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Megscd

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  1. Started Florinef 0.05 mg 5 days ago and was on top of the world for 3 days, like instantly. I was full of energy and my POTS symptoms nearly disappeared. I felt fantastic. 4th day: felt anxious and moody, more tired. 5th day: disaster. It was a regular bad POTS day and by last night I was so dizzy I fell over (happily, onto my couch), could barely keep my eyes open, and developed weird elbow and knee pain (even the skin OVER my joints hurt to touch). Brain fog was pretty bad and my blood sugar got up over 200. (I’m prediabetic so I worry a lot about my blood sugar.) I had a killer headache but BP was dead-on normal, 120/80. My heart was pounding hard and increased to 110 when I was sitting there doing nothing, and typically my resting rate is in the 70s and goes up to 120 when I stand up and start doing anything. Finally, I had increased nausea and abdominal pain compared with my usual (suspected) gastroparesis, and my mind was racing...awful, awful anxiety and I usually don’t have that. Teh internetz indicate that Florinef should not have any major effects that quickly, that it takes weeks for an effect to be noticed, so IDK what to make of this. The side effects I experienced are clearly listed for Florinef and some are in the “really bad nasty side effects you should tell your docto about immediately” section, so I called the on-call dr to report I was feeling notably and spectacularly awful. He felt I was a diabetic with the flu and informed me that Florinef would not raise my blood sugar. (!?) I don’t know why I bother asking doctors about anything, some days. Does any of this make sense to you experts out there? Has anyone else felt like Florinef worked like magic for a few days and then turned on you? I’m not terribly excited about taking any kind of a steroid to begin with. I was willing to try it and if it kept me feeling so good I’d find a way to deal with other possible side effects. But if these situations ARE side effects of Florinef, which my gut tells me they are, I’m going to say thank you but no, I’ll just return to my normal POTS and bypass the increased pain and mood swings, as well as the blood sugar increase. I’m nearly phobic about diabetes and definitely do not want to add that to my POTS. No thank you.
  2. EP informed me last week that I have POTS based on a quick poor man’s TTT and my symptoms (plus reading results of YEARS of Holter monitors, ER visits, and EPS/ablation for PSVT), but he also scheduled an actual TTT for tomorrow. He also wrote for midodrine, salt tablets, and 2-3 L of water per day. I hardly ever take my BP because when it is taken it’s always fine, but I’m unreasonably anxious about the TTT and have been randomly taking my BP (I’m well acquainted with what my HR does!). My BP when measured at dr offices is always around 115/70 give or take, and indeed it’s that way if I’m sitting around. However, last night I laid still for 10 min and then stood up to see what would happen. After 2 min HR was crawling on both sides of 120, from resting 81, which is actually pretty unreactive for me, and it stayed around there until I felt too bad to keep standing at 5 min. Although I saw some 125’s. Fair enough on that part, it’s what I would expect, on a good day. What surprised me was my B/P: I expected it to drop at least a little, but it was ALL over the map. Systolic was 130, then 140, then 115, then 150, then I had to sit down. I’ve read about hyperPOTS so I guess that sounds like it? If I’m walking around all day with high BP *and* high HR (a normal HR for me just walking around the grocery store etc is at least 135) I’m pretty leery of taking the midodrine, which I’m not to start until after the TTT anyway obviously, or even taking the salt tablets. That would be my luck to give myself a stroke on top of everything else. This EP is new to me and seems to know quite a lot about POTS and related syndromes so I have some hope he will figure something out on the basis of the TTT, but I also worry, not having had a TTT before, whether it actually has any real chance of replicating my symptoms. Being suspended in mid air is not doing laundry or shopping or working, all of which make me too exhausted to function. What do you experts have to say about all of this?
  3. Has anyone ever heard of carbon monoxide exposure worsening POTS symptoms? I’ve had an IST dx for years and have not been what I’d call energetic for some time, barely able to exercise, lightheaded and nauseated constantly. All that. (I’m working with an EP to see if I have POTS also.) In the last few months my symptoms have gotten WAY worse. I’ve started missing work because I just can’t get out of bed for days at a time. I’m too tired, and when I do get up just to walk around the house I feel like I’ve run a marathon. I found out in October that my old heater was pumping out decent levels for carbon monoxide into the house for probably a month, since I turned the heater on, and I was DONE FOR. Definitely couldn’t get up and am grateful it was discovered before I just died. I figured I should have recovered as soon as the exposure stopped, but I haven’t been well ever since. Is this the type of trigger than can worsen POTS/IST symptoms long-term?
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