DizzyGirls

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.

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!

@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!

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.

@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.

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!!

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.

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!

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.

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!

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!

Hi all! My mind is a bit muddled at the moment and I can't remember if I asked this question already, so please excuse the repeat if I have! My daughters have been having these consistent low grade fevers for the past several weeks. Both of them! Thought it was a virus, but it's lasting too long. I know viruses can vary, but this kind of comes and goes. Since you all have some form of dysautonomia, thought I'd ask if any of you have problems with fevers and allergies. Their PCP told me that it's not unusual to have a fever with allergies hence the name "hay fever". I've had bad allergies all of my life and don't normally run a fever with mine, but I don't have dysautonomia. So this is where you all come in. From the pool of dysautonomia sufferers, do you have fevers with your allergies? I've got this weird feeling that this is not allergy related. My oldest already has Mast Cell issues (youngest doesn't) and mild autoimmune issues. That being said, my gut is telling me this is more than just allergies. What do you all think?

What about a little caffeine? Not a cup of Starbucks, but like a Coke? My daughter gets a ton of headaches, and she cannot tolerate a lot of caffeine, but just one Coke a day really helps her. Think it might help her very lax blood vessels to constrict better. She has EDS along with POTS. Just a thought....

@Derek1987 - Thanks for the suggestion for the "blue light app"! Just downloaded it on my phone and going to download it on my daughter's phone. She currently cannot use her phone, and hasn't been able to for the past year. It causes very bad vertigo. It has something to do with the screen, not even the motion of it. Hope this works!

Thank you everybody! Guess we'll keep doing what we are doing. Lowered the Florinef to see if that would help. Keep taking BP when odd things happen, at least I'll know what THOSE things are from. Extremely hard for her to get out and about. Wheelchair helps, but not always. Last night after she ate dinner, started to get really sleepy. Took her BP, which was actually normal. Still think it was probably some sort of post-prandial reaction. This disease makes it really hard to have any assemblance of a life. I'm not a goer or a doer, but lately it's just been overwhelming. Any thoughts and suggestions are always welcome! @Pistol - I wonder if fluids would help?? It's a thought!

I'm going to make this quick, maybe I'll have time to fill in the blanks later, but.... Does anyone have trouble with their BP going up and then way down hours later? My daughter was complaining about headaches, dizzy, vertigo, migraines, etc. Checked her BP and it was high (for her) 115 over 69, pulse was 74. (I know this sounds very normal, but it is not for her. 104/70 something would be normal). Every time she complains of her vertigo getting worse, or a migraine, or even just plain ol' lightheadedness, her BP is up. THEN, all of a sudden, it will just crash. I mean like 74/53, HR around 90 something, maybe 100. What is going on? Her BP was always consistent, then a couple of months ago this started happening. Started taking Nadolol (20 mg 2x daily) a couple of weeks ago, but this started before that switch. Can anybody shed some light on this?

Both my girls take florinef to raise their bp. Lately, my oldest is having trouble with her bp just dropping. It was actually 72/54 hr about 90 something last week. Going to cardiologist this week. Might ask your doctor for some florinef. It's a lifesaver!

Yes, my daughters are the same. For them, their adrenaline has to settle down, then they crash.

Hi CarolS - The IH is most likely just a "side note" along with their other issues (could also be due to her cervical issues and spinal fusion). Both of my girls have POTS that stems from their EDS. My oldest has migraines, vertigo, and newly added seizures. The seizures are non-epileptic and are most likely due to her POTS not being well-managed. My youngest is having the same problem with the seizures and she has vertigo, too. The seizures are most likely as a result of a switch from propranolol (a non-selective beta blocker) to metorprolol (a cardiac blocker). I think they were benefiting from the non-selective aspect of the propranolol, but it just stopped working.

