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Loxodonta

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Everything posted by Loxodonta

  1. Headache came with Fludrocortisone and never left after discontinuing. I started Fludrocortisone for POTS. 10 weeks later I had a bunch of NEW symptoms come to an intense increase all at once over 2 days that were intollerable. My doctor had me stop the medicine. All of those associated side effects went away except one. That one has stayed like a bad guest. It has been 12 weeks since no fludrocortisone and a specific associated side effect is still there. At first it was relentless but now less intense but still there. I'm referring to a specific head ache as if someone kicked me in the back of the head. Headaches have NOT been an issue for me for my 50 years of age. It is a new symptom for me. The first week as I stopped the fludrocoritsone I held my head and cried for sometimes hours. The headache now waxes and wanes. I try ibuprofin and it may or may not help...possibly 1 out of 5 times. Also, another symptom has arrived right after stopping fludrocortisone. The skin of my eyelids hurt a lot but there is no real significant swelling that I see. It is not a real complaint as I can tolerate that eyelid pain but thought it might shed light on headache. I am also very fatigued but that is not new. (The other side effects that came with the headaches but went away after stopping the fludrocortisone are: Heart shivering when lie down, or heart beating fast and up high in chest when lie down for a while, 2 nights of very little sleep bc this went on most of the night, higher blood pressure, slightly blurred vision, slight dizziness, and headache in back of head like someone kicked me, and pain as if something wrapped around my neck and squeezing, slowed thinking, weakness) These were the main symptoms that precipitated my stopping but again all went away but the headache and pain in eyelids started) One more thing: When I had initially started the medicine I had some side effects like discomfort in eyes which resolved by decreasing the dosage. So for 8 weeks I took half of a pill (the pill was 0.1) Then doctor suggested I try alternating between 1 full pill and half pill to increase dose. So it was essentially 0.075 for 2 weeks but still lower than fully prescribed. I have not changed any other things throughout this time.
  2. Hello, I am new to this forum and just saw your original post. I had a similar experience. I went to the top of the highest peaks right outside of Denver in 2006 (or 2005). I was surprised my symptoms were better. There was a big telescope and park up at the top and we did a lot of standing around up there or slow movement while upright which normally would bother me a lot. Then we did a day hike to the next parking area down the mountain. I was with several people who were much more in shape and lived in the area and frequented high elevations. I was from Missouri, out of shape, and had the POTS symptoms but was not yet diagnosed. We drove up to the highest point (near some telescope) and then we walked down in elevation on a trail. A friend was going to meet us lower down with his SUV. So basically it was a half day hike at high elevation. The guys in shape had very bad headaches and threw up. Normally I would have been worried about my exercise intolerance. My POTS symptoms seemed better and I tolerated the hike very well.
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