icesktr189

do you experience joint pain? i do get it occasionally but its not a consistent thing.. i do however have an open spine on the bottom of my back. its on the inside so they never did anything about it. i used to have pretty bad muscle spasms in my back but i have muscle relaxers for that.

I see that most of you have some type of viral infection or trauma that caused your POTS or you were just born with it. Mine just came on.. no flu/mono or anything. Just decided one day to. So i was looking into it and i found EDS. I do have extremely flexible hands and feets. My fingers can go all the way back and touch the back of my hand. I always just thought this was something cool to impress my friends with i have the hitchhikers thumb and i can bend my legs into pretty gross angles. How where you diagnosed with EDS? Is there anything that you can do for EDS or if i get diagnosed with it will it just be a diagnosis and really no actions i can take? thank you tons

i have had the brain fog since the day i got POTS.. it was one of the first symptoms i noticed. It truly never lets up.. I think its one of the worse side effects that i have because i constantly feel detached. Not a day goes by that i dont feel it. Those headaches that you talk about are the worst! I get migraines that make me feel so sick and so out of it that i cannot think. Gatorade helps out a lot but still that feeling is always there. Hang in there and good luck

thanks guys i dont know sometimes it can just be so frustrating when i want to do something but my body wont let me. I know all of you guys know what thats like.. Did most of you see improvement after a couple years of POTS or did it just get worse?

i dont know about your meds but i was on YAZ and i broke out horribly.. i got off and now i am clear. But the werid thing is is that i have had acne before YAZ... lol sorry if this was no help but good luck

I am only 19, ill be 20 in july. I just feel like my life was taken away when i got POTS. So now i feel like i have to compensate by pushing myself to go out with friends no matter how sick I feel. Like last night i went to my friends house and felt horrible the whole time but just stuck it out till i felt like i was going to pass out. Then i always end up paying for it later. i know the obvious solution would be not to over do it but i just feel like im so young and i just have not accepted it yet. Then when i have my good days i am just so happy that i try to fit a whole weeks worth of missing out into one day. How do all of you guys do it? I want my life to be normal as possible but everyday i just feel like i keep loosing more and more normalcy. Its so frustrating when my friends can go out and pull all nighters or go to movies and dinners and i just cant. Did you just stop doing all of those things or just do it and pay for it later? thank you

thank you tons for your replies! sorry it took so long to reply my mom has been in and out of the hospital so its been crazy here. Every time i tel my doc. he just says its anxiety.. but i will definently try what you guys said!

i am sorry if this has been boughten up before.. but i have horrible vision problems.. i am not just talking about floaters or colors when i stand, but really foggy eyes. Sometimes they are extremely dry and other times it feels like someone smeared vasoline on them. I have gotten my eyes checked many times and the doctor says that my prescription has not changed. Its very frustrating because i nevered had this problem before i had POTS. If anybody else has this problem i would love to hear

i probably go to the bathroom about 6 or 7 times a day. no joke. i never had this problem before POTS.

im 5'11' and weigh 121 pounds. i thought i was an inch shorter but i just went into the docs yesterday lol. and im pale but using spray on tanning so not as bad

Are any of you afraid of trying new medications? I have tried one beta blocker and i didnt work so well so my cardiologist prescribed me another one. That was over two months ago and i still have not taken it. i just keep telling myself that i will do it next week and that never comes. The anxiety of even thinking about taking it is unbelievable. I just get so afraid that my symptoms will get worse, or my heart will stop or go too high or whatever is the case. I guess the fear comes from me taking my first SSRI. This is when my POTS first started and i didnt know i had it. My doc. thought i had anxiety disorder, so he prescribed me 50 mg of Zoloft. WOW. That was horrible... i felt like my brain was literally melting when i took the first dose and all the blood drained out of my face and horrible heart palps with extreme anxiety. Thank gosh i had my klonopin but for the first month i was a complete zombie mess. (i just sat there and stared at walls). But this fear goes with anything. Vitamins, new meds you name it. I know i could start off on a smaller dose but how do i do that when i already have the prescription? Because i dont want to go back to my cardiologist just to get a smaller dose.. can i just ask the pharmacy for one? Also i fear that if i take a new med that my symptoms could get a lot worse and stay like that. I have came far from where i was when i first got this and i dont want to go back

i noticed symptoms when i was around years old. They were nothing compared to now.. they got a lot worse when i was in college and going to school full time, working full time and thats when I started drinking. I was also taking caffeine pills to stay awake. Im pretty sure that combo did it for me..

