Which Element Of Pots Makes Us So Tired?

[It'sMyLife]

Basically, that's what I want to know. Or, is it the lack of oxygen to vital organs? I stopped the beta-blocker and started Florinef and salt and today is the first day I am totally beat. I was getting impatient for my DD to take a nap so I could too. I feel so guilty over this and IDK what I'll do when she grows out of naps. I started the day off foggy-brained and yawning. Then, after I ate some lunch I was just plain sleepy. We did a little shopping at Target and DD wanted to try on shoes (she's 2 btw) so I was up and down over ten times and got lightheaded every time. I know this plays a part but how? Does it mean the Florinef and salt wasn't working this am? Thanks for reading!

ETA: As far as I know my bp isn't dropping too much upon standing-just the tachy.

[potsgirl]

Actually, it's probably a combination of all of the above, and then some. Also, you said that they think you have POTS and that's how they're treating you. Can you get a tilt table test done and verify that's really what's wrong with you and they're giving you the right amount and type of treatment? I think that should be your first step - a clear diagnosis. Then you can start to uncover what's causing what...Take care, and hopefully you can get some answers.

Peace,

Jana

[mattsmum]

I found i needed Midodrine as well as the florinef to help the tiredness. Mind you I still get tired but no where near as much.

Can take 3-4 days for the florinef to get into the system.

[It'sMyLife]

I've been on the Florinef for two weeks now. I think I had the placebo effect for the first week. Then, I started my period and crashed and haven't bounced back yet. I will probably call the doc Monday and ask for the TTT. He gave me the option and I chose to just start treatment and if I got good results we'd have our answer. Unfortunately, since I completely weaned off my beta-blocker my palpitations and racing pulse are worse than they've ever been. I want my heart rate to feel normal again, but in order for that to happen (with Toprol), I'm so much more tired. But, more than anything I want to be able to take care of my two-year-old with out starting the day off with dread and then losing my patience when she's not ready to nap.

My worst fear about the TTT is-honestly-that it will be negative. I'm pretty sure there is no other diagnosis out there that fits all my symptoms as I have searched and searched. I will have to continue life with people just thinking I'm lazy and that I'm too young and skinny to be tired of standing in one spot after 5 minutes. I will have no good answer as to why I absolutely despise cleaning up a spill on my carpet or shopping for shoes--it's so taxing on my body! I have symptoms I've dealt with for years that I never even told the doctors about because they sounded so crazy that I was sure they docs would just tell me to eat healthier, exercise and get more sleep! I felt like they would consider them non-medical complaints--and I'm sure a lot of docs do. I'm also sure everyone here already knows what that's like, though. It's not a unique complaint.

Thank you for your replies!

[toddm1960]

I was hoping to see a ton of responses to this post, my worst system by far is bone crushing exhaustion. Yes all of the others are bad to, but this is the main reason I can't take beta blockers or alpha agonists I'm so tired I can't get out of bed. The treatment makes me feel worse than the disease. Or is it there's not enough research out there to know the reason for the exhaustion? Darcy you should have the TTT done it's way better to know what you have, and I do hope you find something that works for you.

[gertie]

I'm sorry I don't know the answer but I know I feel the same way. Most of the time I feel like I'm dragging my body thru concrete. I take care of a grandchild anywhere from 4-12 hrs a day thru the week. When I was at my worst I was terrified I would pass out or have a seizure with no other adult in the house. Sometimes I would get so tired & stressed I would go to the bathroom & cry. Kids are a joy but also a lot of work.

Have you had your adrenals & thyroid checked? Hope you find an answer soon.

[It'sMyLife]

I've had my thyroid checked several times. I don't know about the adrenals. I'm not sure how that's done. I have had a sleep study done as well and everything was fine.

[ramakentesh]

Good question. I could give you a number of answers or atleast possible theories.

The first, an obvious one is because of reduced blood flow to the brain. The bloodflow abnormalities present in POTs can be present at all times, even lying down.

The increased load on the heart due to either reduced blood availability or venous return or increased sensitivity to norepinephrine has been theorised to result in fatigue.

I read one study where elevated norepinephrine levels alone result in increased fatigue and longer exercise fatigue in athelites.

There is a great study recently published by Dr Stewart on the exercise intolerance in POTs which may explain to some degree why we are fatigued - in low flow POTS the body operates the same way as in heart failure. Heart output is unable to increase and as a result the body relies on peripheral vasoconstriction to increase blood flow in exercise, starving the muscles of the lower extremities of blood.

Some theories in regards to POTS implicate inflammation. Inflammatory conditions where TNF alpha and other inflammatory markers are elevated tend to result in fatigue as a symptom as well.

[It'sMyLife]

Thank you for the great info!

[janiedelite]

For me, I get a lot more tired if I don't have on my leg and abdominal compression or if I get even the slightest bit too warm. Both things cause more pooling, and therefore less blood to my brain. I know the temperature is warming up for most of us so that might be a factor.