Hyper Pots-Heat Exhaustion Has Become Scary. What To Do?

[Kris4444]

Hi All,

I mentioned in a prior post that I have been having some issues riding/exercising in the heat. This has continued to get worse and is actually really scaring me.

I live in the midwest and we have fluctuating temperatures. Right now it has been hot and very humid. I've been having very scary episodes after riding that have me wondering if riding is even safe for me right now. Everything gets bad when I stop or slow down (take a walk break) vertigo or dizziness kicks in, flushing and lightheadedness. The worst part is when I FINISH riding and get down All **** breaks lose and I really don't know what to do. The last 2 times I've had to sit down on the floor and wait for my body to calm down.

Others around me are very worried and will comment on my flushed state and my profuse sweating. My mouth gets filled with white looking pasty stuff and my legs don't want to hold me. There is a strange sensation from navel to mid thigh as though there is a disconnect of some sort and I have to get off my feet. My sweating continues long after I'm done riding and then I become very cold (even after showering) and have a hard time getting my body temp to regulate.

I have contacted Mayo again for my GI issues which are getting worse and I've sent a letter to the doctor who did my autonomic nervous system testing. I am hoping that he will agree to at least re-test my norepinephrine levels which were very high when I was there last. I was on an SSRI at the time that I have stopped using since my visit there and I wonder if I'm still blowing out adrenaline when I exercise. My guess is yes.

I know that I am going through full blown heat exhaustion when I have these episodes and it has me wondering if it is even safe to continue riding? I am doing everything right, I am riding either early or late in the day. I wear a cooling vest and cooling cap. I am drinking Gatorade before and after I ride and making sure that I stay well hydrated. I have a cooling towel that I put across my neck upon dismounting and I immediately take off my helmet and riding boots.

Someone mentioned IV fluids. How would I go about getting those ordered and do you have to go somewhere to get that done? Who would order something like that and how would I get them to do so?

I know there are people that are way worse off than me. I have had to quit working due to all of my illnesses and the only "out" I have is riding. I had set a small goal to ride in two horse shows this summer but I don't see that being possible with all of this going on.

When I was diagnosed at Mayo they prescribed clonidine. I took it for a while but was working full time and the drowsiness was making work and driving very difficult so I stopped taking it. I sent a letter to the doctor at Mayo who diagnosed me with my hyperadrenergic state asking him about what is going on and letting him know that I will most likely be coming back to Mayo within the next couple of months for my GI issues and hope to discuss this with him. I don't know if he will be able to see me as I know how busy they are in that department.

If anyone has any insight into the exercise intolerance and why it is only in the hot months, I would really appreciate it. I spent yesterday in tears for hours after my ride. The after affects will follow me for a couple of days and I will have major fatigue and just feel crappy in general. Any advice would be greatly appreciated. Thank you!!

Kris

[sue1234]

I cannot tolerate our southern heat all summer either. I am hyperPOTS, too. The way I see it, heat makes my vessels vasodilate to try and cool the body down. When that happens, my blood volume "sinks" to the extremities even more than it would under normal conditions. Then, being that I am hyperPOTS, that circulating adrenaline load just exacerbates the body being hot. I noticed I quit sweating since I've had POTS, so I cannot cool down. I have tried cooling vests, rags, etc., and nothing works for me.

[Kris4444]

I can sweat, in fact I sweat profusely.

[Katybug]

Kris,

I noticed I flare badly after I get off too. I think because we use our legs so much while riding, it keeps our blood flowing properly. When we get off we suddenly are no longer actively pumping the blood and it allows everything thing to go haywire. I rode for about 15 minutes the other day because it was only 75 and cloudy and someone had a horse tacked up. I was fine while riding (I haven't been on for 2 yrs) but about 3 minutes after I got off it went south and quickly. I have experienced this before and it's one of the reasons I haven't been riding. I wish I knew how to avoid it but I don't have any good advice.

