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Everything posted by Aprilmarie52

  1. I was on it for 7 years. All of my test results were normal too, but it helped with fluid retention and my POTS symptoms. I had to taper off by first cutting the pill in half for about 3 months, then going to 1/4 for another few months and then to every other day for a while. I was finally able to come off of it though.I was on it for a long time so Im not sure what the protocol for coming off of it when you have only been on it for a short time is.
  2. Try and get a good nights sleep (which I know is hard, especially when you are anxious about the next day). I don't know how caffiene effects you, but I find that if I drink a little bit that it helps combat brain fog (not too much or you will be jittery). Don't forget to eat something before you go. The frosted mini wheat minis are supposed to keep you full and focused Good luck!
  3. Welcome Joanne! Has your daughter been tested for a mitochondrial disorder? It can manifest itself in many different ways and autonomic dysfunction can be secondary to mito. I would defiantly suggest www.dynakids.org. Also check out www.umdf.org for info on mitochondrial disorders. Good luck and keep us posted.
  4. That kept happening with my zoloft. I think I ended up using 4 different generics. My body did not handle the changes at all. My former insurance company didnt cover brand if generics were available either, but I couldnt take it anymore so we just started paying for brand out of pocket. I think all of the switches between generics contributed to zoloft not working for me anymore. When my dr switched me to celexa, I specified from the get to that I wanted brand only. Luckily, my new insurance co covers brand just with a higher co pay. Good luck!
  5. That happens to me sometimes. I've never taken my hr or bp when it does as it is in the middle of the night. I've found that putting a cool washcloth on my face and sitting under the fan on high usually helps to calm it down so that I can go back to sleep.
  6. I took florinef and zoloft through both of my pregnancies with no adverse effects. I would speak with your dr and OB and see what they are comfortable with.
  7. I have never heard of that before. Have you tried emailing them? You could always sign up using a different email address. You will have to redo your whole profile though.
  8. I like the blue powerade (not sure what flavor it is) and also the pink lemonade. They are both pretty good. I dont like gatorade as much as powerade.
  9. Leapfrog also has a tag reading system now. You use the pen and it reads the words for you (you do have to buy the special books that go along with the pen). My girls (2 and 5) love it! I also have them do little things to help me around the house (dusting with a cloth, picking up after themselves etc) They actually really seem to enjoy it. We sort of play a game and sing the clean up song when they do it. Kids that age love pretend play. We have a play kitchen, dolls, a play house etc that they play with. My youngest has recently discovered playdough and likes to play with it.
  10. I joined in April 2004. Like some of the other posters, I have my ups and downs. Sometimes I feel great for a long time and then I start to be symptomatic again. I read a lot, but dont post often. Its hard to find time with 2 little ones running around.
  11. We saw Dr. Shoffner. Gabby has Complex V mito disorder so she is on COQ10 (800 mg) and L carnitine. I have definitely noticed an improvement in her energy level, but I she is has other issues that have not been resolved by the cocktail.
  12. We had the additional Gene mapping done on Gabby, but Dr. S couldnt find anything. Good luck!
  13. I am not a mito expert by any means but I did want to say that they best way to treat a mito disorder is to first find out which disorder that you have. My daughter was diagnosed with a complex V mito disorder. This means that her body as problems with ATP syntheses. The cocktail that she is on is different than someone with a complex III disorder would be on because different systems are effected. We saw Dr. Shoffner out of Atlanta for her diagnosis. He one of the top mito docs in the country. He is starting new drug trials so hopefully there will be other treatment options forthcoming.
  14. I took Zoloft for 8 years. It worked really well for several years, but eventually it stopped working for me. My dr kept increasing the dose, but it didnt help. I recently weaned off of it. It was a very hard and long process and I still dont feel like myself.
  15. Happy belated birthday! I hope you had a great day!
  16. She was diagnosed through a live muscle biopsy. They took a piece of her thigh muscle. There is not a blood test to test for mito.
  17. I had 2 vaginal births. One with an epidural and one without. My blood pressure held through both of them.
  18. I have had this happen when they came out with a generic from of zoloft. I got panicky, dizzy and very potsy. Then they other manufacturers started coming out with even more generic forms of zoloft. So my pharmacy started buying whatever was cheapest. I could tell every time that they switched to another generic brand. My insurance only covers the cost of what the generic would be if I have the dr request name brand (even if the generic doesnt work) so I was paying 70 a month for the zoloft. I finally just weaned myself off. It was better than the ups and downs of going on and off so many different generics. There was a news special about a month ago. The amount of medicine that is in the pill can vary by up to 3% from brand to generic legally. The story was on abc. http://abcnews.go.com/GMA/ConsumerNews/gen...tory?id=8925388
  19. I take CoQ10 daily and I can definitely tell when I havent taken it in a few days. I start to feel pretty awful. I take 100 mg, but my daughter, who has mito, takes 850mg a day.
  20. I did until I was laid off. I am a teacher so I get summers off and breaks during the year.
  21. I dont have any advice on the ibuprofen, but I was on florinef for 7 years and it was a wonder drug for me. I did gain a little weight on it (maybe 15 lbs), but I didnt have any side effects. I went off of it because I didnt feel like I needed it any more to function. That was 2 years ago. My dr weaned me off slowly. It took a few tries before I was finally able to go off, but there was no withdraw symptoms. I know that everyone is different and it can have some uncomfortable side effects. Good luck!
  22. Did you wean yourself off of the Zoloft. I came off of it earlier this year and it was rough. I weaned myself off over the course of about 4 months. I would get "brain zaps" every time I turned my head or moved my eyes. I was sick to my stomach and would get tremors. It was not fun. Benadryl helped with some of the withdraw. Good luck!
  23. I buy the liquid 500ml for my daughter. She takes 800ml. She is also on L-carnatine but hers is prescription and we get it through a compounding pharmacy.
  24. I cant remember if you have already seen Dr. Shoffner or not, but he is who diagnosed my daughter. She had a muscle biopsy done to confirm. They are now doing additional testing on her sample to isolate the mutation. We get all of our CoQ10 from epic4health.com. That is where Dr. S advised us to order from. Something to do with bioavailability I believe.
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