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DizzyGirls

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About DizzyGirls

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  1. 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
  2. @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!
  3. 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
  4. 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?
  5. 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.
  6. 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
  7. 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
  8. @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!
  9. @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.
  10. 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!!!
  11. Sounds like the fludrocortisone might have been working better than expected. It doesn't help my daughters' energy, but it does keep them from passing out! Sounds like that's what was happening to your daughter. Pre-syncopal episode. My youngest daughter recently just stopped her fludrocortisone, as her bp was plenty high enough and the med was making it too high. I wouldn't advise this, but when your body doesn't need something anymore it can be much easier to taper off, as your daughter wasn't on it for very long. Sounds like it might have been keeping her bp up and without it, she's s
  12. My daughter takes Florinef. We've had to change her dosing as of late, but when she can tell her bp is dropping (starts getting really lightheaded) then she takes a half a pill. She was taking 1 0.125mg pill in the morning and that worked for several years, but lately it's been too much. So, we've been doing half in the morning and as needed in the afternoon/evening. When up and around, she used a walker to have something to hold on to. I'm always with her, tho. Do you have someone that lives with you that is a good help and could keep an eye on you for the first several days home. Keep
  13. @bombsh3ll - The collar helps give her muscles a break from the stress of keeping the upper half of her body upright. Right now it's an Aspen Vista. Her back is heavy and solid. She wore a neck brace, not a cervical one, but a more cervicothoracic for several months after her surgery. It's called a Minerva. It has a front section and buckles and a back section with a ton of straps and buckles including one that wraps around your head. You asked about fainting? I have a story..... The first time riding in a care without the brace, we went to SF to see her neurosurgeon. On the way the
  14. I hadn't even read your post, but had asked my daughter your very question just the other day. She is fused from C3-T4. There was a possibility that she would come out of her surgery fused from C0-T4. Thankfully, though, she had two amazing surgeons that didn't feel it was necessary at that point to restrict all movement in her neck. They did say that it might be necessary later, but I know that they would only do it if her quality of life were so severely impacted (as it was before her surgery) that it would warrant it. She suffers from dysautonomia, has EDS, too, but her most limiting s
  15. @Pistol- I'm so glad that you have a doctor that recognized your Autonomic seizures. They are worth their weight in gold! @bombsh3ll - I totally agree with your thoughts and got a good laugh at your description. I can't believe that they are diagnosing people with psychogenic seizures when they have POTS! If someone isn't familiar with POTS, they're going to leave the hospital thinking that they have some buried psychological issues! So wrong on so many levels. I have heard of ivabridine, but haven't researched it. That's interesting. I'm going to have to investigate that. I haven'
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