Please Help! Need to reach goal!! Dr. giving up!

[Kris4444]

I need help and ideas. I have hyper POTS and I had another major episode after riding my horse with my trainer on Saturday. It was warm out (80 degrees). I did fine while I was riding, some slight dizziness but took breaks and did ok while on the horse.

My problems always happen WHEN I GET DOWN AND STOP MOVING.

My symptoms start when I walk my horse to his stall and then need to take off all of his tack. It's like a switch is flipped. I stop moving and I become very warm, flushed and need to take off my helmet, boots and gloves. Then I start getting muscle weakness where it feels like I can't remain standing and have to sit or bend over (still holding the horse), I'm POURING sweat, very flushed, covered in goosebumps and dizzy. My heart rate is dropping during these episodes, not going up. This time I was also having a major muscle spasm on the right side of my face, under my eye. I noticed that my Sp02 levels were 86% that evening and yesterday too. Not sure if that is accurate though as it's an app on my phone. Going to buy a real monitor today.

I have ONE GOAL right now and I'm focusing 100% on this and have been for a long time. I'm 4 scores (2 horse shows) away from getting my bronze medal through the United States Dressage Federation. I used to be a pro trainer, now I can't even hold down a desk job due to my multiple health issues. I REFUSE TO GIVE UP!!

I emailed my neuro ANS doctor and he told me he thinks I need to stop riding in the heat! He knows my goals! Why is he giving up on me?

I think we are focusing on the wrong things. I've attached a photo of my HR during my ride but keep in mind that beta blockers are keeping my symptoms under control while I ride, even with the high HR. It's WHEN I GET DOWN that I'm having problems.

I have cooling vests, scarves, hats. They don't seem to make the difference.

My cardiologist is the only one who is not giving up on me. I have just started seeing a new immunologist too. He thinks mast cell may play a part in all of this.

Does anyone have similar issues with exercise? Any ideas what might be happening when I'm done? This happens sometimes even after taking a walk, when I slow down, same symptoms...please help!

[angelloz]

I admire you for wanting to keep getting back on the horse, pardon the pun. Many suffer from heat triggers and I have had the problem with being busy then stopping and feeling terrible. I suppose you could try another doctor. If this was an easy fix we would all be better but that doesn't seem to be the case with autonomic issues. Plus, day to day symptoms and issues can vary greatly. I would say to try to keep working with your doctors.

[Kris4444]

Thank you. It's hard to keep working with doctors who are ready to give up on me or who are asking me to give up on myself. This isn't an option. There aren't any other ANS doctors in my area and the one I am seeing is highly regarded. He just isn't very helpful for someone who wants to remain extremely physically active.

I'm beyond frustrated!!

[Roxy]

What type of cooling vest and stuff are you using? How much cooler is it keeping your body? Any compression gear on? Sorry this is happening to you, hope someone comes up with some answers for you.

 

[BuffRockChick]

@Kris4444 I have the solution!   

Don't get off the horse!  Obviously the horse you've been riding needs a rest, so swap out onto a fresh mount and keep riding.  You could learn to sleep on horseback, right?  ?

I couldn't resist the joke, but I can relate to misery after stopping activity.  I love to run, but I just can't.  When I stop running I have terrible symptoms that remind me of yours but they're not my POTS symptoms, they're more like asthma.  I understand the frustration and I admire you for not giving up on your goal!

Is your horse training on behaviors or physical strength or endurance training?  Perhaps there's a way to get training done that's easier on you?  Delegate endurance type training for your horse?  Maybe work in shorter sessions?  Much shorter?  Take a break every 5 minutes during training? Take a break after each behavior you work on? Extend your cool down time still on horseback?  Delegate someone else cooling down your horse and you work on bringing your heart rate down slowly and safely?  I treat my symptoms like a science experiment and have found some useful patterns that surprised me!  Maybe there's something you can change where you can get the work of training done without exacerbating symptoms.

