My life with weird neurological symptoms

Tuesday at 8:41 AM

CaroljoyNew Member

First of all, thanks to everyone who has gotten this board up and running.

Living with symptoms that are limiting, while looking like a normal person, can be a difficult path to go down. But having a community or two online makes a difference.

I am especially appreciative of the post that has been on this forum regarding the Atlas chiropractic adjustment and how that may help, as chiropractic solutions have always helped me. I will be looking for someone in the San Francisco Bay area who has this expertise.

My full much longer title would be "My life as a human with weird neurological symptoms and even weirder neurological specialist who did nothing but confuse me.

Anyway, in late April of 2016 I took a very bad fall. At the age of 66, I wanted to be more physically active. So I had started jogging. One day while jogging, my dog cut in front of me.

I was jogging downhill on a leafy path, and as I tripped over her, I didn't put my hands out in front of me to help deflect the force of the fall. I just slammed head first into pavement. (This would have to happen as I came to the very end of the leaf-y path.) From my very limited time as a martial arts student, I instinctively rolled after my head hit the pavement, so it would not reverb a second time into the concrete. I think if I hadn't done that I would have died from the blow.

I spent a full three weeks mostly lying around to let my body recover from this injury. Nothing was broken but I was bruised almost everywhere, and my head hurt greatly. I finally was able to get up and go about my life, as long as I kept things to a routine. So laundry got done, grocery shopping, and simple daily tasks. I kept up with friendships, especially a woman's group I was in. But I no longer did anything relating to helping my spouse run our business.

It was a full year before I realized that I was not honoring my idea that "tomorrow I will start back to work." There had been no tomorrow - I was very, very out of it. But at least I can't say that I was in pain any more. And I never had headaches.

By the end of that year, 2017, I saw a neurologist. I was eager to find out what she thought of my problems. I got dizzy very easily. I noticed how frequently the room I was in would go spinning wildly about. Although I had no headaches, sometimes my mind would go blank. So blank that if you had asked me my name, I wouldn't have an answer for you. I spent a lot of time at home simply sitting and staring at the ceiling. I had once been an avid reader, but reading was difficult as my eyes danced around the page so much that the words made little sense. I had no control over the eye movement.

I explained all of this to the neurologist. In return, she began insisting that I have my cholesterol tested. I'd already done that when my yearly ob/gyn exam was undertaken. My cholesterol was low. But she was insistent that I have the test re-done, as apparently with my injuries, the most important thing she could think of was my need for statins! She then filled me in on several problems her brother had experienced with his cholesterol. And for this MediCare was going to be hit with an $1,100 bill. (I'm happy to report that the clinic that employed her has since let her go!)

Some time after that, I heard that coconut would help a person keep their appetite in check. Since I was not getting out and about as much, my appetite was out of control. I thought coconut might be just the thing. I also had heard it could help the brain recover from an injury, but that seemed far fetched. Long story short, the coconut totally helped my brain. I had another step up on the road to feeling better. I started walking every other day and I resumed swimming at the gym. Sadly it didn't help with my appetite, but the exercise did.

I have had a Cat scan my heart doctor recommended and from that he could tell I have not had a stroke, which was one of my concerns. (I made my heart doctor my GP, as GP's in my area were not taking new patients and I needed someone to look after me.) Once he ruled out any stroke and the tests done to prove my heart was in good shape came back all clearing me of heart problems, he was baffled. My symptoms had changed with a new one added - it was difficult to understand what someone was saying if they sat to my left. This is from a cognitive perspective - not related to my hearing. So on the following visit, in April of this year he told me I had Meniere's.

I was told to go to a physical therapy institute here locally and that exercises would help me. Going there was a big relief, as finally there was a whole group of people who seemed interested in the idea that I had lost much of my former life and maybe they could help me get it back? Ironically, I have gone there five times and still have not had to pay more than $ 165 for all the visits combined while that dumb neurologist had cost so much more than that!

However the exercises they prescribed were too difficult to handle. The main exercise was to lightly hold on to a table that went the width of the room while moving my body along from left to right and turning my head that way also. My brain could not communicate that I needed to make that head turn. If I was doing things right to left, it was so simple it was silly. But left to right, attempting to slowly swivel the head back and forth was the most difficult thing in the world. Left to right, and I would get nauseous and start to feel like I'd black out and fall.

I also noticed that during the cursory exam, when the doctor at the institute hit my knee with the mallet, neither of my knees responded.

I have dropped out of the physical therapy clinic as the doctor there made fun of me. He said I was over concentrating and if I would simply relax then the exercise would not be a struggle. I surreptitiously talked to other patients at the place and they said that my symptom that my brain couldn't make contact with and direct the left side of my body to get it to respond actually meant something, although none of them knew what it meant. But the doctor at the clinic was indifferent. (And the neurologist was asked about that, and had only replied with an inscrutable facial expression.)

From being on a Meniere's support group on Facebook, I think I have vestibular migraines, rather than Meniere's. That diagnosis would explain the blank state that my mind goes into and the inability of my brain to communicate things I want the left side of my body to do.

I lost my appetite about two weeks ago, something that has not occurred to me ever before in my life. I know I have to eat, so I concentrated on what my body was craving. My body wanted a big bowl of raw onions. So now I make sure I have raw cabbage done up as coleslaw with some raw onions every other day, and that has helped a lot. My symptoms are less frequent and less severe with raw food. I also keep up with the coconut.

I have applied some of the minor exercises the PT clinic had given me to directing my eyes to scan the words in a book correctly, so I can read again. This is major.
Anyway that is my story in a nut shell. Any comments and/or advice would be appreciated.

 

Joney, I am glad tht you stumbled into the right specialist for your situation. On other boards, I read about people looking for years before finally getting the right doctor or technician for their problems.
Can you explain what the "functional medicine neurologist" designation is about?
I live rurally so it is very hard to even find doctors. Right now I am once again without a GP. Over the past 7 years, I have had two excellent GP's. Only the health network they were part of only wants doctors who will talk for a mere 10 minutes and then shoo the patient out of the office. The better a doctor you are, the more likely you will be booted out of that health system. I self referred myself to the heart specialist I see as he is one of the only people in my county taking new patients. I like him very much, but the difference between seeing a GP and a heart specialist is a monetary difference - huge amounts to pay to see a specialist while it is under $ 160 to see a regular GP.