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Everything posted by Kris4444

  1. I had a PET scan looking for a pheo but it was negative. How sad that I was going hoping they would find one. I too have high levels of norepinephrine and dopamine. The beta blocker nadolol has helped a lot with my heart rate and high bp.
  2. Thanks Ancy. I do have a good support system. Than you!
  3. Clonidine made me very drowsy and I was having problems staying awake at work. I don't work anymore so if I had to, I might consider trying it again but in January I started on a beta blocker (nadolol) and it has really worked wonders for me, brought heart rate and bp down and gave me better tolerance to exercise/ride.
  4. I think because the gut/brain connection is so strong that they felt a need to have specialty. They are still arguing over who gets credit for my GP, the neuro (dsysautonomia, damage to the vagus nerve) or the GI doc who specializes in scleroderma (connective tissue issue). I don't care either way as long as we can manage it and we aren't doing a great job of it right now. I'm considering seeing the GI shrink but that's a topic for another discussion. Don't want to hijack the thread!
  5. 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.
  6. 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.
  7. 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!
  8. 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!!
  9. 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!
  10. 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!
  11. I do have cooling vests. I think I'll do ok. I just never put two and two together I guess. I didn't realize how the sun and heat were affecting my hr and bp. Now that I'm aware I need to pay closer attention to my body so that I don't end up having an epidode that can set me back for days. No time for that on vacation!
  12. I went to Mayo in 2011 for ANS testing. All tests were normal with the exception of high norepinephrine and dopamine. In 2015 I went to a new, local autonomic nervous system testing center and was seen by the neurologist there. My tilt table, valsalva and other tests were all abnormal and I still high very high levels of NE and dopamine. I was relieved and was finally able to get help for the symptoms that had been plaguing me for years! I'm still struggling to some extent and I don't have all of my questions answered. This doctor was supposed to send my blood to NIH for further testing but never followed up even though I stayed on them for a while. I get IV fluids at home now and a beta blocker has really helped. I hope you get some answers. Don't give up until you do!
  13. Kaitlyn, thank you. I hope that we can have a great time in Florida. It seems like I have had issues in the sun for a very long time but with being undiagnosed I had no idea how it was actually affecting me. Even after being diagnosed you would think it would dawn on me but having such relief with the beta blocker made me not think about it as much until the other day. Thanks for the tips! I hope the Florida beaches are ready for us! Katybug, I'm not on that much anymore but probably on more than most, I take the nadolol (bb) and it has really helped with the high heart rate and bp but not consistently which is weird. While I was in the hospital my bp fluctuated from being high to normal. My heart rate was in the 40's, even dipping down to 39 at one point! It was from all of the fluids, I was swelling up like a balloon and they ended up having to stop the fluids all together. I don't think my heart was able to keep up and it was struggling with all the fluids. At home my bp fluctuates too but most of the time it's in the norm unless I'm in pain. Since my Botox injection the pain has been much better but I did have a nasty case of phlebitis from my IV infiltrating in the hospital. It became infected on it's taken 2 rounds of antibiotics to get rid of it (hopefully, still on the 2nd dose).My blood sugar has suddenly gotten better as well and was actually LOW in the hospital and they had to put me on a dextrose drip. Since being home I've been able to get off the metformin and my blood sugar has been perfect. Down 19 pounds too. The fluids once a week during the summer has helped me to keep riding. We've switched to lactated ringers as I was swelling from the normal saline. My home nurse is a worry wart, keeps worrying when my bp goes high when we first start fluids. I agree that my doctor needs to give me more information regarding my symptoms when in the sun so I better understand. His nurses keeps answering his emails. Their email service was down today so I'm hoping he will respond to me tomorrow. I hope you are doing well. Haven't touched base in a while.
  14. Since starting a beta blocker I've been having a much better time with riding and exercise. I have heat and cold intolerance and for the summer I have a home nurse who administers IV fluids to help keep me riding in the heat. This summer has been much better than my last few thanks to the beta blocker and hydration. In July my gastroparesis put me in the hospital for 6 days. Since then I've dropped about 19 pounds and I thought I'd lay out in the sun and get a tan. DUH!! It happened to be the same day that my home nurse comes. I was outside for a while, took a cool shower but then the body temp stuff started and I could not regulate it. I would sweat profusely and then become cold and it would start all over again. When my nurse came hours later, my bp was 157/102 and that is on a beta blocker, heart rate was 95, I was flushed and sweating uncontrollably. I've had this happen before but I never thought to check my bp and hr. Again, DUH!! In January I am going on vacation to Florida. I really want to go to the beaches with my daughter and enjoy the outdoors. I've told my doctor what happened the other day and their suggestions was to stay out of the sun and stay hydrated but what if you CHOOSE to be in the sun? What can you do to combat the symptoms and are the symptoms dangerous? My home nurse was very concerned, even saying she was afraid I was going to have a stroke. I didn't feel terrible, just sweaty and a bit tired. I would hate to have a major episode while on vacation, away from home with my daughter. I'd love some feedback. Thank you!
