icesktr189

where do you get yours? i just got the walgreens kind that are waist high and i think they were only like 30 bucks. they dont work all too well

did you have POTS before october 2009 or just got it then? i am asking because when i had my initial POTS crash, it literally took me about a year even with meds to become stable. The begining of getting POTS was the worst for me. try driing TONS of gateraide

So i saw my cardiologist and he is frustrated with me because i am pregnant. So basically he cant do anything for me till the baby is born, but he is handing me off to a neurologist. he gave me a referral to one, but i dont see the point. i have had POTS for 3 years and never have gone to one. mainly because i managed my symptoms by myself up till now when they are horrible. what do i say to the neurologist? i really dont know what they can do for me.. let alone if they can do any tests while i am pregnant. i do know i have an open spine on the inside of my lower back. so basically when he sees me, what do i say to him? " hi i have POTS, please help me?" haha. i really hope they know what it even is in the first place!

yes i totally understand what you mean! but i am 8 months pregnant so that could be making things worse for me. Half the time i sleep just so i dont have to deal with the dizziness. Also i am finding that water and gateraide are not helping like they used to. but good luck on finding something that helps!

i could not handle midodrine.. as soon as my dose wore off i got massive migraines. also i felt very shaky on it too. i know the tingly scalp is normal, but i would get head rushes which would bring on a lot of anxiety and make my symptoms worse

i would give the med a try but just watch him carefully.. if you notice any abnormal activity ie depression/anxiety then call your doctor. but you never know how he will react till he tries it.. good luck!

thank you tons for that post. it has taken me awhile to "accept" it. it just stinks when you keep questioning if that one thing did it for you.. i know i cant change anything now but I wish i could on some days! i just want to kick myself for even trying it.. i mean people actually die from it so i got lucky, but it was really dumb on my part. good luck and god bless you!

o yes this is one of my most bothering symptoms. I tend to have brain fog 100 percent of the time, but if i get lucky and dont have it i still have messed up vision. I have had my eyes checked so many times and the prescription has not changed. it looks like i have Vaseline smeared on my eyeballs when i see. half the time i cant focus my eyes or one pupil dilates and the other does not. it drives me crazy! and i have this no matter if i am dizzy or not

just another warning.. my brother who is 19 used to take adderal for adhd.. he does NOT have POTS. he became very suicidal..also he started passing out and he has never had that problem. they even gave him a small dose. just be very careful and moniter your son if he does decide to take it.. it can really help but i does have some pretty severe side effects.

speaking of stimulants.. now please no judging if in anyway i could take this back i WOULD. actually everyday i wish this was the one thing i could change in my life. But i feel that the reason i have POTS this bad now is because i tried ecstacy a couple times. i know i had POTS symptoms when i was younger, but after doing that drug withing 2 days i had a full POTS crash. I really hate myself for being that stupid.

i had the halter monitor for about a month.. for me it was more a pain in the butt than a help mainly because when my cardiologist gave me it i already knew i had POTS! by the time i was done with it, he just looked it over for about a minute and told me that it was POTS. i just felt angry because i put so much TIME into it and he just says a couple words. i mean i didnt know what to expect or how to react but i though he would have gone over it or something but o well but if you DONT know you have POTs then i would def. give it a shot!

hi! thanks for the replies! o yeah i have had my iron levels tested so many times and they come back normal.. but i was thinking that they were off too! I am having a baby girl! Her name is Sydney and she is due on March 10.. i really hope i do get lucky and its easier after birth because from what i heard a lot of people have problems with it. but i also heard a lot of others that had a great pregnancy and mine has been really up and down.. especially the first and third trimester. so a question about the epideral.. should i be worried? there is no way i can go without one, but I heard that it drops your bp which i dont think will be too fun for me haha. i also was reasearching a lot and im pretty sure i have the hyper POTS.. only problem is my docotor wont really dont any testing until i give birth. so for now its a speculation but that kind makes way more sense to me with all my symptoms. thanks again!

im not sure but i know a couple years ago when i first came down with POTS i tried zoloft and i HATED it. it made me feel so loopy and crazy adreneline surges. Lexapro was a lot more mild and i liked it a lot more. dont give up i went through quite a bit of SSRIS before i found the right one. i used to cut my pill in half and take one half in the morning and the other at night. I had a lot less side effects in the beginging from doing that. good luck!

