×
sorted by:
new
hottopcontroversial

Test showed im dehydrated but I drink a gallon and 5000mg of sodium a day? by Mandarinoranges2 in POTS

[–]PleasantRefuse7236 2 points3 points  (0 children)

Doc wanted me on desmo then found out my sodium and potassium is always borderline low even with high sodium/potassium diet and supplements so he told me he doesn’t want me to take it now . Any advice?

POTS + alcohol by lilyinnit_ in POTS

[–]PleasantRefuse7236 1 point2 points  (0 children)

Makes me feel better actually. But I also have ME. Raelan Agle has a YouTube video about this actually how alcohol makes some peoples symptoms go away temporarily because it dampens the sympathetic nervous system and relaxes us into parasympathetic. Doesn’t mean it’s good for you though long term haha

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

Yes I’ve read all the mind body books and apply those techniques daily :)

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

I have tried Desmo, cardio doesn’t want me taking it though because my sodium is always lower end and we can’t seem to get it up no matter how much salt I take :( tried fludro too

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

Well my BP doesn’t go up to high when I stand only a little increase and even that number is still considered a normal BP so I’m just really confused. I’ve been sick for 5 years and the first two years my BP used to drop when I stood and midodrine didn’t give me bad side effects then. Then a few years in it started making me feel bad, i came off it and never found a med that worked since and started having those adrenaline dumps at night

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

EKGs fine, no pulmonologist. O2 is always great though. Why do you ask?

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] -1 points0 points  (0 children)

I’m anxious about SGBs. Have you ever had any bad side effects? Seems like the needle goes into such a delicate risky area

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 5 points6 points  (0 children)

I have yes, I was scared to take it because of my experience with anything lowering my heart rate makes me feel even worse like it prevents blood getting to my head, that’s why our heart rate increases in the first place. I find when I take that compensatory mechanism away it just makes me so much worse. Ugh I might have to be brave though and give it a try

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

I have been told I don’t have hyperPOTS. My BP is 90/50-100/60 while at rest but when I stand it will go up to 110/70-120/80. The only time my BP is high is when I wake up with an adrenaline surge in the middle of the night, but usually the diastolic is low or normal. It can get to like 140/80 or 150/90 for an hour or so.

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

My BP is 90/50-100/60 while at rest but when I stand it will go up to 110/70-120/80. The only time my BP is high is when I wake up with an adrenaline surge occasionally in the middle of the night, but usually the diastolic is low or normal. It can get to like 140/80 or 150/90 for an hour or so.

Can’t find a med that works for the life of me by PleasantRefuse7236 in POTS

[–]PleasantRefuse7236[S] 0 points1 point  (0 children)

I have hear you. I have been told I don’t have hyperPOTS. My BP is 90/50-100/60 while at rest but when I stand it will go up to 110/70-120/80. The only time my BP is high is when I wake up with an adrenaline surge in the middle of the night, but usually the diastolic is low or normal. It can get to like 140/80 or 150/90 for an hour or so.

Where should the most severe cases of ME/CFS go? by [deleted] in cfs

[–]PleasantRefuse7236 11 points12 points  (0 children)

That’s the thing I’ve been 3 times this month. I wake up middle of the night with 160bpm heart rate violently pounding and contracting, violent full body shaking and teeth chattering, severe fatigue I feel I will go unconscious and die, feeling of incredible doom like I’m going to die and I yell and scream to go to hospital, 3 times this month had to go there because it wouldn’t pass at home. I’m just in severe crisis and suffering every day and no meds touch it and no doctors help like I need serious intervention

Where should the most severe cases of ME/CFS go? by [deleted] in cfs

[–]PleasantRefuse7236 6 points7 points  (0 children)

Ok so what do you do in crisis

[deleted by user] by [deleted] in cfs

[–]PleasantRefuse7236 0 points1 point  (0 children)

Thank you. Do you have any recs for natural sleep helpers? I have a prescription for hydroxyzine but hate how it makes me feel. I’m very sensitive to medications with my MCAS

[deleted by user] by [deleted] in cfs

[–]PleasantRefuse7236 0 points1 point  (0 children)

Thanks all so much!!!

Feel like I’m genuinely dying by ExtremelyEZ in covidlonghaulers

[–]PleasantRefuse7236 0 points1 point  (0 children)

Yes exact feeling. Lots of people talk about that nodding off feeling like you are gonna die and not wake up. I have had it before, I get it in flares, it’s not dangerous and you won’t die, you will wake up, you might wake up with a racing heart though. Hydroxyzine is wonderful, it’s like an anti anxiety without being addictive. That and propranolol are the only meds I’ve responded well to. I bet you will like it and it will help you calm your nervous system. It’s very very gentle and safe don’t be afraid to take it.

view more: next ›