i know what you mean.. im 5'10'' and weigh 121 pounds. im not severely under weight but my doc thinks so. Its weird because i lay around all day and get no exercise and still loose weight. I am on birth control and that helps me gain weight also my SSRIs do too. I eat high calorie foods.

i can so relate to you.. i felt just like you did yesterday.. so out sprung that i feel like my skin is crawling. There is basically no calming down when i feel like that. i just have to wait for that feeling to pass. Some days im so tired i cant lift my head then other days im like that where i feel wired out and crazy. I know what triggers it though. When i dont get enough sleep, or too much caffiene really plays a roll in that feeling. I used to think they were panic attacks, but i know its POTS. I was diagnosed with secondary anxiety disorder. When i get that feeling i actually do have a panic attack because its such a scary feeling. BUT i know that if i did not have POTS i would in no way have any anxiety. i take klonopin when i feel that that.. good luck

i just started hydration therapy and it has helped sooooo much. Its amazing i do have a PICC line but its not like i do anything strenuous to begin with so it has been a life saver. Really look into it, even though its used as a last resort. I had to persuade my cardiologist to let me have it for 6 months. Hope you get better soon!

you sound just like me. i could not get out of bed without having a panic attack... its been a year and a half since i was diagnosed and i have had maybe 3. just knowing i have POTS and why i have these symptoms calms me down a lot

i usually dont have a problem with yeast infections but bladder (uti's) are a whole other story. i get those things like crazy! i have been on so many antibiotics for them i cant even count! i dont know if that is from POTs though.

lexapro and klonopin were great for me. But thank gosh i have the klonopin when i started the lexapro because the lexapro was really hard on me in the beggining

THank you tons momosfsara! I know what its like to loose tons of friends because of this. Thankfully i have some good ones that stuck around but most didn't understand and thought i just didnt want to see them. i cant imagine having this for 10 years! I am 20 right now and have had it for a couple years. i really hope your daughter gets better! ill pray for her! lots of hugs! !

Dont worry the anxiety is very common with dysautonomia! i used to think i was having panic attacks when really they were POTS attacks. but dont get me wrong you can still very much have panic attacks with these!

i know what you mean with the generic... because the few years back when i took it i took the name brand one and this time they gave me the generic one.. Im going to try and go back on the name brand one because that might be part of the problem. I have noticed that even on bc, there are some that i cant take of the generic version. i get a whole new variety of side effects just by doing that. Thanks a ton!

i dont know if you can take it but i found that suppositories really help me. I took them when i had my tonsil removal and they really have helped me from then on. I get so nauseated that i cant take anything orally. Im sorry your going through this i know how much it stinks when you are constantly on the verge of being sick! get better soon!

Dani, I'm so sorry you are going through this. My heart goes out to you. I've been through some major stressors and I know how that can affect us. As for your cat, I'm sorry! I have two myself. I know the other day I was listening to a meditation cd and was almost asleep and the phone rang. WEll, that did it, I was toast for the day. My heart wouldn't stop pounding. Perhaps some breathing exercises or some gentle music? I know easier said than done when you feel like you are crawling out of your skin. I'm so very sorry about your mom. I hope she's doing better now. I too take Klonopin. I can't say that it helps all that much. People don't understand our condition. You have to do what's right for you. Rest, relax, read, and you are not complaining. We're all in this together. As I sit here typing, my body is literally shaking. No one gets that. No one gets alot of things. But we all understand you! Try resting, taking a nap or just watching a fun movie. Sending you hugs, Ruekat thank you tons! the support here is amazing i know my cat always does that right when i am relaxing! lol. ive noticed that once something shakes me up it takes a whole day for me to finally calm down. thats why i dont talk to my normal family physician because he just believes i have anxiety and depression! i have showed him paperwork and a confirmed TTT and he still does not believe me! lol but he is good in other areas just not dysautonomia. I hope you feel better too! i know how much it ***** when you feel totally out of control by all of this. *HUGSs*

i bleach out my hair (my friend at a salon does it) and the entire time i have a towel covering my face because as soon as i smell that i pass out. My heart starts racing and i faint. I think its because we are so sensitive to everything. But i have had problems with bleach before POTS so now that i have it it just makes it worse

thank you tons.. someday i feel like i can get through it and accept that i have this and other days im just so fed up and frustrated. Im only twenty and i would love to be able to go to a movie again or out to a restaraunt. I just kind of feel like i am missing out on life. I know that some people are way worse off than i am and would love to trade places with me any day but i just feel a lot of resentment towards this. I am almost reaching my two year mark. (i had POTS when i was younger but it was not even close to what it is now and didnt know i had it). i just think its the stress of everything going on. thank gosh i found this website and all of you that understand