Hi outofadream! Well, we haven't seen the cardio yet, that's next week. I did send him a message to make sure he had done some research as to the proper non-selective beta blocker both girls might need. Nurse said she would make sure he had done his homework! So this happens to you too? My daughter had an inpatient EEG recently at a very well-known university hospital, and they said they were psychogenic and she needed therapy! Could have strangled the doctors! Thanks, she's just fine, and we'll be seeing her local cardio who doesn't think it's all in her head! Soooo frustrating! You might want to check this video out, it's by a Dr. James Riviello (Vimeo.com - Autonomic Seizures & Autonomic Epilepsy) and he's a pediatric epileptologist and was speaking at the Dysautonomia International Conference. A girl stood up and asked the doctor what he knew about psychogenic non-epileptic seizures (PNES) and he said that he would have had to exhaust ALLLL other possibilities before he would ever give someone that diagnosis. He would send her back to her cardio for what he guessed she would need, a beta blocker. I about jumped out of my chair when he said that! It was a victory (a silent one for now) for we moms who are continually fighting for our children.

Yes, very interesting! I always find it amazing what actually helps POTS issues! Sometimes it will help one person, but not another. I agree with you that it would be a very good thing to have in the arsenal for very critical times. My daughter has had to have 3 lumbar punctures to release her pressure. It's sort of random how and when it occurs, so we'll be glad that it's not flaring right now. Hope your daughter can turn around on her own. Those intracranial headaches are horrible!

I'm not following the CO2, but both of my daughters have tried Diamox. It made both of them pass out every time they tried to stand up. My oldest gets pseudotumor cerebri and they had wanted to use it for that. Diamox is a diuretic, so no wonder she was peeing like crazy. But for my daughters, they were losing too much salt and their bp was really low.

Thank you! Yes, going to discuss with her cardio on Monday, nurse said he wasn't in today. Think she does need more salt, but she's cut down on a lot of things that are high salt. Like bread, for one, and were not eating a lot of soup right now because it's warm weather, etc.

Does anybody's blood pressure just drop in the late afternoon and evening? My daughter's just decided to start doing this lately. She has been getting really, really dizzy later in the day and started taking her blood pressure consistently and it's been around 72/48 hr 104, 86/53 hr 99, 80/47 hr 88, just to give you an idea. Not sure if this is new or if I'm just noticing it. She's been using a little extra Florinef to get it back up, but it's kind of stubborn. Anybody experience this too?

Hi Pistol! Finding the right beta blocker is turning out to be more of an ordeal than I had hoped! The propranolol was working so well for quite a while, too. Ugghh! In talking with the cardio, he was rummaging through his brain to come up with one that didn't lower bp too much, as theirs is low already. Both have been going through increased tachycardia as of late. Not sure what's triggering that? Change in weather is certainly adding to all of this. Had some real heat, first of the season, now cooler. Not cold, but comfortable, but worse again. Oldest daughter is going in for her inpatient EEG in a few weeks, too. Bringing her sister, too. Hope they both have some of their episodes on video so that the doctors there might be able to see, as well. Hi outofadream! Your neuro has some good thoughts! I was wondering the same thing!! Sometimes I think our bodies just change, as well, not necessarily from a switch in meds, but just because. My oldest daughter's episodes started with a great increase in her vertigo, then her eyes would flutter, followed by hand/arm movements, and sometimes upper body movements. Most times there is a migraine involved, too. Most stimuli will trigger it: flickering lights are a big one, strange sounds on tv, pictures in a magazine (too much on a page, optical illusions), vibrations, and too much commotion. Talking, too. Both can have what looks like absence seizures when they get to talking too much. By too much, I mean just carrying on what the rest of the world would be a normal conversation. My youngest has more violent movements. Arms go flailing about, legs kick, upper torso bends back and forth, head jerks violently back and forth. Airplanes, helicopters, loud bass music all are big triggers. Too much commotion will stop her in her tracks. Also, flickering lights. She looked at one of those Photosensitive Epilepsy Trigger warning videos on youtube and her eyes started flickering and head started twitching. That was the biggest trigger that started it all. Actually, it was our LED candles that we have that was the very beginning. They have a little flicker to the imitation flame. Then she had watched the youtube video that started everything getting worse. Just seems that when there wasn't a beta blocker crossing the blood brain barrier to calm things down, they got worse. I did find a medical journal article on beta blockers being used to control essential tremors. So, maybe there is some credence to this.