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I think the majority of ppl have to put some effort into their recovery. With new dr & treatments including meds & exercise I have been able to make some improvement this past year, although no where near functioning. It has not come easily though I've been dedicated & worked super hard. Momtoguilana- I can't imagine 90-95% good for you! Maybe I'll get there one day

Pots really can ruin everything. I know-how you feel and it totally stinks bc there isn't an easy answer. We can only do the best with what we have. One thing I try to do is have a plan for the bad days. Things I know I like and can do without much trouble, like a movie I've wanted to watch. Or something like that to cheer me up.

Definitely let us know what you find! It may help to be clear on exactly what info you want. The first time it was "it was normal" and I had to say "I want to know my heart rate, my oxygen levels, my arousals amounts & times". Etc I wasn't given anything to sleep so I guess I don't have to feel so bad I didn't sleep, lol!

For a while I did, at the time it didn't help but I also wasnt doing it bc of POTS per say. I was 14 and had a very large ruptured ovarian cyst that bled like crazy. Since I was 14 the dr who did the surgery thought it'd be wise to surpress my ovaries for a while and try to reset them. For some reason I ended up having a period every two weeks like clock work. I only lasted 4 months on itl I really don't know if it was my age & now years later it'd be different?

Good to know 5 rem's is what's normal. I have been wondering what normal sleep is? None if my arousals were respiratory actually.

Wow kimbell that's interesting! I know the worst things with propranolol is that it doesn't last. My dr has me take it & then if I wake up, which I always do, take another one.,

I'm taking propranolol Alex. My dr has said though we can try others if needed. Peace, I dont have a problem with those. My bp is slightly lower but not drastically and my HR has always been so high it's hasn't been a problem yet. My sleep study said my average HR was 85. Isn't it supposed to drop in sleep? I also had a ton of awakenings during my sleep study. I only slept for 2 hours in the 6 hour monitoring period and I had 26 awakenings in those 2 hours.

A while ago I watched this video about sleep disturbance in EDS. Watch the video linked to here: It sounded so like me, I requested a copy of my sleep study that I was told was "normal" bc I didn't have any apnea and found my HR is absolutely insane at night & that I don't have deep sleep. A number of times my HR was over 190. My dr has been seeing this pattern in his POTS patients and has been having success with low dose beta blockers before bed. I've been on them for 3 weeks now & am starting to sleep better. It's easier to get up in the morning and I'm starting to feel clearer . If you have trouble sleeping this may be helpful!

You're really lucky, something clever! I've tried to see if the were any real wahm jobs with a goal of working towards that but I haven't found any. Traci, that's so hard. Sometimes you have no choice but to do things & feel miserable bc of it. I hope all your hard work pays off, you are so strong!

Kat- I can imagine. When my little cousins come over I also wondered how it's possible to raise kids while you have POTS. Christy- the isolation is so hard. I had no friends in HS & I still don't have very many. I wanted to be in my room all the time but my mom wouldn't let me. She limited my time in my room & made me spend the rest in the living room so I was less cut off. I'd get SO mad at her, I felt invaded. I understand the reasoning now but even now I have days I want to alone & like it when parents aren't home.

And my walks are less than 5 minutes. My goal I'm working towards right now is to walk for 5 minutes

Wow, peregrine. How do you do it??? I get up at 9, take my midodrine, get on my stockings & eat breakfast. I'm worst in the morning so depending on how I feel I just sit/watch tv or go online for 1/2 hr or so Then I do my vision therapy, I have eye problems. Rest Then I do some exercises. Depending on the day it's walking a few minutes or riding the Rec bike & small stregbth exercises. Rest some more Have lunch. For the next few hours I'll read or write or do something like that with frequent rest intervals Around 3 I do some more exercise on the Rec bike & then have to rest for like an hour. I always watch Ellen then but when I laugh I get dizzier but I can't stop watching the show, she makes me happy! Then I do some readin or writing (I want to be a writer). Or take a walk. Around 530 I have dinner Rest or read Do a few exercises Usually around 7 I'm mostly done sometimes ill go on the comp for a few minutes or knit for a few minutes here & there but other than that I sit in a recliner & watch tv till i go take a bath at 10 to help me fall asleep. A disclaimer (I guess) I've been sick since I was 12 and am still living with my parents at 27. I don't have the demands of cooking, cleaning, or taking care of children. I've always wondered how I'd ever be able to. It may sound easy that I don't have to do those things bit it's kindof awkward bc I know I'm not mentally or even physically incapable of being independent, although my body doesn't have the endurance. It can make me feel really bad & I have to remember to seperste the difference. I do wonder bow I can get to taking car of myself w/out being the maid so to speak & doing everything around the house. I just wonder as a whole how I can get to having some sort of independent life? It's what I dream of doing but really struggle with. I mean I can't even work from home bc I only concentrate for 10-15 mins before I need to rest. I can't imagine the challenges if laundry or cooking. All of you who manage are superstars!!!

