Dysautonomia EDS and horses

[Guest ANCY]

Hello all! I hope you are doing as well as can be. 

We recently were able to move to the country and by the end of next week will have 3 horses. I have had someone offer to do one hippo therapy session with me and I'm hoping they can help get me started, but of course it's doubtful they know about eds or dysautonomia. 

I saw my cardiologist last week and he said it would be ok for me to try riding, with some sort of seat belt lol! So Just wanted to see if any of y'all that ride have any advice? Is there anything that helps keep the dysautonomia symptoms from flaring? How do you handle the heat? For those with EDS are there any special precautions? Do you use a special saddle? I see a Geneticists on Monday and do plan on asking them but I thought it would be helpful to hear from people who live with it. Thanks!

 

[Katybug]

I have ridden for 38 yrs and trained horses for 27 of those. I'm hoping your doc was joking about the seatbelt because that would be flat out dangerous to bind yourself to the horse in any way. And as safety goes, please consider wearing a helmet.

As for dysautonomia,  super hydrating before, during, and after the ride during the summer months is important  (even for healthy people.) I find that my problem is not actually while I'm riding because you are using your legs muscles and keeping the blood pumping. It's when I get off that I tank from a POTS perspective. So when I get off, as tempting as it is to stand still, I have to keep walking or lie down immediately or the blood pooling in my calves will trigger presyncope. 

As for EDS, my worst joints are my hips. I have found that I have to ride in an English saddle because the seat of the saddle is narrower. (And riding the more narrow built horses helps too.) I also have to ride with my stirrups a bit shorter than what is correct because it allows me to relieve some additional pressure off my hips. My hips will start to dislocated if I don't take these precautions. Because EDS affects different joints differently for each person, you might have to see if the riding aggravates anything in particular and figure out modifications specific to your needs.

Do you have riding experience from prior to developing health issues?

 

[Guest ANCY]

Thank you Katy! That is truly impressive!!! I appreciate you sharing your wisdom, want to be wise and not cause an injury that will set me back so I'm all ears lol!

That was my thought when he said seat belt but unfortunately he was serious. I still am dependant on a wheelchair so he is concerned that my core is not strong enough right now. One person had mentioned using a paraplegic saddle but of course don't own one of those so would not be a long term answer. Definitely will be waring a helmet, no question there.

The horse I will be riding is from the rescue place where they offered to do hippo therapy with me, the owner said he was comfortable with me getting on that horse and not the others we were looking at. Eventually I may ride my little sisters horse, he's a polish Arabian so a lot smaller and athe 17 pretty easy going. 

Thank you for the advice on how to handle the dysautonomia stuff, I can't walk around yet after but hopefully soon. I will definitely push the fluids!

Unfortunately my hips and my shoulders are about the worst for me, I've dislocated both on several occasions. So caution about the hips does apply to me, especially since I'm short and so almost any horse is a wide spread. I've never ridden English does it take more muscle? My little sister (has differential diagnosis of eds) is also having trouble with hip pain when riding and was talking the other day about trying English. 

As far as experience goes, previous experience is only about a trail ride every 2 years or so when we went to our grandparents. So not really lol! Any advice from your years of experience is so appreciated. 

[Katybug]

Sent you a PM.

 

 

[corina]

Sounds super exciting Ancy! Hope you can figure things out to try horse riding!

[Guest ANCY]

Thanks Corina!  Even if it's a while before I get to ride, I'm already enjoying having them around and interacting with them. ?

[Guest]

I actually had to give up my horse earlier this year because of my health.  I'm so glad you're able to take it up! 

I can't believe the cardiologist recommended belting yourself to a horse.  I can't think of a more dangerous thing to do!

I'm in presyncope all the time (with a little passing out tossed in for good measure), so riding was just not safe for me any longer.  Also, it took so much effort and I felt so unwell doing it, that I hadn't been able to enjoy it for a really long time.  I think I have MCAS and EDS going on with my POTS too.  Time will tell. 

As far as equipment goes, I found dressage saddles to be the easiest on my body.  I was a western rider when I was younger, but pretty much gave up riding in western saddles...far too hard on my hips and knees.  Dressage saddles make you sit more forward and "up," which seemed to help me. I even went as far as to get a gaited horse (supposed to be easier on your joints and body), but honestly didn't notice any difference, compared to "normal" horses.   

I'm interested in hearing how it goes with your horses.  I hope you post a few updates!  

Draven

[Guest ANCY]

Draven, thank you for your reply and I'm sorry to hear you had to give up your horse. It truly is amazing where the wild ride of dysautonomia can take you and I pray some day your health will improve enough for you to ride again. Before getting my pacemaker in April I would have laughed at any one who told me I'd be riding horses before the end of the year, I too was passing out, about 20 times a day. 

