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Update to My Life and Orthostatic Intolerance
The improvements that I have had with the g-suit and ITD have enabled me to pursue a thorough Orthostatic Intolerance (OI) evaluation and participate in several Research Studies. It has been wonderful to have the opportunity to talk with doctors and research teams who are knowledgeable about Orthostatic Intolerance (OI). I have learned so much more about Orthostatic Intolerance (OI) and how it affects me. Hopefully, the research results will also help others with Orthostatic Intolerance (OI). It was a very interesting and sometimes difficult (lots of symptoms!) experience. The evaluation and testing were free, except for travel expenses. It was great to get to discuss treatment options with expert physicians.
The medical tests showed that I have Postural Orthostatic Tachycardia Syndrome (POTS) and low blood volume. (A low pulse pressure can be a sign of low blood volume.) As part of the research study process, I got to try several medications and found one that works well for me. Inderal lowers my heart rate by blocking Norepinephrine, which was too high, and that has improved my brain function tremendously. (I also learned that water is supposed to be able to lower my heart rate.)
With Postural Orthostatic Tachycardia Syndrome (POTS), it can be important to find a medication that reduces the heart rate without increasing tiredness. It turned out that I "like" a much higher dose of Inderal (almost 4 times higher or 70 mg/once a day) than most Postural Orthostatic Tachycardia Syndrome (POTS) patients (20 mg/up to 3-4 times a day), and it helped my brain a lot from the very first higher dose. I have found that a lower heart rate is quite restful! It is easy to go too high (pushing blood pressure too low??) on this dose, though, and end up more tired. My doctor prefers Inderal over Lopressor (metoprolol) for Postural Orthostatic Tachycardia Syndrome (POTS). (I started Inderal at the research center, but it is a medication that my regular doctor can prescribe.)
We, also, found out that my mom's norepinephrine level was almost 4 times higher than mine, which is considered to be too high also. We were told that the super high norepinephrine could be a side effect of a medication she had been taking for a long time for migraines (Norpramin). When she tapered off the medication, her energy level increased dramatically; it has been an incredible improvement! However, her pain level also increased for her whole body, so that has required a lot of attention to get under control. Since the side effects of pain medications have been numerous, she just started working with a pain specialist to try alternate pain treatments, like nerve blocks and neurostimulation. I hope it works! Be sure to check with a doctor about side effects of medications that could be making Orthostatic Intolerance worse.
With Inderal increasing the end of my day by 2-4 hours, I was able to use them to study and added school to my life again. I am so glad I waited because the improvement in my brain function has made learning a lot easier than it used to be. I started "going" to college from bed through a school named Excelsior College (www.Excelsior.edu), which offers a lot of flexibility. They accept a wide variety of ways (college courses on-campus and online, written correspondence courses, independent study and proficiency tests, portfolio of life experience) to get accredited college credit that leads to a degree. They work with a lot of adults, including members of the military, who are working and can not attend traditional college campuses. (They also have many international students.)
I have studied at home and in bed and taken proficiency tests (about one per month) for college credit. It has been very helpful to get to work at my own pace and save all the energy it would have taken to go to class. I started studying in January 2009 and have earned credit in a wide range of subjects (US History, Civil War, American Government, Astronomy, Chemistry, Biology, Natural Science, Analyzing Literature, College Math, Computing, Biochemistry, Molecular and Cell Biology, Statistics, Humanities, Substance Abuse, Health, Business Ethics, Social Sciences and History, Personal Finance, and Marketing) through Credit-by-Exam programs like CLEP and DSST, which has been perfect for me. I also took 2 correspondence courses in Calculus. I completed my associate degree in 2010 and my bachelor's degree in 2013! I was able to attend both graduation ceremonies. I also created two scholarships at Excelsior College in honor of my grandparents, who value education and have shown support to many people, who were pursuing their educational goals.
I have now been accepted to a Master's program in Biostatistics, which Texas A&M University offers that is entirely online. I would like to be a biostatistician and be part of clinical research teams that are pursuing causes and treatments of chronic illnesses, in particular Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI). I am looking forward to learning how to help set up the designs for research studies and to analyze the results.
