DizzyGirls

@Pistol- I wondered about that, too. The article that I read about this indicates that it's a low cortisol issue, but they definitely make it clear that they are still researching and observing patients, so nothing engraved in stone. I wonder if it could be both. My daughter's sympathetic nervous system just won't settle down. Everything triggers it. A recent CT showed that there is atrophy of her pituitary gland, as well. The hormones that have been tested are all over the place, but getting to an endocrinologist in urgent fashion isn't happening. As always, trying to put the pieces together myself.

Has anyone ever heard of this?

Ohhh, makes sense. Sounds like one of those more specialized tests that have several moving parts to it!

So my daughter has been having a hard time with her ANS. We've been fiddling with her florinef dosage. She's also having these instances fairly often during the day where her pupils in her eyes will dilate as big as saucers! It's usually a response to some sort of sound/noise (from either inside the house or outside), following that is a blood-curdling scream. She was getting some hydration today and her doctor (a hematologist) noticed how big her pupils were! She had screamed as soon as she got in the room. She's been having this happen for a couple of months. Because of the way her eyes dilate, it just seems to holler dysautonomia . I will say that she has an audiogram coming up and an appt with an Otolaryngologist to look into her sound sensitivities, and a CT scan of the head. We are really at a loss as to what's happening. Anyone have any thoughts? She's also developed tachycardia after eating.

I'm in CA and it's not a new rx for my daughter. Her PCP started it as an off-label treatment for her vertigo. Her pain doc agreed to take it over about 5 years ago when she started seeing him. He's been a real lifesaver! Most docs now won't write a new one. I'm thankful for each month that it gets approved. Wonder if any of them live in a world that won't stop spinning!

So nice to hear of someone who had a good visit. They are so few and far between.

Yes, both of my daughters get really lightheaded. One of them actually passes out when I'm talking with her!

My daughter has had a rough go of it for the past several months....severe hypersensitivity to most stimulation, anxiety, debilitating fatigue, etc. Her current new symptom is an increase in her blood pressure. It was 140/102 and her heart rate was 80. That is much higher than her normal levels. It started on Sunday with some strange sensations. She was having a hard time explaining them. I would like to have her norepinephrine and catecholamine levels tested, but don't know how they are tested. What is the best and most accurate way?

@CallieAndToby- It's one of the most difficult things to figure out, so we've been told. A neurologist years ago told my daughter that if he had a nickle for every time a patient came to him with vertigo, he'd be a millionaire! His grandson had it, so it was something that affected him personally and he still didn't have much to offer. My daughters and I (when mine acts up) use Meclizine and my youngest and I use Sudafed along with it. Benadryl also works well for breakthrough. Both girls have to take benzos for theirs, as it is really hard to control. I hope you find something to help you soon!

@PistolYes, I have heard of it, but didn't know how badly it can affect a person. I'm so glad you mentioned it! Definitely something to check out. Sounds have always bothered me, as well, but not to the degree that it does her. The sound of the rain is actually painful to her ears!

My daughters have had vertigo for about 13 years. My oldest was 12 when it started. Both use several things to keep it at bay. That being said, they don't ride in elevators...EVER, can't use computers or tablets (phones are ok in very small amounts of time), reading is difficult as the horizontal text on the page is wavy to them and the words jump out, clothing patterns are a problem, etc. The Epley maneuver does not work on them. Theirs is from their nervous system, not inner ear. Keeping a check on bp is important, too. A lot of times their bp is low and end up with both vertigo and lightheadedness.

I have not tried that one. My daughter has vestibular migraines and her neuro had her try the Aimovig injection. Don't try it (just throwing that out there in case it's ever recommended to you). It gave her worse vertigo than she already had! She uses Sumatriptan (Imitrex). Benedryl can be helpful, too.

@Pistoland @yogini - Thank you for your suggestions! This has been one of those weeks! My daughter’s blood pressure has been going up in the late afternoon almost consistently the past couple of weeks, but we’re just now putting it together with the way she feels. She’s got some really strange things going on - very sluggish to where she almost can’t move, severe anxiety, the aforementioned rise in bp, and an extreme inability to tolerate sound, commotion of any type (even the slightest bit elicits her hands on her head or a scream, etc.). I’ve sent messages for her to her cardiologist and neurologist to get their input. Is there a type of Dysautonomia that will do that? I know that Dysautonomia can cause some really wacky symptoms at times, but these just really take the cake! She’s exhausted, I’m exhausted…. Any thoughts?

My daughter’s blood pressure is 134/90 and pulse is around 62. This is too high for her and is causing her to be really sluggish, have great amounts of anxiety, and is just generally not feeling well. Anybody have any idea how to lower her bp without lowering her heart rate?

@RecipeForDisasterand @MomtoGiuliana- Thank you both! I actually received our Amazon order today of the methylcobalamin sublingual! My daughter said she didn't think she could do the drops because they'd probably taste like vitamins too much, so we opted for the sublingual. Ok, so you don't do the shots while doing the sublingual? I was going to ask that. Also, these I noticed are actually 2000mcg instead of the 1000mcg of the shots. Is that too much or should I cut them in half?