So im 8 months pregnant now! so excited to be a first time mom, although my POTS is the worst its been since the POTS crash i can barely see straight and sleep all day long. i have no clue how i am going to muster up the energy to give birth! seriously they might have to do a c section because i have 0 energy.im really hoping this gets better so i can put the babys room together. my fiance wants to do it for me but ihave been looking forward to it for so long. really just nervous about birth and after.. any good tips or suggestions? i heard the epideral decreases blood pressure which doesnt sound too good to me

thanks tons everyone! that really calmed me down a lot! too bad i have been feeling horrible.. lots of headaches.. severe dizziness and brain fog.. basically the whole "POTS works" LOL so from what i heard its going to be pretty bad after birth? I am going to have tons of help but i just feel so horrible. I dont know how i am going to muster up the strength to give birth. i am honestly not even afraid of the pain, as i am of the lack of energy and out of it feeling i feel. My tachycardia has been really bad lately, but i just got an ecko done today and it looked good. But thanks for listening to my ranting! i just cant wait for that day to come where i have my normal POTs back.. its just so scary because i dont know what to expect and everyday gets harder and harder.

thanks tons! this really does put my mind at ease! its just nerve racking def. knowing most of the time i dont get enough oxygen.. can tell by my symptoms.. and then now having to worry about the babys. (which is all i really care about now )

Hi there! i am now 6 months almost 7 months pregnant. I am a bit worried though.. my POTs has gotten worse day by day (brain fog) especially. But i am worried for the baby. I was watching mystery diagnosis (the show) about POTS and the woman lost her baby at 6 months because it did not have enough blood flow or oxygen.. this really scares me. I can handle the POTS but i dont know how the baby does? should i be worried?

thanks tons! in the past year i have put off testing and just dealt with symptoms, but now i am pregnant and want to rule out issues i might have

oh yeah my cardiologist did mention that open spines sometimes tend to leak spinal fluid.. if it is constantly leaking it could definently be a problem especially if you experience migraines on a daily basis. It could potentially have a cause for POTS but i dont think they have proved that yet. I never got a check because he told me even if the open spine did cause my POTS, even fixing probably wouldnt fix my symtpoms.

I never really looked into my open spine more.. i had an x ray done when i was younger.. wish i could be more help i dont know what its called but they told me that the spine was open on the inside instead of the outside and said i didnt need anymore testing because it should not be a problem for me... ill probably end up going to a neurologist and get it checked out which i should have done a long time ago.. i used to get pretty bad back spasms and pain but they have supsided in the past couple years so i pushed the issue out of my mind. maybe this has been causing my POTS the whole time?

it really helps knowing many of us experience this.. i mean as if having POTS wasnt enough, we also have to deal with anxiety! i just never bring this issue up with doctors because they will blame it on POTS or anxiety or visa versa. I just hate being told its in my head.. I told my doctor one time that of course i would have some anxiety.. i mean one day our lifes are completely taken away and turned around.. any normal person would feel some anxiety dealing with this. No matter how long someone has had POTS we are not totally certain of our futures with it and its a scary thought. i get anxiety because when my syptoms are very bad, or i have a new one i have never experienced before, i have to make that decision whether or not to go into the er or just to see how it goes. Its just so scary because most of our syptoms at our worsts are also syptoms of heart attacks, strokes and so forth. I know its always POTS but i worry about if it could be more. Im trying to handle my obsessive ways (which i was never like before POTS).

My anxiety attacks differ from POTS because when i have an anxiety one i also have metal stressors. I feel like my life is ending or i am going mentally crazy.. i can get these whenever.. lying in bed, doesnt really matter what im doing.. i do know my triggers such as crowded places, unknown places or traveling. i also hate being alone. My pots attacks i generally feel anxiety, but not to the point where i feel like im going to die. I will definently have to look into a therepist.. i mean most people with a chronic illness are more prone to anxiety/depression. Im still under my moms insurance so its hard to convice my mom to get me one when she believes this is all from POTS. i mean yes i wouldhnt have any anxiety if i didnt have POTS but i feel even if POTS did just magically go away i would still have my anxiety disorder because once you have it, its pretty hard to get rid of..( my grandma had it for 40 some years and became agrophobic)

ill definently check into the migraines.. never have been checked for that.. thank you all its just so nerve racking because this is my first pregnancy which is scary for anyone and then i have POTS problems with it. I just really didnt know what to expect. i also read that epiderals could be bad for someone who has nervous system problems?? i also have an open spine on the inside which i have never looked into.. i just know they diagnosed me with it was i was young at like age 12.. which was way before my POTS started up.. wondering if that could have cause it.

How do you get checked for EDS? i might have it because i do have it where my joints on my hands and feet are very flexible (can bend fingers all the way back).. just curious and so sorry for the bad news.. ill keep that family in my prayers

i know POTS and anxiety disorder are totally separate but i definently have both. I can tell the differences between adrenaline surges compared to anxiety attacks, but i do get both. i am constantly afraid of my symptoms and worry that there is something else wrong than POTS all the time. I also became a hypocondriac.. This all started when i had my POTs crash and my doctors told me it was all in my head. I started doing my own research and came up with crazy causes such as brain problems to heart attacks. Ever since then i have been like this. Even with my POTS diagnosis. I am afraid to go out of my comfort zones.. ie taking trips or anything. I hate not being in control of my body and i know if i didnt have POTS i would never have had anxiety. I never bring this up to my doc because he will tell me its just in my head. Every time i feel dizzy or feel like i am spinning or cant see right i freak out. How do you guys deal with this? I live my life in fear and im completely tired of it. Now i am not mixing up POTS with anxiety disorder just saying i have both.. depression and anxiety also run in my family.. Thank you all! o yeah i also have true Panic attacks. totally different feeling than my POTS attacks.