Pots Success Story

I 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 resembed a bullseye rash.

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 base of my skull (it's been about ten years now, I don't remember exactly which nerves it was, it may have included the vaso-vagal nerve, or it may have been other one(s)) by the surrounding tissues. This traction was a direct result of the head trauma I had sustained - the intricate system of tissues and structures and ligaments and whatnot in my neck had basically gotten messed up by the injury. The solution, then, was to relieve this tension through manipulate treatment that would restore my body to it's natural state.

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 dliebner
11 Responses Jan 12, 2011

Thank you for sharing your story! I was recently in a car accident where I suffered a TBI and now POTS. It is not pleasant and I have had difficult time finding any "success stories" I am feeling more hopeful after reading this. Thanks again!

Add a response...

your post is amazing. Thank you so much for posting my 14 year old has been through 8 months of no relief.... similar to what you went through. Can tell you the hope this has given us. We have found a cranial osteopath and will hopefully see him in a few weeks.

Great site for referrals: www.cranialacademy.org

My niece was just diagnosed with this and its heartbreaking to see such an athletic kid who loves school have go through this......your post gives us hope!!! Can you please give me the name of the doc you went to in Delaware. She lives in VA, but is willing to try anything!!! Thanks!

Hi dliebner I am
Praying you still check this. I had the same experience as u a major accident in 2007 head trauma I would have minor symptoms but then I just had a baby an 3 weeks later came down with a cold lifted my head the home room was spinning I had double vision amnesia then everyone I would stand I would sweat severely lightheaded naueas my heart rate upon standing would jump to 150 an bp would drop they told me I had pots every day now I am lightheaded brain fog swaying as if I am on a boat trying to take care of a baby. I KNow it's my neck

Please tell me which doctor you went to. I live in Delaware and am suffering from POTS.

Very important share -- thanks so much. I have a son who is in much the same situation from the soccer to the concussion and has been diagnosed with POTS since September 2013. Would you be willing to share the name of the doctor you went to -- we have access to an osteo path here but I'd like to get more info on the treatments he was able to provide. Thanks!

I don't think your doctor helped you. With research you will find that most teenagers that develop pots outgrow it on their own my daughter did. I on the hand developed pots in my 30's and had it for 8years and am it won't go away.Because I developed pots late in life.

He wasn't just a teenager that developed POTS. He had a head injury that triggered it. An adult can also develop POTS from a head injury. Those are two different circumstances (Being a teenager vs. head injury) that may have required different treatments to help.

I am on my 3rd bout of POTS (which also seems to be genetic via my grandmother and her grandmother) - my episodes leave me on total horizontal rest. I have a total of 3 minutes I can hold my head up for before I faint.<br />
<br />
This time, we live in a city where I have a chiropractor who is alternative, gentle and very much an energetic healer. She just treated me for an hour (very long session!) and already I am walking around the house. She said very similar things to your osteopath - the vasovagal nerve, the cranial work to free up the ba<x>se of my skull. Also I have a virus which she worked on releasing from my body also...viruses, as we know, spark POTS symptoms off.<br />
<br />
I am quite shocked. I have not been able to even stand long enough to shower for 8 days now, and yet I just got up and put the dishes away.<br />
<br />
Seeing her again in 2 days and CAN'T WAIT to see further progress.

I have POTS without any head trauma. Mine is believed to be genetics being that my dad shows some of the same symptoms. I have never tried any forms of manipulation but wonder if it would help being that my POTS was no do to any injury?

I am a physical therapist with a friend who has a 13 year old daughter diagnosed with POTS. She did not have a recent head trauma but did as an infant. She has been having a rapid decline overall and I am trying to assist my friend. Is there any chance I could be put in touch with your D.O.? Your story is very inspiring.