Start wherever you are with whatever you can handle and build from there. There have been times where I've had to crawl of needed someone to help me walk to the bathroom. Those times I had to start sitting up. If you can only do 1 min, do 1 min be happy with it & then do another minute the next day, a few days after that do 2 mins and so on.

I have had a high ANA since I got sick. Sometimes ppl have it high & it doesnt mean anything. For me, most haven't thought much of it bc my other autoimmune indicators were normal. However, when I went to the geneticist to look into EDS he seemed to take the high ANA as a indicator towards in EDS

I take evening primrose oil pills for pms. They help lesson it but I still have more symptoms with my period

Every dr does have their own opinion. I know in the cases of POTS cause by EDS muscle tone is very important. Dr Grubb has told his patients your leg muscles are your second heart. My exercise physiologist also feels muscle tone is extremely important. It's called secondary muscle pump and the stronger our muscles are the less blood will pool bc muscle will help hold the veins up & push blood back to our heads and hearts. It may not change the ANS dysfunction but it can help lesson symptoms and in some people medication load. Ive been very dedicated to exercise since last December. I'm starting to get some muscle...finally... and when I do stand without my stockings I noticed the blood pooling is as visible but I've got a long way to go. I've been told that if my legs do get strong enough I won't need the stockings bc the muscle will be support.

I think they tend to go together. Have you ever thought of first trying some exercises in bed? Like just squeezing the muscle once & the work up to two & so on. Have you ever seen this blog post: http://potsgrrl.blogspot.com/2012/01/exercise-for-potsies.html?m=1

Thanks for posting! I really do wonder why some people recover & some don't

This is a really tough situation. Im guessing one of the reasons she dumps in you is bc she feels like you understand. I'm 27 (oh gosh, that's the firs time I've said that since I've turned it) ok, Ive been struggling with the whole being sick & feeling super behind in life. I wasn't excited for my b-day at all. Anyways, I've had pots since I was 12 & been pretty much homebound the entire time. The person i talk to the most about it is my mom. she's healthy though. I talk to her bc she's been there for me all the time. And she's the one that goes through things with me like taking me to dr's appointments and stuff. I've never had a friend I felt connected with or grasped my illness. So I talk to my mom. The funny thing here is she's the realistic one, she tells me I have to accept the things the way they are & work with them. Sometimes I just want a hug & to be told it's going to be ok. That makes me hold back in things. My mom tends to rant to me about things around her, she says it's bc i let her without interrupting or telling her to be quiet. I just sit or lay there, sometimes I don't listen bc I don't feel well. I think she knows that but she likes that I let her talk. Do you think your daughter wants you to interact with you ? Or does she just want to get it out? I know talking on the phone is hard for me so someone calling me a few times a day wouldn't be easy at all. I wonder if she just wants to get it out if some of the times she could write it out? Has she even tried it, like keeping a journal & let her thoughts flow. I'm sorry I don't have much advice. I know the mother/daughter dynamic is hard. Maybe you can find out what it is she wants from you. Is it the interaction with you OR is it letting out?

I was at my dr today too & he said with a bb you should target about 30 beats lower than your target range. So if you know you non-bb target target subtract 30

Godairyfree.org Is my favorite dairy free site

Hyperadregernic POTS can cause high bp

I'm not on any bb's but I can ask next time I go

Is there anything you can do to get your bp down when it spikes?

There are a few dr's for pots in the Dallas area. You can ask them at the treatment center or try yourself but there's Dr suleman Dr eichhorn Dr Levine