icesktr189

Right before I came down with POTS, I was working a grave yard shift... after that I could never get back to a normal sleep pattern..

I have this too, and find that I can eat sweets but must eat protein with them and be sure to eat within the next 3 hours.

I dont have AS, but I did post a thread about feeling better when i am sick... to top it off my family has a long history of autoimmune disorders, so I am sure I must have one lingering in me. LDN doesnt work overnight though. I know a lot of people get their hopes up for a quick fix, but for my mom, it took a couple months to really see improvement. It REALLY helped with her inflamation. I have been in a complete POTS mess since I was 6 months PP (so around 2 years now). I am either really great or terrible. I dont really have an inbetween like some people on here.

Well you can always get off it if you go into remission I am hoping that if i do get accepted that it wont be a forever thing. I am still going to go to school online and finish my degree and hopefully one day I will be able to use it!

LDN for me in the beginning up that activity for a couple weeks until I got used to it. I felt anxious and giddy on it, but it eventually evened itself out

i only went because i couldnt stay conscious... I think I passed out like 10 times in a span of 20 mins. If you can just wait it out and after its out of your system, you will go back to your normal POTS. However, if you are really afraid and have anxiety, you bp is going to go even higher. Do you have klonopin? Or somthing like it? That is pretty much all they will do for you when you go in, is give you a hefty dose of ativan and some fluids. If your bp doesnt go down soon, you might have to.

When my POTS was more stable I did as a caregiver...it really worked out for me. Now that I am 90 percent worse there is no way, but I hope with the right med combo I can drive again and start to work... I really miss it. I have no urge to get on disability even though I applied.

I wont even chance alcohol at this point...I think it would send me right to the ER

Wow cant believe its been almost a year since I posted this and Im still having the same annoying issues. LOL. I swear once i get into Mayo I am going to try every med even if it kills me haha

Yes and that is why I dont take anything other than Tylenol. I can tolerate benadryl but it makes me tired. I once tried Tylenol Cold liquid and ended up in the ER. I just stay away from everything unless I really need it (Ie painkillers after surgery)

Demand a tilt table test. Do you pass out or have pre sycope. I went to my cardiologist and told them I was passing out multiple times a day and they did the test the next day. Good luck! I know it can be very frustrating to get a diagnosis.

The month before my crash, I had what I thought was a panic attack while eating sushi at RA. I felt out of breathe, dizzy, heart racing, anxiety and layed down in my car. It went away and I put it aside. I went to see the movie Cloverfield one night, and felt very weak and dizzy. I went to bed early and the next morning I was bed bound. Everytime I stood up I passed out. I felt no longer "real" and everything looked very strange (probably no blood in my head). I came down with POTS in Janurary of 2008 so its my 4 year anniversary LOL

Yes mine is but I also developed PMDD after the birth of my daughter, so not only do my POTS symptoms worsen, but I get depressed too. It stinks!

I do believe it can def. help, but my problem was that most were saying it could completely cure you of dysautonomia. For most of us heart rate is just one of the thousands of symptoms, and I really think the way they sold it was misleading. I would also love to hear hoe it goes! I am all for anything that helps

Sorry you are having a rough time, I think that is the worst is going back and forth from being good to very bad.

I wish my doctors would realize that...they seem to think that there is no way I dont have enough blood laying down.

I think for the past two years I NEVER have an adequate amount of blood in my head, even laying down. It helps my body symptoms, but not the head ones. I wake up and see visual snow without lifting my head up. I constantly see dots everywhere (like the small ones on the older tvs). Everything is always dark all the time no matter what position I am in.

This is why if I drink a gaterade, I make sure to drink 16 oz after it. I have noticed I dont have a problem with Powerade though..

I was going to start it up, but then I got sick and with the holidays I just didnt want to start anything new. Basically waiting to get into Mayo first and if they come back with nothing new, I will start it back up. You have to have patience with those types of meds, and I just dont have that right now lol

Age is a huge factor when you apply. My attorney said that only 1 in 4 young people (under the age of 50) get approved on first try. I guess social security does not want to pay out for too many years LOL. I got denied twice and am now waiting for a hearing with the judge. I no longer drive, work or leave my house, and even though I told them I have frequent sycope episodes, they still insist that someone can drive me to work and I can do "light part time work". The whole system is completely ridiculous IMO. However, my lawyer did say that most people do take it all the way to the judge, so dont worry if you do get denied. Good luck with all of this and try to stay positive!

I have the bike at home and its still really had for me... I have passed out twice on it, but I think that is the closes thing you will get to excercising without walking.

I tried to do a search and came back empty so..... I went to bed at 1 am last night and tried to wake up at 9am. I was super dizzy and tired, so I went back to sleep and now its 2:30 pm and I am now just waking up. I still feel very dizzy, out of it, and tired. I am not depressed because I dont do this all the time, it just seems since yesterday I cant stay awake. I dont know if it was all the holiday stuff and just getting over being sick, but my body feels done. However, I need to take care of my daughter tomorrow and have no clue how to wake myself up!

I really think POTS caused the ear problems. Before I crashed again, I didnt have a problem with my ears. Then the worse I got POTS wise, the more and more symptoms started popping up with my ears.

The problem I had is when I talked to someone on their Facebook page in a message, they really didnt know what OH or OI meant, which means they probably didnt know much about their condition in general. By no means am I calling anyone stupid or anything, but lack of knowledge about your condition would make for an easy target. It seems to help more people with just POTS (increase hr) than it does for people with OH.

I am 22 but I also came down with it at 17