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About DizzyGirls

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  1. This isn't exactly what you're asking, but it may still apply. My daughter who is almost 25, was having some debilitating headaches recently. She gets migraines, too, but these were different. We finally figured out that it had to do with low blood pressure. She was anemic and getting iron infusions, but because iron tends to lower your blood pressure, she was having to get a couple of bags of fluids after because when she would stand up and start to move around, the headaches would get worse. We think that because she's been anemic for quite a while, that it was prompting these headaches
  2. The first time my daughter went to the ER for what we later learned was POTS was a real eye opener. My daughter was barely conscious, everything was blurry because she was very tachycardic and in a constant state of almost passing out. The only reason she didn't pass out was because she was laying down. The doctor she saw that night we found out from one of the young residents, that he literally wrote the book on emergency medicine. He was the author of their emergency medicine curriculum that they used in med school. So, we had a better start than most, but all he did was take her bp doi
  3. @CallieAndToby22- It's all so complicated, isn't it!? Both of my daughters were diagnosed with EDS and POTS by a neurologist at Stanford's Autonomic Clinic. He's sort of the EDS guru of the West. They did the whole tilt table thing and we got their diagnosis and testing done in one day. Upkeep is done by their local doctors. We were fortunate to have a POTS cardiologist among our local crew! He's a godsend! You don't have to go to a big University clinic, though, if you are lucky enough to have a doctor that is knowledgeable within your local area. (Neurologist, geneticist, or PCP (if yo
  4. @Pistol- Oh, that's not good. I'm so sorry you are feeling so poorly! It's miserable! Yes, both of my girls get that way when they are worse. Weakness usually comes with a bad flare and typically it's in the wintertime. For my oldest, we just found out that she's low in ferritin and just started receiving iron infusions. So, hoping that is the culprit this time for her weakness and lightheadedness. Have you had your blood checked recently? This was a routine appointment for my daughter and definitely were surprised with her blood levels. I have to remind myself that everything isn't a
  5. Just wondering about Resonance Frequency Breathing..... My daughter's therapist has her doing this 11-second resonance frequency breathing to help with her dysautonomia and anxiety. It's making her anxiety worse, not better....... anybody have that happen?
  6. I'm sorry I'm a little slow at responding to everyone's helpful suggestions!! My daughter had her first iron infusion this past Friday, so she's even worse than when I wrote this post! Definitely think she needs a couple of bags of saline at her next infusion. That's a must! Anyway, she drinks about 12-16 oz of smartwater before she even attempts to get out of bed and I have switched to giving her Florinef early with her dose of meds that she takes before she gets out of bed. This has been helping some. I remember now, that when she tried taking iron before that it really gave her an extr
  7. My daughter was diagnosed with chilblains when she was about 12. At the time, she was dealing with viral onset gastroparesis and we think that her malnutrition was the cause. She was diagnosed by a dermatologist who found it odd that she would have a condition such as this living at sea level in California! However, EDS, Dysautonomia, etc. is not a chooser of your region. The oddest of things happen with these conditions! She didn't do anything for hers. She had a feeding tube for about 3 months, got her nutrition levels back up and the whole chilblains thing with the bumps, etc. just we
  8. @CallieAndToby22I'm sorry that you are going through this, too! In between when I posted this and now, my daughter had an appt with her hematologist. It was just a 6 month check-in, but I'm so glad she went! It turns out that her ferritin level is low and most likely explains why she's been passing out so much! It's really hard with POTS to determine what is a POTS thing and what might actually be something else. I always remind myself, this is why we keep a hematologist in our back pocket! She's a super doctor and it's been great to keep her on with our "doctor crew"! Have you had any
  9. My daughter has been passing out after she eats breakfast. This is a new thing, but, by no means the only thing she's got going on (does anyone ever have just one thing at a time???!). That being said, I'm sure this happens to many of you! So, what do you do when this happens to you? My guess is most likely post prandial (sp?) hypotension, but would be interested if anyone else has a different diagnosis for theirs! Thanks all!
  10. Wow! This is so interesting and fits right in with my oldest. Ever since she had to stop taking Motrin, her pain has been off the charts. Had an ultrasound show some mild distention and swelling of her left kidney (so far no Nutcracker syndrome). I think her issues are inflammatory. She's been on Plaquenil off and on for the past few years, but only at 200 mg a day. Wonder if that's a high enough dose to do anything? Just a thought.... My mom has EDS, Lupus, Dermatomyositis, and Sjogren's, so AI runs in the family and my daughter is a carbon copy of her. Would love to hear updates on
  11. @adejuliannie- So both girls (24 and 22) take Nadolol. It's one that doesn't mess with their bp too much, but still lowers their heart rates. I'm having a real brain fade at the moment, but there is a type of syncope where, during the passing out process, tremors and seizure-like symptoms occur, which is what I figured out my oldest was doing. When her bp gets too low, she starts tremoring. Sometimes she'll stay in that phase, but sometimes she'll pass out. I tilt her back, lift her legs, and she comes back. When this happens, she takes a Florinef. That boosts her bp and makes her not s
  12. @Viktor- My daughter takes Nadolol. @Delta - Rain and hail do the same thing to my daughter! It just about sends her through the roof. She is significantly better than a few weeks ago. It's finally starting to calm down, but she still does have to take precautions so as not to trigger it again. Always something, isnt' it!?
  13. My daughter doesn't have hyper-POTS (that we know of, anyway!), but she's been having a really hard time with intense things. She doesn't like graphic things of that nature, either, but she's also bothered by intense music, too much commotion (too many people talking or noises happening all at once) and sound. Sound is a big trigger! They all do the same thing and that is trigger her sympathetic nervous system, which leads to all of the symptoms you are referring to. We have been trying diligently since September to get it to calm down. She's doing a lot better, but we have been making su
  14. @Liz Mack - Have you ever heard of Superior Canal Dehiscence? It's an opening or a thinning of the semicircular canal in the inner ear. You might want to look it up. My daughters both have vertigo, POTS, EDS, and the list goes on. My youngest was evaluated for it (close up CT), but doesn't have it. Their problems are POTS and central nervous system related. Another thought would be Eagle's Syndrome. Please do some research on both of those, as you don't want to miss something, blame it on POTS, and live in misery. Do you check your blood pressure and heart rate frequently? Make sure y
  15. Both of my daughters had seizure-like symptoms (involuntary jerking, temors, absence-like seizures) when their propranolol stopped working and they were both switched to Metoprolol (a cardiac blocker). The Metoprolol worked great for their tachycardia, but seizure-like symptoms and tremors popped up. Through a bunch of research and some very frustrating doctor visits with doctors that should have, but didn't know what they were doing, I figured out that they needed a non-selective beta blocker. It crosses the blood-brain barrier and they need that. Their Sympathetic Nervous System was taki
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