It'sMyLife

Thanks so much for asking! The fatigue doesn't seem to be what it was the first day, but am still having a POTS flare the first half of the day. I stayed up late watching a movie with DH so that's probably contributing even though he got up with our youngest and let me sleep in. I'll try getting better rest and see if it helps.

Thanks so much!!

Yup. Female, 5'8", 125lbs This is the most I've ever weighed not including pregnancy and first year of breastfeeding.

I was just prescribed Plavix for AFib and a possible atrial septal aneurysm (still have more testing scheduledfor for that). I took the first pill last night and was ready for bed much earlier than usual and had a more difficult time than usual waking up this am. I've been sleepy all day as if I'd taken a sedating antihistamine. But, it got worse with a POTS flare after my shower which also resulted in a crazy miserable bp of 115/100. It improved to 119/90 after lunch, but I still don't feel back to normal. Anyone else have issues with Plavix or other anticoagulants in general? Is this something that might taper off as my body adjusts? I can't go on like this for too long, especially with no hope of improvement. My cardio is fairly knowledgeable with POTS which I'm grateful for, but it's not one of the things he specializes in so I'm not sure be has many patients with POTS. I'd guess I'm probably one of his first "Plavix and POTS" patients.

I noticed the most recent reply was three years ago. So, maybe someone will have some more insight now!

Yes! I found this thread doing a search for "B vitamins + dysautonomia" to see if there is anything reported about them being incompatible. Every time I try starting them up I get palpitations, presyncope, and a sensation that my POTS is flaring up, but vitals are pretty normal. I'm trying again, this time titration up hopefully. I suppose there's the possibility that we have an MTHFR mutation and we've been compensating for the lack of methylation so long that our bodies don't know what to do with the influx of B vitamins. But, I've never been tested for it. I just know I have been on PPI's do so long that I worry about the poor absorption of B vitamins. Though, my recent labs had me on the low end of normal for folate and B12. I'm hoping to figure it out soon! I've always wondered if the vasodilation from some of the b vitamins could be a culprit. Idk.

Did you end up staying on the Viibryd? I just started the started pack about two weeks ago. Still sorting out the side effects and hoping they diminish soon or I don't think I'll be able to stick with it.

I take Bystolic 5mg once daily. It works very well for controlling the hyperadrenergic POTS symptoms for me. The only drawback is the daytime sleepiness. I know it's the med and not the POTS causing this because I had to stop the beta blocker for the first trimester of my pregnancy and just went back on it when I started the second tri. As soon as I went back on it that desperate need to take a nap after 12 o'clock struck again. It's not just fatigue, it's pure sleepiness like I wasn't allowed to sleep at night. While I did feel just terrible without the medication in my first trimester, the one thing I did not experience was this extreme sleepiness. So, to get to my question: When do you find is the best time for you to take your beta blocker to combat the sleepiness it causes? Right now I am taking in in the morning. I used to take Toprol XL at bedtime because the side effects were even worse. I do not remember now why I started taking this one in the morning. I want to say maybe it's because I had trouble waking in the morning if I took it before bed, but I have trouble waking no matter what now. Thanks for reading!!

I was hoping Ramakentesh would chime in. I got some great info from him when I posted asking about this over a year ago!

I'm excited to see this article as I have Hyper POTS. Would anyone mind telling me how I can get my hands on a copy of the full article?? Thanks so much!

This condition of the tongue is called migratory glossitis (aka geographic tongue). My husband has it and does not have dysautonomia. Just some info for what it's worth.

The bottled waters with fluoride don't have any more fluoride than tap water. It's safe if that's what you're worried about.

Thanks again everyone! The reason I do not think it is food allergies is because I have done a lot of research on food allergies and it just doesn't feel like it fits to me. My daughter has non-IgE-mediated food allergies (dairy, soy, tomato, eggs) so I have done a lot of reading on the topic. It sounds likely that I would since an imediate family member does, but I'm just not feeling it. I know it wouldn't hurt to try and elimination diet though, but it so incredible hard as it is to feed my daughter her diet. If I had to prepare two separate diets in order for us to both get the nutrition we need, I just don't know what I'd do. I guess I could have mentioned that besides the eggs, my breakfasts usually never include my daughter's allergens. Most of the time I'm at home in the am eating with her. It is true though that when I was nursing her I did not eat any of her allergens and my POTS symptoms did not flare back up so badly until I weened her (at 18 mos) and my periods came back regularly as well. I guess there's only one way to know if it is the menstrual cycles or the food that caused that reaction.

Thanks everyone! I have thought of sewing my own. But, by the time I buy durable yet lightweight fabric and finally get it sewn (on the rare occassions I have time to myself away from my 3 yo) I'd be out almost as much as the total cost and Summer would be close to over! lol

I saw some really nice vests online but just can't afford them right now. Does anyone know where I can find one cheaper than that or perhaps a used one?