so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray
Just because you don’t look sick nesn’t mean you aren’t. Stay strong!! You got this!!
So, this morning, my caseworker is coming to take me to get fitted for compression stockings. Then my homemaker is coming at 10:15 AM and will be here until 2:15 PM. Then at 3:15 PM I’m taking my cat Tweety to the vet. He has to get his shots, and then I have to schedule the appointment to get him fixed. So all in all, a busy day.
So, today has been hard. My POTS is flaring up again. I woke up this morning, and I checked my pulse, it was 69. I got up and went to make breakfast. All I did was put it in the microwave. Within 15 minutes of standing, my heart rate was 161. I had woken up at 10:15 am, but by 2, I was tired and had to go to sleep again. I only woke up about an hour ago. POTS is so frustrating to live with. I go to the cardiologist on Monday to get a second oppinion about it. If anyone has any advice on dealing with this condition, please help. I’m taking in extra salt and as much as I can. I also have an eating disorder. Thanks for reading.
So, today and the last few days have been really good with the heart rate and POTS symptoms. Maybe it’s because of the extra salt that I’m taking in, or maybe it’s just good luck??? I don’t know, but I’m enjoying it while it lasts!!!!!!! I usually sleep on my couch because it’s elevated because I sleep with my head on the armrest, but tonight I’m going to try and sleep in my bed and see how that goes.
So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.
So, I have my echo today. Hopebblly, nething is wrong. I won’t get the test results back for a while. lly, I can still wear lotion and stuff like that. does anyone have any tips for showering, cleaning the house, and cooking when you have POTS? Have a good day, and thanks for reading.
So I had the appointment with the electrophysiologist and he told me that what I was experiencing was completely normal. He said that it was normal for a person my age 2 have an increase heart rate when going from laying to standing. He even said it was normal for the heart rate to go from 70 to 145 when I go from laying to standing. He told me that I did not have pots. He said that what I was experiencing would go away on its own just by drinking fluid and taking in more salt. He said that people with pots cannot walk or exercise or do anything without passing out. He told me not to worry about the skipped heart beats and less I had over 10,000 in a day. Who can count that high realistically anyway? He also told me that the reason my heart rate increases when I stand is because the blood is pulling in the lower half of my body exactly like pots. He told me that pots gets worse that it doesn’t go away. Was ironic is that’s what I told him was happening to me yet he still said I did not have it, plus, he did not do the tilt table test to diagnose or roll it out. He told me that my heart rate could go up to 200 when doing activities and that that was normal. I have to see a different cardiologist because mine had to agree with his notes because he’s the expert supposedly.
So, I’ve been on the phone since 11 this morning trying to get things figured out. I found out that I might be able to see the psychiatrist in my town if we can get a prior authorization from a doctor to the insurance company since the doctor is out of network with them. I can’t believe my caseworker didn’t follow through with the promises she made to the hospital. I cant believe our therapist just said she couldn’t work with us anymore. Found out that my insurance will cover Ensure. The nearest eating disorder treatment IOP program is 2 and a half hours away. I’m trying to get into other living facilities, but they’re not accepting me because of the fact that we have so many issues. My last phone call was made at 5:00 PM. I go to the EP doctor tomorrow about my heart and I will update you all on that when I get back. I will be getting the report on the psych testing that was done at HartGrove back on Friday. If you all want, I can share it here. How is everyone else doing?
Went to the cardiologists today and they said I could have one of three things postural orthostatic tachycardia syndrome, orthostatic hypotension, or inappropriate sinus tachycardia. We have to have an echocardiogram done and we also have to see an electrophysiologist. I looked up what that kind of doctor is and it freaks me out. The doctor told me to stay hydrated taking extra salt and if my heart rate stayed above 130 even after sitting down for longer than 15 minutes I’m supposed to go to the ER for medical attention. They wanted to put a 21-day bodyguardian monitor on me, but my stupid freaking Medicaid wouldn’t cover it. They also want me to wear compression socks.