  15. Hi Sean, I see Dr. Barboi as well. I too take a beta blocker, Nadolol. It has helped me tremendously. It has lowered my heart rate and brought my blood pressure down making it possible for me to keep riding. Although I still struggle, it means everything to keep going. I also infuse lactated ringers once a week at home with a home nurse. I went to Mayo in 2013 and passed all of the ANS testing with the exception of very high norepinephrine and dopamine. I started seeing Dr. Barboi in 2015 and he retested me and I had a positive tilt table and still had very high levels of NE and dopamine. I hope you get help with your symptoms.
  16. Ancy, Thank you for your reply! I am still really struggling and have been putting off going to the ER because my daughter is having a small procedure today and I know if they admit me I'll be there for a minimum of 3 days. My husband is going to take the day off tomorrow and we are going to go to the ER. The left sided pain has gotten really intense and the strange thing is that the area between my ribs is very, very sore. My only guess is that because of my bloating, the area between my ribs is stretching. At the same time though anything I put into my stomach makes everything worse. I do struggle with constipation but I have found a regimen that works really well, Linzess and Miralax. I do worry about an ileus but I have been able to go to the bathroom. I've been dealing with this for years now. Botox injections were very helpful for me but my insurance will not cover them. I am hoping that they will not turn me away when I go to the ER tomorrow. I think what I need right now is no food or liquid for a few days as well as fluids and pain management.
  17. I have a complicated medical history, MCTD, dysautonomia (hyper pots), EDS, global GI dysmotility among other issues. Each specialist says that the disorder they are treating is what is probably causing my gastroparesis. Currently I am going through a terrible flare with my GP and happened to have a bad episode of pots last night. I reached out to my neurologist to see if he thinks the two are related and he does believe that the autonomic dysfunction is causing the GP. How many of you believe that your GP is caused by your autonomic nervous system problem and what are you doing to effectively treat it? I tried domperidone but had to stop due to prolonged QT waves. I took reglan for years but was having side effects so started iberogast in January. Up until the last 2 months I've been managing things but as of 2 months ago I've had to pull all meat from my diet. I was doing ok on fish and peanut butter but still having a lot of pain and bloating. My doctor has me on xifaxin and I'm almost done with it but I think it's caused more stomach pain. I get really bad pain on my left side that always lands me in the hospital. I have gone a year and a half without it but now have been battling it for almost a full week and it's wearing me down. When it gets like this the only option is to go to the hospital where they will admit me and take away food and water and help with pain management. I have had an ileus before so they take it pretty seriously even though they've never been able to pinpoint what is causing the pain. We also know that the antrum portion of my stomach doesn't work, that is the portion that grinds your food. I'd love to hear from others whose GP is related to their dysautonomia and how they are treating it. Thanks!
  18. Yeah, I went there first. Had the shoer out but that wasn't the problem. Thanks for the good thoughts!
  19. Thanks Katie. He's got something going on with his left front, down low, fetlock or pastern. Also probably needs his right hind stifle injected. I have no idea how we ended up with the vet saying he's feverish but he's not. I'll have to wait to sort things out until Monday when the vet returns. I'm hoping the lameness is just a strain or sprain. He's been making tremendous progress, we both have. I hope we can continue. Thanks for asking about him. Hope you are well.
  20. Thanks. His name is Solstice but we call him Soulie. Vet came out today, was supposed to do a lameness evaluation and instead told me my horse felt warm, took his temp and said he had a fever. I'm pretty sure that he had been outside running like a wild man shortly before I brought him in and tried to tell the vet this but he insisted that he had to have an injection of antibiotics and banamine for the fever and refused to continue the workup for the lameness. The barn manager and I both feel he was running around and is not sick. Really makes me mad as I'm no longer working and don't have the money to pay for them to come out AGAIN on Monday. He is fever free this evening and acting like his normal self so I think it was a bad call by the vet. Better safe than sorry I guess. Who knows, he may be running a fever again come morning but I hope not. I do sit in my recliner when I'm not riding so my legs are elevated. I drink Gatorade between rides. I like your positive outlook. We all have to find a way to deal with what has been handed to us. I'm exhausted today, actually took a nap this afternoon before heading back out to the barn to do the temp check on my boy. I didn't get my fluids today like I normally would because the vet came out. Getting them tomorrow afternoon. Hopefully that will give me the boost I need to start feeling better. Thanks for the positive thoughts!
