Gamoore14 Posted October 28, 2017 Report Share Posted October 28, 2017 I was recently diagnosed but have been symptomatic for years. My doctor put me on iv fluids and for about 2 months every thing was great. My blood pressure would run a little high but I was feeling a whole lot better. I wasn’t passing out near as much as I was before, I had less brain fog, more energy, less dizziness, and my heart rate slowed down from 120 bpm+ while resting to 70bpm while resting. I get 1.5 L of saline over 3 hours through my port. I have tried several pots medications before and my body couldn’t tolerate them. I also tried getting enough salt and water through oral intake but I was constantly vomiting. For the past 2 weeks I have been feeling horrible. Passing out 7+ times a day, fatigued, brain fog, heart racing 200BPM+, and really dizzy. I went to my cardiologist ( who isn’t my pots doctor) for my yearly check up and he said that he didn’t see any concern with my heart rate or the palpitations. He did take blood and a urine sample to test and thankfully I didn’t have an infection but I was dehydrated. Which I don’t understand because I am Drinking plenty of water, getting salt, and doing my daily fluids. My cardiologist didn’t do an echocardiogram or anything. He just listened to my heart. My pots doctor called and there is no way I should be passing out. He wants me to check my blood pressure through out the weekend and report to him on Monday. Tonight I took it before I started my infusion and it was really high and my heart was high as well. I checked it again about 20 minutes into it and I was normal. Then I checked it when I had about 400ml left and it was climbing back up both my heart rate and blood pressure. As I am typing this I have about 200 ml left and I will check my blood pressure and heart rate when I get done. Has as anyone else experienced this? I don’t know what to do or what could be causing this to happen. I will take any advice and wisdom I can get! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 28, 2017 Report Share Posted October 28, 2017 NOT exactly the same story as yours however I do know what it's like passing out a many times in a day. Monday I passed out 18+, I stopped counting... My body seems to reach a point where I cannot recover or compensate any more and it's lights out more than lights on. I'm on midodrine 10-20 mg 5 x a day, florinef 0.1 mg 3 x a day, and IV fluids twice a week. The fluids help and we see a marked improvment in my heart rate, when I'm tachy. I have a pacemaker which can work to lower my heart rate but not 100% successful. (I also have/had bradycardia issues which are reversed by the pacemaker. Since my cardio was placing one anyway he chose one with rate response which can help some with Dysautonomia's dys regulation.) My bp is a mess really, I'm up and down from one extreme to the other, we treat my higher bps with clonidine, I also seem to normalize during an infusion but many times after that I'll sky rocket. Wednesday when I went to my infusion my bp was 67/45 hr 130s (I know that's not real high but a big change from 60s and being 100% paced the day before.) When we got home bp 161/108 hr 109 and climbing. Didn't make much sense... I layer down the rest of the day and only started feeling better Friday. I'm not sure I really have any advice to offer, everyone's experience is diffrent and you really have to tailor treatment to the individual. I hope you find answers soon! Quote Link to comment Share on other sites More sharing options...
Gamoore14 Posted October 29, 2017 Author Report Share Posted October 29, 2017 Can you tell me more about your pacemaker and how you went about getting one. How has it improved your health since getting it? Quote Link to comment Share on other sites More sharing options...
yogini Posted October 29, 2017 Report Share Posted October 29, 2017 (edited) A normal, healthy person who follows the recommended water and salt intake will stay hydrated. For POTS we aren't normal, and there could be many reasons why you aren't staying hydrated. You should ask your doctor why he thinks you are dehydrated if you are drinking so much water and whether there are any follow up tests (like diabetes insipidus) you could have to determine the cause. You might want to do some searches on the forum as there is a lot of good info on dehydration and how to stay hydrated. If you have a test where you came back dehydrated I am not sure that a pacemaker would be helpful - that is usually for people with low or irregular HR - but your doctor could answer that too. Edited October 29, 2017 by yogini Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 30, 2017 Report Share Posted October 30, 2017 First off let me say yogini is right, pacemaker will not fix dehydration problems. For me it does help with symptom management in general, including when I'm dehydrated, but dehydration is certainly not a reason to get a pacemaker. I got my pacemaker because following a concussion I developed progressively worsening bradycardia. We watched and waited for a month and things just continued to decline until my heart rate was in the 20s. My cardio later told me that he was afraid I was going to die the day he placed my pacemaker. They had defibrillator pads on me in the ER and were moments away from pacing me externally when they whisked me away to get the pacemaker. So the indication for my pacemaker was purely bradycardia, which cardio said was my dysautonomia changing, but since he was placing one he went ahead and placed a biotronik with closed loop system that works to maintain cardiac output. So when bp causes a decrease in output it will pace the heart faster to compensate. Here's the post about the month leading up to my pacemaker placement if you want more detail: Pacemaker has made a huge difference in my life, I went for 6 months without passing out. What freedom! We didn't have to worry every minute about how the position im in if it's going to be injourous if I pass out. Which you can probably relate to... I don't always have much warning when I pass out. I have gastroperesis and a feeding tube which long story short led to an inability to stay hydrated, had a picc placed for hydration, then got meningitis and sepsis. Also had a hernia that was interfering with gut function which they repaired in January, 3 days after that surgery I got sepsis again and then developed osteomylitis on L4-L5. Only now starting to recover from that but due to complications from treatment for the osteo continue to struggle with hydration. So with all of the other things going on I am having bp troubles which keep me passing out almost daily. Not to mention the deconditioning brought on by dealing with back pain complicating things. My cardiologist saw me last week and is hopeful that, with a lot of work to overcome the deconditioning, I could be "more normal" or have a more normal life in 3 yrs or so. Barring complications lol! Pacemaker is still helpful though and without it I know I'd be passing out a lot more. (I can feel it when it's ramping my Hr up, happens many times a day.) At which time it will typically relieve some or all of the presyncope symptoms. I will pass out when my bp drops lower or faster than it's able to compensate for, at least that's what I've observed. An added bonus is that my Dr knows a lot about my Hr and any kind of rhythm problem I may have within 48 hrs. I hope this helps and please feel free to PM me if you want. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.