I have not tried riding yet, thinking it would be better if I had some core strength before starting riding. Hoping maybe in a month or two if I'm able to work hard and start walking more. There is a therapeutic riding center more local that I'm considering going to for the hippo therapy, plan on looking up some more about them this next week. 

Still enjoying having the horses around, and watching my family ride is nice. ? I got 4 goats last week and they have been quite entertaining as well lol! 

Wishing you all the best!

[Katybug]

I love goats....especially mini goats....in pajamas! Lol!

[Kris4444]

Hi Ancy! It's so nice that you get to live out in the country and have horses on your property! 

I was a professional trainer/instructor for over 25 years. I got sick in 2007/08 and had to stop teaching and training due to my dysautonomia symptoms and autoimmune disease in 2009. I do still own my competition horse and have shown him a little bit over the last couple of years but I've had a tough time with the dysautonomia symptoms. I was having extreme shortness of breath, vertigo and heavy sweating while riding. As Katybug said, it got MUCH worse when I got down and stopped using my leg muscles. I complained to my doctors but no one seemed to be able to help until I was reevaluated by a neurologist for ANS dysfunction. Once diagnosed, he was able to put me on a beta blocker which brought down my high blood pressure and heart rate. The shortness of breath and exercise intolerance really improved but I still deal with issues in the heat and episodes when I get down although they are a bit better. I also have a home nurse come to the house once a week during the summer to give me IV fluids, lactated ringers, I do think they help keep me hydrated so that I can keep riding. I have all the cooling gear you can buy from vests to caps that go under my helmet. I drink Gatorade as well. I am a dressage rider and my saddle is very comfortable for me. I do have EDS but I don't have anything special other than copper knee braces that I wear under my breeches on both knees. With the medications and fluids I've been training pretty hard and I'm still hoping to get to a couple of shows this season. It's tough though and really takes it's toll but it's worth it to me. I've had to give up almost everything, not ready to let my riding go yet.

As for wearing a "seat belt", that would be extremely dangerous! Even the quietest of horses can spook at any given time and you could get hurt. As Katy said, wear a helmet. I thiink Hippo therapy would be fabulous for you! Make sure that you have someone leading the horse as well as a person on the ground that walks with you in case you should get dizzy or pass out. I hope riding brings you joy and happiness! Please let us know how it goes!

[Guest ANCY]

Katy- yes they are super cute nigerian dwarf goats so mamma is even smaller than our labrador. Funny about them wearing pajamas, I am hoping to make the babies some coats to help with the cold lol! Where we are at is about 8,000 ft elevation so we are already having pretty cold nights. They're ok though, we made a nice bed of hay for them as well as hanging a heat lamp and feeding them grain to keep them warm. 

It is kind of comical to watch Milkweed (mamma goat) bleating at her kids, we joke around that she's a perfect example of how not to raise your kids lol!

Kris- thank you for responding  and sharing your story with me.  I'm glad that you, along with a couple others, have been able to give me some advice. I want to go into this with my eyes open and without a lot of surprises. I'm sorry to hear that you also have had to give up so much because of dysautonomia. Do the iv fluids make a significant difference in your symptoms? Mine are a little different, I don't get high bp, rather can go pretty low and before my pacemaker bp would make me pass out a LOT. I am planning on fluid loading  as much as i can via my j tube before attempting riding but I know it's not quite the same as an iv. 

I just purchased an ice vest off of Amazon that does well keeping me cool, just a little on the heavy side, making it difficult to do much except sit while I'm wearing it. I also use the bandana style ice packs which have helped a lot for me with trying to avoid overheating. 

I hope you a able to make it to some of the shows you want to go to, that would be a Major disappointment to not be able to make it. I hope you and your medical team are able to find ways to help return some normalcy back to your llife. It sure can take a while to find what works though...

As for the hippo therapy they use side walkers as well as someone to lead the horse during their sessions, aND of course the instructor. I think that the seat belt idea is not going to fly, so I'm working on building up more core strength before riding. (Right now I can't sit in a backless chair for more than 5 minutes at a time.) We are hoping that whatever they have to get me from wheelchair to horse my dad can replicate it so my family can help me ride one of our horses eventually. 

Thanks so much for your input!

[Kris4444]

The IV fluids have definitely helped. I find that I recover more quickly after riding or exercising. Staying hydrated for me is really important. 

Good luck to you! Can't wait to hear about your first ride! The goats sound adorable! 

[Guest ANCY]

Thanks Kris I hope you are able to continue the fluids if they have been so helpful for you. I did try it for a period of time but kept getting blood infections so couldn't maintain iv access. 

