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About DizzyGirls

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  1. Drop Attacks.

    Oh, I love apple cake and I'll bring my BIG coffee mug! That is a really bizarre story! It's strange, when my daughter puts on any kind of brace, whether they are knee braces, a back brace, etc. it makes her body unable to coordinate itself or hold itself up! I'll look into the Achilles tendon, too. You are so right about the balance and strength. It takes both. When her legs are tired at night, it's horrible! I'll have to ask her if she feels like part of her legs aren't there. She's not mentioned that, but, it might not have occurred to her. Sometimes you don't notice things until you think about it. When this all first started, we were at a wedding and it was loud, stuffy, crowded, and had been sitting in one spot far too long. She suffers from sensory overload, so when you put all those things together, it makes for "baby giraffe syndrome"! Ha, that's a good name! She fell three times before we had gotten but 20 feet from our seats! I think it's a combination thing of dysautonomia, fatigue, instability, and probably something neurological. We are seeing a neurosurgeon next week and will ask him his thoughts on it. I'll let you know what he says!
  2. Drop Attacks.

    Yes, cherry pie and coffee! I'll join you! My daughters struggle with vertigo too, and they could never do any of the balance testing because it would have been dangerous for them to be off their medicine for 48 hours. The drop attacks are interesting as my youngest has been falling around 10-20 times a day. I think hers might be different than yours and it appears to be some sort of instability in her pelvis and whatever connects that to her legs. She looks like a baby giraffe trying to stand! I'm going to look these drop attacks up, though....just in case! I hope you get yours figured out. It's really hard to get around in this world when you drop all the time!
  3. Getting a Rollator/walker

    We have a website for our neighborhood called Nextdoor. A few days before my daughter's surgery, my dad put a plea out to the neighborhood to see if anyone had a rollater walker for sale. Within a half hour there were three people offering to drop theirs off for free! They were PTs and they said when we were done with it, just pay it forward. My daughter is 19 and she brought it to Stanford with her and decked out the basket with signs that read #Dysautonomia, #Its not all in my head, and #Ehlers Danlos Syndrome!
  4. Increased Tryptase levels/ MCAS?

    My daughter sees a hematologist for hers. The Tryptase level the first time she had it run was 17. This last time when it was checked, it was 11, but that was on h1 and h2 blockers. Should have been a lot lower.
  5. Northern CA/Bay Area Doctor Recs?

    I would avoid UCSF for anything remotely related to dysautonomia/POTS, etc. My daughters were two of the first kids seen there and we did not have a good experience.
  6. Vision problems?

    When my daughter is especially tachycardic, her vision gets real blurry. She doesn't experience any sudden vision loss, though. Do you have any other symptoms that go along with the sudden vision loss? Say, maybe, severe headaches or a feeling of pressure in the head? Just curious.
  7. Northern CA/Bay Area Doctor Recs?

    Hi halffull! I live in Northern CA, too, and several of our doctors are at Stanford. I wouldn't recommend them all, but have you tried Dr. Jaradeh or his PA Irina Krugamova? He takes absolutely forever to get into, but she is very good and her wait list is a lot shorter. They are at the Autonomic Disorders Clinic in the Neuroscience building. I know of someone who also sees Dr. Muppidi at the Clinic, too. She got him through paperwork error, but she likes him. I find that other than the two of them, I don't know anyone. One would think that living in an area with so many "world class" medical centers that it would be easier to find a plethora of doctors who understand POTS. Do you have Ehlers Danlos also? Just recently my daughter was in the hospital at Stanford, had 9 vetebrae fused (cervical instability due to EDS). We met the nicest doctor ever. She is a hospitalist in the neurosurgery section and in one of our conversations she was commenting on how little they teach in medical school about things like EDS and Dysautonomia. She soaked up everything that we had to share with her. For neurosurgeons who understand EDS I would recommend Dr. Gerald Grant (ped neurosurgeon, Lucille Packard). He makes exceptions for adults with complicated cases like my daughter's. He's also a Chiari expert. The other neurosurgeon is Dr. John Ratliff from the adult spine clinic. Probably doesn't quite understand all of the idiosyncracies that Dr. Grant does, but he is top notch in spine reconstruction and understands the healing and mechanical part of EDS that affects the body in relation to surgery. I, however, DO NOT recommend their PT people. That is a long story for another time. Sorry I couldn't be of more help.
  8. Natural ideas for more salt intake?

