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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 marrow biopsy just to make certain she did not have mastocytosis, but she didn't. That was a couple of years ago and he said her mast cells are just far too active, but didn't know enough about MCAS to really treat her on a regular basis (he's mostly oncology).
  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 that the same thing?). She's never had any of these tested and I'm just wondering if it would be beneficial. I do think though, that due to her pain and sleep cycles, it might throw some of the testing off, and that can't be helped. Hmmm, always something.
  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 the info. A link someone had provided gave me the thought to check her beta blocker. The difference in the previous beta blocker and the new one was that it was just a selective cardiac blocker, not a non-selective blocker. The non-selective crosses the blood brain barrier and evidently was preventing the "seizures" from happening. Sent a message to her cardiologist and asked him to do some homework on a non-selective beta blocker that wouldn't lower her bp too much. He chose Nadolol, and both girls' symptoms have either greatly reduced or gone away. @Nin - I am always amazed at the number of doctors that I meet on a regular basis that don't know a hill of beans about POTS. Baffling!
  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 punctures, the doctor/specialist just has to order it just as he would an MRI or the like. I hope you are doing better!
  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 starting to have episodes. I would see if you could convince your cardiologist to give it another try. Sounds like she's doing worse without it.
  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 in mind, these are pretty big surgeries. My daughter was at Stanford for 10 days and then at an acute rehab center closer to home for another 7. If your surgery is as big as my daughter's, I'd definitely recommend the acute rehab as they taught her how to walk with her new "stack of bricks" on her shoulders. It's heavy and really throws your balance off. I'm glad you have some place lined up already that has experience in dysautonomia. We found that the neurosurgeon who organized her surgery and did a fair amount of it knew more about dysautonomia than some of the others because he is a peds neurosurgeon. He deals with kids, and who shows up with POTS? Teens! Best wishes to you and I hope you find peace in whatever decision you make!
  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 there, we were in a car accident. I have never been so scared in all my life. She screamed bloody murder from the pain, but thankfully we were heading for xrays anyway, and her neurosurgeon said everything was just fine. Whew!!!!! Her muscles were so rock hard from the spasms that she just couldn't wear her brace any more, so that's why she didn't have it on. That's another thing you need to consider, too, the muscle spasms. They are intense and can cause a lot of problems that you wouldn't think of as well. @KiminOrlando - What you said about anesthesia is sooooo true! My daughter faints for several days after anesthesia, too. And you are right, PT comes in the next day. My daughter had a team full of very savvy neurosurgeons, anesthesia team was hand picked due to her dysautonomia, you name it, all the precautions had been taken. Except for one. PT. They came in, I warned them that she would faint, to be ready. But no, they weren't ready. I think I warned them 5 times that she was going to faint, my daughter warned them too. So, she fainted and they dropped her! I kid you not! I was so mad!!!! They heave hoed her onto her bed and she blacked out more from the pain. 15 people came running in, tilted her upside down, blamed it on her pain meds, and gave her a dose of Narcan. Thankfully, we were blessed with Dr. Grant, one of our wonderful neurosurgeons, and he immediately came in and gave the PT people a piece of his mind and that they had better be more careful with his POTsie patients! The moral of these stories is that things don't often go like they are supposed to. Be well!
  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 symptom in all of this is her vertigo. She actually just started wearing her Aspen Vista collar again for very limited amounts of time during the day to see if it would help. It does, to a degree. But, in discussing the fact that the brace helps (a pretty good indicator that her neck is slipping) and asking her would she want to be completely fused, she said "no". The reason for her is that she can adjust her brace to precisely the right spot that gives her the most relief, once you are fused, you don't have that option. So, for now, that is her personal opinion on it. Best wishes in making the right decision for you. Always remember everyBODY is different. What is good for someone else, might not be an option for you and vice versa.
  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't quite put the link to what action there is on the girls' brain with a nonselective beta blocker. Just what exactly is it doing besides controlling their tachycardia? I have a feeling I'll never find out, but I'm going to keep reading.
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