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About DizzyGirls

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  1. 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
  2. @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
  3. 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
  4. Thank you both!! Maybe we'll give an Omron a try. It's easy just to assume they are all accurate, but wanted to ask people who use them all the time to see what your opinions were.
  5. I'm searching for a new blood pressure machine, as ours has died. It served us well, but, time for a new one! We need one that is really accurate, especially with low blood pressure. Borrowed an Omron from my aunt and my daughter swears up and down that it reads too high. When we CAN get our old one to actually work, it will show a much lower reading, one that coincides with the way she is feeling. Our old one was an AandD. Also, they have small arms and would like one with a smaller cuff (found a few, but not sure on accuracy). Anybody have any favorites?
  6. What about IVIG? Has your doctor mentioned Rituxen infusions if your autoimmune issues are not well controlled? We are about to go down the Allergy and Immunology path as my daughter has MCAS and she's just having a real tough time. Anaphylactic reactions to several things as of late. Has anyone checked your Tryptase levels? My daughter never shows anything on allergy testing, Igg, Ige, etc. or the 24 hour urine hystamine catch. BUT, she does have high tryptase levels (17 was her highest and that was on antihistamines!) It's a simple blood test. She has a hematologist who did a bone ma
  7. @Sue1234 - my mom's pituitary doesn't work either. Fortunately, her doctor recognized it, but there wasn't anything she could do to help her. I think my daughter might need a 24 hour cortisol test (she hates those), and maybe an ACTH test. Her rheumatologist is also running some labs, too, just to see where those numbers are at. So sorry your doctor won't do anything. So frustrating!
  8. Yes, I would love for them to take her levels at 8, 12, 4, 8, midnight, and 2 am also! I do think hers would be "off". My mom's pituitary doesn't work well at all. Her ACTH test came back proving that. I do think that dysautonomia people would probably have very similiarities, too! This is all very interesting. Her hematologist sent a referral for her to see an endocrinologist that she likes. Hopefully he'll be better than the last one my daughter saw. She was awful. I think there might be a correlation to her cortisol and her pain levels. Maybe even her norepinephrine levels (is tha
  9. Does anyone keep track of their cortisol levels on a regular basis, maybe a couple of times a year? My daughter just had one and it was 2.1. Her doctor did a random one to see what it was at the moment (it was noon). I know your cortisol levels shouldn't be 2.1 at noon. Maybe later in the night.... She's been very tired and it's been hard to balance her bp and hr. Any thoughts?
  10. Thank you, @Pistol!!! It was a long time coming!! So thankful for our cardiologist!! @DADofPotsSon - I have to say, tho, that i think we are having trouble with the nadolol now. Not in controlling the seizures, for which it works just fine, but in controlling both of their tachycardia. It's been a real balancing act with the florinef and nadolol lately. We had this problem with propranolol, too. It just stopped for the tachycardia.
  11. Both of my daughters began having seizure-like symptoms after having to switch beta blockers. The beta blocker that they switched to was metoprolol, a cardiac blocker. Worked great for their tachycardia, but both started having many of the symptoms you all are describing after switching. My oldest was in an inpatient EEG unit for monitoring and had several of these episodes, but they never checked her bp when it was happening. She had a pulse thing on her finger, and it didn't show much, but I told them she has POTS, to no avail. So that night, I wrote to my local FB EDS group and put out
  12. Hi @Charlotte1 - I've been away for a few weeks and just saw your question. So sorry I've been slow! Yes, both of my daughters have a diagnosis of EDS from Dr. Jaradeh at Stanford's Autonomic Clinic. That was 2015. A lot has happened in the past few weeks, let alone past few months. Found out that my oldest, the one with the IIH, has a tethered spinal cord (again). We were wondering if she was going to have to get another lumbar puncture, but neurosurgeon ordered complete spinal MRI and found the tethered cord. The reason for the constant migraines. To answer your question about lumbar
  13. @bombsh3ll Yes, she did faint post op. Oh boy, did she ever! Scroll up to my post on this thread on August 23rd, I told the story. The fusion was ok. She's even been in a car accident since, without her brace! That was soooo scary and really set her back. I wish you all the best and hope that you can get your symptoms figured out. It's really hard. Not only does my daughter still deal with the after-effects of her surgery and vertigo, she's developed kidney stones! If it's not one thing, it's another!
  14. @bombsh3ll- Just remembered this... one of my daughter's neurosurgeons hand picked the anesthesiology team because of her POTS. I'm sure you've tried Florinef and Midodrine... they don't help you? We asked our cardiologist about my daughter's bp, as her heart rate seems to be more under control. He said that controlling the heart rate is much easier than controlling the bp. You can bring bp up or bring it down, but the stability part is what is frustrating, he said.
  15. You have been a real encouragement to me over these past several years that I have been on here! I am so glad you made it through this and that you had someone to stand up for you and your husband while you were trying to do something helpful. How things backfire! My mom and dad had a similar, albeit not quite as severe, issue with caring for an elderly family member and then after the death it just escalated. It's horrible! But you made it!! You GO GIRL!!!
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