I’ve been diagnosed with POTs and Dysautonomic Neuropathy this year and told I will most likely never ride again… Anyone still riding with these issues?
I’m doing (and failing at) cardiac rehab at the moment, but we haven’t tried any other treatments yet.
I was diagnosed with Mitral Valve Prolapse Syndrome Dysautonomia about 20 years ago. About ten years after that I tried riding again.
It was crap. I would go into full-fledged (silent) panic mode every time I tried to ride outside the arena. I was just OK in the smaller arena or the indoor but miserable outside. Even though after being diagnosed I realized that the agoraphobia and acrophobia I’d suffered from since childhood had a physical cause and name, knowing that didn’t make them go away.
I was great during the years between menarche and menopause (didn’t do a lot of riding but loved every bit of what I did), but after that diagnosis I never got back into that groove.
I want so badly to be back with horses again and maybe take some lessons with a good laid-back horse and trainer but I don’t know if I could at this point. I’m on meds for the panic/anxiety and I really want to see if they help with riding as with other activities.
Is there a dysautonomia clinic near you? It is a condition many doctors know little to nothing about and a specialist can help with information, including meds if those work for your type of dysautonomia.
There is also at least one FB group.
I am seen at Cleveland Clinic’s Dysautonomia Clinic and they work with a couple docs at Wake Forest to help me out in the winters when I’m not traveling as much, but it’s such a new diagnosis that I’m really struggling on so many levels.
Thanks for your experience. The ‘rule’ about me returning to riding is that I have to be syncope and pre-syncope free on a 30 day heart monitor to consider riding again and we do that once a year to see how I’m functioning.
It’s good that you have a clinic to go to. (I mean, not “good,” the whole deal isn’t “good,” but I’m glad you have a clinic to go to. 
)
I wasn’t diagnosed with POTS and don’t know much at all about syncope other than what I’ve read on FB. Several people on the group I’ve seen there were diagnosed with POTS.
I have POTS and NCS and all sorts of other fun acronyms. I definitely rode while I had it, but before diagnosis. I also tried to ride after, but was on Topamax at the time. I got the side effect that stopped any sweating. Being active was impossible to say the least. My best recovery system has been my recumbent trike. Yes it was pricey, but it keeps me in a good position for blood flow and allows me to rebuild endurance and some muscle in small amounts.
When i I first got my trike I could barely ride 1/4 mile. My longest ride to date was 30 miles for a MS event. I do better with rides in the 8-10 mile range with HIIT hills instead of long flatter courses.
Salt, salt, and more salt are my best friends. That and I should buy stock in Powerade.
I have POTs and my cardiologist is also a rider. As long as I take my meds before I ride, I should be ok, when I decide to ride again. However, I am noticing that with the time-change my blood pressure drops after taking the meds and I have lay down for 10 mins.
Riding sounds really dangerous for you. Take care of yourself…sending you best wishes
It is dangerous for me at this point, which is why I quit. I was hoping to hear stories of people who got their POTS under control and can ride again.
I would post something on Inspire - in both the POTS/Dysautonomia community as well as EDS since they tend to be comorbities (actually Sjogrens and Lupus groups may have input too). I’m trying to get in to a cardio clinic to make sure my alarming HR and swelling extremities is something “normal” and not my EDS saying it wants more friends on the diagnosis line. I feel like there is a para rider in the US with POTS but I’m not 100% on that.
For what it’s worth. My BIL was diagnosed with a seriously disabling case of POTS as a teenager and ten years later he’s playing basketball and running restaurants (and he is NOT good about wearing the compression socks, taking his salt tablets, not drinking, etc).
I have EDS, Gastroperesis, and maybe Mast Cell Activation Disorder along with POTs but right now the POTs is killing my quality of life.
I have POTS and general dysautonomia too, in addition to EDS. It’s been maybe 10 years since my diagnosis. The ‘normal’ drugs didn’t work for me at all, and I don’t do well with lots of salt. Go figure. It’s been trial and error but I think we are finally where we need to be drug wise. My cardiologist is awesome, very open to any suggestion/research I present. I went to the Mayo Clinic for a week long work up of stuff too. But my cardiologist has been my biggest help.
