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About DizzyGirls

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  1. Sounds all too familiar!! Welcome to DINET! I'm a caregiver to my daughters who have it, in addition to Ehlers Danlos Syndrome. I remember when we finally put together that all of their symptoms were part of ONE thing. You feel like you are finally there! Now we usually look within the confines of EDS. It has saved a lot of time!
  2. DizzyGirls

    Severe bloating

    What about a different variety of bc pill. I know that some contain more of one hormone than the other and maybe a variation would help alleviate that. My daughters are so much better on bc, too! What a world of difference! One gets the depo provera shot because she gets bad migraines and can't have the estrogen, the other one takes Microgestin. Every month was just miserable before. I hope you find something that helps and doesn't upset your tummy!
  3. DizzyGirls

    "Outgrowing" Pots?

    I have a friend who is about 65 and she had a terrible time in her teens with passing out. She would be in class, at a restaurant, you name it, no place was safe. As she's gotten older she doesn't have that problem. She has been diagnosed with fibromyalgia, and has survived breast cancer. I would bet a lot of money that she has EDS as well, although she's never been diagnosed. Her daughter has a lot of GI issues and would highly suspect EDS in her, a sister has fibromyalgia and POTS, as well as a niece who has POTS (would suspect EDS in her also). That being said, she didn't do anything in particular to make it go away it just went away. I don't think, however, that you "outgrow" it. Like someone earlier said, maybe it just goes into remission. As for my daughters, their POTS is being controlled, but I don't think they will ever "outgrow" it. Doctors who say that usually don't have that much experience with POTS, they are just going by what they've read in textbooks or articles. We are all far from textbooks!
  4. DizzyGirls

    Severe bloating

    Yes!!!! Was a lifesaver for my 19 year old daughter. She put her on low estrogen type and runs it continuous, no breaks to have a period.
  5. I find that the more I know about Dysautonomia, the more I realize how little I know! It affects so many different things that it blows your mind! I'm curious, have you ever tried putting a rice sock (or the like) on the back of your neck or for the leg spasms, your lower back? Just wondering if it would help control them. My daughter is suffering from massive muscle spasms on her upper back and neck from cervical fusion about 8 months ago. When she is at rest and the sympathetic settles down, her pain kicks in, as do the tremors. The larger the muscle contractures, the bigger the tremors. The last few nights have been off the charts. One of the helpful things we do, though, is warm a bunch of rice socks in the microwave (not too hot, though) and put them on the back of her neck. Sometimes it takes a second to find the right spot, but it will stop the tremors. Putting one on her low back helps the feet spasms. If it works, you might look into craniocervical instability. Could just be POTS, too.
  6. My daughters have this problem severely. They can't watch TV at all, use a computer, or go to a movie theater. They can use their phones, as the screen is small enough. My oldest, though, has trouble with her phone if she's in the middle of a surge of migraines. The girls don't "watch" TV, they turn around with their backs to it and reflect the image of the TV on their phones. The small pixels of a phone are less bothersome, but mostly they just listen. Movement of scenes on a TV as well as movies at the theater, and just looking at a computer for too long makes their vertigo really bad.
  7. DizzyGirls

    Open Medicine Foundation (OMF) research on ME/CFS

    My two daughters are part of their research study on CFS and have been for the past couple of years. Dr. Koglenik, who is heading up the study, actually made a house-call for their exam because my girls couldn't make it to Mountain View. He is top-notch, brilliant, but humble man. Don't know what they've found out, but I sure liked him.
  8. DizzyGirls

    Does Melatonin Really Help You Sleep?

    Melatonin is a HUGE help for my daughter. According to the article referred to above, it says that people only fall asleep 7 minutes faster than they normally would. I don't know by whose standards they are referring, but they certainly didn't ask my daughter (or anyone like her) about how it affected her. She is sleeping peacefully, most likely, a good 2 hours earlier than normal. Melatonin has been a huge help for her severe pain surges at night. As any responsible person should, always check drug interactions based on what you are taking and the melatonin. If you are little groggy the next day (as I am sometimes when I used to take it), have a cup of coffee before venturing out in a car.
  9. DizzyGirls

    Another option other than Propranolol

    Thank you all for your well wishes and encouragement! I do wish there was a break in here somewhere, but, alas, none in sight! I will send her doctor a message tomorrow, or maybe tonight so that she gets it in the morning! Sounds like there are quite a few out there to try, so that is great!! She was on atenolol while in the hospital right after her surgery because they didn't have any IV propranolol. Actually, the atenolol worked fine for the 10 days she was there. Not sure if we would have noticed if there were side effects, as they would probably have been overshadowed by the surgery pain. Thank you!!
  10. I was wondering which beta blocker might be good for my daughter's tachycardia. The propranolol she's on is making her gain weight and it is making her body even more uncomfortable than it already is. She has a very small frame and the extra weight equals extra stress on it. Anybody have any good ones that don't have weight gain as a side effect?
  11. DizzyGirls

    Symptoms of over exertion

    My mom, who has Lupus, UCTD, and EDS used to get a sore throat off and on. My oldest daughter, who has EDS, Dysautonomia, and possibly Lupus, gets a sore throat every time her body is stressed. Seems to be one of her standard signs of overexertion.
  12. DizzyGirls

    Symptoms of over exertion

    Have you ever been tested for Lupus? A lot of your symptoms sound like symptoms of lupus.
  13. DizzyGirls


    I would recommend a neuro GI, preferably one who is knowledgeable about Dysautonomia. They can do a gastric emptying study to see where the delay is in her digestive system, maybe a Smart Pill, Upper GI endoscopy, etc.
  14. DizzyGirls

    Cold hands and feet

    Yes, Reynaud's. Also, I'll throw in that the opposite of Reynaud's is called erythromelalgia. My daughter has both at times. Her hands can sometimes register up to 102 degrees. Can be very painful. Took us forever to figure out why her hands were doing that. Reynaud's is when the blood vessels constrict too much, erythromelalgia is when they dilate too much. Try some warmish water to warm up those hands!
  15. DizzyGirls

    Sensory Overload

    I can relate! I poked my head out the door last night to see what kind of animal was making this horrible piercing chirp/noise. It was a mockingbird sitting on the fence!! I scowled at him, but don't think he cared!