Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Gracefulprincess

  1. This topic is great! I can completely relate to it! I've learned to take extremely short showers,like five mins. Otherwise I'll blackout in the shower. if i need to shave i usually take a bath, cause i can't stand up long enough. I usually sit to put my make up on and fix my hair. I normally don't have the energy to stand to do anything anymore.
  2. Emily, I started taking Topamax yesterday, so far so good. Of course this is my second day with it and I'm only taking 25mg right now. i'll see what happens later on in the week. About your post, I totally understand where you're coming from. I'm on alot of medicines right now and most of them just frustrate me more then they help me. And honestly i don't really want to be anymore meds, Iv'e feud up with them. but at the sametime because of how sick i've been with the pots, ncs, and migraines, i'll try anything.
  3. Yesterday i saw a neurologist about the migraines that i've been getting because of the medicines i'm on for POTS/NCS . They've been really bad since June to the point where i'll end up in the ER becuase the pain is too much and or i can't stop throwing up. Well the dr has put me on Topamax. I started it today, I'm suppose to take 1 25mg pill for a week then increase it to 2 25mg pills for the next week. And then increase it to 3, so i'll be up to 75mg. and in a month i'm suppose to start taking 100mg. He said that Topamax will make me really nausace and dopey in the morning. I'm concerned about that becuase i already feel horrible in the morning, i pretty much can't do anything or get out of bed till about 10. So is anyone else on Topamax? Is it working for you? What side effects are you having?
  4. ARRGGGHHHHHHHHHHHHHHHHH!!!!! I had a really bad dr's appointment yesterday at the neurologist. The dr really doesn't get it. I was there because of the migraines i get due to all of the medicine i'm on. so i had to explain that i had POTs and NCS. Then she asked me where i worked, and when i told her i didn't , and can't work she acted surprised. How I am suppose to work when i can;t stand up for more the ten minutes and all of the meds i'm on make me sick to my stomach everyday. this dr just frustrated me so much cause she just doesn't get it. I really wanted to slap her.
  5. I had to have the rabies vaccine series becuase somehow bats got into our house. So my whole family had to get the shots. It is very painful, more painful in the first time you go to get them becuase they have to do around 4-5 shots. And it really hurts, they did 2 in my arm and 2 in my hip. And i think they pinched a nerve when they did the ones in my hip, cause i still have pain. It's been about a month since i had them. Anyway after the first set of shots, the other ones aren't bad and don't much at all.
  6. The first medicine my dr tried me on was Atentolol, and that made things worse for me. I started blacking out everyday. Needless to say he took me off of it and won't put me on anymore betablockers.
  7. Pamela, I just tried emailing you but it's not working, so can you email me? my addy is brandedforever@hotmail.com
  8. I started out taking 10mg 2x's a day and would have alot of side effects, but the medicine wasn't helping so my cardiologist up it to 10mg 3x's a day. I've been on that dose since Feb i think. I still have alot of side effects, the main ones are migrianes, vommitting, and i get the chills alot.
  9. 1. Rebecca 2. 26 3.Dx- NCS/POTS 4. 25 when dx but have been having problems since july 2003 5. Charlotte North Carolina 6. symptoms at worst- can't get out of bed, high/low bp, blackout, migraines, vomitting all day long, severe chest pain, weakness, can't stand up for more then a few mins, joint and body aches, dizzyness 7. symptoms at best- extreme fatigue, high/low bp, chest pain, achy, chills, feel like going to pass out, weakness, blurry vision, confusion 8. Carbatrol, Dilantan, Depakoke, Atentolol, Imitrex, Propranolol, Midodrine, Florinef, Paxil, Norpace 9. Phenegren, Still on the following Propranolol, Midodrine, Florinef, Paxil, Norpace
  10. I have POTS/NCS, and i've been unable to work, so my doctors advised me to apply for medicaid and disability. Well i got a letter from medicaid yesterday and said my claim has been denied. I know i've got to file an appeal and possibly get some legal help, but i'm really confused at this point. Has anyone else have trouble with getting medicaid approve? If you have what did you do? If you have any suggestions or advice, it would help alot.
  11. I get like that too, it's jsut like clockwork for the most part. I normally feel like i'm going to crash between 4-6p, sometimes it's earlier it just depends on what i'm doing. It's horrible sometimes cuase i feel like my body will shut down if i don't rest.
  12. Well i'm not sure how my problems started, My pots problems started july 2003, out of the blue. I don't know what really brought it on, probably stress had something to do with it and i was sick alot that year. I was almost 25 when it started and was in the middle of a big transition. i had been working with a church plant trying to start a youth ministry.
  13. hey thanks, i just joined a few days ago. i found this website earlier but didnt realize that it had a forum. So far it's been a blessing to me. I'm 26 and was diagnoised with POTS/NCS, SVT last year. So far the meds they've put me on have only made me worse and they make me sick too. so it's been a very long difficult road for me. The good thing about this forum is that it's a constant reminder that i'm not alone.
  • Create New...