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Posts posted by PJPW

  1. 22 hours ago, Scout said:

    Thanks for your reply, @p8d.

    My specialist is an autonomic specialist, indeed. She's head of the neuro department at a big hospital here, which has a special autonomic clinic, and has people travel to see her from all over the country. 

    I don't respond well to beta-blockers,  so far, sadly. Metoprolol seemed to make me worse, and also gave me horrible insomnia and nightmares. 

    My cardiologist said we'd discuss Ivabradine next appointment. I see him in three weeks. That was the earliest I could get in to see him. 

    If I don't take the Ivabradine, I'll be trying Calcium Channel Blockers, which I am told will help with the BP spikes too. Fingers crossed, at least! I tend to get a lot of side effects from meds which is irritating. Very sensitive to them. The BP surges are a big concern for me. 

    Interestingly, fluids drop my BP. I tend to get less "surges" when I am drinking a lot of fluid, though still get some. I make myself drink a litre in the morning, to start off the day.

    I'm interested in your experience with clonidine. Did you immediately get high BP when taking it, or only get the rebound hypertension when withdrawing? 

    Following this for information


  2. Curious if anyone can suggest things to help. DD was dxed with high epinephrine but not norepinephrine. So her Dr said she does not have hyperpots. What we do know is her blood pressure and heart rate are high an upon standing...goes higher. Current med is propanalol. She was tried on the clonidine patch at the lowest dose possible and she was dizzy upon standing and by day 4 so fatigued that she said her vision was blurry. Dr said to remove the patch and restart the propanalol. A few years ago she was started on florinef and did not do well at all. Blood pressure went up and she would go into a secondary seizure for around 20 minutes.


    Just hoping someone has input

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