Delayed response when moving from sitting to standing - Bloodpressure?

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Hi there.

I have periods when my body seems to have issues with me moving from sitting to standing. Sometimes it can take up to 10 seconds before my body reacts and I can feel my heartbeats getting very strong and my head is thumping. At its worst it feels like I am going to faint... Does anybody else experience this?

It is quite a nuisance...
 
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It sounds like POst orthostatic tachicardia ( POTs) you can do a poor’s Men tilt table test ( google instructions). And know your self. If you are positive you go to see an electrophisiologyts( type of cardiology).
Is quite common to have OI in ME/CFS but good news it is treatable
 
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It is individual unfortunately you have to find the right combo per person, For me is florinef + Beta Bloker + midodrine. Some plp do great on calcium channel blockers...
Is hard and take some time, but there are at least treatments that get you very stable.
 
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It is individual unfortunately you have to find the right combo per person, For me is florinef + Beta Bloker + midodrine. Some plp do great on calcium channel blockers...
Is hard and take some time, but there are at least treatments that get you very stable.
 

Neunistiva

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It is individual unfortunately you have to find the right combo per person, For me is florinef + Beta Bloker + midodrine. Some plp do great on calcium channel blockers...
Is hard and take some time, but there are at least treatments that get you very stable.
Yeah, but for some people like me it's so severe that nothing helps enough to get us up from being bedridden. And there are very few rigorous clinical trials so it's mostly anecdotal.

So I wouldn't really call it treatable.
 
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Yeah, but for some people like me it's so severe that nothing helps enough to get us up from being bedridden. And there are very few rigorous clinical trials so it's mostly anecdotal.

So I wouldn't really call it treatable.
I was bed ridden when I got good results from OI meds (haven't been that long bedridden just few months) , but yes it is individual. Is about finding the right combo. Example = The doctor gave only 2.5mg of midodrine, and that was not enough and a neuro doctor (family friend) told me the best advice I ever got, he said if you are not stable, they do not have done a good job finding the right combo. I persisted until I could go upright a whole day (took 2 years of tinkering) but he was sooo right and I am glad I listened. Or I would of follow the first doctor horrible protocol and be bedridden still.
 
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@Seven (formerly lnester7) Just wanted to clarify you were totally bedridden (could not get out of bed) until OI meds? How long did it take to recover to being able to stand up?
I spent 3 months totally bedridden. But in and off as of today. If I am not on OI meds I would be bed/house driven.
I had to stop meds because of gastritis was bad enough that I could not suffer though the pain, so I was very bad. The minute I took care of the gastritis and got on meds I was up working on office 40h weeks. I am sure without the meds I am like a 3 to 4. With meds I would say I am at an7( used to be a 8 before my last relapse ).
 

Jackdaw

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@Seven (formerly lnester7) That’s good news to hear. Even 3 months totally bedridden would of left you very deconditioned. How long did it take you to be able to walk a few steps? Were you able to get on to a commode beside the bed or were you using a catheter while unable to leave your bed? How did you build up your muscles to be able to walk? I know the recovery from totally bedridden would be a slow one but when did you notice the meds starting to help?
 
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@Seven (formerly lnester7) That’s good news to hear. Even 3 months totally bedridden would of left you very deconditioned. How long did it take you to be able to walk a few steps? Were you able to get on to a commode beside the bed or were you using a catheter while unable to leave your bed? How did you build up your muscles to be able to walk? I know the recovery from totally bedridden would be a slow one but when did you notice the meds starting to help?
Well, I am a very over over overachiever so when I felt good, the first drug was Florinef, I walked about 2 miles day 3, suffice to say, that I crashed myself.
See the thing of OI meds dengerous is even though you feel normal at times, your AT is about the same or baseline.
So it is a complicated thing to figure your limits on meds vs off meds.
I learnt the hard way, to increase slowly no matter how well you feel, once you are on a bed/ house bound stage.
I don’t let myself diconditioned. Even on my worst I always tend to my muscles.
I ahve POTs so I am very conscious of doing something vs doing more, I prioritize my muscles ( over cooking let’s say). Now this days I ahve more issues because my joins are coming out. So I will need a PT to help me figure out new type of excercises to keep me from decondition ( I have the worst PEM ever!!!). So I have to balance PEM not crashing myself vs POTs. Not easy but doable.