  21. I'm sorry that your doctor won't order fluids for you. It took me over a year to find a doctor who would allow me to try it. I asked my primary care doc first, then my rheumy and they both said no. It took a neurologist who specializes in POTS to order the fluids. I have thanked him profusely! I am having some problems with edema in my legs now though. Seems to happen on the weekends. This is new. I had to stop taking a diuretic now that I'm getting infusions. It's always something. I wish the way I feel after the infusions lasted for more than a couple days. I'm going to ask my doctor if we can increase to twice a day, but... My horse hurt himself. I have the vet coming Wednesday. Looks like an old injury has raised its ugly head again. I'm hoping it won't keep us from competing this season. We've been working so hard and he's the reason I'm doing the infusions. I'm pretty worried...I still have goals through all of this. It really helps me to not give in to this disease.
  22. Hi Kaitlyn, The fluids are helping me tremendously. It's amazing how terrible I feel when they have worn off (within 2-3 days). I didn't realize how exhausted I've been until I had the chance to have a few days of feeling better. This past Wednesday I had my infusion and rode within a few hours. It was 90 degrees out and I had no vertigo or symptoms! I've also noticed that my cool down time has been greatly reduced, I'm not sweating for 2 hours after riding or exercising but I do still sweat excessively. I am hoping to get them twice a week as I'd like to continue to feel well for a longer period of time and not crash like I do on the weekends. I'm sorry to hear you haven't been feeling well. I can't believe your pressure stays so low after 2 liters! I am no longer having the spike in pressure while infusing and can get a liter in in about an hour and a half now which is great. 4 hours was much too long. I have no idea why that changed but I'm glad it did because my home nurse was really getting worried that I was going to have a stroke even though I wasn't having any symptoms. She has settled down now that the bp has straightened out. It's been a month already since starting infusions! They've made such a big difference for me! Thanks for asking! -Kris
  23. Thanks Katie. Not sure what to make of it. It turned out to only be around 82 degrees out with a storm rolling in. It was overcast but humid with a breeze. I did fine while riding, was a bit light headed for a short time when I got down. I seemed to recover more quickly and my energy level after and even now feels really good. Today probably wasn't the best test day. I'll be curious to see how I do when it's really hot. I took my first lesson with a GP trainer in over 2 years on Mother's Day. It went really well and gave me the itch to show again...we will see.
  24. Today I started IV fluids at home with a nurse for the first time. I am doing this in the hopes that it will relieve some of my symptoms when I ride or exercise in the heat. Since starting the beta blocker my symptoms have gotten much better but I still struggle when I exercise/ride on hot days. I would do anything to be able to continue with my sport. I have lost everything else, I'm not giving up riding too. I was wondering if there are others out there with hyper pots that have a relief of symptoms from IV fluids? It took a long time to get the fluids in me (4 hours) because my bp kept spiking up really high. I do not have a picc line yet, they want to see if this is even going to help me before we do something more invasive like a picc line but I would like to hear from those of you who have one as to how you do with it and if you are able to exercise comfortably with it. It is 86 degrees here today and I'm about to head out to ride. My hope is that the hydration will keep me from getting the vertigo, goosebumps, exhaustion and other symptoms I experience in the heat. I am hoping to compete this season with my horse. Last season I could not compete due to my issues but maybe this year with the help of the beta blocker and fluids I may be able to. Fingers crossed!!
  25. In 2013 when they tested me at Mayo and my NE and dopamine were high, I was taking an SNRI called Pristiq for bowel issues. They said that could be why my levels were high. I stopped taking it immediately but then could not find a way to get retested and Mayo didn't want to retest me. A new center opened up near me and in January of this year I had the catecholamines rerun after being off the med for 3 years. I am on no other medication that would cause high levels of either. My NE was still high (almost 1,000) and the dopamine was triple what it should be. I've researched high dopamine and it must be pretty rare because there is little literature available on it. My new doctor said it can be related to my diet but I have gastroparesis so my diet is pretty limited. There are lots of articles about LOW dopamine as that is what causes Parkinson's but not much on high dopamine. No one seems concerned about it so I guess it's no big deal. The high NE is what is causing the high heart rate, bp, flushing...more worried about that and the beta blocker seems to help but the question is still WHY? Guess it's time to just accept that this is how I am now and be happy that some of the symptoms have gotten a bit better with the medication.
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