icesktr189

i am having such a bad POTS day. Actually this past week has been horrible. Im pretty sure its related to my boyfriend of 5 years moving to a different state. I have such bad brain fog i almost feel like im dreaming. My nerves are on end. Literally today my cat jumped next to me while i was laying in bed and i thought i had a heart attack. Im so shaky and out of it feeling almost drugged up. This is really disappointing because this is how i was when i first got my POTS and i thought i was getting better. I just have not had a bad day like this in a long time that it really freaks me out that im going to be stuck like this. Do you have any tips for what i could do to calm myself down? I dont have anymore Klonopin so im at a loss of what to do right now. Sorry if i sound so complainy i just feel so scared right now and my mom has been in the hospital for a month so i dont have her support when i really need it

i dont know really whats going on but i experience the same things. When i am sick now its totally different than before. Some days i have a random fever while laying in bed and then a couple hours later after being out its gone. Im pretty sure its your ANS. sorry if this was not helpful but i know what your experiencing!

thanks guys my problem with midodrine is that even if i take it half an hour later than more normal time i would i totally crash. i would even be better off if i didnt even take it. i also cant handle the three doses a day. i feel all wired out by the time i hit my third one. I am really anxious to start my hydration therapy because every time i have had an IV in the hospital i felt SO MUCH better the whole day. I guess it just really ***** when you find a medication that actually works and then it stops. I can handle trying something new and finding out right away that its not for me, but when it just stops working one day it really bums me out. I guess i just need to not get my hopes up anymore. Sorry for the sob story i am just so frustrated at the moment and my POTS is worse than it has been in a couple years.

i was on midodrine a year back and i was fine with it. I took 10 mg 3/day. No big side effects and it worked. But then my doc wanted to try me on an SSRI (lexapro) to also help with my anxiety. so i quit the midodrine an started then. BIG MISTAKE. the first month was complete misery. Then as i got used to it i actually helped out a lot. But my IBS started getting worse and i had to quit that too. My POTS hit an all time worse so i tried the Midodrine again (10 mg) and noticed some crazy side effects i never had before. I can handle the tingly scalp but it felt like every two minutes i was shivering and i had major anxiety. (this was not anxiety from stopping SSRI because i waited a couple months after i stopped lexapro) I was on edge all week so i cut my pill and took 5 mg. This still had those bad side effects and i quit. I am at a loss what to do. I was on YAZ birth control and it helped raise my bp but my doc took me off that. My POTS is so bad right now i cant function and had to quit my job. Should i try and take a 2.5 dose of Midodrine and see what happens? Did any of you ever experience those effects? Also i have tried two beta blockers but they made me sooo tired. I am going to try hydration therapy in a month (waiting for insurance to approve it) but until then i need something so i can be up for more than 5 mins. sorry if this was long and made no sense my brain fog is really bad today lol

I have always known since i can remember that something was wrong. There were subtly side effects that i had always experienced like if i out did myself i would feel light headed or if i was too hot my heart would beat pretty fast but other than that i had no brain fog or severe fatigue/weakness when i was younger. i was able to go to movies or pretty much whatever i wanted to do. I drank alchohol when i was 16 (i know im dumb!) It seemed as soon as i hit 18/19 it hit me hard. I was in a car accident but my symptoms did not come on for months later. Now i have POTS symptoms 24/7. They are always present where as before they were so small that i never thought twice about them. I do remember that when i was around 8 through around 17 i would see colors if i stood up too soon but nothing bad. My point is is that i thought that most grow out of it when they end their teenage years. I am 20 and it seems to be getting worse. It came on so quickly it seemed. Like one day i was fine and felt i was coming down sick and then the POTS journey began. Sorry this is so long but im just so afraid im going to keep getting worse to the point im bed bound. I have so much i want to do in life that i dont want to miss out :/ im not trying to be pitiful but i see that some of you got worse and worse Thanks for listening!

i was on yaz for two years. I took it before my POTS came on bad and it was fine. But as soon as my POTS came on i started spotting all the time and had horrible migraines. I stopped it and my panic attacks have reduced greatly and so has my depression. I later read forums where perfectly normal people where having panic/severe depression after taking the pill so i dont just think that my POTS attributed to it. i would not recommend that one! i have stopped hormones all together because im so afraid of going through that again but my periods are so much longer now and my POTS is slowly getting worse and worse ever since i stopped ie. severe fatigue/passing out/brain fog. The bc really helped raise my bp too :/

HI! i just wanted to put my two cents in! My cardiologist said my POTS was due to my open spine. Its only opened on the inside, but he says it could be leaking spinal fluid. I also have a slight curvature. He says that i should have surgery to fix it but i only have a 40 percent chance that i will help with my POTS. im not sure if its worth it because i had my tonsils removed a couple months ago and my POTS got dramatically worse after it was done. Any help would be appreciated!

it worked well for me. I took it because they thought i had anxiety when it was really POTS (before i found out). Start with cutting does in half. I took .5 and it was pretty strong for me. But the cool part with it is you really cant freak out on it. I usually send myself into a panic attack when taking any new meds, but this one is something that will really calm you down. I took my first SSRI pill and it almost sent me through the roof but i took that right after and i was singing and dancing in the car while my boyfriend was driving me. lol GOOD LUCK!

thank you tons guys! its nice to be able to talk to people who understand what i am going through . i am lucky to have a very supportive family and boyfriend but i feel like he gets sick of hearing about it. my other main issue is that i wanted for so long to do nursing but i have no clue when the POTS will end or if it ever will so im trying to find something that i can do. right now i work with the elderly so i am able to take naps and lay on the couch all day long but any other job would basically kill me lol

i know this might be off topic, but do you feel that way in movie theatres? i hardly ever go but when i feel good i do and i feel like i cant concentrate and i get all hot with cold chills. Then my vision dims and i feel horrible when i leave

thank you! im going to try online classes again. But when i actually go into school i pass out so much that i just give up. I cant concentrate worth the life of me and i feel dumb. hopefully when i get my wheelchair i will be able to try again because this is the fourth try

My names dani. im new here but definently not to POTS. i was diagnosed a couple years back when i was 18 and ever since my life was changed. i have dealt with so many doctors as so many of you have. My biggest problem i have is brain fog. Im supposed to be in my senior year of college but i have not even started. of course for a long time i was told this was anxiety/depression and i started believing it. i do feel as though i have panic attacks but i know i would not if i didnt have my pots attacks. i feel as though i cannot concentrate and am constantly drunk. i have extremely high adreneline levels as i was tested. also my vision problems are getting worse and its not my prescription that is changing but just the POTS making it worse. Everything i look at looks shadowed over and not clear. It really gets to me. I feel as though i am not quite "all there" in my head. I guess you could describe it as always feeling as though i am high. i was wondering if anybody else experienced this? I do get extremely tachy and all those other horrible symptoms but this brain fog is keeping me out of school :/