Neurocardogenic/Vasovagal Syncope

[gp19]

I’ve had this since I was 10 years old and unfortunately my trigger is heat, making it extremely difficult to avoid. Hot showers, hot beverages, caffeine, any type of up/down movement in the gym (box jumps, burpees, lunges), temperatures above 80, etc etc all cause syncope. As of now I’m being treated as a severe case, but the only thing that can be done is Midodrine (constricts the blood vessels) and excessive hydration and salt intake, which isn’t enough. My heart doesn’t actually stop when I faint, my blood pressure drops to around 90/30 so a pacemaker isn’t an option. I’ve taken Florinef/Fludrocort previously and it didn’t help enough to speak of.

I live in Georgia and the heat index is well into the triple digits 3-4 months out of the year, and temperatures being above 80 another 4 months. Walking to my car is a struggle from June-August, much less trying to ride my horse. I managed it this summer by riding at 6:30 am June-July, and then my horse got all of August off, but I was still lying in the barn aisle with my feet propped on the wall after my rides in September. Beating the sun and heat is much easier than escaping humidity. I’m extremely limited competition wise because of this, knowing good and well I have no business running cross country at 4 pm in June. Even May is pushing it. So that leaves October-April for my competition season, but my horse can’t just have 1-2 months off every summer to get weak/lose fitness.

I’m interested to try a cooling vest and wonder if anyone has tried one and how well it worked? I’ve dealt with this for 14 years and can manage it enough to function in day-to-day life but this is the first year I’ve had a horse since we got a definitive diagnosis six years ago. I’m trying to come up with some type of plan so I’m better prepared next year than I was this year. I’m considering taking up hot yoga to acclimate myself to the heat but that may just end up being a disaster. There is no way to avoid my trigger and there’s no “treatment” to speak of so I’m going to have to get creative about how to manage this enough that I can ride safely. Anybody have any ideas?

[Magicboy]

I do not have any particular illness but have suffered a heat stroke in the past so I often use a CoolMedic vest. It does lower the temp of your torso and is often used by MS patients who suffer from heat. Worth a try, in my opinion.

[hunt_jumpfl]

I was dx’d with neurocardiogenic syncope/neural mediated hypotension many years ago. Mine was well controlled with Proamatine until they pulled it off the market (generic midodrine unfortunately doesn’t work for me). I now live on Florinef and in compression socks as the goal was to get my bp high enough that when it drops I’m not symptomatic. I haven’t tried a cooling vest, but I used to ride with an ice tie around my neck when I was a teenager in FL. I needed to keep my head and neck cool to help me so I also used to spray my head with cold water before putting on my helmet. Fortunately I’m pretty good about catching my symptoms before I pass out as my heart rate goes with my bp

[poltroon]

A cooling vest and an ice tie can help some, plus maybe a Cookie’s Cool Cap, but I’d be concerned if they help enough. I don’t know how much warning you get (I’ve had this experience and I usually have warning). Losing consciousness while mounted is fairly bad! I hope you at least have a covered arena to ride in.

So stupid suggestion, don’t feel the need to respond if you don’t want, but … maybe Georgia isn’t the optimal place for you. Obviously there’s something holding you there and there’s no need to share what that is, but it sounds to me like you are pretty debilitated by your environment and there are other lovely places to live with milder summers. You might consider one of them and then budgeting yourself 4 round trip tickets to visit every year.

I hope the vest works for you!

[foggybok]

I have similar issues and bought a cooling vest. It helps, but I don’t think it would work in your temps and humidity very well… It only helps a little but enough to make it through some rides… I can ride in the 80s with it, but that’s about it… Also needs to be rewet…and it gets heavy when wet…

I also bought the cooling cap and frog togs neck towel…

I am much better if I drink enough Gatorade, so I’m never without…

Best of luck, it’s no fun… I didn’t ride for months this summer… and now it’s freezing and snowy…

[MustangSavvy]

I have POTS. Currently on Florinef, which doesn’t seem to help and makes my anxiety worse. I wish IV saline infusions were a option or at least if my doctor would entertain the idea. I can never drink enough fluids because of chronic nausea. I wish there was something that I found find that would really help. I have a few potsie friends who love there cooking vests.

[right_horse_at_the_right_time]

Increase your salt intake until you find the right balance and move. Life’s too short.

Cooling vests do help-I use one during the summer. Keep an ice chest And two vests and alternate.

[gp19]

Ahhck! I just saw all this, I really thought I would get some sort of notification when I got a reply. Sorry! Thanks everyone so much for responding, this really is a major roadblock in my life.