[Kris4444]

Katie,

This makes sense! I'm happy to hear that you got to ride.

For some reason I only have these extreme issues when it's warm out. I've contacted my doctor at Mayo to see if he thinks I should go back on clonidine. I hated being on it but if it keeps me riding...

[Katybug]

Yes. My worst issue was the sudden heat radiating off my body along with profuse sweating and a feeling of not being able to inhale enough air (I'm not asthmatic.) My hearrate was in the 160s but I wasn't dizzy until about 10 minutes into the episode but I wouldn't have minded one bit if the barn manager had turned the hose on me. I had to wipe down with cold towels and lay with a fan on me on the couch in the lounge for about a half hour before I was useful again. It's always been worse for me in summer. I could fight through it when I was riding in winter but I have actually needed to be hosed down while sitting on the wash stall floor on more the one occasion the last summer I rode competitively.

[SarahA33]

Hi Kris, sorry your having a rough go of it.. I'm always rooting for you!

I did bring up the possibility of IV fluids in one of your earlier posts, I think it would help you immensely. I'm pretty sure your GP would have to write a script for a liter (or how many he or she chooses) but not write any maximum visits on it, so that you could use it when you needed it,. You'd have to find an infusion center of some sort, and they usually take care of the insurance paperwork and authorizations. Your GP might be able to suggest some infusion centers.

I hope you hear back from Mayo soon!

Sarah

[SarahA33]

Kris, just had another thought.. do you wear cooling vests when you ride? I know they also make hats too so you could possible put that under your riding cap?

[Kris4444]

Katie, you are describing EXACTLY what I go through, even the part about not being able to get enough air! I had to quit the last lesson I took with my friend/trainer for exactly that reason, I felt like I couldn't breathe! Afterward I feel weak and shaky and can't stop sweating but my body is cold to the touch and I'm covered in goosebumps. It doesn't give me much hope hearing that you quit riding altogether but I understand why, I just can't wrap my head around doing it though because I think I would die without it, mentally at least. It's the one thing that keeps me going.

Sarah, thank you for the info. I am assuming I would go for my fluids the day that I would be riding. I do wear a cooling vest and have a cooling cap that goes under my helmet. I also have one of those "chilly towels" that I wrap around my neck upon dismounting. I take my boots and helmet off right away too but it doesn't matter. It feels like an emergency situation pretty much every time I ride in the heat. All of my alarm bells and whistles are going off and I think that is what I'm worried about the most. My body is telling me it's in a bad state, yet I keep doing this to myself. You have to wonder if it's affecting the heart or brain or any of the other organs when this is happening. I hope Mayo gets back to me soon. I'm waiting on a call from the GI motility clinic but I sent a letter (an actual letter because he told me this is the only way he will communicate with me) to the neurologist I saw who did the autonomic testing. I told him what was going on and asked about going back on clonidine. Maybe now that I'm not working anymore it won't matter if I get so tired. I also asked if it might be possible to meet with him briefly when I go back (I'm assuming I'm going back) so that maybe we can re-test my norepinephrine levels that were so high when I was there last time. I really want them to test my EBV levels too because I KNOW they are still crazy high and I KNOW they are behind ALL of what is going on with me. UGH!!

Thanks for the replies! I will see if I can get someone to order fluids. Just don't know who to ask at this point.

[Katybug]

Kris,

Even your primary can order the fluids is he/she is willing.

I think not riding is a little easier for me because my mare is old and has enough health problems that she has to stay in retirement. I still go up there a couple times a week to groom and spoil her. And, because I'm an experienced rider, my barn manager doesn't mind and actually likes if I hop on a tacked up lesson horse at the end of someone's lesson. I get a 15 minute ride for my own sanity and a lesson horse gets a 15 minute tune up. Win-win for all of us. I actually struggle to get through grooming and tacking up. So by the time I would get on I'm already a mess is I try to do a regular riding program. Interestingly, my horse, who I've had for 17 years, and I have developed a more intimate relationship in some ways since I've had to stop riding. I now spend my hour with her doing things she likes instead of what's on my agenda.