In order to be strong enough to try graduate courses online, I feel like I need to get the rest of my body caught up to my brain. I have been pursuing several issues:
I was tested for sleep apnea/hypopnea and I am trying a sleep machine. I realized I spend 10-11 hours every night trying to get a good night's sleep, and then I give up and get up for the day. I tend to have insomnia; I am not overweight, and I do not snore, so I did not know that a sleep machine could help me. I am going to be trying an auto-pap, which automatically adjusts pressure throughout the night, instead of a c-pap, which runs at a constant pressure, for hypopnea / shallow breathing.
I have also found a wonderful physical therapist, who knows a lot about fibromyalgia related problems and is willing to help me build core strength extremely slowly. I do some strengthening exercises at night, so I have a long time to recover. (Even if you are bedbound, there may be some things you can do in bed to stay stronger than I did.) I am tired of feeling so crummy and feel like I need to find the line between Postural Orthostatic Tachycardia Syndrome (POTS) and deconditioning. I can only do one big thing at a time, so I was not able to keep up with an exercise plan and school at the same time. In order to make exercise possible with Postural Orthostatic Tachycardia Syndrome (POTS), I was told that it is important to have a lower heart rate, which I am doing with Inderal.
I have been evaluated and diagnosed with Vertical Heterophoria. When a person's eyes are not quite level, it can cause a whole host of symptoms like dizziness, motion sickness, balance problems, double vision, blurred vision, depth perception problems, reading problems, etc. The eye muscles try to compensate, but they are made to move laterally and not vertically. One of the most noticeable things people do to try to compensate is tilt their head, but this throws the whole body off causing many more symptoms, like neck and shoulder pain, migraines, and many other physical problems.
Dr. Debby Feinberg and her husband, Dr. Mark Rosner, have just finished a book about patients' experiences called If The Walls of My Exam Room Could Talk. For instance, some people who have ADD/ADHD, dyslexia, or think they just can not learn to read have this problem. People have even been successfully treated, who have traumatic brain injuries and reached a plateau with their therapy. Once they are treated for Vertical Heterophoria, they begin to make progress again.
Dr. Debby Feinberg treats Vertical Heterophoria by adding a prism to eyeglasses. (The doctors are taught in school that, unless the person needs a lot of prism, a whole dioptre, it is not worth bothering with, but Dr. Debby uses very small increments and has found that it can make a BIG difference.) The prism moves the image up or down so the eye muscles no longer need to strain to fuse the image properly. Leveling the eyes relieves the strain all over the body. It can help even weird things like gastric reflux! We wrote to Dr. Debby and talked with her on the phone before going to see her in Michigan because we were not sure we would fit her profile/questionnaire from her website. She has a lot of experience with treating patients, who also have Postural Orthostatic Tachycardia Syndrome (POTS).
We pursued Vertical Heterophoria because my mom has had life-long motion sickness and lots of migraines. I did not expect to have this, too, since I associate most of the symptoms I have with Orthostatic Intolerance (OI). It has taken some time to adjust to the glasses, and we need to go to follow-up visits. Since my eyes are not so involved in the reaction any more, it has even changed how I experience the dizziness of Orthostatic Intolerance (OI).
Overall, we are still pretty early in the process of pursuing these additional issues. We are trying to keep making positive progress and putting all of the pieces of this puzzle together. Compared to how well I want to be feeling, I still have a long way to go, but with treatment, I am a lot better than I was 20 years ago, when I first got sick with Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI).
I graduated in 2019!
I have noticed that the treatments that have helped me the most (g-suit, ITD, Inderal) all have one thing in common - increase blood circulation passively. With this in mind, I have been trying a warm bath (not too hot) to help with recovery after exertion, like going out for a doctor's appointment. It is extra effort at the time but the bath seems to help lessen the recovery issues - pain and tired and resting and/or pushing for days after. Also, even if I feel worse for a while afterward, if I take a bath mid-afternoon on a day that I stay home, it can give me a boost a few hours later for something like physical therapy (gentle stretching).
At the end of 2020, I was diagnosed with gastroparesis (slow stomach emptying). I have been trying lots of food, medication, and lifestyle changes to help those new symptoms.
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