It’s been an awful last few months…..
The blood pressure doesn’t seem to be controlled since January 26th after the Covid vaccine. I am praying and praying we can get this fixed. I miss my life.
I’m going to see a new MDs today. The last visit in the ED at a different hospital, not Mayo I was given immediate referrals to kidney and cardiologist. I was hoping that I could get appointments at Mayo, but they are booked for many months out. One nurse said that I would have better luck in 5 or 6 months after the snowbirds leave. Well, that’s probably true, although I would probably be in very bad shape our worse….
They said call back daily to see if there is a cancellation. I called daily for weeks. No luck getting an appointment and the blood pressure extremely high where I could not sleep at night due to the pounding heartbeat in my ears. The blood pressure goes extremely high up to the 200’s. I have become extremely anxious and afraid to go to sleep. I’m afraid I might not wake up……
I have had so many doctors appointments at Mayo. One appointment after the other, a new med changed each time due to awful side effects. My life is quite a challenge, although I try very hard to keep it as normal as possible, but it’s difficult with dizzy and no sleep due to pounding in my head all night. Why can’t they get this blood pressure down??
Ive now been on 4 different meds: lisinopril, Amlodipine, Olmesartan, Losartan. But its getting worse. I have not slept in days and have constant headache and nausea.
I am constantly dizzy and very sad now. I have switched back to a vegetarian diet. I am watching my salt extremely close. I drink a gallon of water daily. But just sadness when i take my blood pressure.
I am praying this new MD will find a solution. I am very very sad.
Well, time to leave for my appointment.
Have a good day friends.
Please stay healthy.
Claudine
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Adult Onset Stills Disease 
I’m so sorry, especially since you were finally on track before that vaccine! I’ve have high blood pressure since I got Stills, and I’m sure all the weight I’ve put on hasn’t helped. I live in Canada where healthcare is sparse, so I’m afraid if I react badly to the vaccine I’ll have a hard time getting much help. Not sure whether I should get it although I really will go crazy if I have to continue isolating after others are back to their normal lives.
I hope you find a solution to your blood pressure soon. It sounds like a serious issue that Mayo should prioritize rather than making you wait for months. Personally, I did not find the Arizona Mayo very helpful for Stills issues though I’ve heard good things about other Mayo clinics. Best wishes.