    Black Olives!!! 115mg in four olives. And who only eats 4???
  9. Frustrated With Doctors

    Hi Vepa! Welcome to the forum! You said you are not a doctor and you are trying to find a knowledgeable one to help you. I, too, have said those words early on. I'm still not a doctor, but I sure as heck know a lot more than most doctors put together. There is so much information on the internet and you have already begun your diagnosis because you are consistently getting the same results when you do the "poor man's tilt table test". So, you do know what you are doing. Our cardiologist at UCSF didn't like the tilt table tests. He said they were barbaric and that you can get a good analysis of a person by doing just as you have done. Write these records down, put a date with them, keep them somewhere safe. I know we can't prescribe our own meds, so for that you will need a doctor, but many of us have diagnosed ourselves and searched for the doctor after. That's how we handled my daughter's cervical instability. Nobody and I mean NOBODY knew what was going on. It wasn't until I started looking into Chiari and then my dad found information on cervical instability, that we then searched for a doctor who knew about Ehlers Danlos, POTS, and cervical instability. She's now 5 weeks post op! Whatever you do, don't sell yourself short! You found this forum, didn't you!?
  10. Hi dizzyape! I have family that lives in Nashville, too! Wow, a trip to Vegas! Sounds like an adventure! I would definitely make sure that you drink a lot. Do you like SmartWater? My daughter drinks 2 liters of that a day and about another liter and some of just plain water, tea, vitaminwater, etc. Also, salt, salt, salt, salt! Did I mention salt!? (Thermotabs salt tablets). I would work up to the water, though. Drinking that quantity from the get-go will most likely make your kidneys mad. Compression socks, stockings, sleeves, however you can tolerate them. Find spots to put your feet up or all the blood will sink to your feet and you'll start passing out. If you have vertigo, I would bring some meclizine (OTC at Costco) with you. Don't forget your meds when you go on your trip. Good luck!
  11. Hi there!! Welcome to the forum! I, too, have a 21-year-old, no twins, but another daughter 19. They became symptomatic about the same age you and your sister did. Their primary cause of their POTS is Ehlers Danlos, but my mom has Ehlers Danlos and Mixed Connective Tissue Disorder with an overlap of lupus. So they could possibly have an underlying autoimmune disease, too (highly suspect it in my oldest). You could definitely have POTS symptoms from lupus. It affects your whole body, so anything that has that effect on the body could potentially cause autonomic dysfunction. Your description sounds all too familiar. My daughters are at the point now, though, of not being able to live completely normal lives. They are, however, greatly impacting the medical community where we live and are spreading awareness as fast as they can about Dysautonomia and Ehlers Danlos (which we believe to be the cause of their POTS). My oldest is currently recovering from multiple spinal fusion surgery (9 vertebrae, to be exact!). While at Stanford she was the first one asked to share her story in this new "storytellers" program that they are implementing there. Her story has the potential of making it to the library of Congress! She was so excited (especially since she is a writer!). My youngest is an artist, but is just concentrating on walking at the moment. Her legs just buckle out from underneath her and she falls around 20-30 times a day. It's exhausting. Her hips look very unstable. We have an appointment for her with the same neurosurgeon that did my other daughter's surgery, so that's good. I hope this helps and if you have any more questions, ask away!!
  12. Temperature irregularities after surgery

    Thanks dancer! Hi p8d! You know, she's had a lot of testing done for autoimmune disease, but, other than a lower titer positive ANA, she tests negative for everything. That being said, I still hold that she probably has Lupus or Sjogren's. She has a lot of the symptoms, just nothing ever tests positive in her blood work (with the exception of the low ANA). My mom has lupus, also. Would think with both of them having Ehlers Danlos and my mom having Lupus, too, that maybe my daughter would have a predisposition to it. Thanks for your suggestion!
  13. I had a quick question for everybody.... My daughter is 3 weeks post-op cervical/thoracic spinal fusion (C3-T4) and her temperature keeps registering 99.4, 99.8. She had a UTI, but that seems to be under control (had that rechecked today). She keeps getting these low grade fevers, though, and the doctors don't consider them a fever until they reach about 101.5 or something like that. Has anyone else had this problem this long after surgery? I'm worried about infection as her back is now full of all sorts of titanium and we don't want anything to jeopardize the healing of her surgery. She's real tired today, don't know if that is contributing to it or not. Any ideas???
  14. Neck Problems

    Hi Bluebonnet08, just because one doctor said you didn't have EDS doesn't mean they were right. My daughter was told she had Benign Joint Hypermobility Syndrome when she was 5. Years later at 19, she was diagnosed with EDS. She's 21 now and in rehab for cervical fusion of C3 to T4. Rods, screws, hers and cadaver bone, anterior and posterior. She had EDS all along. If you think you have EDS, you probably do. See an EDS savvy neurosurgeon, sounds like you have cranio or just cervical instability. Good luck to you!
  15. What is EDS?

    My daughters see an autonomic specialist at Stanford, he's a neurologist, and he readily diagnosed them. They saw a geneticist once and was saying "maybe, they might have Ehlers Danlos" but would never commit. The neurologist right away could tell. No hesitation.