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About DizzyGirls

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  1. 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!
  2. @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!
  3. @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.
  4. 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!!!
  5. 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.
  6. 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!
  7. @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!
  8. 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.
  9. @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.
  10. For those of you who have tremors or POTS related seizures, I think I might have run on to something. It was new to me, but some of you may already know this. My daughters have been having a lot of trouble with "seizure like" episodes. So much so that my oldest had an inpatient EEG study done at Stanford. They said she has "psychogenic seizures" and that it is an emotional reaction to being chronically ill. Well, I didn't buy that for a minute, especially for her. Because there was mention that these episodes could also be related or made worse by their POTS, I began my research into beta blockers as both girls had a switch around the time these episodes had started. I found that there are non-selective and selective. I knew of the two types, but not a lot. We have since discovered that the metoprolol that they were both on (a cardiac selective beta blocker) was doing a great job at taking care of their tachycardia, but there was something in the propranolol (a non-selective bb) that both had originally started with that was helping their brain. Why they get these episodes, we may never know. So, while we were still at Stanford, I messaged the girls' cardiologist and asked him to please find a non-selective beta blocker that wouldn't lower their bp too much. So, at my daughter's follow up with her local cardiologist (he was anxious to hear about her EEG findings, boy was he shocked!) I explained what happened at Stanford, and he had done his homework, as well, and came up with Nadolol. It's an old, rarely used beta blocker that seems to be controlling their POTS much better and also taking care of whatever was happening in their brains, thereby reducing their episodes. My youngest still has them some, but only if she starts getting tachycardic. She was worse, so it would make sense that it would take her longer to settle down. The original propranolol that they were on worked the best, but since it decided to stop working one day, the Nadolol seems to be the next best thing. I knew it wasn't all in their heads! Now, if we could just find a cure for vertigo... off to research!!
  11. I would say it at least has something to do with your pulse. Looks a bit high. I know my girls definitely are sympathetic when it gets into the 100's. Are you on a beta blocker? Some Florinef might perk your blood pressure up a bit too, which might actually take care of the high heart rate.
  12. Thanks @p8d and @Pistol! Sent a message to her PCP this morning requesting some AI labs, just in case. It's something you don't want to let go. I'll keep you updated!
  13. Ha ha! Well, I think flying over to your house and setting you on fire would not be a good thing to do! I do understand what you are saying and it brings me to the thought that I shouldn't probably describe them as "fevers", but as a fluctuation of normal body temperature that makes them feel unwell. A true "fever" per se, maybe not, but rather an uncomfortable state to be in. I know that when my oldest was having her first go around with rise in body temp, her PCP had run another ANA and it was positive, also the titer had doubled since the previous test was run. She was started on Plaquenil and the temp fluctuations went away. She also started feeling much better! This may be nothing more than just ol' dysautonomia and temp fluctuation, but, I have a gut feeling that this might have an AI component to it as well. I'm not worried about the temp fluctuation, it's the fact that it makes them feel like they've got the flu. If they didn't feel bad, I wouldn't even give it a second thought.
  14. Hi @Pistol and @p8d! My oldest daughter is being treated for AI. They don't really know what kind she has (other than Hashimoto's), but her ANA titer had gotten to 1:160, which I know isn't high, but doctor said a definite positive. My mom has lupus, dermatomyositis, and Sjogren's, as well as EDS (which is not AI). So, my gut has been telling me what you both have said. The low grade fevers, generally not feeling well, and extreme fatigue. My oldest is on Plaquenil and had gotten her fevers under control for about a year, but now they have popped up again. What is SCIG? My mom had been receiving Rituxan infusions, but had to stop for some IVIG. Think this will warrant a message to their PCP. Thank you both for confirming my gut, it's usually right, but occasionally is just indigestion!
  15. Hi @Pistol - It's weird, but normally my youngest loves the heat! We live in CA and our area is very mild. Not too hot, not too cold. Humidity is mid 60's which is average for us. This year the heat has been affecting both of them, even though it's not real hot. It is about 73 today, so shouldn't even break a sweat, but she's felt terrible. My oldest (who always has trouble with the heat) was having these low grade fevers today, too. The fevers never get above 99.7, but when their normal is 97.6, that's quite a jump. Oddly enough, too, they don't feel as bad at 99.7 as they do at 98.9 or 99.1. My worry is that this is autoimmune. Hoping you're right and it's just summer!
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