Hi everyone, I’m so sorry to have been awol lately. I know I’ve been missing to you and mostly, I know I’ve MISSED YOU. You all are kinda my only friends anymore.
I just wanted to post a quick update. We completed my daughter’s out-of-state 2 week rehabilitation program and she is still dizzy. So no improvement in her condition at all.
I’m very disappointed that she still feels unwell, but I’m happy that they studied her so intensively while we were there. That’s exactly what I’ve been looking for a doctor to do this whole time and I couldn’t find one that would do it.
They were able to eliminate alot of the most common causes for her dizziness – most of which my daughter’s previous specialists had already been prescribing her medications for. They were able to rule-out inner-ear issues, dysautonomia issues (her body not regulating blood pressure correctly), vestibular migraine issues, etc.
I’m very upset that we wasted alot of time (MONTHS) with her other specialists that kept PUSHING treatments and drugs on us without thoroughly verifying that this was her problem. Like, why is it ok to prescribe blood pressure medication to a CHILD without verifying that she has a blood pressure issue first?! It’s not ok. When we told her first cardiologist that this medication wasn’t helping her dizziness, he offered to DOUBLE her dose before questioning whether this was the correct treatment. Obviously I didn’t go along with that because it didn’t make sense to me.
We had another doctor prescribe her anti-seizure medication to treat her dizziness. Obviously that medication didn’t improve anything for my daughter and even made her feel WORSE. When we reported that back to the doctor, he also offered to increase the dosage without additional evaluation. Absolutely not.
But at this rehab, they thoroughly evaluated her for everything. More so than any of her “specialists” did. And that’s exactly what I needed.
They’ve been able to pin-point several issues contributing to my daughter’s dizziness and it involves mostly her right eye and the right side of her neck. They found that she has vertical nystagmus and convergence spasms in her right eye. They found that the right side of her face is starting to droop (I did start to notice that on my own), and they found that she LEANS her face and body to the right side too. I didn’t notice that until they pointed it out to me, and yes she does. And they found that she has huge muscle knots on the right side of her neck. They said that those knots are probably contributing to compression on nerves and bloodflow to her brain-stem.
Dang. We noticed those knots on her neck before. We first saw them before covid – so maybe 3 YEARS ago. We were worried that it was the c-word (you know, bc we thought they were swollen lymph nodes) and we took her to 2 different pediatricians at 2 different practices just to be safe. Both those doctors told us not to worry about it. “Oh, it’s not the c-word. Just keep an eye on them and if they don’t get bigger then don’t worry about it.”
Well, they didn’t get bigger and my daughter didn’t have any other symptoms at the time, so we did kind of forget about them.
This rehab told us that her dizziness issue now may be due to a build-up over several years of her nerves/bloodflow being compressed to her brainstem on the right side – which matches with the issues she’s experiencing now with her right eye and the right side of her face/body leaning and drooping. And shoot – when you ask my daughter to describe her dizziness, this is how she describes it:
Doctor: “Are YOU spinning or is the room spinning?”
My daughter: “The room is spinning.”
Doctor: “Which way is the room spinning?”
My daughter: “To the right.”
I’m so ticked-off that I believed these earlier doctors that told me not to worry about it. I SHOULD HAVE BEEN WORRIED and I should’ve been pursuing answers 3 years ago! I just feel so betrayed by doctors. I feel like they all just dropped the ball. And we’ve been to a TON of doctors. All of them!
Anyhow, the rehab started physical therapy treatments to improve the eye issues and to release the muscle knots in her neck. They’re also ordering an MRI of her neck to see if there is a structural issue there that needs to be treated.
And that’s where we are now. She’s not yet feeling any better, and that’s all I want.
Pepper, has your daughter seen a chiropractor at all? I hope the physical rehab helps her, but perhaps a chiropractor could see if her body is in alignment? Because I know when I’m out of alignment, my right side is way off and I walk differently etc. Just a thought although God knows you don’t need someone else offering advice, but here I am. It just came to me so I thought I’d mention it. Got you in my prayers…Big hugs
Hi there Yvonne! LOVE YOU and your advice always! Yes, the rehab tried a neck alignment twice as well as a back alignment to see if it would help improve anything. But they didn’t notice any improvements from it (neither did my daughter) so they didn’t try again. Do you notice it helping right away, or does it take several tries?
so sorry to hear this. As someone who suffers from occasional positional vertigo I cannot even imagine 3 years of this. It’s the shits and I know it. Hugs to her for being such a warrior.
Oh gosh, I’m so sorry to hear that you’ve experienced similar. I imagine that it is so difficult. I’m glad you’re hanging in there too! 🙂
You’ve been missed too Pepper, it’s good to hear about the progress. But those other doctors…. seriously.
Yes, I’ve been very disappointed and let down by most of our doctors… 🙁
Yes, they could have done better I think
It sounds like progress… I hope you get some real answers soon and that she feels better.
Thank you so much Greg! I hope so too!
I’m so sorry your daughter is still not feeling better. I feel like all doctors stopped treating people in 2020, and only focused on COVID. I found it to be the case with my own health issues and we still haven’t gotten them all straightened out.
Sending love and prayers that your baby girl is on the road to recovery. 💕💕
Hi! Great to “hear” your voice! How wonderful it must be to have an actual diagnosis and be able to plot a real path forward. I’m so happy to hear that you finally found the right docs. I’m sorry she isn’t feeling better yet, and will be praying that the correct treatment brings relief very soon! She is so blessed to have such a tenacious mom by her side!
I hope this means she is on the road to recovery. Sucks that it was missed when the knots first appeared.
I’m so glad to hear that your daughter has had proper attention and you have some answers (even if they’re “Well, it’s not that”). Hugs always.
What a relief to finally being closer to better answers. It’s sad that doctors like to hand out prescriptions like it’s the answer to everything. True, they don’t know everything, but if they could just stop and listen…it makes all the difference. It did for me with one doctor anyway…he figured out what many others couldn’t simply because he actually listened.
I’m so sorry about your daughter and for how much you’ve all now been through. The rehab does sound fantastic for the doctors to actually investigate thoroughly and take this seriously. It’s not uncommon in the UK for people to be diagnosed and prescribed things without the right tests or anyone properly bothering to investigate. It’s bloody annoying, not to mention hellishly dangerous!
So these new specialists have found some key issues then, that’s hopeful, right? With any luck, some massage can help alleviate the muscle knots a little, then the physical therapy can start working on the eye issues.
I can only imagine how frustrating and awful this is. It reminds me a bit of when I was younger going through bowel issues that no doctor ever wanted to know or care about. It makes me wonder what it did to my mum, even though she didn’t fight and push like you’re doing. You are doing a wonderful job, even if it doesn’t feel like it. You’re too close – you’re her mum, you want her better, you’re seeing the negatives that have added up over the course of these problems developing. From an outside perspective, I see a fierce mother, a daughter who is finally getting diagnosed and starting on a path to getting better. It’ll be a long path, but you can only hope things will improve, and by all accounts it sounds like that will happen. Go easier on yourself, please? Sending lots of love to you both and I’m keeping my fingers crossed for your daughter 🤞💜🙏
Caz xxxx
Thank you for your support Caz. Your message is lovely and it means alot to me, especially from you because I see you as a fighter and I’ve admired your own strength that you’ve shown. I think I’ve found you online for a reason, and I’m never going to forget what a great example you are setting. Thank you for being you. You are amazing.