Maybe getting closer to a cause…

Here I am getting ready for the kidney ultrasound. It’s been a turbulent journey trying to figure out what is causing the blood pressure to sky rocket so high. It’s been scary. So many nights I have fought going to sleep for the fear that I would not wake up in the morning.

2 weeks ago on a Sunday I was awoken with the heart beat in my ears, which was happening daily, but this particular day a bad headache, very hot flushed face and a blood pressure monitor read of 200/110.

Day after day and 6 medication changes, 19 doctor visits and no reason found for this daily readings of 160/80 – 195/105.

I went to a nephrologist and he did blood tests. He knew that I was put on a blood pressure medication by the cardiologist. So when he took my blood pressure he said, “start a double dose”. So I did, went home and went to sleep and woke up with a tremendous headache, extreme high blood pressure and nauseous.

I was so scared. But as we had found out since January 26th, the Emergency Room never gives me any medication and makes me lie there for up to 10 hours.

As the blood pressure cuff squeezes my arm every 15 minutes, broken blood vessels from the constriction cause my arms and hands to become spotted with blood under the skin. I cry which doesn’t help, but the pain that that cuffs cause is so extreme.

So, when this blood pressure was high my husband called his best friend, a cardiologist in Arizona.

He immediately called in 2 prescriptions. My husband drove me and I waited in the car while the prescriptions were filled.

The recommendation was if the 1st pill didn’t work within 20 minutes, immediately take the 2nd one and drive directly to the emergency room.

Within 20 minutes the numbers started going down. Within 2 hours, for the 1st time in several months my blood pressure was 125/90.

Finally, finally. But why did this newest med make things so much worse? I’ve been doing a lot of my own research, just like when I had to diagnose my AOSD back in 2008.

The rheumatologist still marvels at my ability to find out what rare disease I had, when 23 doctors in the hospital could not figure out what I had back then. Persistence pays off.

So, here I am again, trying to figure out what is wrong with me.

I have started to do food test and elimination. I have found that certain foods are making my blood pressure go very high when I eat them. These favorite foods are:

Yogurt, Cheetos and Doritos chips, exotic French cheeses, asparagus, soy sauce, any Asian food, deli meats and several others. But I am finding my own correlations. I have several more MD appointments coming up with the nephrologist to find out the urine tests results, blood draw results, the kidney ultrasound being done today.

I do have a slight suspicion of what may be going on, but I don’t want to jinx myself or put an idea into the universe that doesn’t need to be there.

I will keep my blog updated and hope and pray that my tests come back normal.

Until then, stay healthy friends.

Claudine

Daily Update

A personal blog of my rare and awful disease. Claudine Song View All →

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.

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