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Can a POTS flare trigger odd thoughts and moods?


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I've been having a very hard time lately with what I'm now understanding is a bad POTS flare. My joints hurt, I'm having GI issues, fainting spells, horrible pains in face and head, etc. I have appointments scheduled with Dr. Grubb soon, but have seen another cardiologist and PCP, who gave me little to no help.

The cardiologist gave me yet another tilt table test that landed me in the ER because of tremors after it, and a huge bill, but then never followed up with help. 

The PCP told me pains in my joints and face, along with GI issues don't fit the POTS profile and has me going to see other specialists. 

All of this has left me feeling very defeated, mentally unstable as if I'm making it up, and scared. Working is becoming difficult, and it's been a month and no word back from my employer on ADA accommodations and FMLA. They're backed up because of COVID-19 they say. 

At this point I'm very down. My thoughts turn to having this life where I will never feel well again. And wondering if it is all in my head, if I just tried harder to feel better I would. I'm just feeling very lost right now. I'm also wondering if the physical flare is causing my emotions to be wonky as well.

Has anyone else felt like this, and how did you get through it to feel better?

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Your PCP doesn't know jack, don't take anything he says to heart. You can have all sorts of seemingly unrelated issues that are caused by POTS, or one of its comorbidities. Unfortunately, it can be hard finding doctors who are knowledgeable, but don't give up until you succeed. I can tell you 100% your symptoms are NOT in your head, you can't will your way to feeling better, and trying harder often will just make things worse. 

I, for one, am extremely affected emotionally by my nervous system. If I'm in a flare, if I have too much of this vitamin or that mineral, if I'm under severe stress, if my hormones are swinging - all of these things can send me into spiraling depression or panicked anxiety. Or both. When I'm balanced, I don't have these emotions. This year I've been struggling a ton with my emotional state. Last year at this time I was in the hunt for a new PCP and feeling very much the way you are now. I know it's hard, but hang in there and keep trying, it will be worth it in the end. Don't be afraid to dump doctors who don't believe you. 

For now, take extra care of yourself. Stay hydrated, get enough salt, strengthen your legs and core, rest, and do what you can to reduce your pain and give your nerves a break. Self care is the priority in a flare. Hang in there!

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1 hour ago, KaciCrochets said:

Your PCP doesn't know jack, don't take anything he says to heart. You can have all sorts of seemingly unrelated issues that are caused by POTS, or one of its comorbidities. Unfortunately, it can be hard finding doctors who are knowledgeable, but don't give up until you succeed. I can tell you 100% your symptoms are NOT in your head, you can't will your way to feeling better, and trying harder often will just make things worse. 

I, for one, am extremely affected emotionally by my nervous system. If I'm in a flare, if I have too much of this vitamin or that mineral, if I'm under severe stress, if my hormones are swinging - all of these things can send me into spiraling depression or panicked anxiety. Or both. When I'm balanced, I don't have these emotions. This year I've been struggling a ton with my emotional state. Last year at this time I was in the hunt for a new PCP and feeling very much the way you are now. I know it's hard, but hang in there and keep trying, it will be worth it in the end. Don't be afraid to dump doctors who don't believe you. 

For now, take extra care of yourself. Stay hydrated, get enough salt, strengthen your legs and core, rest, and do what you can to reduce your pain and give your nerves a break. Self care is the priority in a flare. Hang in there!

Thank you!

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12 hours ago, Potsygal said:

The PCP told me pains in my joints and face, along with GI issues don't fit the POTS profile and has me going to see other specialists. 

That is nonsense. GI issues pretty much always come with POTS, they are part of the package. And when I started with POTS symptoms I also started with generalized joint pains. Until recently I did not really know why they are listed as a symptoms of POTS but now I know that it has to do with autoinflammation. When I flare I also get the joint pains. NSAIDS do not seem to help me but a week of steroids completely stopped them ( except the tapering off caused a flare ). So there you have it - I agree with what @KaciCrochetssaid: he doesn't know jack! --- Sorry you are so bummed out, I know how that feels. Just take things easy, rest up and know that this too will pass. 

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Have you been checked for hypermobile EDS?  Joint pains (the ones in your face could be TMJ) and GI issues are pretty common in hEDS and I think something like 70% of EDS patients also have POTS.  I always knew I had bendy joints (my party trick was doing the namaste behind my back) but I'd never heard of Ehler Danlos Syndrome.  The first knowledgeable POTS doctor I saw (I'd seen 2 other cardiologists prior to him) took one look at my hands and referred me to a rheumatologist who knew a bit about EDS (I'd seen 3 before that who completely missed my EDS as I had no family history).  He did the Beighton test on me, looked at my funny scars, my stretchy skin and my medical history and diagnosed me with hEDS.  

Weirdly although there is no cure for hEDS and I've not responded to any POTS treatments, I feel better knowing what's wrong with me.  So many doctors dismissed my issues as being all in my head that like you, I started to wonder if they were right.  Believe in yourself, it took me nearly 20 years to get a diagnosis but I never stopped looking.  And try to find a new PCP that supports you!

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9 hours ago, Pistol said:

That is nonsense. GI issues pretty much always come with POTS, they are part of the package. And when I started with POTS symptoms I also started with generalized joint pains. Until recently I did not really know why they are listed as a symptoms of POTS but now I know that it has to do with autoinflammation. When I flare I also get the joint pains. NSAIDS do not seem to help me but a week of steroids completely stopped them ( except the tapering off caused a flare ). So there you have it - I agree with what @KaciCrochetssaid: he doesn't know jack! --- Sorry you are so bummed out, I know how that feels. Just take things easy, rest up and know that this too will pass. 

Thank you! I'm glad to know I'm not alone in how I feel. 

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3 minutes ago, cmep37 said:

Have you been checked for hypermobile EDS?  Joint pains (the ones in your face could be TMJ) and GI issues are pretty common in hEDS and I think something like 70% of EDS patients also have POTS.  I always knew I had bendy joints (my party trick was doing the namaste behind my back) but I'd never heard of Ehler Danlos Syndrome.  The first knowledgeable POTS doctor I saw (I'd seen 2 other cardiologists prior to him) took one look at my hands and referred me to a rheumatologist who knew a bit about EDS (I'd seen 3 before that who completely missed my EDS as I had no family history).  He did the Beighton test on me, looked at my funny scars, my stretchy skin and my medical history and diagnosed me with hEDS.  

Weirdly although there is no cure for hEDS and I've not responded to any POTS treatments, I feel better knowing what's wrong with me.  So many doctors dismissed my issues as being all in my head that like you, I started to wonder if they were right.  Believe in yourself, it took me nearly 20 years to get a diagnosis but I never stopped looking.  And try to find a new PCP that supports you!

I haven't been formerly checked, but I can do all but one of the test markers for hEDS. All of this is just hard to handle. I want a life back. 

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