I haven’t had anything to ride for a couple years now, but I was riding regularly for years. Compression stockings helped, especially if I knew I would be standing for awhile. The hardest parts where the prep stuff - tacking up, etc. Once I hwas in the saddle, things were better.
For other reasons (related or not, we don’t know yet), my balance isn’t what it used to be and neither is my coordination. I was lucky to have very laid back, non reactive creatures - in my case mules and donkeys - which made a huge difference. They have been been super tolerant of me and more than happy to stop when I need a break. I don’t think it would have been the same with something hotter. If you have access to a laid back school horse or something, I’d start there.
As hard as it is, keep up with the exercise. Even if it doesn’t seem like it’s getting easier, (it didn’t for me which I find extremely frustrating) I did feel better if I kept up with it. If I missed too many days, I could feel it.
Unfortunately, there isn’t much out there about stuff like this, so it could be lots of trial and error until you figure out a combination that works.
Feel free to PM me.
I was just diagnosed with hEDS in addition to MCAS, POTS and gastroparesis. I used to be fine riding back when I was first diagnosed with POTS. Now though I’ve developed full blown MCAS (just allergies when I was riding) and gastroparesis. I can’t really absorb what I drink well which doesn’t help anything. At this point, the thing that helps me the most is IV saline, but its becoming a less viable option since my veins are crapping out and I don’t have good medical care here.
Eating a lot of salt (3-10g a day) and drinking a lot of water is supposed to help, though it doesn’t work well for me with my absorption issues. Compression garments (30-40mmhg) also are supposed to help, but I’m having trouble finding ones that fit. Everything seems too big. I have some CW-X athletic leggings that have joint support…but the compression on my abdomen worsens my GP. I can’t tolerate most medications, which makes things more challenging.
I somehow manage to trim hooves on my old pony and 2 minis, even during the summer. I think I might be able to manage riding during the fall, but I don’t have access to any riding horses and therapeutic riding programs are too far away. For me I think it’d be a matter of finding the right temperature range…50-70F so its not too hot or too cold, since both extremes do bad things.
Wow, there are a lot of us floating around in the horse world, it seems! I have IST, NCS and a very, very mild case of POTS. Also very mild hypothyroidism and asthma. Possible hypermobility but I haven’t been officially diagnosed. A beta blocker (propranolol in my case) makes life much easier in keeping my heart rate managed, and I’m careful when I’m changing positions and showering. Staying fit and exercising regularly has also helped immensely with symptom management. Otherwise, salt, salt and drinking enough water to float a boat. I still ride without any issues–it’s actually easier than work since there’s fewer positional changes!
I have EDS and POTS. My health insurance pays for 3 pair of compression stockings a year. I go to a medical supply store where they take my measurements and order my custom compression stockings. Last year I got the thigh high stockings and I love them. I wear the thigh high compression stockings all the time, even under my breeches. I also take salt sticks, salt pills, in the morning before I ride.
My goodness, shocked to see there are so many of us here. cEDS/POTS/SFN/MCAS/Gastroparesis/Pelvic Congestion Syndrome here, no idea if I’ll ride again. Spent the few years before diagnosis riding with some serious vertigo, though. Oops! :lol:
raises hand POTS here, but only if my electrolytes get out of balance. I have Adrenal Insufficiency (Addison’s Disease) which causes salt wasting, so if I don’t take enough salt I’ll have a POTS episode. My blood pressure tends to run low, with diastolic around 60 or so. Salt is my friend.
I have POTS, hEDS, MCAD and a undiagnosed autoimmune condition. I find that riding is one of the things that does keep me stronger, but I have gone through multiple periods of not getting to ride. My doctor told me that riding wasn’t safe, but I think that is crap advice. Feel free to PM me. It is nice to meet other equestrian zebras.
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