Kris4444

So I bought an expensive ice vest to wear while I ride and it didn't help. Not even a little. I know there are many of you that can't even get out of bed so me whining about not being able to ride my horse seems trivial and rude but it's my passion and truly what I love more than life itself. I wrote a letter to my doctor at Mayo. I have Hyper Pots and I'm wanting to try going back on the clonidine again. He hasn't responded. I'm sorry if this post really isn't going anywhere. I'm just so sad and ready to give up. I miss who I used to be. It's like a death...yet I'm still here.

I agree!

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.

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.

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

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.

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...

I can sweat, in fact I sweat profusely.

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

I'm sorry to hear you aren't well. Hang in there!

Hi Katy! How are you? How are your pets? Should I not be obsessing over this then? I'm just worried I'll drop dead at a horse show or something lol! Yeah, not funny.

So I just worked out on the elliptical. 3.5 miles in 30 minutes. Goosebumps started at around 15 minutes. When I finished exercising I took my temperature. It was 97 degrees and continued to drop to 95.1. I am drinking Gatorade now. I'm sweating profusely, very flushed and still covered in goosebumps. I did have a brief moment of dizziness coming up the stairs when I was finished on the elliptical. I was not expecting a low temp. What does this mean? Still waiting to hear from the doctor.

Thanks LillyBee. Everything I've read says heat exhaustion. I'm guessing it's not good to be having that happen 3-5 days power week!

Hi Sarah! Thanks for responding. I'm not currently under treatment for these issues as my GI issues have gotten very bad. I've never tried IV fluids or taken my temp. I did send an email to my rheumatologist. I'm not sure he can help but I figured I should ask since everything I'm reading makes these symptoms sound dangerous.

I was wondering if any of you experience this? I ride my horse 3-5 days per week and when it is warm out I flush, get goosebumps everywhere and sweat profusely all the way through my clothes. When I am done riding or on my elliptical, I will get extremely chilled, even after taking a warm shower, it's nearly impossible for me to get warm again, then when I do warm up, I overheat. I have been to Mayo and they gave me a diagnosis of a hyperadrenergic state, I guess a form of hyper Pots? I've been to an allergist with no help even though she put me on antihistamines and tried tons of other things. Most of the time these symptoms are just annoying but everything I am reading says that it could be dangerous and a sign of heat exhaustion. I do sometimes get a wicked headache after one of these episodes. I have started drinking Gatorade again in the hopes that it will help and I'm supplementing with Magnesium. Any responses would be greatly appreciated. Thank you!

Thanks Sue. Humira has changed my life. It hasn't helped with my GI issues, still have a paralyzed stomach and colon. I wonder if we had started it sooner and jumped on the inflammation early on if it could have helped. My issues are inflammatory in nature but I can pinpoint the moment my life changed and it was when I got EBV.

I am convinced that all of my problems started with EBV and continue because my titers are ridiculously high to this day. I have tried everything. Was on massive amounts of Valtrex. Nothing touched the titers. I had an immunologist suggest that I get IVIG therapy but my other titers IgG, IgM, were pretty normal so insurance wouldn't cover it. I finally just stopped obsessing over it because that is exactly what I was doing. I decided to get off of as many medications as possible. I'm feeling better than ever but I give the credit to my rheumatologist for not giving up on me and finally finding a medication to get my autoimmune condition under control which has helped everything else. I believe my autoimmune condition was created from my EBV. I was a fairly normal person before that horrible infection and I've never been healthy again since. I still believe my high titers will eventually end up causing major health issues but no one knows what to do about it and it isn't healthy for me to keep obsessing so I treat my body the best I can. I work out daily, eat right, no red meat...blah.

I have ridiculously high EBV titers and have for 7 years. I took Valtrex to no avail. This is interesting news. For me however, I can't take high doses of vitamin C without getting hives. I have no idea why. For those of you who have bowel problems (constipation) I take a medication that has changed my life. It's called Linzess. I have severe colonic inertia and gastroparesis. Without Linzess I was having to do a bowel prep every weekend. You may want to check with your doctors to see if this medicine can work for you.

DeGenesis, I have been to Johns Hopkins as well as Mayo clinic. My rhuematologist believes that I have a systemic inflammatory disease which is autoimmune in nature and unique onto me. Lucky girl huh? He believes it's in the rheumatism family and the Humira is to treat RA but my inflammation issues aren't only in my joints, they are also in various organs. UCTD is my current diagnosis I guess but my doctor says we will never pin down what this actually is. The fact that we can now TREAT it and get relief is a blessing. I no longer care what we call it, just as long as I get relief!

Hi Loulou, We have fans but not in the arena where I need them most.

