Are you still doing well? I wish I could just feel a little bit better right now. Just to get some perspective and feel positive, you know?
I guess that depends a lot on your definition of well. At the moment my hands are numb, I’m exhausted, dizzy and with a slight headache. My stomach is not happy. I’ve been much worse than this. I’ve been better. Both today, actually, but generally, too. I’m functioning better on Effexor than I did on other meds and med free. I plan to go to the gym later. The first 20 minutes will suck very much. I will be glad I skipped lunch. But, experience tells me I’ll feel better after and keep feeling better for a while.
Mentally and emotionally, I’m good. This is my life. I make the best of it. I’m grateful for the things MAV has given me - dire necessity which led to hiring good help that allowed me to grow my business, friends here, the ability to be vulnerable and humble and see the important things in the world, the knowledge that my family and friends truly care about me. I feel blessed to have been given these lessons. And I feel closer to God. My faith is stronger. I don’t see myself as being a victim, so much as having been given an opportunity to learn and become better. Adversity is not fun, but it reveals our character. I’m ok with who I am now. I have come to a place of acceptance and peace, if not necessarily good health. There is still so much I can do.
I do agree that living with this does show you some really important lessons, and I am grateful for that too. I do think that this can be heavily managed and that we can feel much better. I really do believe that. But I think it always has to be managed. May I ask what testing you have done? Have you done any hormoned testing?
Emily, you are a gifted writer.
I think I’ve done all the testing, including hormones. Who knows, though. I see a neuro-ophthalmologist next month. I’m sure he’ll devise something new, expensive, and ‘interesting’ but not particularly illuminating.
Let me think:
Neck and head X-rays
Bloodwork for every major autoimmune and a bunch of others
MRI/MRA with contrast
Surely, I’m forgetting something. Since this major incident began in mid-September last year, I’ve seen a doctor, had a lab or went to some form of therapy (physical, VRT, talk) over 80 times. I’m on a first named basis with my pharmacist.
Did the VRT seem to help at all? I apologize that I am asking you so many questions.
I’m just waiting for my husband to come around and take me to the gym. I gave up on work for today. I still drive, but when I’m feeling like this, I tend to scare myself and my passengers when I’m behind the wheel.
Yes, VRT has been very beneficial to me. I had already largely compensated from a balance perspective. I can be very dizzy and still walk a line and appear normal if I’m trying. Visually speaking, I’m a hot mess. VRT has helped me get my visual cortex back in order. Practically speaking, that means I can do my job most of the time whereas a few months ago I was looking at total disability. I’m not there yet, but I’m making good progress and I have hope.
That is awesome! I am glad to hear that!
The atlas orthogonal chiropractor was hugely helpful, too. It’s amazing how much better you feel when your spine isn’t compressed and your cerebrospinal fluid can move like it’s supposed to. My atlas was crushing my brainstem. Not fun.
I am seeing a functional chiropractor right now but have not had any adjustments. I am too afraid to do that right now.
I hurt too much not to.
In that case, it sounds like it is a great benefit for you, which is good!
It’s made a very significant difference in my quality of life.
I am glad to hear that! Please keep me posted on your journey when you can.
You too, Camille. We’re in this together.
Camille, I don’t know how much this will help you but these are the tests that I’ve had, which all came out OK:
- Audiological Analysis
- OAE (Evoked Otoacoustic Emissions)
- BAER (Brainstem Auditory Evoked Response)
- ECoG (Electrocochleography)
- CDP (Computerized Dynamic Posturography)
- VEMP (Vestibular-Evoked Myogenic Potentials)
- V/ENG (Video/Electronystagmography) which included the Dix-Hallpike Maneuver and other positional head testing
- MRI of the brain, with and without contrast
Emily, Anna, Do you guys recommend a neck MRI to rule out anything obvious ?
No one ever suggested that to me, but I didn’t have neck pain.
My neck was really bad. They did head and neck MRA/MRI with contrast and a series of special x-rays. My AO Chiropractor said she’d only treated one subluxation as bad as mine, and that woman had broken her neck in a car accident. Happily it only took 3 months of care, rather than the year it took the other lady. If your atlas is off, it pinches your spinal chord, carotid artery and CSF. Leave it long enough and the blocked spinal fluid swirls and creates cavitation in your brainstem. A regular chiropractor may not touch my neck. The Atlas Orthogonal chiropractor is a very different deal, the way a guy with pliers is different than an oral surgeon.