Med Fun:
So far, I've found out that Acebutolol will slow down my marathon heart rate, but will also lower my blood pressure to the point where I can't lift my head. Cool party trick.
I've learned that too much Florinef will give me the headache from hell and raise my blood pressure sky high, but just a bit is a miracle worker.
My blood pressure crashed after taking Midodrine, and the head scratching made me look like a crack addict.
I've moved on to Zoloft (a pediatric amount), and so far no craziness, chest pain, or faster than normal heart rate (PLEASE DON'T LET WRITING THIS JINX THIS!!!).
Also Potassium supplements, ThermoTabs, and salt, salt and more salt. I have a salt shaker in my purse at all times. I would definitely win at any of those parties where you play the "What random things are in your purse" game.
Where do I put all of this medication?
My Mary Poppins Medicine Bag
Remember in the movie when Mary Poppins took a lamp and a full-length mirror out of her purse. It's exactly like that, but filled with never-ending meds and a blood pressure machine.
Other amazing things:
Curly fries from Jack in the Box
Salt from the Great Salt Lake
Grape Pedialyte
Lemon Lime G2
#1 Husband
90 second whole wheat rice
DVR
Cuddly dogs
Snuggies
Carla Bruni and Kings of Convenience
Another person who carries salt with them - love it!
ReplyDeleteSounds like me: except I live alone since my significant other left me since I couldn't go and be the life of the party anymore. Florinef has had little to no effect. Midodrine keeps me from lying down when I am SO tired. Ton's of dizziness!!! ER Propranolol dropped my hr to 40's all the time (stopped) was on 20 mg prop. 2x a day. Just making switch to Acebutolol tomorrow. A bit nervous. 100 mg morning and night. Wondering because I have good sitting heart rate and pulse rate, stand up 30-40 pt drop in pulse mainly systolic and hr jumps 30-40. 4 liters of Gatorade and water a day. Am on Venlafaxine (good) 2x a day and Clonopin .5 4x day as well as potassium supplement. IV fluids in ER seem to help but can't do that all the time. Had terrible different kind of dizziness with vision problems whenever I moved today- something new. Diagnosed with POTS ten years ago, got worse 2 yrs ago and now lots of problems. Seeing a POTS cardiologist that says the only thing they really know is try and see what works and what doesn't which raises my anxiety level every time I start a new med. My sodium levels are actually above normal. Blood tests always come back normal except potassium until the supplements. Always looking to correspond with someone suffering on a daily basis like myself. Feel like death upon awakening in morning with very low bp and low hr. Told not to take my BP just will make me more anxious. Told it will be four weeks to see if Acebutolol will do any good. I wish I had an amazing wife, it must help a lot to have a supportive spouse. My friends have all faded away too. mrdanpeterson@hotmail.com Hope your battle continues to be positive. It is hard to want to keep going- do you ever feel that way?
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