The only thing I can think of that I haven't tried but occurred to me the other day as I was laying in the lounge, is to maybe start walking right away after riding to keep a little bit of the blood pumping so the body has time to adjust from having super pumped blood from the riding muscles. It seems counterintuitive but it's kind of the same concept as walking your horse out after exercise.... not going from heavy work to standing virtually still. Maybe walk the horse out while your on the ground so you both walk out at the same time. Maybe it would be a gentler transition for your body. I have no idea if it will help but it's worth a shot. If you think about it, untacking and grooming isn't that much movement in our legs compared to how much those muscles are working while riding.

I also find an ice pack or frozen water bottle (the cooling towel isn't cold enough for me) at the base of my head around my neck in the back helps me recover the fastest. I assume that's because it is cooling the blood getting to my brain (although that's an assumption not based on any science or doctor.)

And, my final thought is, the goosebumps are likely an adrenergic symptom. I get them too when I first start sweating. My pots neuro said that it's a part of the whole adrenergic process even though people associate goosebumps with cold, it's actually part of the body's stress response.

I hope you find the right combination to keep you in the saddle.

Katie

[Kris4444]

That's great how it works out for you at your barn. I'm sure they appreciate your experience.

I did leave a message for my primary doctor today. I think the lady who answered the phone thought I was rude because I didn't want to go into details, just that I want him to order IV fluids for me and that I need to talk to him about why. He's never said no to other requests so he will probably allow it.

I have tried walking my horse out from the ground the last couple of times but my legs didn't want to hold me and I got this weird disconnected feeling from my navel to my mid thigh. It was really weird. I had to sit down. It took about 15 to 20 minutes of sitting on the concrete aisle with my cooling towel for things to calm down. This last time I made myself keep standing. The thought of putting all my tack away and sweeping the aisle was enough to make me cry and I did cry quite a bit when I got home. I just don't know what to do with this body.

Since I have stopped working I am putting on weight again too which I promised myself I would be riding and working out more but I have some personal stuff going on here at home that I'll PM you about that makes that pretty hard during the day. I have no alone time and I don't like working out with others, riding yes, working out, no. Ugh.

I'll let you know what my primary says. Thanks for all the feedback. It feels great to know that I'm not nuts and not imagining what I'm going through. I hate that you have been through it too but it validates what I'm saying and mentally it's a help, so thank you.

-Kris

[sue1234]

Kris, did Mayo find your high EBV levels? I have them also, but they were found by a more 'alternative' doctor(even though she is an MD). I wasn't sure what mainstream medicine thinks of high EBV levels that are the more chronic elevated levels(not the new, active ones).

[Kris4444]

No, Mayo didn't find them. I went to an allergist. She took them very seriously. She put me on Valtrex for months but it barely moved the numbers. I haven't had my titers checked in a while but I bet they are still really high.

[sue1234]

I began taking an antiviral also (can't remember the name), and I took mine for about 3 months. I didn't notice any difference, so I quit. I was really hoping to notice any kind of improvement, but I didn't. It's possible I didn't give it long enough.

[Kris4444]

My doctor was an immunologist not allergist, sorry.

I took the Valtrex for many months, long enough to see if it works. No luck. My doctor wanted me to try ivig therapy but my insurance wouldn't cover it because the rest of my blood work was close to normal.

As for traditional medicine taking high EBV titers seriously, they don't. I've nearly SCREAMED for doctors to hear me say that EBV is the problem but they don't listen. I have no idea if having high titers for so many years is dangerous or not. What I DO know is that ALL of my problems started with the EBV diagnosis and my health has continued to deteriorate ever since.

[sue1234]

I know that high IgG on any of the viruses means you had it at some point, so those they disregard. But, I don't think they understand the "reactivated" part of EBV, and I'm sure it can be causing issues.

[Kris4444]

I agree!