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Everything posted by Kris4444

  1. I did not have a hard time getting off of it that I recall. I did start taking it again though. I use it before riding my horse and before exercise. It has greatly reduced my heart rate during those times.
  2. Humira ended up giving me autoimmune hepatitis. Luckily we caught it before any permanent damage was done. This is very rare. I'm the only case my rheumatologist and liver doctor have ever seen.
  3. 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.
  4. 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!
  5. Roxy, I haven't heard of these. Will definitely look into them. Thank you!
  6. 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.
  7. 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!
  8. 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!!
  9. 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!
  10. I did email my doctor today. He said it's concerning and that we'd have to do an MRI of the brain but since my bp has returned to baseline he doesn't think we'd find any abnormalities. In the meantime I found my lab results from my hospitalization at the end of August when they did the erythromycin infusions for my gastroparesis. They told me after 48 hours of infusions (should have been 72 hrs) that it wasn't working and that my labs look great so I should go home. My labs show a DRASTIC fall in both hemoglobin and platelets. They sent me home anemic! I don't understand. Lots going on and lots of emails back and forth with doctors right now. Very frustrated!
  11. Thanks for the reply. Do your doctors think that this is related to your dysautonomia? I haven't mentioned this to my doctor yet...I guess I should tell him?
  12. I have no idea if this is due to my hyper POTS or just a strange occurrence but here's what happened. My husband and I love the show Quantico on TV. We watched the first episode of the season last Sunday. I happened to have a VERY busy weekend that weekend (in and out of malls and stores looking for a refrigerator and then eating out twice over the weekend) and was having extremely high blood pressures (175/111) and feeling terrible. This past weekend I told my husband I wanted to watch the second episode. When we turned it on, I was completely lost! I started asking my husband questions. I was not able to recall the biggest part of what had happened in the show but did remember tidbits. I asked him to replay episode one. As I watched I started to really freak out. I remember watching the show but huge moments of time were missing. I do not believe I fell asleep, I was not distracted by my phone as I make sure to put it down for my favorite shows, especially this one because it flashes back and forth in time and you really need to pay attention. This whole thing is freaking me out! Have any of you had something like this happen? Do you think this related to my dysautonomia and/or high bp? I've never had my bp get so high. It has since gotten better as we have added a 1/2 of a hctz in the evening but I still get high spikes which my doctor thinks is related to my NE spiking. He has recommended bumping my beta blocker up and getting rid of the hctz so I can get back to getting IV fluids (I've had to skip a couple of weeks due to the high bp).
  13. Thanks Sarah. BP is doing better. We had an out of town wedding and I forgot one of my bp meds at home. Sunday when we got home it was high but is looking better today. Thanks for asking.
  14. Lily, I do make homemade soup all the time but thought for a quick meal a canned soup would work. I'll have to pay attention to my bp if I use the canned soup. The dye that I reacted to is gadolinium. It's used for MRI as well as floroscopy. I have some bulging discs that were causing me pain so they did the MRI and then a day or so later did an epidural with floroscopy using the same dye. I guess it was just too much dye for me. The iodine they use for CT scans doesn't bother me. Weird.
  15. Thank you Sarah! You are always a wealth of information! I had a nephrologist when I went into acute kidney failure after reacting to an MRI dye. I called today to explain my current situation but they said it had been 6 years since I had seen her so I'm considered a new patient and they couldn't see me til next year! My GP said they might be able to get me in to see someone soon. I did speak to my FAVORITE doctor, my rheumatologist, today. He thinks there was too much sodium in the restaurant food I ate over the weekend and thinks my bp will stabilize. He wants me to keep an eye on it. He also somehow knows that I've bought a bunch of canned soups (I don't recall sharing this but must have in our appointment last week) and told me that the hospital fills up with people full of excess fluid at the first cold snap of the season. Guess I won't be eating those soups!
  16. I'm starting to wonder if it's my blood pressure cuff or my NE spiking. I saw my GP yesterday after having several high bp readings at home over the past few days and filling up with 11 pounds of water weight over a weekend. My bp was high there but not as high as at home. They told me to start taking a half of a 25 mg hctz in the evening on top of the 30 mgs of nadolol in the morning. I drove an hour to visit with my mom. when I got home from my moms, my bp was 175/111. I felt extremely tired and tingly and had some pain in my left shoulder blade. I called the GP on call and he told me not to freak out over the numbers. He said he did not feel as though I was in crisis but if my arm pain got worse to go to the hospital. He also suggested I be seen by a nephrologist to have them be the expert to figure out how to control the blood pressure since I have so many issues (MCTD, dysautonomia, GP...) This morning my bp was normal. After coffee it was 161/102. So I went to CVS and tried their machine. It was lower there but still 130/93. Back at home after relaxing it was close to what I saw at CVS. Later in the day it had shot up again. So again, my cuff? or spikes of NE? Hubby wants to buy a new cuff. Can't hurt. I am hyper POTS. I have high dopamine and NE. My gastroparesis had been really bad. Does anyone else get these wildly fluctuating blood pressures? What do you do to regulate it?
  17. That's a good idea. We changed the batteries last night. After driving home an hour from my mom's I was really feeling terrible. BP was 175/111! This morning it's 118/87. Crazy.
  18. At my GP now. BP at home was 169/108. Maybe my monitor is off? Yes, eating is not what it used to be. My GI doctor said that domperidone shouldn't be causing this high bp...
  19. Ancy, that was a lot of food for me and I was miserable all weekend. It's rare for all the kids to be gone! My bp does the same thing, stays high then goes low. My heart rate can drop down into the 40's even with the high bp. They noticed this in the hospital but didn't do anything about it.
  20. I've been struggling lately. Hospitalized twice in the last month. Lots of left sided pain which gets worse after eating. I'm only eating soft foods but even that is aggravating my condition. I've lost 22 pounds. I'm on Domperidone for the second time. Last time I had to stop due to prolonged QTs. This weekend my husband and I found ourselves with no kids. We ate out Friday and Saturday. Sushi the first day with some rice, I kept the quantity small. Saturday I had baked tilapia and a cup of soup, cup of mashed potatoes and a small side of whipped sweet potatoes. All soft and maybe a 1/4 of what I used to be able to eat. I had a lot of pain but what really shocked me this morning was when I weighed myself. I gained 11 pounds over the weekend!! I know it's from the sodium, my face is puffy, hands too. Worse yet, my blood pressure this morning was 169/105 yet my heart rate was in the 50's. I have a host of other medical issues, dysautonomia being one. I'm kind of freaking out over the swelling, weight gain and bp. Does anyone else experience this? Thanks.
  21. I'm sorry to hear you are having a rough time. As I write this I'm sitting at the rheumatologist office waiting to be seen. Thankfully, my autoimmune disease seems stable but I'm still struggling with the GP. After my last hospital stay a week ago I went back on the domperidone after having 2 EKGs to make sure my QT waves were back to normal. They are, so we are giving it another try. Keep me posted on this new med. I'm hoping it works for you and you get some relief! I tried posting this a bunch of times from the doctor's office but it wouldn't post. Sorry for the delay!
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