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Does anyone have experience with POTS disease?
Posted on 1/31/25 at 10:04 am
Posted on 1/31/25 at 10:04 am
My daughter just met with cardiologist and they are suspecting POTS. She’s got sick a little over a year ago, and ever since then she has had decreased energy, sleeps 10-12 hours at a time, has sore muscles, and often feels sick. She did have low D3 so they’ve got her on a regular dose, and have recommended several dietary changes including more salt and water. Has anyone had long term experience with this? She was in college and we pulled her out to try and focus on what was wrong. I’m hoping she may be able to pick back up next fall, but I’m worried she won’t be able to.
3
Posted on 1/31/25 at 10:49 am to Demonbengal
I don't know a TON about it, but I do know that there is a clinic in our area that specializes in CRPS and does a lot of work with POTS / EDS. They have a pretty unconventional holistic approach from what i understand, but they have a lot of great testimonials, especially related to CRPS.
It's called the Spero Clinic.
Main reason I know anything about it is that one of the doctor's kids used to be on our wrestling team, and I've sort of followed their story ever since.
It's called the Spero Clinic.
Main reason I know anything about it is that one of the doctor's kids used to be on our wrestling team, and I've sort of followed their story ever since.
This post was edited on 1/31/25 at 10:51 am
Posted on 1/31/25 at 11:04 am to Demonbengal
The POTS is likely a symptom of something else, not the primary problem. It wouldn’t cause the fatigue, increased sleep, etc. the differential is broad and she needs a thorough endocrine and rheum workup and to rule out trauma, anxiety/depression etc.
Treatment for POTS specifically is exercise she can do like a recumbent bike. May help fatigue too
Treatment for POTS specifically is exercise she can do like a recumbent bike. May help fatigue too
Posted on 1/31/25 at 1:01 pm to NewOrleansBlend
She does have EDS also. The cardiologist is working on sending her to a neurologist and possibly a geneticist as well. Cardiology does think there may be something else going on in addition to these.
Posted on 1/31/25 at 8:39 pm to Demonbengal
quote:
Does anyone have experience with POTS disease?
Like....15 years of it.
I have hyperPOTS though so never passed out. Chronic Fatigue, IBS, & Fibromyalgia have all been part of it. It's a joy/sarcasm.
Here is a great resource for Dysautonomia: LINK /
Great doctor: LINK /
She's so young....sorry about her going though this. Don't give up hope!
Let me know if I can help.
Posted on 1/31/25 at 10:56 pm to Cali 4 LSU
Thanks. I appreciate all the info. I think she is handling it pretty well so far.
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