Stanford Appt. For Daughters - Autonomic Testing And Their Vertigo

[DizzyGirls]

So, we finally made it to Stanford. Five months we have been waiting for this appointment. Can't believe it's over. Thank goodness!! We had to go down a day early because our appointment day started at 9 a.m. We had a very positive experience with Dr. Jaradeh and his PA Irina. He listens, talks, educates, constantly observes. I couldn't believe what I didn't have to point out to him. He noticed my daughter's skin changes and the blood pooling in her feet! On the spot he diagnosed them both with Ehler's Danlos Hypermobility Type, which was great because our previous visit with the geneticists was "our hypothesis is EDS, but...". He looked at my daughter's arms and then moved and picked up one of her legs and said to his PA, "wow, look at this". I always figure when a doctor of his caliber says "wow, look at this", it's important. Told us to be careful with her and possible subluxations, though, that's something we had thought of, just nice it was confirmed.

Tilt table test was no fun, but the girls were troopers. Almost passing out, vertigo that was off the charts and, yes, POTS. So, we came away with a mild POTS diagnosis for both, EDS-III for both, and a possible serious vestibular disorder for both (most likely familial). He had never had anybody with vertigo as serious as the girls presented and couldn't imagine how they would have been had they not had their medicine before the testing. One daughter's heart rate went up 30 beats and the other one 40 beats. So, more mild than I had thought, so I guess that's good. Still stumped with the vertigo. Here's a question: I know a lot of you have vertigo with all the things that go with it like not being able to look at busy patterns, aisles, too many people moving, just stimulation in general. Does anyone have vertigo 24/7, and I don't mean lightheadedness, it's true - feeling like you are spinning vertigo and is it progressing?

My daughters didn't get better when they were laying down. In fact, the nystagmus that the vertigo produces in the eyes got markedly worse. It was really severe. They are still fighting to get down to baseline today and I am sure it will take a while longer. We didn't leave with any medicine, because we have an upcoming ENT appointment and he didn't want to alter that at all. Was talking about putting one on SSRI's or a beta blocker. They are both already on benzo's and he said that was good. Also learned this (which could explain some things) that the vestibular nerve is located very near the parasympathetic and sympathetic nerves and when the vestibular nerve is irritated, it can stimulate the other two nerves. Interesting, huh?! Anyway, thanks for listening!

[corina]

Glad you had such a great appointment and that your daughters got diagnosed! It makes life much easier having things comfirmed by a medical specialist doesn't it?! I have the vertigo you describe on and off. It may take 1 to appr 3 days where I cannot move/leave my bed due to extreme dizziness. Slightly lifting my head makes me feel everything around me spinning. Not sure why this happens but SO glad when it's over!

[Clb75]

I've had pots for about 2 years now. I had a sudden onset which sent me to the ER on a Friday, then that next monday I was back for a sudden onset of vertigo which lasted for 6 weeks straight and was continuous. It finally cleared up on its own and I haven't had it since. I bounced between a neurologist and ENT, both of which couldn't decide what the cause was. My vestibular testing came back negative, but the neurologist thought the nerves of the inner ear were affected somehow. They both told me it wasn't related to pots but I think it has to be connected somehow. Meclazine didn't help much, nothing really did I guess, but I think once I started to get pots treatment it helped overall. I also was having ocular migraines at this time- no headaches but constant pinpoint flashes of light. They have diminished with pots treatment too. Hopefully once their overall picture starts to improve it will help decrease their symptoms.

[DizzyGirls]

Thank you for your responses! I've been brainstorming since our appt and was wondering if the girls were being treated for their Dysautonomia, if that would settle their vestibular nerve (what the doctor thinks is the problem). Your autonomic nervous system controls everything that we don't, so why wouldn't it stand to reason that it would control this also? They are on Florinef, but that alone isn't helping. Still have lots of questions for the medical staff...hope they are ready for me!

[DizzyGirls]

Robstah,

I was wondering the same. I keep thinking about this and the above posts and wonder.... Your balance is something that we cannot control, so, in my logic, that would be controlled by the Autonomic Nervous System. Sounds plausible. We see an ENT in about a week, so we'll see what they say, but I'm not ready to do anything drastic until the girls have tried some good meds for their POTS. Did they do any of the vestibular testing on you and how did it turn out?

[TaraMc9]

Glad that you had a positive experience at Stanford. I get episodes of severe vertigo where I can't get out of bed because I'm so dizzy & the spinning makes me nauseous. I can distinguish it from the dizziness caused by my POTS by the fact that when I lay flat, it doesn't help. I have no idea what sets it off & I usually just stay in bed until it goes away, which is anywhere from a few hours to a few days. Hope you find some answers & your girls get relief. Good luck!

[kayjay]

My vertigo was not related to movement or position. Even in bed I felt as though the room was spinning or rocking (like being sea sick)

Vertigo is one of the symptoms I no longer have. I went on a 100% gluten free diet (and no oats) and I am convinced that my vertigo resolved over time due to the diet change.

Your daughters are very blessed to have a mom advocating for them. My children thankfully do not have dysautonmia but they have had health issues. It's a job getting help for our kids some times. Good for you for not giving up!

[SarahA33]

Hi! Sorry I'm chiming in late!

I'm really happy for you and the girls that you had a good appointment. I'm sure the confirmation and acknowledgement was a relief to you. Reading the post, I also felt relieved in a way for you all that he took notice of the symptoms and severity of them. Did he have any opinion on the recent findings in the MRI's that you've had done and the related vertigo issues? Tilts are just awful, as usual though, sounds like the girls pushed through. I just cant imagine how much the vertigo added to the pre-syncopal symptoms for them. I'm so happy that's over for them. It took me weeks to feel better after my tilt, there have been topics on here related to that, too. How are they feeling now?

Please let them know that we all say hello! I hope you and your family have a wonderful Thanksgiving holiday! Sarah

[dancer65]

I have been following your posts glad to hear you got some answers.Best wishes to all of you hope the girls are starting to feel better, took me a while to get over TTT as well

[DizzyGirls]

I can't believe that it's been a week since our Stanford appt. And, yes, they are still trying to recover from the TTT. Sarah, as far as the MRIs and the inner ear things they found, he thought that they wouldn't cause such severe vertigo. So, that, in and of itself, is a relief to know. Gives me some knowledge as to what to say to the ENT. Now, the petrous cyst that my oldest daughter has, might possibly be contributing to her headaches. But, my mom has the same types of headaches and she doesn't have a cyst. So, think it's the old Dysautonomia really wreaking havoc with them. Wish I had more time to absorb more of this medical info I read.

Thank you all for your encouraging words and well wishes! Happy Thanksgiving!

[bkweavers]

My daughter was dizzy beginning when she woke up on March 13, 2007 until approximately 3 and a half years later when it began to clear-slowly. It was 24/7. She also described it as she was spinning. At times, it would be better when lying down but other times, it would get so bad that she would hang on to the sofa because she felt like she was going to fall off. Her dizziness got even worse when her periods became worse and happened twice a month. So, I understand some of what you're experiencing with your daughters.

I don't like to tell you this but for my daughter, we never found a medication that helped the dizziness, although every adolescent is different and what doesn't work for one, can work for another.The dizziness slowly dissipated over time. For many years, she would still get dizzy with weather changes, hormonal or illness. Because she was unable to sit up, stand, or walk for so long, she did go through vestibular therapy. She had to relearn how to walk, sit, and stand.

If you have any questions for me, message me. I would gladly talk to you or answer any questions.

Take care,

Brenda