Magicboy how long does it stay cool and by how much? Is it like wearing ice boots on your body or more like a misting fan?

hunt I’ve never found anything that controlled this for me. The best I’ll get is no pre-syncope walking to my car. I can tell a difference in the summer when I have caffeine vs when I don’t, but as far as medications or excessive salt and fluid intake, nothing has ever helped enough to write home about.

poltroon I usually have some warning but there’s been occasions where I basically had none. I can’t tell you how many times I’ve ended up sitting nearly under a horse because I was too dizzy to stand. I’ve gotten myself kicked (very gently thankfully) for being in that situation. I’ve passed out hand walking before. Luckily I’ve never passed out while mounted but I have felt it coming and jumped off and laid on the ground holding a horse. NOT GOOD!! Because I’m so “young” (24) the doctors don’t want to do much. I actually have seriously looked at moving, and to be honest I hate living in (my town) Georgia!! I’m an insurance agent (1099) so I can go literally anywhere in the country, but when I’ve looked at weather in places where I thought it was cool I still saw where it was 100 degrees in the summer and got discouraged. I miss living in Texas more than anything and I’d love to move back there but the eventing scene just isn’t there. I lived there one summer and while it was still a struggle they just don’t have the humidity Georgia has. Maybe one day I can afford to have a summer and a winter home! If you know anywhere that has mild summers and reasonable winters I’m all ears. Did I mention I hate the snow? I’m from Georgia. Snowpocalypse (Atl) is a real thing… NO clue what to do with snow, and if I’m expected to still function in it I’m toast. Read: My whole life, the entire town has shut down with the threat of flurries. Flurries!

Mustangsavvy florinef did diddly squat for me. It didn’t increase anxiety though? Weird. I hate that for you. I’ve taken welbutrin on and off for years for ADHD so I could concentrate at school/study for a major test and the first couple of days I take it I want to claw out of my own skin from the inside out. I’m totally with you on the IV fluids. I can’t drink enough fluids because my case is so severe there is no such thing as enough fluids. Do you actually have a “trigger” with that? Or it’s literally just standing or being upright?

right horse I’m laughing that you said to move because life is too short. I tell my boyfriend this all the time. I’m so lucky because he’s incredibly supportive of that. He doesn’t fully understand what I deal with, but he knows it’s a huge hindrance to my entire life and he just wants me to be comfortable. This last summer I really just came around to that same conclusion, life is too short for me to suffer 3/4 of the year for the next, however many years it takes for a doctor to decide he wants to help me. Which is another reason I’m so frustrated! My first appointment with my current electrophysiologist he actually said “this is a life long condition that alters your entire life” and I literally almost fell off the exam table that he understood that without me having to get on my hands and knees and yell and scream and plead and beat it into my doctor’s head. So I do have a great doctor, and I have an appointment with him the first week of March to discuss the option of either ablation or a rate drop response pacemaker. Everybody cross your fingers he’s willing to do either cause I will straight ugly cry if he says no to both. I’m not a cryer but to repeatedly hear “there’s nothing we can do” weighs on a person after a while (14 years).

I am open to any and all suggestions, seriously. No matter how crazy, after 14 years I will take ANYTHING.

[Magicboy]

I’d do a little research on how folks with MS protect themselves from the effects of heat…you might get some good ideas

I use my cooling vest mostly at horse shows ( you can show in them, by the way) and find that the vest lowers the temp of my torso a few degrees. For me, the effect lasts about 30 minutes, then it’s time to rewet the vest

[poltroon]

If you can literally go anywhere I’d suggest the Seattle/Tacoma area. Eventing isn’t huge there, but you’ll be able to ride so much more that I think it would be worth it.

[gp19]

Magicboy I will add that to my research. I never would have thought to search that way.

poltroon I’ve considered Seattle before but didn’t look that hard into it. I will start looking again. I know it would take me 2 days to get to a show and I’m not sure about trainers up there but yes if I could ride more it may be worth it.

[Magicboy]

I found out about heat triggers for MS when I started searching for a cooling vest. I needed it because I’ve had heat stroke and likely to have it again in very hot temps. In the summer, I ride so early that it’s usually dark when I go to the barn, but shows are different, of course.

New England might be good for you, too

[foggybok]

Moving to coastal CA was great for me, never got too hot to ride. But it’s foggy and that gets some people. From there, I went to Western Washington. I love it there because I can ride all the time (although rain happens). Our farm in in the rain shadow on the Olympic Pen, so not too bad… Now that I’m in MN, my riding had been severely cut back, too hot or too cold… So if you can do Seattle, you might be happy. It’s a great place to live…

[gp19]

I’ve considered California but the cost of living and crime rate scared me off. But I think they have the most ideal weather for me. It may be a couple of years before I could afford to move myself and a horse 3,000 miles across the country to Seattle, but it may merit a visit just to see if I would even like it. I’ve never been there but I hear it’s beautiful and I know lots of people love it.

[poltroon]

I don’t worry about crime in California, not sure what you’re looking at, but cost of living is very high any place that the weather is nice.

[gp19]

Yeah, good point.

[foggybok]

yup, we left CA because we couldn’t afford to not be working there… In WA or MN we can… Very expensive!

[gp19]

My boyfriend is from LA and lived in Santa Barbara for a while when he was younger and he would love to move back to California, but I think even if we brought our own cardboard box to live in we couldn’t afford it. We’re actually looking at Asheville, NC so I can be near my grandmother. She fell at Thanksgiving and broke her back and I’m the closest family to her and I’m 3 hours away with no traffic through Atlanta, so with traffic that 3 hours turns into 5 easily. I’ve only driven through Asheville, and while I’m sure it does get hot, based on the weather averages I don’t think it’s anything like Georgia. It seems like it would be doable. She has to out-live me so if we do move, we’ll be there to stay for quite a while :yes: