My daughter started experiencing difficult symptoms when she was 16. Initially she started having hot flashes and dizziness, which were scary enough. Later her symptoms progressed to include fatigue and at times feeling like she was going to pass out. We went to the doctor and they found nothing wrong. She had always been in good health and in the past would only have a headache once or twice a year. Then she started having an almost non-stop headache that would usually be at least a dull ache but at times would increase to a migraine that OTC medications would not touch. She was prescribed Imitrex for the migraines but both times she tried it, the headache intensified and her legs and face were very red hours after taking it.
She had a Brain MRI and MRA which were normal; an EKG (also normal) and a Holter heart monitor. I felt like I had to insist in order for the doctor to even order the Brain MRI. When taking her blood pressure to be sure it wasn’t high we noticed that her pulse was at times in the 90’s to 127 which is in part why (a different doctor in the same group) ordered the monitor. Her doctor’s assistant called me to say that the Holter monitor was normal although her heart rate did get up to 160 at times. There were no abnormal or irregular beats. (i though ‘Really?!! ‘Normal’….what is normal about a teenager who is laying around while wearing the monitor having Tachycardia 20% of the time!) I didn’t understand what would cause a healthy teenager to have a pulse of 160 when she was at home laying around the entire time she had the monitor on. I was also concerned with her hot flashes. At times her legs looked sunburned they were so red during a hot flash. She missed an entire week of school because she was so fatigued. Of course I was also concerned with the dizziness and near fainting as she usually drove herself to school. We eventually went to a neurologist (because of the migraines). He told us that based on the Holter Monitor results, she needed to see a Cardiologist because he felt she may have a congenital heart condition.
Finally, 6 months after symptoms started, she was admitted to the hospital for testing and a tilt table test was done. It was positive for POTS. We were relieved to have a diagnosis, but that quickly turned to dismay because adding salt to her diet and the various medications she was prescribed did NOT help with her symptoms. I spent hours on-line reading anything I could find from medical forums in which others had problems being diagnosed, to articles by physicians. Finally I did find an article by Dr. Blair Grubb from Ohio, in which he talked about a sub-type of POTS called ‘Hyperadrenergic POTS’. This form seemed to be hereditary. Reading about the various symptoms led to conversations between myself and my mother relating our various symptoms we had experienced over the years. His article also had a table that listed treatments/medications that were found to be helpful for POTS patients. What was nice is that it listed some that were specifically helpful for ‘Hyperadrenergic POTS’. Birth Control pills, Cymbalta, Sudafed, staying hydrated, etc. That was interesting because my mom had taken Sudafed for years as it really helped her. I had been taking Cymbalta myself which can be prescribed not just for depression but also for pain/fibromyalgia.
The Cardiologist really had no experience with POTS. When I gave him the article by Dr. Grubb and a list of symptoms that myself, my mother and 2 of my nieces had experienced (to show him it really sounded more plausible that she had the ‘H’ form of POTS, he did and said nothing…..no acknowledgment that maybe that was the case, no change in medications. It was as if he just dismissed the information and I doubt he ever even read the article I gave him. The meds she has been prescribed were Metoprolol, Midodrine, Florinef, Ritalin, as well as high salt intake. None of those were any help to her……and none of them are on the list as being helpful for the H POTS either.
We eventually went to our physician’s group and started only seeing the Nurse Practitioner who actually took interest in learning about POTS. She prescribed her birth control pills as well as Cymbalta which both did seem to help her. We learned that hydration is extremely important as well as taking care of yourself. When seasonal allergies are an issue it is important to keep them under control, taking medication when needed. Things that would normally not be as difficult for a person without POTS, can be very difficult when you have POTS. For females, menstruation can be especially difficult. A simple cold or the flu can be compounded for those with POTS.
Later my daughter had her wisdom teeth removed and fortunately the dental surgeon went to great lengths to read about POTS prior to her procedure. He hydrated her more than normal and was very cautious about everything which impressed us both. Even with all of the precaution taken, when we went for her followup visit with him, she suddenly felt nauseous and got sick. Her face turned bright red which was surprising. I can only imagine what would have happened, had they not taken so much interest in being careful prior to and after her procedure. We wondered why physicians didn’t take more interest in getting to the root of her diagnosis when we went several times to our regular doctor only to have them really do nothing until finally the Holter Monitor was ordered. It is so disheartening to have them look at you as if it is all in your mind. I knew it was not. My daughter was going through REAL symptoms, whether visible or not, I knew they were real!!
It was a very difficult time because she had to be placed on home-bound due to the extreme fatigue. When she would go to school at times she felt like she was going to pass out when standing, especially for prolonged time. She was in advanced classes and unfortunately home-bound did not allow her to stay in those classes because the teachers that would bring homework and assist did not do so for those classes. She was so discouraged that she decided to get her GED instead of completing her Senior year. I completely understood though I wished this disorder hadn’t robbed her of her Senior year.
To this day we are not thrilled about our current and past experiences with doctors. Many just dismiss symptoms to ‘stress’ or just don’t bother with an explanation if the tests they run are normal. Something needs to change……one can only hope.