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Zach Martin

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Everything posted by Zach Martin

  1. @Knellie I had a very similar experience from fluid/salt loading. When I initially started fluid/salt loading, the head pressure was not so bad. However, when I increased both fluid and salt even more because I wasn’t noticing any improvements, my head pressure got much worse. When I stopped the fluid/salt loading last year, my head pressure did get a lot better. Unfortunately, even though it has gotten better, the head pressure has still stuck around. It’s like now my head is very sensitive to a number of things. I can’t wear hats anymore without getting terrible head pressure, and even my sleep is a big factor as well. I, too, wondered about intracranial hypertension because raising cerebral blood volume causes an increase in cerebral pressure. I mentioned ICP to my neurologist and he brushed it off because I don’t experience any vision problems. I know this doesn’t rule out ICP, but i didn’t press him on it. I have tried a bunch of different migraine medications and none of them have made me any better. Next week, I am going in for a Botox shot to see if this provides any relief. I can’t say I really have any helpful advice, except that I seem to be experiencing something similar to what you are.
  2. So back when I went to Mayo in 2019 I was diagnosed as hypovolemic based on a 24 hour urine volume. I also had elevated norepinephrine so I got the hyperPOTS label as well. As is custom, I was told to up my water/salt intake and exercise to increase my blood volume levels. However, when I water/salt loaded for about a year I actually experienced worse palpitations and gained a debilitating head pressure as newfound symptom. I wasn't monitoring my blood pressure at the time, but I imagine these symptoms were do to the increased salt elevating my bp which already runs a little high. What I'm trying to figure out now is if I actually do have low blood volume. I have read that the 24 hour urine collection isn't a very accurate measurement of blood volume--mine was measured at 1357 mL and my sodium was 198 mmol. I was drinking 2 liters of water per day at the time. From what I have read, my urine volume amount actually seems fairly average. The Doctor who I saw at Mayo also said I should cut back on my salt intake because that was apparently high. So my question is does anybody have any information on if 24 hour urine collections can be used to accurately measure blood volume? It sounds like the test is very dependent on how much fluid was consumed that day and is more of a test to measure how much salt one is eating rather than blood volume.
  3. I have not. I seem to be overly vasoconstricted already, though, as stimulants makes me much worse, and things that vasodilate like alcohol actually make me feel better.
  4. @Sarah Tee Wow that's crazy that it's that much of a difference for you! I definitely feel better at night, but the brain fog is still pretty debilitating. My onset was gradual as well. I initially discovered I had POTS in high school because while I was playing sports I started to get exhausted really easily. The brain fog, fatigue, and head pressure didn't get real bad till about 5 years after I had my initial diagnosis.
  5. @Sarah Tee Yes, my brain frog and head pressure gets better later in the day too! I’ve always wondered why this is. Does anybody have any ideas? @Delta Walking helps me think a little bit clearer as well. I’ve always thought this was weird because every person with POTS I have read about gets worse when they stand/move around. Nice to know I’m not the only one.
  6. Hi, so I have been on the forum for a couple years now, but this is my first time posting. I am a very atypical POTSie in that I have very few problems with being upright--hardly ever have lightheadedness, nausea, palpitations, etc. However, what I do experience is an absolutely debilitating brain fog which affects me throughout the whole day, no matter if I’m sitting, standing, or whatever I’m doing. It has affected me so much that recently I had to stop taking classes all together after decreasing my credit load my last couple of semesters. My other most prevalent symptom is a terrible head pressure that also greatly affects my cognition. I also have other POTS symptoms like exercise intolerance, sleep troubles, and fatigue, and I have been diagnosed with POTS by Mayo Clinic. I have done all the baseline treatments recommended for POTS like increasing salt and water, doing an exercise regimen, wearing compression stockings; and have tried a bunch of different drugs like florinef, propranolol, and stimulant medications. The increased salt and water actually made my head pressure and cognition worse. The stimulants worked at first, but after awhile I grew tolerant to them, and they worsened my head pressure to where I could feel my pulse pounding in my own head. I was wondering if there was anybody else out there who experienced something similar where they had terrible brain fog but no dizziness. And if so what have you done to help your brain fog?
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