I will let yall know how it goes when I get to ride. ☺

[Guest]

Even getting to look at horses in a field is great therapy.

I actually gave my mare away to a friend that has a riding school.  One adult (with riding experience) is leasing her...but she does not leave my friend's farm.  Once a horse goes to this farm, they have a home for life, so I know my Derby will be well loved and looked after.  She'll have the retirement she deserves when she's too old for riding, and will never end up in a slaughterhouse, which was my fear when I realized I couldn't keep her any longer.  

She is only 45 minutes away, and my friend told me I am more than welcome to ride her if my health ever improves enough.  She actually does therapeutic riding at the farm too, so I would be in good hands.  I'm just nowhere near well enough for that yet, but it's a future goal.

[Guest ANCY]

Draven- That's great that you can still visit her, I hope maybe someday you will be able to ride her again. Awesome that she is able to be used in such a capacity, helpful to so many. Sounds like a great horse and I imagine that is because of the love and effort you put into her while you could.

Not much to say in terms of update... I'm on hold with trying to ride until I get my j tube fixed... right now there is to much of a risk if it were to get yanked as its already displaced. I will try and post an update when I can give it a try. Right now I'm working on getting enough strength in my core to sit on a horse. My dad says I should just ride a camel lol! 

[Kris4444]

I fell off a camel! Lol! When I was a kid they brought one to our stable to ride. They insisted I get on while the camel was laying down. When they stood him up I slid down his neck and smacked my chin on the top of his very hard head! It was funny to those there because I was straddling his neck and he was pushing back against me, I'd like to think to keep me from falling off completely! Lol.  So be careful on a camel!!

[Guest ANCY]

Lol! That is kind of funny, I can only imagine seeing it, lol! They had one up at our church last year for the kids to ride but they had a platform so the camel didn't have to get up and down. It was neat watching the kids ride, at the time it would have not been safe for me because of how often I was passing out. Maybe someday!

Hoping they will be able to successfully replace my tube this week and then start pursuing hippotherapy. My grandparents are coming out and want to see me ride, among other things. I'm like a totally different person then the last time they saw me, I could hardly get out of bed. 

[SarahA33]

Not to go too off of topic, but I have a camel story. I think I was 8 and so excited to ride a camel at the fair. Well, the next thing I knew, this camel had latched onto my hair for dear life! Thank goodness he didn't take me back to his pack    I agree Kris, careful on Camels! ahaha  

Katie no doubt you provided some great &useful  general tips about riding. And, Katie - is it you and Ancy that are the goat lovers? I went on a field trip when I was 12 and a goat stepped on my foot and broke my toe. I had a huge bucket of food which I just should've dropped and he could've cared less about me then I'm sure. LOL. If you know me well, It's best I stay indoors! 

Hi, Ancy - are there any braces you can find or have made that will help with the dislocation?  I know that doesn't fix the j tube concern, but hopefully with after the replacement you can try to get "back on the horse" I bet you can't wait to see your grandparents and vice-versa so they''ll see all the progress you've made! Just reading your updates you provide to us here is such a source of inspiration and motivation. You've come a long way, friend.

Draven - I'm sorry that you have challenges now that prevent you from riding. I know in another post you had mentioned an a huge wait for appointment with a POTS dr. in Canada. I'm not sure if you are able to travel, or even do a Skype Call, but Dr. Svetlana Blietsheyn is located in Buffalo NY (about 20 min from the border). http://dinet.org/index.php/about-us/advise 

Kris - So happy for you that you are able to both ride and exercise! It was a difficult time for you when you thought you would have to give that portion of your life up. I am thrilled for you that you are still riding and able to recover so well. You definitely provide a lot of encouragement around to all of here  

 

 

 

 

 

 

 

[Guest ANCY]

Thank you Sarah! I'm glad that I can give some encouragment, I know it helped me a lot when I was going through the worst of it to have the support and encouraging updates of others that it can get better. 

You must have some nice tasting hair lol! That happened to me when I was little, except it was a goat who thought my hair was edible lol! I'll just have to get my dad to take me with him when he goes to Turkey, he rode a camel last time he was over there. 

Yes, goat lover here! ?They have been great for me in so many ways, especially since I have found goats milk to be one of the very few things my stomach can tolerate. Goats certainly can get a bit rough when there is food involved lol! Ouch! I imagine the goat you were feeding was a little bigger than mine, the Mamma, who's full grown, only weighs 62 pounds. We're more cautious about our Great Dane, she has a habit of stepping on people's feet and is quite  a bit heavier lol! the  baby goats do like to jump all over us though when we bring treats out. (One of them really likes sitting on my lap) Just watching them is great fun too.

