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Finnmin

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Everything posted by Finnmin

  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) glass of juice, begging him to finish it. He doesn't get nausious, he just says that he can't get it down. I try to understand him, it must be an awful feeling, but drinking is for his own good! I've realized that he gets a lot of fluids in form of coffee, coffee comforts him, doesn't seem to stimulate him, so he drinks about ten 4oz cups of mild, watered down coffee per day. To me it doesn't even taste like coffee, I think it's 1/3 of the strength of normal coffee, but I do worry that it works like a diuretic. If only I could put the salt in his coffee! We had a scary experience with a glass of cold juice: drinking it in the morning triggered him an episode of atrial fibrillation. It lasted for 45 minutes. After that he no longer touches cold drinks!
  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! So we ask you, have you experienced this kind of course with your illness? What could be happening? If the orthostatic tachycardia goes away, it's not technically POTS anymore, but he feels all the other symptoms just like before?! He doesn't have orthostatic hypotension, he is capable to exercise extremely hard without crashing (so no CFS/ME?), this leaves me with so many more questions... Hypovolemia with autonomic nervous system NO LONGER compensating circulational loss of blood into the brain, which would make it bad, a "system failure", rather than improvement? Or could this really be improvement, but we just have to wait for his body and brain to feel it? He complains the same orthostatic intolerance, same gray blurred vision all the time, same weak and heavy muscles as before... We haven't been able to fight hypovolemia with salt, because of his reflux, I will try that path soon again, because it's the only thing that has ever really improved his orthostatic tolerance. His resting heart rate is now 50-60, and blood pressure is tolerably high, so exercise has done something to his system, but why oh why can't he feel any better?! I will dig into the forum now and read how you guys have been feeling, thank you for reading.
  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 to lower his blood pressure, but walking uphill and chopping firewood at our summer cottage gave him really bad hypertension! One would think that all physical activity lowers blood pressure, but something bad happens when my husband uses his upper body muscles. What is the logic in this?! He still has lots of muscle in his uper body, his legs seem thin.
  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 and vommiting happens due to it. The sodium tablets are from the pharmacy, "63% NaCl 500mg" reads on the packet. He gags at salt water and overly salty food, but will try them to avoid bed. I'm just afraid that no matter what form the sodium is, it will irritate his stomach. Any ideas?
  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 if his O2 drops! High oxygen reading doesn't mean that he feels good. Red hot pooling and feet turning cold blue doesn't mean lack of peripheral oxygen, this surprised me the most! Even a slight elevation of a limb lowers its' oxygen drastically (I put the oximeter on his toe to measure this). I had to raise my own leg to a 90 degree angle to witness a slow drop, and I have bad circulation myself. The important lession for me was seeing his low oxygen in the morning, something has to be done! Have you had similar readings?
  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 husband has to avoid heat, before we knew about POTS, he tried to enjoy the sun like he used to, and always he had to return indoors feeling unwell after a few minutes. We couln't understand it. Now we do, he avoids direct sunshine, overheating and enjoys the light from the shade. We used to hope for hot summers (rarities here), but not anymore.
  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. For him, it seems that fats are worse: butter, cream, fatty red meat, sausages.
  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 "postexercise systolic hypotension"! Maybe I'm monitoring him too much, because I manage to catch these odd readings, and we just add stress to ourselves. :/ @haugr, we'll definitely get more tests done to rule out pheo!
  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 retain more water, without rising his blood pressure.
  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.
  16. Please do try it! I'm wondering if the big difference in arm position has something to do with the severe blood pooling in my hubby's hands... This is only my layman theory, but if the blood pools down, maybe the pressure rises to push it towards the heart?
  17. He will probably try them next, we'll see a doctor in July. But I don't know if he's really got orthostatic hypertension or HYPOtension now! I read instructions how to properly measure blood pressure when standing, you're supposed to have your arm supported forward, and not hanging on the side!? Well my husband has something strange goin on: Standing, arm hanging down: 157/110. Standing, arm supported: 127/98! I was under the impression that during the tilt table test, your arms are down when blood pressure is measured? He does have hypertension when he sits and occasionally when he's supine, but I don't know what to think of his standing up blood pressure anymore!
