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?

Both of my daughters have hEDS. Autoimmune things run in our family, as well.

@MomtoGiuliana-that is very interesting! My oldest had bad POTS reactions to taking iron tablets several years ago. She had to have iron infusions earlier this year and they couldn't tilt her recliner all the way up if she hadn't had a liter of saline! My youngest with the b-12 went in for hydration today, 500mls, will get her b-12 shot tomorrow morning, and is scheduled for another 500mls on Thursday (with her sister!). It's a family thing! I just remembered, too, that my dad is going to get my mom in tomorrow for some! The three of them have EDS, as well. I know what you mean about the support groups, they really are "injection is the only way". Someone on an EDS group, however, recommended the sublingual kind. You can get it from Amazon! Sometimes people with Dysautonomia just react differently than the norm. I really strongly felt that it was an autonomic reaction she was having. My daughter has a lot of neurological with it, too. Something just needs to be done quickly to get her appetite up. Subject of a feeding tube came up today. Thank you so much for sharing your experience!

Hi @Pistol- she gets her shots sub-q and they are twice a week. It's just really frustrating because she had started showing signs of improvement. Now she's worse than ever. The biggest thing right now is her nutrition levels/appetite.

Does anyone have b-12 deficiency anemia, get b-12 (cyanocobalamin) injections, and have POTS? My 23-year-old daughter has b-12 deficiency anemia and gets b-12 injections. She's very I'll right now, has no stamina, lost a lot of weight and her blood pressure dropped and heart rate went up with last injection. I'm afraid to give her another one because of how she reacted to the last. Her neurologist is worried, said to see hematologist, who then said her numbers were good, even though last week she said she was anemic. Nobody knows what to do with her. This is totally unlike her hematologist to retract what she said. She's not normally like this. In the meantime her POTS and everything else is getting so bad.

I have two daughters (23 and 25) that have hEDS. Both were diagnosed by Dr. Jaradeh at Stanford's Autonomic Clinic. They have dysautonomia and POTS, as well as a few other things. Haven't heard of the specialist you've mentioned, but I hope your appt goes well!

Sounds like you have some dysautonomia. What kind of doctor ordered the test? If it was your neurologist, then I would think he would go over the results with you and explain which parts of the test you failed. You might need a beta blocker and/or some florinef, depending on what showed up. There are a number of things that you can be treated with to help make your like a little more comfortable.

@PistolA week?!!! That's fantastic! Learning something new every day!

This subject interests me because my daughter has been getting saline over the past several months. One thing she's noticed, though, is that it doesn't last long. It helps for a few days and then she's back to where she started. @PistolI am so glad you mentioned the LR, as she is going in for more saline tomorrow and I think I'll ask for the LR instead!

This isn't exactly what you're asking, but it may still apply. My daughter who is almost 25, was having some debilitating headaches recently. She gets migraines, too, but these were different. We finally figured out that it had to do with low blood pressure. She was anemic and getting iron infusions, but because iron tends to lower your blood pressure, she was having to get a couple of bags of fluids after because when she would stand up and start to move around, the headaches would get worse. We think that because she's been anemic for quite a while, that it was prompting these headaches and then the treatment causing low bp, as well. In a nut shell, you might want to make sure your blood levels are good, also your fluid levels. Things like anemia can really sneak up on you. My daughter drinks 2 liters of smartwater a day in addition to about 2 liters of regular water, orange juice, etc. So she shouldn't have needed fluids, but POTSies need sooooo much more than regular people. Hope this helps!

The first time my daughter went to the ER for what we later learned was POTS was a real eye opener. My daughter was barely conscious, everything was blurry because she was very tachycardic and in a constant state of almost passing out. The only reason she didn't pass out was because she was laying down. The doctor she saw that night we found out from one of the young residents, that he literally wrote the book on emergency medicine. He was the author of their emergency medicine curriculum that they used in med school. So, we had a better start than most, but all he did was take her bp doing a poor man's tilt table test, gave her a bottle of water, and said, "go to a University hospital because no community hospital would ever have doctors that would understand, let alone know how to treat a complex condition."