Hi, Yes they said I had a hyperadrenergic state but not POTS. Yes the Rheumy prescribes the Humira. I will ask him about injections of B-12 and magnesium. I had just sent him an email yesterday regarding taking Humira once a week instead of once every two because of the fatigue that hits so hard the second week. Sad thing is, that's how I felt all the time. To be able to have a whole week where I feel like myself is just amazing. My horse is a German Oldenburg. His father is Sandro Hit. If you google him you will see he's a big deal. I bought this horse as a 2 year old, broke and trained him myself. I was a professional trainer at the time and I planned on marketing my business by showing my horse. Unfortunately we only had one show season when I got hit with this lovely disease(s). It hit hard and I was very disabled for a very long time. I've been away from teaching and training for 6 years now! It's time to come back! I am fortunate to work and ride. I didn't do either for a long time. I went through a divorce through all of this too so I had no choice but to work. It's been tough. I will look into everything you mentioned! Thanks for all the support and encouragement! Sure hope you get some good answers and start feeling better soon! -Kris I have ridden a Paso Fino but have never been to a show. They are amazingly comfortable! We had one that boarded with us at a barn that I worked at and it was neat to watch him go, their little feet seem to be going 100 mph!

Hi Kitt, I'm sorry you can't ride. I feel terrible just talking about it when there are people struggling so much more than I am but I'm excited at my progress. I never thought I would ever show again but I have my first show in 6 years on the 28th of this month! It's been unseasonably cool around here lately but of course that day we will have heat indexes into the 100's I'm sure. Never fails!! Why am I on the Humira...well, I have a lot of autoimmune issues. Originally I was diagnosed with Scleroderma but I saw the top specialist at Johns Hopkins and he said that is NOT what I have. I also have symptoms of Lupus and Sjogren's. That still is NOT why I'm on the Humira. For years I have struggled with inflammation. I have DDD and have had back surgery, my bladder has chronic inflammation, kidneys, thyroid, GI system...my doctor feels that I have a systemic inflammatory disease of unknown name but autoimmune in nature. He did an ultrasound of my hand and found the beginning of RA and started me on the Humira. I could not get over how different my hands looked and felt once I started taking it. I had so much swelling, who knew! And not just my hands, ALL OVER! My doctor has always felt that this was a rheumatological disease and RA can cause a lot of the problems I was having. I'm not a classic RA case though, I'm different, but the Humira is working. For the past few years I had continued to gain weight despite diet, exercise and even meeting with a nutritionist and logging every morsel I put in my mouth. I could not lose. My doctor felt this too had to do with this inflammatory disease of mine. He thought that trying the Humira might prove to be beneficial on MANY levels and he was right! Since starting it I have lost 30 pounds. I do feel it has helped my flushing too although I can't tell you why. I still flush occasionally but not like I had. Alcohol used to cause it every time and now I can have a glass of wine and nothing happens. The clonidine did a lot of bad things to me. It made me very tired. I used to take it before work in the morning and was finding myself nearly falling asleep at the wheel! I believe it was part of my weight gain too. There were other side effects that I can't remember off the top of my head but getting off of it was a huge relief. Keep in mind that I was on a TON of medication and I took myself off of many of them with my doctor's approval before getting on the Humira. It is possible that some of the medications were actually contributing to my flushing although I flushed before starting any of them. All I know is that I have chronic inflammation that doesn't always show up on blood work and that the Humira made that much better and I am feeling better than I have in years because of this drug. I still overheat and flush from exercise. If I overdo it then the vertigo kicks in but even that seems to subside more quickly now. How would I get injections of magnesium? Someone else mentioned injections of b-12 as well. I do stay super hydrated but I don't do the salt loading. I wonder if that would help? I get super swollen from too much salt and so I'm hesitant to try that. I try to remember to drink gatorade on the days I ride. I do have the neck wrap, it's actually made for showing so it's pretty cool. We have an indoor arena where I keep my horse and it definitely helps on the super hot days to stay out of the sun. No a/c though. I AM doing this! It's already in the works and paid for so no excuses for me! I am super excited and a little scared too. I try to keep telling myself it's only around 6 minutes that I have to get through in the show ring, I can do this! I've been trailering my horse in for lessons with my trainer who works me really hard and I've been tolerating it. I feel better than I have in years. I have no idea why the Humira has helped on so many levels but I'm so thankful that it has. The only thing that I can say negatively is that it wears off after about a week. (I do an injection every other week) so the second week my fatigue kicks in and I can't wait for Saturday to roll around so I can get my injection. I hope Mayo gets you some answers. It's been a long haul and I'd love to hear something positive for you. If they are considering Humira, you will have to have a reason that your insurance will approve of, like my RA diagnosis. The shots are super expensive and without insurance I could not pay for them. Hang in there and keep me posted! -Kris

Hi Loulou, Yes the magnesium is supposed to help. I'm taking it twice a day. It's been relatively cool here lately so I don't know if it's helping but I've been doing fine. Robin I do take breaks in between while riding and definitely keep things shorter on hotter days. I will check out the sleeve. Thanks for the link!

It made a difference wearing the vest on Sunday. Last night was cool so I went without and did ok. I have had several people tell me to use Magnesium as a supplement to help so I have started taking that as well as drinking Gatorade before I ride. I wish there was more that I can do. It's amazing how this can really disrupt your life...

My issue is related more to exercise. My body goes to extremes. I overheat and then upon cooling I get too cold, My goal is to compete my horse this summer. I'm a dressage rider and our workouts are very intense. The temperature outside plays a huge role. If it's hot I over heat but to the extreme. Dizziness, muscle weakness, vertigo, can't make saliva. Then terrible headache. This all happens suddenly.