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Clueingforlooks

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About Clueingforlooks

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  1. @Pistol Thanks for replying, I haven’t tried an ssri so far, I’m sensitive to a lot of medications I’ve been wary that it might flare me up even worse and I’m already pretty weak. I do movement as much as I can but I’ve been going downhill a lot recently feels exhausting to even eat right now. My fight or flight getting worse has got me into this fatigue hole I think. Thanks so much xx @PotsieCrocheter
  2. Sorry to hear you struggle with daily fatigue too, if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. Yes I try and sit up in bed all day/as much as I can, but recently I’m more exhausted/tired and well as fatigued so it is hard. Good to hear that it’s helping though. And I hope it can can helping you, it’s hard to tell sometimes if something is making a difference or not. That’s a great idea! Although even doing arm movements for me sometimes just feels like too much, but I do things here and there if I can.
  3. Thanks, hopefully I can get my gi and fatigue to calm down soon! To be honest I practically feel like I’m in a never ending flare whatever I do IV fluids used to help me but now they overstimulate my system (even running slow).
  4. That’s good you’ve found some things to help your nausea! Hope I can eventually find something that helps enough, I have tried ginger candies and tea before. oh nice! It’s the worst not having the energy to put compression on even though they can help. I’m struggling so much with fatigue lately, too tired to even talk or move. But my vitals look fine at the time. I know I need to rest some of the time but I’m having to rest/do nothing everyday and being too fatigued to function is not getting me anywhere.
  5. Tried numerous anti nausea meds and even IV Anti nausea when I’ve been in hospital but nothing makes a difference 😕 xx
  6. Thanks @PotsieCrocheter it definitely is frustrating! If my stomach wasn’t so sensitive between having gastritis and acid reflux AND nausea I think I would be able to hydrate better and hence feel a bit better with my pots e.g. a dash of cordial usually helps me but hurts my stomach now along with other electrolyte drinks. Yes I our bp can be all over the place! I guess my main problem is that my bp can get quite low at night 75/45 at the lowest and then even if my bp is acceptable I still end up feeling pretty faint during the day and can’t think straight. The docs I’ve been to have been useless about it 😒
  7. What have you been treated with for your POTS? I’ve been on fludro and propranolol for agesss (and at differing dosages) but my bp and adrenaline are all over the place now and haven’t been able to control the reflux/gastritis. I’ve also tried midodrine in past and can’t tolerate it anymore.
  8. @outofadream how are you going now with this? I’m struggling with the same thing and my ppi doesn’t help me enough anymore xx
  9. Yes my ferritin levels were checked in the same blood test and they’re definitely all good. I didn’t have my b12 checked this time but in the past it’s been good (and I’ve had this high MCH for quite a number of past blood tests too). Next time I have bloods I’ll get b12 checked again, otherwise I guess it’s just the way I am.
  10. My MCH is always just high out of range but my doctors have never mentioned it and I’m not anaemic. Would that be part of the thick blood problem too?
  11. @issieTotally understand what you mean! But it seems that Florinef makes me both better and worse off at the same time. Like I’m bad either way if I bump up my blood pressure with salt or more florinef my adrenaline is actually worse not better even though it’s stopping my blood pressure dropping as much. So I’m unsure where to go from here.
  12. Hi @issieI can relate to this! The first few years of having pots I had not trouble with salt and was put on Florinef which did help symptoms. But the last 3 years has been a struggle, I’m still on florinef but now consuming salt makes my adrenaline way worse and I sometimes get pain in lower back. I’ve tried reducing it but my bp goes too hypotensive and my fatigue/brain fog gets way worse. Very frustrating and all the specialists I’ve been to have brushed me off. My resting bp is low but my adrenaline gets bad at the same time.
  13. Thanks for getting back to me. Still struggling unfortunately, feeling really faint like I could pass out but my bp is ok. Had some electrolytes the other day and it made me feel even more nauseous with adrenaline still can’t seem to win. I’m tired of this, nothing I do seems to help.
  14. That’s good to hear. And also good to hear that slowing the fluids down helps your sister!
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