I wish I could offer REAL help, but I hoping one of these questions might help you in creative problem solving how to get through training without feeling so ill afterwards.  ((((hugs))))

[Kris4444]

Roxy,

I have a vest that you get wet and one that actually holds ice. I also have a cooling cap that I wear under my helmet. They don't seem to keep me much cooler.

Compression gear just adds to the heat problem.

Buffrockchick,

Lol. I said the same thing! Don't get down! I do usually have my daughter with me to untack. She wasn't there this time. I do take breaks more often when working on my own, this was a lesson with my trainer. Horse shows will require me to warm up before each class (at least 2 classes a day so riding 4 times a day for 2 days) wear full seat breeches and a dressage coat. It's always hot out. 

I WIIL get this done but need my doctors to help me. Very frustrating!

[Guest KiminOrlando]

Hi Kris.

I don't have a real answer for you, but I have a theory - guess, really - that has already been touched on: compression stockings. Based on where the arteries are in the legs, I wonder if the pressure of your legs pressed up against the horse acts as like a gauge that restricts the blood flow and keeps it from pooling in your legs. It makes it stay in your torso, until you get off, and then the blood rushes to your feet, which makes you react. I know compression stockings would be hotter but I wonder if you could bind your legs with ace bandages or something to mimic that pressure so that it is constant?

So, that is my one and only GUESS. Other than that, I've got NOTHING. Gosh this disease is STRANGE!

Good luck and let us know if you figure it out for real.

Kim

[Kris4444]

Kim - I definitely agree that the legs are working on keeping the blood flowing and that the blood probably is pooling when I get down.

I tried wearing spanks but had to take them off before even getting on due to overheating. Ugh!!

I guess it's worth a try with the compression stockings but I think maybe we need to look further into my high catecholamines. I have high norepinephrine but I also have high dopamine. No one has addressed the dopamine levels.

[Roxy]

I was asking about the cooling equipment because I used the ones with ice packs and the dunk in water ones, they never kept me cool enough. If you are like me insurance does not cover these items, in saying that have you looked at coolshirt system? They have vests, t-shirts, and pants that run cold water through micro tubes. They are pricey but I have found them to be great, I live in Nevada and the summer temps get over 100. I am very heat intolerant this has been a life saver for me, I don't get money or anything from them by recommending them to people just so everyone knows ahead of time. It's just another possible item to try.

[Kris4444]

Roxy,

I haven't heard of these. Will definitely look into them. Thank you!

[Kris4444]

My daughter can help with the horse but not all of the time.

My heart rate drops down to a "normal" level once I'm down for a while but is extremely high, as shown in the picture above, while riding.

I think most people in my condition would not ride. Just because I choose to put myself through this because it is my passion, does not mean I'm doing great by any means. The after affects of this ride has kept me unable to do anything since (that was Saturday.) My GI issues have been terrible and I'm exhausted, my Sp02 levels were 86% for 2 days afterward.

This is my passion and I won't give up!

[Kris4444]

I'm using a fitbit which has been accurate with my bp cuff and Sp02 monitor. My cardiologist has also compared it to his equipment and it seems to be accurate.

This past episode my hr was over 190 for over 20 minutes and then dropped down into cardio range for the next 45 minutes. This included walk breaks and time to catch my breath with no lowering of heart rate. I believe I am having surges of NE which keep the heart rate up and when I get down my body crashes.

We are adding clonidine back into the mix to see if it will help with some of the symptoms. We are also working me up for mast cell.

This goal is what gets me out of bed every day, it's what makes me try to exercise and stay as healthy as possible. I believe that without goals (for me) that mentally I would regress and allow this process to take over my life.

Thank you.

 

 

 

 

[BuffRockChick]

@Kris4444, some inspiration for you! This woman has POTS and runs 100-mile ultra marathons!  Sounds like managing her symptoms is still a struggle, but WOW!  Keep fighting for your dreams.  <3  http://killtherun.blogspot.com/p/running-ultramarathonswith-pots.html

[Kris4444]

Thank you!!!!