Kris4444

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.

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.

Thank you!!!!

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.

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!

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

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 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!

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!!

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!

Thank you!

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!

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?

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).

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.