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Gracefulprincess

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Everything posted by Gracefulprincess

  1. Topamax was the second medicine he tried but it made me really sick and i kept losing weight, so he took me off of it. As for trying a beta blocker, my cardiologist put me on one before i was dx with POTS and that made me black out more. Then my gp put me on another beta blocker last september to prevent the migraines and it did the same thing.
  2. Hey everyone, it's been awhile since i've posted anything and thought this week would be a good time to update you guys. I had an appointment with my neurologist this past week. It was suppose to be a follow up about the migraines i get. Back in December he put me on Depakote ER and that was suppose to prevent a migraine from happening. Well to be make a long story short the medicine hasn't been working at all. I wake up every morning with a migraine, sometimes it;s so bad that i can't move, other times it'll go away for awhile but then come back. I had a major one this past week and ended up in the ER cause i couldn't stop throwing up, i was throwing up blood and stomach acid. Anyway back to the appointment, he said that he doesn't know what to do with me anymore and the only thing he can do at this point is increase the Depakote or try something new, but since I'm already on so many other medicines right now, doing that would most likely back fire. And he doesn't want to create more problems. So he told me to go off the Depakote since it's not working, and see what happens. If the migraines get worse i'm suppose to call him. I've been off the medicine since thursday and i've had 2 migraines (could be just one long one). I can't help but wonder why I'm getting these migraines and why nothing seems to help them. It's realy frustrating right now.
  3. Janine, your new doctor sounds wonderful.. I'm so happy for you!!
  4. Jacquie.. no i didn't have to appeal for the disability, it took a year for them to decide I'm praying that everything will work out for you!
  5. Hey everyone i just found out today that my disability went through and yesterday i found out that the medicaid went through too. I'm so happy and relieved right now!! I haven't had good news like this in quite awhile. I applied for medicaid last May and was orginally denied, so I filed an appeal last september, and was scheduled for a hearing that was suppose to take place this thursday. It's been a little less then a year since i applied for disability and was really having a hard time. So having both things go through is incredible. God is sooo faithful!!!
  6. Name: Rebecca Jeanne Birthplace: Baltimore, MD Kids: not married, no kids of my own.. but i have 2 adorable nephews Pets: none of own, living with a family who has a cat Favorite color: Yellow Favorite flower: Yellow roses, yellow tulips, violets Kitchen theme: In my future home.. blue and yellow Favorite Drink: Cariobou Coffee Zebra Mocha Last Tv Show i watched: Law and Order SVU Last movie rented: not sure Favorite Food: Crab Cakes, Cream of Crab soup, or anything italian Favorite Tv show: Law and Order, House Red or Pink: Pink Favorite Ice Cream: Mint Oreo Favorite Color Crayon: yellow of course, or purple ever bongee jumped: no way eye color: blue hair color: brownish with auburn highlights Farthest you have ever been: Italy Sibilings: A sister Sarah.. 28... and a brother Jason.. 30. Last time i cried: a few days ago i think Favorite Game: Dutch Blitz Rolling Stones or the Beatles: neither but if i have to choose... the beatles Black or white: Black Last food i ate: omlete Diamonds or Saphirres: diamonds of course Beach or Mountains: Both Sweats or Jeans: Sweats Ever went skinny dipping: No way Married more then once: Still single What book are you reading: None at the moment Hobbies: Piano, Writing songs, Crocheting, writing Favorite actor: none Favorite actress: none Favorite candy bar: Mounds.. or Milke ( german choclate bar) EVer toliet papered someone's house: yes Gatorade: yes.. couldn't survive without it favorite fruit: strawberry Man with facial hair: undecided Gold or silver: gold but i wear both Steak or Lobster: Lobster
  7. I have the same problems too with feeling sick and completly wiped out, after doing anything that involves concentrating. I just started learning how to crochet a few months ago and i can't do it for too long without getting exhausted and feeling sick. But i love crocheting. So i normally do something for a little bit then take a break and go back to it after my break, otherwise i'll end up getting sick.
  8. I've tried it for awhile. My dr highly recommended it but it made it harder for me to sleep. So i stopped.
  9. I would have to choose snowboarding. I watched all the snowboarding events and was just simply amazed, especially when they did the half pint. How does a 5 ft girl get so high up in the air? and do all those tricks?? It would be so cool to try it.
  10. I had an IV in for both of the TTT but was never given anything, cause i passed out within the first 10 minutes of the test. i think the IV was for safety reasons, like Mightymouse said.
  11. I'm nausace ALOT, it seems like i'm always nausace. Some days are worse the others, and this week has been one of bad days.. i've been throwing up alot... especially today.. Yucky. I'm on Phenegran and Compazine. Sometimes the Compazine works and sometimes it doesn't, but when it does work it's great and saves me a trip to the ER. Hope you're feeling better soon!!!
  12. wow you summed up things pretty good! I think we all can relate to it. For me it's been 3 yrs since the POTS started and 2 yrs since i've was diagnoised. So what happens to next.. I'm still going to keep fighting even though there are plenty of times that i don't have the strength to fight.. i can't give up. And in the meantime i'm trying to enjoy life the best i can.
  13. I applied and had the interview at the social security office. at the end of the interview i had to sign some papers to verify everything that i had said.
  14. I've been on Florinef for almost 2 yrs now. I started with a very small dose and now my cardiologist has me taking .5mg a day. I spilt it up....3mg in the morning and 2mg in the afternoon. I don't take it past 2pm.
  15. You're in my prayers... and here's a hug! Hope you'll be doing better soon!
  16. when i have bad episodes my bp is 0 or too low to monitor. When i'm not having an episode it's been as low as 75/46 with pulse 66. And my bp has also gone as high as 173/132.
  17. For me it's a tie between the near syncope and fatigue.
  18. My dr has me taking 3 pills in the morning, then i take 2pills in the afternoon around 2pm.
  19. I started with taking that dose, .01 mg twice a day.. now i'm taking .05mg
  20. I have nausea everyday and this past week i was throwing up for three days straight. When it's really bad like that normally can't keep anything down including liquids, meds. But sometimes sipping on ginger ale.. eating plain crackers.. seems to help a little bit. I'm on Phengren and Compazine.. sometimes it works sometimes it doesn't. Hope you find something that will help you.
  21. Hope everything goes well during the surgery and i will be keeping your family in my prayers!
  22. the reason i chose "graceful princess" is because my life is full of the grace of God, without it i don't know where i would be. He gives me grace to face whatever comes my way. And the princess part of my name is because i just like princess stuff. So that's the story behind graceful princess.
  23. Hope you'll be feeling much better really soon!! You're in my prayers!
  24. That's so great to hear you got through on the first time!!! Wow!! I hope the same thing will happen with me. I applied back in june and have yet to hear anything from them. How did it take?? Just wondering. I'm a bit worried about my disability going through cause i was also applied for medicaid and was denied because they didn't consider POTS to be disabling or a disability. so i don't think my chances are too good, but i'm still hopeing for the best.
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