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I have some of the same problems. Mine is more at night than in the morning. I'm going to my dr next week to talk about pelvic congestion syndrome (pcs) There's some past post about it & you could google it too. Basically, the ovarian & uterine veins are too large & the valves don't work correctly pushing the blood through causing reflux. It is autonomically controlled and can be taken care of by ablation

I've just reached 14 mins on a recumbent bike at the lowest level. And i take short walks- less than 5 mins

Unfortunately, pretty much everything. It always seems like I can feel ok if I'm quiet, still, and anything that takes concentration but with a few minutes or starting to do anything I have symsptoms

All the time

I could do that. I keep a meticulous log....even though I haven't written bp's down. I could bc I have an idea of what they have been.

Mine doesn't have a memory maybe I need a new one

I would this so. As long as you gradually build up. My dr told me not to start against the wall, use mattresses, foam, & blocks to prop it to an angle, even if it's 5-10 degrees. Work in that till you can go 20-30 mins w/out major symptoms. Then go to 10-20 degrees and so on.

These aren't about me but I always thought the were funny in the context of POTS. I like the watch "the nanny" reruns & the mother makes me laugh. There was one where Fran said something about being single forever and the mother yells holding her chest "oh my, oh my, I'm having palpitations get my medicine" Fran went into the frig on got chocolate syrup gave it to her on a spoon and then the mother "ahh, that's better". If only that worked for us Then another episode Fran went to her mothers house & the mother was eating fried chicken, Fran says "ma, what about your diet?" The mother: " I did 5 minutes of a Jane Fonda tape, im lightheaded"

You can start slower. As long as you consistently build up over time. That's what's important

Does anyone have this? Where your bp is high in the dr's office & not at home. I do. Strange in pots & oi but i do. It's usually high at the dr's. I've been on midodrine the past few months & its raise my bp at home to like 115/80- 120/82. Now I'm worried what it'll be at the dr'a when I go next week. Midodrine will make it easy for it to go up. Plus I have things I want to bring up with him adding to my anxiety. Is there anything I can do? What can I say so they know it's not always high at home? I'm afraid worrying about it will make it sure but I wondering if anyone has advice?

Lol on the dating site! Thanks girls, she was harsh and that isn't even the worst. First, she has a disease herself, a form of mito. We met through a physical therapist. She's all about pushing through everything, I guess it helps mito. Like the more you do the more mitochondria your body will produce. The fact that I try to manage & pace doesn't set well with her and give me a hard time about it a lot. She told me heaven was weeping over my wasted life, That did me in, I don't need to hear that when I get up everyday and try to do the best I can with what I have. You'd think someone who struggles with their health as well would be more understanding but that isn't so in this case.

Welcome Amy! Can I ask what you mean by slightly under pots diagnosis from autonomic testing?

I'm not well enough to date either. I hardly ever meet guys. Like I mentioned above someone made some pretty cold comments last week and part if it had to do with dating.... Yours 20s is for dating & experimenting, if you just got out there started dating it'd change your life. Uh, what if you can barely get through the day? She said i needed to figure out why I'm not dating. Oh maybe bc there are no guys knocking on my door at m parents house! I keep trying to tell her it's not my fault. But she wont take that. Apparently if multiple guys are askig for your number your worthless. For the record, the other day I cut this person out of my life. She said some things that pushed me over the edge. So now I have my parents, you guys, & a few occasional email buddies

I wish I had great words of advice, I'm sorry I don't but I'm in the same boat. I turned 27 this week and it was so so hard. It still is hard. I've had pots since I was 12 . I'm still living with my parents and I feel pathetic and emabressed. It's not that I'm lazy, its that my body is obstinant but I feel like others don't understand. Someone this week made some pretty harsh comments to me and they are hard to get out of my head. I see people posting that there are many others in similar situations here, really? I had no idea. I feel so alone but its nice to know I'm not.

Dr's have to be smart but they are so idiotic! I say try to find a good interventional radiologist or nephrologist to look at it. It says nutcracker syndrome can cause POTS on the dinet page

Watch the video this thread links too, it could explain what's going on & how to help

@kellysavedbygrace- my dr I'd having me start super slow. He says only till symptomatic and then stop. As time goes on you should be able to add time. Actually I'm not even up again the walcyet, just tilted mattresses & I'll try to improvise from there

I'm in!

I'm doing it!! My dr is directing me and is having me go slower than some, my first goal is to build up on my exercising, but I am doing to none the less. He'll tell me when to really start pushing that as my #1 focus. Good luck

I eat 5-6 times a day. One of the best things I did for my stomach was remove ALL dairy. My dr also gave me digestive enzymes. I try to gauge how im feeling before I decide what to eat. If its bothering me I eat something bland like an egg or a banana Usually in the morning I have either a protien shake or protien muffin. For lunch, a lot of times leftovers or 1/2 sandwich or an egg. Snack- nuts or fruit Dinner- my mom meat and a vegetable & fruit Snack- banana or nuts or smoothie My dr told me once I could put anything in a blender to make a smoothie, even meat if purée is easy to digest. Usually it is.

Maybe the weights are too much, right one? My exercise physio has me doing the recumbent bike too but not having me add any resistance until I can do it consistently for 20 mins. I've just gotten to 12 mins. Maybe you need to take a few mins break in between do intervals. He has me doing 6 mins, rest 1-3 (depending on how I feel) and then 6 more gradually adding up

What kind of exercise are you doing? I'm very sensitive to exercise too and had to start out super small, kicking my legs in the bathtub while monitoring my HR. There's lost of ways to exercise. Can you do leg lifts laying down? Things like that.

I have. I think it's a nice tool to have and everyone's experience with it is going to be different just like and medication or treatment. It can be really relaxing. It can help with headaches and pain, at least it has some for me. some people have a wonderful heart rate response where it lowers there heart rate. It takes an awful lot of concentration.

Thanks! This is interesting. When I read the section on POTS in Dr Tinkle's EDS book he mentioned that POtS tends to hit earlier when their is EDS than when there isn't.

Ugh, I so feel for you Dani & chamredlinz. Keep us posted. I have a vaguely similar situation. For a long time I had a specialist and a pediatrician. The specialist always referee everything to my pediatrician, who never really believed POTS but my specialist kept insisting hes a good dr. In a smal town you don't have much choice. So (this was like 10 yrs ago) my specialist had me do a contrast MRI for my spine. My ped said it read fine. When I turned 18 I had my records turned over to a new dr, my mom read the MRI report which said I had numerous spots on my ovaries and pelvis, like 3-4 . It said they'd assume ovarian cysts because of I have a history of them. Plus I had a 6 cm spot between my the top of my uterus & bladder.... They decided to call that a cyst too. Doesn't that sound strange? Bladder & uterus....must be an ovarian cyst even though it's not on your ovary???? Ive been being treated for gastroparesis is improving some but any pain below the belly button isn't. In passing my newest dr mentioned pelvic congestion syndrome. In the past few months I've realized below the belly button IS pelvic pain and although it's always been written off as IBS my instinct is saying it's not. I'm going talk to him when I go next week. The worst pain in my stomach is right where the bladder & uterus are. I'm guessing that 6 cm mass is still there & it makes me so mad. I've been reading about pelvic congestion & its also the area of the largest ovarian vein, the one that runs from your heart to the ovaries.....could I have a massively gigantic ovarian vein???? Any who, I'm trying to find out now that I have a dr who listens and will refer me to ppl that can help. Good luck guys.