roxie

I wonder this too. I've verb exercising for a while now. I've gotten up to 15 mins a day (not all at once) but my muscles hurt so much all the time. I have EDS and that may play a part but I keep wondering when will it not ache all the time?

Jkoconne- I don't have any real advice, I'm sorry, but it does seem for me that when I go through times where I start to build a friendship canceling once or twice is perfectly accepted but anymore than that wears on people. I haven't figured out how to deal with it. I just end up loosing friends.

It depends on how long I stand. I am going with 3-5 mins usually 130-150 Now with clonidine it's been 110-130

My parents are very supportive and taking care of me. They don't want me to push myself because they don't want me to not feel well. Sometimes it's hard bc I need to push a little and my mom doesn't also take me asserting that the easiest. There is one area I feel the "don't get" is the amount of emotional pain, longing for independence, and how hard is it to be left behind in life. I've had pots for 15 years its the normal way I am to them and thy accept me as that. It's hard for them to grasp that I want things other ways. Sometimes I just want to be left alone and have my own things and my own space because I'm 27. The fact that i want to live on my own or date & married is hard for them to grasp. They take care or me SO well it's like they can't understand why I would want it that way. Just bc I have pots & eds doesn't mean I don't have a normal brain that has grown into a 20 something woman. That'd be my biggest struggle in the support area. Whenever I try to describe it my mom gets upset and says I have to choose my attitude, life's not fair. When sometimes I want to get the pain out, to feel it, and have some empathy over the fact that I was dealt junk and its especially hard to watch my brother move on and live life. My mom tells me I shouldn't be jealous of him. Why can't I acknowledge it stinks to be left out & tossed aside?

Can you use midodrine to bring up your bp?

I just started the Clonidine patch and the insert does say it can lower bp

There is a video online (it's not supposed to be on forums or I'd post it, lol, you have to google yourself) by Dr Alan Pocinicki about autonomic sleep disturbance in EDS patients. He describes it kinda like Seattlerain did with the adrenaline circuits running and running at it. I don't sleep well and when I do I wake up real sweaty, dizzy, & my heart racing I did a sleep study and saw the my HR was consistently going over 190. My cardio out me on propranalol in aug & it started to help but I didn't feel like it was helping enough. I did another sleep study nov 1 & my hr is slightly better but still frequently shooting up. It explains the sweating. My cardio was shocked that I was actually on 30 mg propranalol during that study. It shows my body is always running & has no ability to repair itself. This week I am adding the clonidine patch to my propranalol to see if it helps.

She's doing better. At least she can get around now. She says its was vertigo combined with a migraine. Ever since we moved she's been having vertigo more often like ever 3-4 months,. I kept telling her she should go to an ENT there are mediations that can prevent or lesson it when it hits but she's sooo stubborn.

I know stress makes pots worse and I'm trying not to stress but keeping it in only seems to make me worry more. Yesterday, my mom woke up with vertigo. This happens sometimes she's get severe dizziness and needntonsleep or lay in bed for the day, the next say she feel unsteady but start getting back to normal and after that be ok, yesterday she woke up it was super bad she was crying & moaning & dry heaving, she keeps insisting its super bad vertigo. She also has a strangely painful neck & back. Today she was saying she was better if she takes things slow, like she'd do something for a minute and then lay down, but then I think she did too much trying to get breakfast and is back in bed saying she also has a migraine. I'm just worried and nervous, don't know if its contagious or not but I feel offer for her and want her to get better. I don't know if she needs to go to the dr, I just want it to go away, Do you guys panic when someone around you is sick?

Thanks, Naomi

Is there something specific we're supposed to tweet? I want to, I just don't know what to say

I have this too on midodrine & florinef. I dont know what can be done, unfortunately. My dr put me on a 24 HR bp monitor & I'm waiting for him to call me with the results this afternoon. He said if the average is high that I'll have to decrease the midodrine some. Apparently it means I'm getting but why am I not feeling much better? Sorry that wasn't much help

Issie, I didn't know that. Thanks for letting me know! Right now, endo is suspected but I'm also a little on the fence of whether or not I could have mast cell?

Hey hoosier, have you started the pill yet? I see that you said you were trying to not have a period. I was at the obgyn recently &shes putting me on the pill for suspected endometriosis. The goal is to eventually have no period but she was telling me in the beginning its best to train the body to have less periods. She's given me three packs with a scheduled period. After that I'll do two in a row w/our a period and then try to go 3 months without & so forth. I don't know I'd that'll help you at all? When I was a teenager I had cysts & tried continuous bcp but ended up breakthrough blessed every 2 weeks. So I stopped. Now my this obgyn is saying the approached it wrong back then. Hope this helps.

I have this happen. I have very restless sleep. My dr did a sleep study & we found that I don't get deep sleep and my heart rate goes crazy when i sleep consistently shooting up over 150 a number of times over 190. It's like my body can't slow down & keeps making adrenaline circuits. There is an EDS dr in Maralynd, dr Alan Pocinki, who believes this is an autonomic sleep disturbance. The constant making of adrenaline stops the body from being able to rest and repair further burning out our nervous system and causing more exhaustion that needed during the day. He's found that beta blockers at bed time help to improve. It'd very much trial and error in finding which works. My dr started my on a bb on august & I am sleeping better.

Congratulations! Very pretty and encouraging rest up

I had some tests done and have very low ferritin (iron stores), vitamin d, and protein.

I think it does a couple things that can hp dizziness. Raising bp but also, increased blood volume.

Yes, I did post about a rash, I will add chilblains to list to ask my dr. I ave had the burning hands for years though. It'd be interesting if both were simple things from the bb & nothing serious (which i always worry about)

Do your hands ever turn real red and start to feel like theyre burning? Mine usually do it in the evening or when I get too warm. Ice seems to feel really good on them. Anyone know why?

I believe this blogger is from NE http://erinj0.blogspot.com And check out "Dysautonomia Friend Finder" on FB

That's really interesting sue, I'll write it down to ask the dr.

Katybug, I'm not sure about the accuracy. I was at an obgyn a few days after it started so I showed her, she did the scrapping thing and a blood test. I did have chickenpox and the test indicated that I did in the past. I'm in a new area, I don't know many dr's so that makes it harder. I have an appointment with my pots dr next week and am trying to hold out till then

I'll probably have to ask him. It's not typical hives. I keep hoping it's like a yeast rash or something that's just a freak thing

I can't think of anything new