disability, I was also able to determine that I was also suffering from hypoglycemia, male menopause, high blood pressure, congestive heart failure, and sleep disorders all this occuring at the same time of my motion intolerance (eventually Benign Positional Vertigo). That’s what gave the doctors so much trouble as we couldn’t separate out the reactions to each disease. I give my wife Marilee all the credit as she stuck by me and we methodically identified the individual problems.

At age 58, the motion intolerance developed into the classic Benign Positional Vertigo which is caused by calcium granule “floaters” in the inner ear. This condition is often cured by a canalith positioning procedure (Epley maneuver). The head is manipulated to get the granules to drop in an area of the ear where they will not cause problems. Of course, none of the doctors or therapists in this area could do this procedure so I had to go to Loyola University in Chicago. And, of course, the procedure didn’t work for me. They sent me home “to live with it.”

At age 59 my hypoglycemia came on with a vengeance. I had indications of hypoglycemia as a young adult but it had not bothered me in many years. I started to have hot flashes, flushing and night sweats. I also found out that I had male menopause - my testosterone was way low. I had a second prostate operation (TUR) as the surgeon messed up on the first one.

I have been diagnosed with three sleep disorders called sleep apnea, periodic leg movement and restless leg syndrome. My wife says I have had the leg movement problem for years. If you suspect you have sleep problems you may want to contact your doctor because the diagnosis and treatment now are more than adequate.The following magazine article describes the condition: Killer Sleep “After years of fatigue and disturbing confusion, the author discovered the cause—sleep apnea—and a treatment that may well have saved his life.”

Eventually,at age 60, a friend clued me in to the Shea Clinic (http://www.SheaClinic.com) in Memphis where my vertigo was resolved over a year treatment period. I hate to have other people suffer with some of the same conditions when there is a treatment available. Check Curing Vertigo for a description of Benign Positional Vertigo. The following magazine article describes the vertigo conditions: Stop the Spinning “For seven long years I suffered intermittent attacks of indescribable fatigue. Though I learned to cope, it would take a new — and amazingly simple — treatment to end my symptoms.”

The standard manipulation treatment mentioned in the vertigo magazine article did not work for me. Neither the local doctors nor the University of Iowa Hospital in Iowa City offered a suitable treatment.  I was told to learn to live with the condition. Over three years later I learned from a friend of a treatment offered at the Shea Clinic in Memphis, TN. They have developed a surgical procedure that cured my condition.  It was nearly miraculous in my estimation. Please click on “Vertigo Journey” for a more detailed explanation.

I was able to return to work 9 months later but I felt absolutely lousy. I was afraid that I wasn't adapting to the rigors of working again. While at Memphis a medical technician had mentioned that my blood work was off and that I should mention it to my doctor. In the excitement of being cured of the vertigo, I forgot about the technician's recommendation. I mentioned it to the doctor and he said that the disease mentioned was too rare for me to have. Well, it never seems to stop!  I found out I now have a extremely rare blood disorder called Polycythemia Vera(PV).  My bone marrow produces too many red blood cells which makes the blood too thick. This can lead to blood clots, strokes and heart attacks.

My local hematologist made arrangements for me to be reviewed by an endocrinologist at the University of Chicago for my hypoglycemia and endocrine problems. The Chicago doctor was also teaching/research professor and has never known of a patient with my combination of health problems. The test results were good as far as not having an imminent problem - no tumors etc. The hypoglycemia became less of a problem as my blood levels were controlled.

At age 61, I had completed all of the diagnostic tests for PV and started a program where I have to have periodic blood lettings and constant lifetime treatment by oral Chemotherapy. I am bothered by constant fatigue and nausea. I don't feel too bad if I don't do any thing physical. The condition is not life threatening but it does have a negative impact on the quality of life.

At age 62, I'm having a difficult time trying to control my blood levels. Weekly blood checks are needed to try to keep everything in balance. Even then, I was hospitalized for a week with blood clots in the legs as a result of the PV, and now take a blood thinner to try to avoid future occurrences.

And the journey goes on...

Note: From my experience, each person has to take an active role in their own healthcare. The health system is set up for the doctor to make his decision in a few minutes and then move on to the next person. You may encounter such comments as “you’ll just have to learn to live with it” or “that’s too rare -you couldn’t have that” or “that’s a part of growing old” or “it’s going around”. They tend to not go beyond the obvious until you request it. I personally have several examples.

An intern at the hospital told me I was a “zebra”. i.e. If you hear galloping behind you, you would expect to turn around and see horses - not a zebra!. They expect to see the obvious disease!

Feel free to contact me for further information.    

Click on the “Contact” icon for full contact information.