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Finnmin

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About Finnmin

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    Female
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    Finland
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  1. Hi haugr! BuffRockChick, thank you for the salt&hydration tips! I read your TILT update, must have been an awful experience! It's a long road to get a tilt test in my country, and my husband doesn't even want to be tortured like that, but I'm afraid we need all the proper testing done the hard way, to get him disability benefits. He's still far from being able to work at all. Why is it so hard for a big man to drink up the whole 8oz glass within 10 minutes?! He often drinks just 4 oz and I get mixed up with my daily cup calculations, running after him with a half empty (half full) gla
  2. Hello again, I return with an update to my POTS-husband's situation. Our neurologist refused to give him any medication, because he thinks losing weight and cycling 27km per day has improved his condition, and that he should continue on this path to full health. Well, it is true that his POTS-tachycardia when he stands up is sometimes completely gone now, and most of the time lasts only 30 seconds when he stands up, but when he has overexerted himself, the rise in the pulse is >40 and lasts as long as he stands, as it was in the beginning. But the problem is, HE DOESN'T FEEL ANY BETTER!
  3. His heart rate goes up 28-40 bpm when he stands up, standing blood pressure has been normal now! We have been unable to continue high dose sodium because of the acid reflux, but since oddly my husband's blood pressure is normal now, I have high hopes that he might be able to take fludrocortisone to fight the hypovolemia! I'm quite sure now that his bradycardia happens due to low blood sugar and not high sodium. While refusing to eat for hours because of his desire to lose weight, his pulse was 43-60! It's still so hard to figure out this illness... Long daily bicycle rides seem
  4. Update to our salt loading project: salt in milk stays down moderately, but we're still trying to find a way to get the reflux under control. POTS is fighting us back, by giving my husband a resting pulse too low (50-60) to function properly, in addition to high blood pressure (160/100). Does anyone know if salt can cause bradycardia? Before this experiment, a pulse under 64 was rare.
  5. Those are good points, we did discover that plain water gives him heartburn, which doesn't make sense to me, but anyhow, if 1/3 of the water is berry juice, he can handle it. Today I'm giving him a total of 6 sodium tablets, 1 tablet every 2-3 hours, pulverized into warm milk - and no sign of heartburn yet! I'm cautiously positive that this might work!
  6. Thank you for the tips! We will have to try everything, acid reflux is trying to take away the success we've had with salt. He needs about two teaspoons of salt and 3 liters of fluids to feel better, it's surprisingly hard to add that much salt into food and drinks without making him sick of the taste and throwing up stomach acid! But we're fighting hard, we'll find a way!
  7. I have some good news from my husband and some bad news: NaCl sodium tablets and fluids together are the FIRST treatment EVER to show any improvement in his health! He spent only 45 minutes in bedrest yesterday, the usual average is 4 hours! As usual, he didn't notice the improvement himself till I pointed out the fact to him, because he's a notorious overexcertionist: whenever he's able to stay up, he stays up till he's presyncopal.... So hypovolemia seems to be the key, but the bad news is: his stomach can't handle the sodium tablets! He's got acid reflux, so he gets terrible heartburn
  8. Getting a pulse oximeter has helped me to take care of my POTSman a bit better. I'm aware that in his case, the oxygen level in the blood of his fingertip might not be the same in his brain, let me explain.. His usual oxygen saturation levels: Sitting and standing: 94-96 Supine: 90-94 After waking up: 87-90 Exercise: 84-90 Acrocyanotic blue toe: 97 Red pooling hand: 96 Leg slightly elevated when supine: 86 Observations: he wakes up feeling horrible, oxygen starved. But when he lays down to rest from daily activities, he starts to feel better, even i
  9. That is interesting! Thank you for sharing. I'll have to experiment with both arms now. We have an automatic BP cuff.
  10. I'm sorry to invade this thread with a question that isn't about the heat, but the light! I just don't know what search keywords to use to find out if this has been discussed before. My husband keeps asking if it's a POTS thing that he feels "better" in bright sunlight than on a cloudy day? Since we're in Finland, heat is not the issue, sunny days are rarely hot. My experience says that our mood might be better on a sunny day, more serotonin thanks to the light and such, but if anyone has any "medical" knowledge on POTS + sunlight, I'd be happy to hear. On the topic then, my husban
  11. My husband sinks into a deeper state of fatigue after a meal than after exhausting exercise. I've noticed that his capillary refill time goes up to 4-5 second in his hands, a sign of peripheral reduction in circulation, because of digestion?(https://en.m.wikipedia.org/wiki/Capillary_refill). He's feeling so unwell on his bed after a meal, that I haven't taken his BP till he's feeling better, but I will try tomorrow. He's accepted that he has to spend 30 minutes in bed after a meal, feeling terrible, he's a big guy and isn't happy with many tiny meals a day, which would probably help him.
  12. Wow, major difference there!! I couldn't even have imagined... Thanks for trying it! I wish that my husband's orthostatic hypertension was just my mistake with his arm position, but unfortunately he's giving high monster readings again, with his arm supported. I can't find a pattern what's causing his BP highs and lows! I guess this is what dysautonomia is in his case: irregular, irrational, random blood pressures. His heart rate is predictable and logically POTSy, low when supine, high when standing. If hypertension wasn't enough to worry, he's now occasionally showing signs of "p
  13. He hasn't been taking any medications for a while and for a few days not even an emergency propranolol, because his BP came down immediately when he laid down. And so, here I am again, wondering what an earth is going on with this illness! Those extreme high BP spikes are gone! He now has episodes of "low" blood pressure, both orthostatic and supine: in his case 128/82 is TOO low, he seems to be most functional with a blood pressure of 145/105, which is not healthy. I suspect that hypovolemia and dehydration are real issues with him, I need to find the right amount of sodium for him to
  14. Please do try it and tell me the result! I'm quite worried about the big difference in my husband's arm up/down numbers, my own is the same in both positions! Just when I was happy about his new lower orthostatic BP numbers, he managed to break his orthostatic diastolic record with his arm supported: 178/156. It's so weird that he doesn't feel any diffenet, even if he's in a hypertensive crisis!
  15. Thank you @SarahA33, I will try to find this test in my country! Till then I can only guess what's goin on, I've been collecting my husband's urine today for a bunch of 24-hour urine tests (catecholamines, aldosterone, natrium, potassium, cortisol and albumin, can't afford to test more), and for the first time I get to see exactly how much he pees! I make him drink about 3l fluids per day and it seems to all come out. I can't give him any more salt, because of his hypertension.
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