  18. Is it possible to see signs of hypovolemia in regular blood tests? My hubby has high hemoglobin and normal ferritin and such, but these two values are outside the normal range: High: B -HKR Hematocrit 51.80% Range: 39.0-50.0% Low:E -MCHC Mean corpuscular hemoglobin concentration: 297.00 (g/l) Range: 320-355 Doctors say these are ok values, if other red cell counts are normal, but I've been wondering if these are hints of low blood volume. I know it's impossible to tell, but I'm curious if you have had similar values and suspect hypovolemia?
  19. Thank you. Did you spend most of the day in bed, or sitting, or on your feet when doing the 24h urinary test? I'm thinking if hyperPOTS would reveal itself if my husband would try to be upright more -> more catecholamines in the urine, if he is hyper.
  20. I'd like to know all about this topic too, since my husband seems hyper, but he doesn't have tremors, cold and sweaty extremities or dilated pupils. But he does have hypertension, pallor (sometimes his whole head is deep red though!) and anxiety/anger. I'm hoping that testing his norepinephrine would give some answers, but we have to turn to a private laboratory, and they only offer 24h catecholamine urine test. Does anyone know if it's any good for revealing or ruling out hyperPOTS?
  21. I have to correct my previous post: propranolol is unreliable. I know that 5mg is a low dose, so we'll have to experiment more. 5mg Propral, orthostatic BP after modest excertion: 151/125 HR 87 30 minutes of bed resting and he stands up to give these readings: 184/101 HR 73. What I don't understand is that at first propranolol seems to lower systolic, but not diastolic BP ...and latet it seems to be the other way around! Doesn't make sense to me!
  22. @StayAtHomeMom I hope that you get the care you deserve from your husband! As a spouse of a POTSie, I admit that it took me some time to understand how badly my husband was feeling. If you can get your husband to read this forum, it might help him to understand you better. @sean82 I hope that you can find the right medication for you, my husband can't handle anything but low dose propranolol because of his fatigue. @haugr my husband quit Losartan, he quit testo replacement therapy too, he's really difficult to medicate, because he can't handle the side effects. Partly I understand him, because he can barely function at all and then when we add stress from a med, he's soon "on another planet". But these BP numbers are so bad that something needs to be done! Fortunately he tolerates propranolol, so when his diastolic is high up, I give him 5mg Propral, and it works. Sadly it doesn't make him feel any better. This illness leaves me baffled, it's hard to find any sense in his blood pressure, because he feels equally awful with good and bad numbers! Yesterday his orthostatic diastolic BP was 120 already after waking up, today it was normal - and he felt as ill as always. Then he took a short walk and came back with a BP 178/122, feeling the same. I read that massive rise in orthostatic BP in POTS patients usually has something to do with mast cells, so I have to study MACAS now. I have been sure that he doesn't have MACAS because he doesn't have gastrointestinal problems nor obvious allergic reactions, but who knows... He's still a mystery to me.
  23. Wow, once again excellent information! I will look into this. Thank you @BuffRockChick!
  24. My husband's standing diastolic BP is around 120! Example: he went on a 30 minute motorcycle ride, because he thinks it's less heavy than a short walk. I took his orthostatic BP after he returned, result: 176/122, HR 89. Shocked, I ordered him to lie down. After 20 minutes, his supine BP was 143/98 HR 58. This is his "normal" blood pressure. After 1.5 hours of reclining and bed rest, his standing numbers were still bad: 150/119 HR 70. I am thinking if a person has a history of high blood pressure, he tolerates higher pressures, we shouldn't panic? If you suffer from high orthostatic diastolic BP, what is your experience? Have you experienced hypertensive encephalitis or some serious consequences from hypertension? Is your eyesight impaired because of it? The impression I get from hypertensive crisis articles is that normal hypertensive people can't get their BP down simply by laying down, they even have to lower their pressure slowly with medication to avoid ischemia and organ damage! My husband's diastolic BP drops within minutes when he lies down, I assume that dysautonomia makes his "crisis" different. I honestly don't know how much of his orthostatic intolerance symptoms are due to high blood pressure and how much is due to POTS! He doesn't have headache, chest pain, dizzyness or nausea when he stands, so there are no classical signs of dangerous hypertension' he just generally feels like he's badly hungover or poisoned. The blood pressure cuff heart rate numbers are unusual, abnormally non-tachycardic, there's either a change in my husband's illness, or the machine can't catch his tachys.
  25. Thank you for the hint, I'm digging into baroreflex information right now! The virus which triggered my husband's POTS, left a big scarred lymph node on his neck, we have to find out if it disturbs the baroreflex receptors in his neck!
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