As far as braces go I already have ankle braces and my previous PT was rather insistent that we not brace my other joints because he wanted my muscles to get stroger.  Got the same warning from the Geneticists, he said he hardly ever recomends bracing unless the joint is dislocating several times a day. He said we could revisit it though if after I build up some muscle it's still a problem. 

Yes I am very much looking forward to seeing my grandparents, and the other half of my family that went to get them. My dad and I are trying to keep the animals out of trouble while they're gone but not doing so well lol! Since they left 5 days ago we've had a horse escape (still a mystery how), a separate incident yesterday where the horses knocked down fencing, (thankfully only into the goat pen) a chicken almost pecked to death, great dane almost stomped on by a horse, and our little dog had a bad reaction from eating a toad. I'm sure we will laugh at it later lol! I don't think they will leave us to manage things again though lol! We thought I would be bored while they were gone sitting around the house by myself all day but these animals are certainly keeping us busy lol!

Hope your day is going well, and no one tries to eat your hair. ?

[SarahA33]

Oh, my goodness! So much for a quiet few days to yourself! haha! You have a great dane? I have one, also, and I do my best to keep him out of trouble, too, but as you can see by this look on his face he's probably plotting something!

 

 

 

 

 

[Kris4444]

Thanks Sarah. Still having a lot of issues and have been hospitalized twice in 30 days due to my gastroparesis. No horse shows again this year but yes, I'm blessed to be able to ride when I can, I know many can't even get out of bed. 

While hospitalized my GI doctor's PA came to see me to talk about possibly getting a feeding tube. My main concern was can I still ride with one? I mentioned to her that is asked the doctor about it via email at least 3 times but he never answered me. She looked dumbfounded at first and said he probably didn't answer me because he's more concerned about my pain and the fact that I lost 20 pounds in a month. I told her that I haven't had fusion with cages in my back because it would make riding difficult if not impossible. She clearly doesn't understand my passion and mental NEEDS to ride. She DID finally tell me that I can in fact ride with a feeding tube and also now wants me to see their GI Psychologist!! Hahaha! 

I love goats too and grew up with them at the various farms where I rode. We are thinking of moving to Kentucky when our youngest graduates in 3 years. I'll definitely have goats! 

[Guest ANCY]

Oh yes he's Definetly up to something lol! When ours isn't out in the pasture (she thinks she's a horse) she's a real couch potato.

Kriss- so sorry to hear of your gastroparesis struggles... If I could be of any help or answer any questions about life with a feeding tube please feel free to ask away. I've had one off and on (more on them off) for the last 4 years because of gastroparesis. As well as bouts with TPN. 

I included a pic of my baby goats just for fun. ?

[Kris4444]

Thanks Ancy! Your pictures are so cute! I don't know what I'd do without my animals! 

Thanks for offering guidance on the feeding tube. When I get to that point I will definitely have questions for you. 

[Katybug]

Mini goats...I'm a fan of mini goats. I've had enough run ins with full sized to goats to be respectful if their power. Mini goats ate just as bad as full sized goats but can do less damage. So bad, they're cute!! Lol!!

I did manage to coach an old student at a horse show yesterday by bumping some meds up for the day (not something I could do regularly). It was a good show and fun.....and then my migraine pain spiked badly half way home and today I'm a shaky mess. It was nice while it lasted.

Ancy - I swear the animals are the best practical jokers in the land. They knew just when (and how much) havoc to wreak while it's just you and your Dad. Have fun! 

Kris - Glad your riding regularly but sorry about the GI stuff. And for the record.....GI psychology is an actual specialty??? I didn't know my GI tract had a brain. Lol!! Hang in there!

Draven - I'm sorry you had to get let your horse go. That's really tough.  It's good to know where she is though. 

[Kris4444]

We had an evil goat named Spike who liked to ram little children (and adults) with his horns. We had to lock him in a stall when I would teach. We did eventually become friends but only after I made him think I was crazier than he was. Lol.

Katie I am so happy for you that you got to coach at a show! I know it sucks today, but I bet it was worth it! And Yes! GI psychology is a real thing! If you Google it there is a lot of information. Here is a link to the one that I was referred to at Northwestern in Chicago http://digestivehealth.nm.org/gi-health-psychology.html They offer a variety of help from learning to cope with gastroparesis to getting you together with nutritionists and helping you understand life with a feeding tube. My doctor said that 50% of his GP patients see the GI psychologist. They are even located in the same office. It is very difficult learning how to live with this disease, I think it's what I suffer from the most. I haven't decided if this is something that I want to pursue as it's a long drive for me, but I am considering it.