u/Ok-Bother9736

So I take Ivabradine for my POTS. It works very well. I have very little side effects besides visual side effects. However, it interferes with a lot of my rescue meds for MCAS and other needed medication for hypermobility issues. I have tried beta blockers like.. propranolol and verapamil. I got quite sick on both of those regarding my MCAS.

Do you have any recommendations for a medication that slows your heart rate that is typically MCAS friendly and does NOT mess with blood pressure?

Anything helps, thank you!!

So I just found out a few months ago that I have long Covid. I am a 22F. I got covid back in June of 2022. My main problems include MCAS, POTS, and HSD. My POTS and HSD I believe I had to some degree as a kid, but nothing to interfere with my day-to-day life. It got significantly worse after I got Covid.

Anyway, my doctor said that he has seen people start to improve… men typically 2 to 3 years after their infection and then women typically five or more. I was wondering if anyone has started to improve health wise? If so, how long has it taken?

So I take Ivabradine for my POTS. It works very well. I have very little side effects besides visual side effects. However, it interferes with a lot of my rescue meds for MCAS and other needed medication for hypermobility issues. I have tried beta blockers like.. propranolol and verapamil. I got quite sick on both of those regarding my MCAS.

Do you have any recommendations for a medication that slows your heart rate that is typically MCAS friendly and does NOT mess with blood pressure?

Anything helps, thank you!!

Has anyone experienced anything like this or eventually gotten a diagnosis? Multiple specialists have been involved, and despite extensive testing, there still isn’t a clear answer.

The main issue is recurrent severe eye flares that cause extreme eye pain, severe light sensitivity (to the point that light is painful), vision loss, and have resulted in blindness in one eye. These flares can be debilitating. Optic neuritis, MOG-related disease, and several other conditions have reportedly been ruled out so far.

Because of the severity, treatments such as plasmapheresis and stronger immunosuppressive medications have been used or discussed, and even chemotherapy-type medications have been considered.

What’s confusing is that when the eye flares occur, there are also severe body symptoms. The pain can become so intense that it’s difficult or impossible to walk, climb stairs, or get out of bed. There can also be joint problems, including knees locking up during flares.

The pattern feels autoimmune or inflammatory, but no one has been able to identify exactly what is causing it.

Has anyone dealt with a similar combination of recurrent eye inflammation/vision loss and severe body pain? If so, what did it end up being?

Hey! I’m thinking about getting my tubes tied. Specifically a bilateral salpingectomy procedure. I am diagnosed with MCAS, POTS, and possibly Long Covid, so I am a bit worried about causing more issues with my illnesses. I am curious has anyone gotten this procedure and if so what was your experience? Do you have any tips? Anything helps thank you 🙏