Megan

Do you by chance have hypermobility syndrome? ( a type of EDS, type 6 maybe?) I know that hypermobility and mvp can be related...although I'm not sure how. Good question!

Meg

I'm glad things seem to be working out for you!

Meg

Congratulations!! And good luck with your appointment when it comes.

Meg

Oh, and I don't know about you, but the water keeps me from being dehydrated; I still need saline IV's every month or so. So I would suggest that you don't go too low on water intake.

Meg

With medication, I'm usually 120/70. For a while I was much higher (med dose was too high, lowered meds, went back to normal). Other than that I don't experience many changes. Is there a chance your body is somehow 'fixing' itself? Or maybe you're just going through a good period. Take advantage of it!

Meg

I just wanted to add that my mom is on synthroid...to her it sounds as if your dose is too high, causing the symptoms. (except the burning thing, but I've heard that the sun is stronger than usual right now) Just a thought and my two cents.

Meg

Praying,

Meg

I hope the surgery goes well! Praying for you and your husband!

Meg

Happy Birthday!

Meg

Happy Belated Birthday!!

Meg

Any and all POTS triggers that get me will inevitably cause brain fog...my least favorite symptom! In the heat, I'm usually okay...it's a few hours later that I feel entirely drained, so I have to make sure I don't overdo it even if I feel fine.

Meg

Congrats!

Meg

I just wanted to add that you are in my thoughts!

Meg

Yay! This makes me want to try to get some exercise in, too.

Meg

Awesome that you can swim like that! I think I could last longer in the water if I had ever actually mastered swimming properly. :-) Hopefully the new med helps you, too.

Meg

I take my meds (including midodrine) as soon as I wake up, and then I make sure I have at least an hour before I actually need to function or leave my room. And my blood pressure shot up after I'd been on midodrine for a while. I don't know if it was because my body changed or what, but I'm on half the dose I was on, and it helps without shooting my bp up.

Meg

I had mono last summer and felt awful, but it didn't lead to any worsening POTS systems that were permanent. Just while I had it was bad. I did pass out less, though, because I spent most of the time asleep. My dr. did tell me that it can take a POTS patient longer to get over mono than a normal person (and it's a long time anyway) I wouldn't worry too much, yet. It may take you 6 months or a year to be back to your "normal."

Meg

As awful as it is, I'm glad they think they've found the problem! (I'm having my gall bladder out later this summer. awful pain!)

I did want to mention, however, that there is not one blood test for lupus. My sister has it. There are blood tests that can say "probably" or "maybe" but it's more like a list of checkpoints (which you really would rather not reach) that lead to an official lupus diagnosis. Of course, in the diagnosis, other symptoms are factored in as well.

I'm glad that it's not that, though!

Meg

Stairs are awful for me. I can climb up to three stories (I did so for class; I hated the looks I got when I took the elevator), but one flight makes me have to sit for a while. We put a handrail in our stairwell at home last year and I don't know how I functioned without it!

Meg

Sorry to hear you're still dealing with crap, but glad to see you back!

Meg

Also, there's no need to apologize for having questions!!

Meg

I do not have issues with high blood pressure (except when my med dose was too high) but I'm fairly certain that others do.

Meg

I used to have trouble sleeping, but now I'm on Klonopin, which also stopped my anxiety attacks. I don't know how related it is to the POTS, as depression/anxiety is hereditary in my family, but I've found that POTS affects basically everything. I don't have any snoring issues. Have you had a sleep study? It sounds like you might want to ask your pcp about one if you have this much difficulty.

I definitely have worsening cognitive problems, ie "brain fog." I've found taking omega-3's and Cerefolin (which contains folic acid) help my concentration immensely, as does Mestinon.

I don't have problems with excessive weight gain, but I do sometimes have nausea. I think it's because sometimes there's too much blood in the stomach or not enough blood, causing the stomach to digest when it shouldn't and not digest when it should, or something along those lines.

I have blood pooling in my feet and hands, but I don't really have fluid retention in my legs. I more have difficulty retaining fluids at all.

I hope this is helpful to you. I'm guessing many of those things are at least in some way POTS related.

Meg

I just wanted to welcome you! It seems like you've had quite a difficult time. Hopefully the blood work will give you some answers and help you figure out what you can do to ease symptoms.

Meg

I occasionally have numbness. Also, sometimes after passing out I can't move my legs at all. Lying there for a while makes that go away. And while I do get numbness, mostly in my hands and feet, it usually only lasts a few hours at the most. Your post sounds as though your daughter is having constant numbness. I can't relate to that.

Meg