Flashback 2018: Sick of the Spin

SICK OF THE SPIN

March 22, 2018Leave a comment

This post is a continuation of a prior post that tells of my health issues the past few years. If you wish to read more, continue to the post prior to this. 

I had 3 weeks of feeling pretty fabulous after nearly bleeding to death and having major surgery.  Then I got the stomach virus.  It was bad. I never vomit and let’s just say I did that a lot.  After 2 days of the sickness, I became dizzy…so dizzy I didn’t drive for 2 weeks. I didn’t leave the house and spent most of the days in my bed. I saw the doctor and she was obviously concerned. She already knew about the neurological problems I had been having and said I would need a CT scan, and a trip to see a neurologist. She said that things would happen very quickly and she said not to be freaked out when this happened.   This was in January.  I never received the call from my doctor’s office and after over a week of waiting for them to schedule the CT scan, I got mad and went to the ER.  The ER did a CT scan.  They said it was completely normal, which gave me a tad bit of relief from the worry that I could have a brain tumor. The ER doctor stated that I probably had Meniere’s disease,  and would just have to deal with the dizziness.  He didn’t take into account my headaches, the transient lights, my auras, my tight shoulders and neck, my tinnitus, my deteriorating vision, the pressure in my head and my cognitive difficulties. I went back to see my doctor, who reviewed my CT scan and said I did not have Meniere’s disease because my ears were clear. So she referred me to a neurologist.

I got my appointment, it was 2-1/2 months away.

Disheartened by the lack of quick treatment I was receiving, I vowed to get better. I have goals in my life and they do not include lying in the bed.

So  I started “dealing” with the dizziness. I learned that certain movements bring on major dizzy spells. If I look up (makes it hard to shop for anything on the top shelf in Walmart), if I lay flat on my back or put any pressure on the back of my head (one day I put my hair in a low ponytail and quickly learned the error of such a decision), and if I lean my head to the right or lay on my right side. SO I avoid those movements.

I have been having “transient visual disturbances” for a while now.  These are pinprick lights that travel through my vision field.  Have you ever seen the International Space Station travel across the night sky? That is what the visual disturbances remind me of.

I also have auras.  I no longer have the pain that used to accompany these auras when I had migraines. A year ago I got the daith piercing and it has helped with that aspect of migraines. My auras look like the flashing version of this:

migraine-aura.com/content/e22579/e36969/index_en.html  Artist: Amy Koba

NOT COOL.

The only thing I can do to deal with the visual disturbances is wait for them to pass.

Sometimes, I “lose” my words. I will be speaking to someone and can not remember the word I want to use. I can describe it to you, but I can not remember it to save my life.  I also sometimes, especially when I am stressed, will say the wrong words while talking. The wrong words will just pop out of my mouth. This has been great entertainment for my family for the last few years.  Now I am beginning to wonder if it’s so funny after all.  This is a scary symptom for a writer.

I also sometimes shake noticeably.  Often, the shaking is worse on the right side of my body. Just weird. I have to wait for this to pass too.

I am often nauseous due to the dizziness, and auras.

My ears ring off and on.

My eyesight has deteriorated very quickly. In the last 1-2 years, I have gone from having 5/20 vision to having 40/20 in my left eye, and worse in my right.  I have an astigmatism and am nearsighted.  This is not a cool symptom to have if you are a photographer.

I am often fatigued to the point I have to take a nap after work, and sometimes need to lay down just to let my brain rest.

All these things are working together to make life pretty difficult for me. I can’t do all the normal things I used to do. If I work too many days in a row, I end up having to take to the bed.  (Thank God, I am a substitute teacher, and am able to plan my schedule accordingly.)  I have to modify any workouts I do so I won’t have dizzy spells while lifting a weight over my face.  I have to be careful when driving and make sure I pay extra attention to the road.  I have to be careful when leaning over to pick something up, so I don’t fall. Getting out of bed is especially tricky.  I tend to go at this like a bull in a china shop, stumbling my way through the house until the spinning stops and my world rights itself. One of these days I am going to fall. It is just a matter of time.

I am sick of spinning. I am to the point, I just want to know what is wrong with me-whether it is MS, a pseudotumor, or any other number of neurological diseases.  Even better I would love for this to just go away.  If I knew what this was, I would know what I need to do next. I hate being in limbo, waiting…

Patience is not my virtue.