Pots Success StoryI was just talking to someone about my experience with Postural orthostatic tachycardia syndrome (P.O.T.S.) when I was younger. Back then, there wasn't a whole lot of information on the internet about it. I was surprised to see there's much more information out there now, although I haven't seen a lot of attention placed on the form of treatment that actually worked for me. What did end up working for me was osteopathic manipulative treatment. I saw a board certified Doctor of Osteopathy who was additionally a Cranial Osteopath, which requires more education than a regular DO, who specialized in sports medicine and manipulative treatment. Keep in mind that if you do seek osteopathic treatment, keep in mind that *proper* osteopaths who are also cranial osteopaths who specialize in manipulation may be rare. I've seen other osteopaths who didn't seem to have the same level of expertise and knowledge. So, just be aware of that, and try to find a good one. My full story follows.
My only disclaimer is that I'm not an actual doctor, so my medical explanations are relatively weak and in layman's terms, but hopefully there's enough there to get the idea accross.
Today, I am 23 years old, and I do not suffer from POTS, but there was a time in my life when I did. I developed POTS when I was in 13 years old, in 7th grade, 6 months after sustaining a serious traumatic head injury. I was skateboarding on a half pipe and fell from the top and sustained a grade 3 concussion. I don't remember exactly how it happened, but I assume I probably fell from the top to the bottom on my back from the way I was laying when I regained consciousness. A witness said I was out for probably 30 seconds or so. I do remember getting up, feeling disoriented and really bad and dumping someone's canteen of water on my head because I felt like I was like suffocating or something. I blacked out shortly after that, which is when my dad drove me to the hospital. I had a seizure in the emergency room. They kept me overnight. I had amnesia, kept waking up and asking the same questions over and over again to my family. The hospital did brain scans and didn't find anything serious, so they let me go home the next day. I went straight back to my normal life, continuing to skateboard and do sports and whatnot.
Slowly, over the course of probably about 5 months, my condition got worse. I had a few more minor head injuries in sports (I was playing soccer at the time), and I gradually developed the symptoms of POTS. The big ones for me were the constant feeling of fatigue and feeling like I wasn't getting enough oxygen and just kinda feeling like I was half drowning all the time, if that makes any sense. Sitting was easier than standing for me. And I was periodically having panic attacks - increased heart rate, feeling like I was going to die, losing my vision, cramping of hands and stomach and other muscles, hyperventilating, needing to breath through a paper bag, etc. Bad times. It was awful, and I was really scared because I didn't know what was happening to me. My symptoms eventually got so bad that I had to drop out of sports and eventually school. I cried to my parents and told them I had to figure out what was wrong and get it fixed. I was doing a lot of research online and I was convinced that I had lyme disease because a few months before I had had a weird looking rash/localized skin condition that somewhat resem
I starting seeing a bunch of doctors. I got plenty of blood tests for lyme disease - they all came back negative. I thought the tests musts be wrong, and I ended up getting my blood tested several times, but I kept seeing more doctors anyway at my parent's recommendation. It was very frustrating though. Nobody had any idea what was wrong with me. I saw a bunch of random specialists, I don't really remember them all right now but I do remember seeing some sort of neurologist who strapped electrodes and a small computer to my head for a few days while depriving me of sleep. And that test turned out completely "normal." It was really frustrating - all of the tests showed that I should be really healthy, and yet I felt like I was in hell.
Well, eventually I had an appointment with a cardiologist who was actually a colleage of my grandpa at one point. I told him my story, and he was familiar with that story because his colleague's daughter had the same experience - head trauma followed by the symptoms of POTS. She saw a cranial osteopath in the state of Delaware that ended up fixing her through a series of manipulative treatments. I was very skeptical, but hearing her success story gave me hope. So, I schedule an appointment with the same doctor who helped her, and I think I saw him a few weeks later. In the meantime, my grandpa (who had been a cardiologist in his day) questioned him over the phone and made sure he wasn't a quack. He was actually impressed by his level of knowledge, which was comforting to me.
When I saw him, he gave his thoughts on what the problem could be, and said he couldn't promise that he could fix me, but hopefully he could help. Over the course of my treatments with him, he eventually explained that POTS symptoms were probably being caused by traction being placed on the nerves around the ba
The first time he treated me, I had a panic attack, which freaked me out, but he was also able to largely quell the panic attack at the same time by manipulating me and triggering the nerves in the abdomen that help trigger relaxation (i.e. the same nerves used in deep breathing relaxation techniques). The next time he treated me, we arranged to have it at the cardiologist's office for 2 reasons: 1) so I could be hooked up to their monitoring equipment just to be safe and 2) so that he could demonstrate the treatment to the doctors at the office. That time, he used a particular technique in order to avoid triggering the panic-attack-inducing nerve response while also being able to treat the underlying physical problems. It was a relatively successful treatment in that progress was made, although I continued to see him and get treatments over the course of several months. I gradually did get better, and eventually I was able to get back to school and return to being a normal kid. By the next school year, I barely had any POTS symptoms left. I only had a few panic attacks after that point. It's been many years since I've had a panic attack, and I'm very grateful for that. And I'm very grateful to no longer suffer from POTS, and I feel like I owe it all to this doctor.
So if you're suffering from POTS, give osteopathic manipulative treatment a try. It's very gentle in contrast to other forms of manipulation (such as chiropractic treatment) - just be careful - at the very least, get a board-certified doctor of osteopathy who specializes in manipulative treatment. Ideally, he should also be a cranial osteopath.
I hope this helps some of you out there. Never stop trying!
dliebner 22-25 5 Responses 3 Jan 12, 2011