Hershey

Thank you. I didn't see the updated information. I appreciate it. So difficult with all of the unknowns.

@WBuffettSorry it took so long to reply. Amiovig worked for me right away without side effects. I was getting auras and Ocular Migraines. I have HyperPots. Ivanbradine keeps my heart at a normal rhythm and doesn't effect my blood pressure. It's a long-term remedy and doesn't cause side effects for me like the other medications were doing.

I am so sorry your wife and you are going through this. I have found like @Pistol hydration therapy has helped immensely. My doctor prescribed the therapy and I do 3 times a week. I had a port placed last summer, therefore, I only have to have a nurse come out once a week to insert the needle. I went through numerous beta blockers and also didn't tolerate the standard POTS' meds. I am now on Ivanbradine that I order through a Canadian Medstore with an rx from my doctor. If I take Ritalin, I have to take a teeny amount or my heart rate goes crazy. I would definitely ask about PT, hydration options and Ivanbradine. Also, I have dealt with debilitating migraines. Have she ever tried the monthly prescription shot Amiovig? It has changed my life. Cut my migraine days by 95%. I hope some of this helps.

I've been applying for virtual positions and I have an interview tomorrow. I'm very excited 😁 I guess my fear is also that if I happen to get Covid that it'll be a very bad outcome. So I was wondering if any others had experienced someone with POTS/EDS and Covid. I'm sorry you are having issues finding doctors. It's so frustrating. It took me 2 years to get diagnosed with POTS and about 9 to find out I have EDS also. Craziness. I'm sorry you are having to go through all of this as well.

Hi, I'm trying to ease my mind or see if anyone has experienced the Coronavirus and has POTS or EDS. I've read the boards, and posts by the doctors, but the last post I saw was from March/Aprilish. This is all still so scary. My doctor won't allow me to go back to teaching in the fall because I live in Florida and it's become a major hotspot. I totally understand where my doctor is coming from, but now I have to find a new job. I work for a small private school and no one chose the option of distance learning. The children also won't be wearing masks so that was another concern. To be honest, I am just scared because if I get this virus really no one can predict the outcome. I appreciate your time and any advice you can offer. Thank you, Kristin

This is wonderful news! I just had my 1st infusion at home Friday. I will have them 3x week. What I am reading is very encouraging! Glad to hear it is helping so many of you. 😁 I am weaning off an antidepressant right now so I can go on Northera so I am not quite myself overall. Good to hear the positives!

Thank you very much! I definitely appreciate the encouraging words! 😊 Definitely easy to ask for some little accommodations. I will definitely keep you updated. Again, thank you!

I agree with you. The compression stockings help. I definitely do it for enjoyment. I have a rolling chair so that will help a lot. It's difficult because I called disability and I don't know how people survive on that. I like what you said about the mind also. I definitely need to keep it positive! 😁

Thank you for the response. That makes a lot of sense. I'm going from a very traditional environment to nontraditional teaching environment. I will teach math one-on-one and the class size is 12 students. I don't think that they would say anything about me sitting. I'm just very nervous and scared because I don't want to have an issue and lose a job that I truly want. I'm sure I'm not the only one who feels that way. Lol. Just trying to see if I'm expecting too much I guess. Looking for reassurance as well because sometimes I feel alone. I appreciate you responding. I love that you sit cross legged on a table. I guess I am also scared to ask for anything or explain the situation because people fear the unknown.

Hi, I was diagnosed with POTS officially 7 years ago. I am a teacher and the past 2 years have been really rough and I resigned from the public school system after teaching for 16 years. I have found amazing doctors and want to feel hopeful because I found employment at a private institution. Less stress and Fridays off. I'm not going to lie about being afraid as well for this opportunity because I don't want my body to mess it up. Any advice? Positive feedback if you are working, etc. I appreciate it. Thank you.

Thank you Lily. Vepa, this just started with the low heart rate so not sure about that going to see a doctor in Miami next week. Anyone have strange things on MRI?

Hi everyone. I was diagnosed with POTS in January of 2012. I am a teacher. I am new to this forum, but I feel blessed that I have found it. I'm a complicated mess @ this point. Lol. The beginning was horrible, bewildering, and I felt insane. The symptoms started a year earlier and I was hospitalized, but they couldn't figure out what was wrong with me. Best follow-up diagnosis given by a cardiologist ever, "It will happen again, but we don't know what's causing you to pass out." Awesome. I then found a neurologist in a larger city who based on symptoms said he thought I had POTS. What is POTS. Research began on my end and I was devastated. Kept passing out everywhere. Had to have someone around when I showered, etc. Eventually, positive tilt table a few weeks later. Bp meds-propranolol. Been on midodrine, salt tabs, Gatorade, fluorinef. Felt so sick. Caused me to throw up daily. FMLA became part of my language started to get quite a bit better after a few years, doing a lot more, just taking propranolol. Now, I am back at square 1 and sooo confused. Went to ER which was a joke. My heart rate was averaging 58-63 bpm. No bp issues. No energy, passing out, tremors, and weak. Needless to say neurologist is saying nothing besides take a salt pill. Ok. Doing that. Took a slightly lower dose of bp med last night and woke up with 100+ hr. So frustrated. Read mri dictation. Here's what I know. I have a pineal cyst, atrophy of mamillarry bodies and hippocampus and POTS. Neurologist has only discussed the cyst with me. Any of this sound familiar to anyone? Anyone relapsed this badly? Anyone abnormal MRI? I appreciate anything. Thank you so much 😁

I am so sorry to hear that Becca. I have thought of working from home because there are teaching jobs online, but this is so difficult because I was doing so much better and had a major relapse. I hope you start to have more good days than bad.

Hi everyone. I was diagnosed with POTS in January of 2012. I am a teacher. I am new to this forum, but I feel blessed that I have found it. I'm a complicated mess @ this point. Lol. The beginning was horrible, bewildering, and I felt insane. The symptoms started a year earlier and I was hospitalized, but they couldn't figure out what was wrong with me. Best follow-up diagnosis given by a cardiologist ever, "It will happen again, but we don't know what's causing you to pass out." Awesome. I then found a neurologist in a larger city who based on symptoms said he thought I had POTS. What is POTS. Research began on my end and I was devastated. Kept passing out everywhere. Had to have someone around when I showered, etc. Eventually, positive tilt table a few weeks later. Bp meds-propranolol. Been on midodrine, salt tabs, Gatorade, fluorinef. Felt so sick. Caused me to throw up daily. FMLA became part of my language started to get quite a bit better after a few years, doing a lot more, just taking propranolol. Now, I am back at square 1 and sooo confused. Went to ER which was a joke. My heart rate was averaging 58-63 bpm. No bp issues. No energy, passing out, tremors, and weak. Needless to say neurologist is saying nothing besides take a salt pill. Ok. Doing that. Took a slightly lower dose of bp med last night and woke up with 100+ hr. So frustrated. Read mri dictation. Here's what I know. I have a pineal cyst, atrophy of mamillarry bodies and hippocampus and POTS. Neurologist has only discussed the cyst with me. Any of this sound familiar to anyone? Anyone relapsed this badly? Anyone abnormal MRI? I appreciate anything. Thank you so much 😁