I was disappointed tonight. I was invited with two friends to go to a church and watch a play and then have ice-cream sundaes afterwards. I got all dressed in casual and went downstairs to the community room.
I sat down and began chatting and instantly got the burn on top of my head. I thought to myself, Oh no, I don’t need this now! I immediately took some pain medicine but within ten minutes I had the burning on the crown area, top front and back of head close to the neck.
I knew immediately I would not be able to go on the outing. I explained to my friends and I hope they understood backing out at the last minute. I just couldn’t do it, even though I saw the disappointment on my friend’s face. I knew I would be sick to my stomach and if I didn’t rest’ the burning would get worse.
This is all caused from my Dystonia. Something triggers it and it always causes pain in the neck and shoulder but the burning on my head is not fun at all. I have heard it compared to cluster headaches and Migraines.
I put some information here so you can better understand what I have. My diagnosis is actually; Parkinsonism/Ataxia/Dystonia.
The Parkinson’s part has affected my split-second thinking and short-term memory. I have internal tremors also. My head sometimes tremors and can be seen. The Ataxia part is what I deal with on a daily basis. Falls and balance. Once I am up and standing for about ten-fifteen minutes; I totally become weak.
If I am walking, it doesn’t seem to do this as bad. Baking, doing dishes, cleaning the tub, housekeeping, all cause me to lose my balance. I have already explained the Dystonia. I wish I didn’t have any of this. My brother had Mulitple System Atrophy. My Neurologist has suspicions about me having some of this too, although it is not hereditary. There is more information proving that environmental. Things like electrical towers, pesticides are something that my brother and I were surrounded by. The true test is taking, Sinemet. I have refused thus far because I am not ready to see dancing flowers or quit driving as my brother had experienced. If I do take the medication and it works; I have the Parkinsonism. If I take it and it doesn’t work, I have the Multiple System Atrophy. I don’t know if I really want or need to know. What difference would it make? It wouldn’t fix me, so far now, I am not taking it.
The headaches will leave. They usually last from one-five days. They are coming a little more often, so I may have to break down and try something else stronger. The neurologist is just waiting for my call to say I am ready. For now, I am going to do what I usually do. I will turn on the television and lay down and ask God to heal me once again.
SINEMET®
(carbidopa levodopa) Tablets
DESCRIPTION
SINEMET® (carbidopa levodopa) is a combination of carbidopa and levodopa for the treatment of Parkinson’s disease and syndrome.
https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/
One of the most common types of dystonia found in Migraineurs is cervical dystonia, also called torticollis. Torticollis can be primary or secondary. This type of dystonia can involve one or more of the muscles of the cervical spine, neck and upper body including shoulders and upper chest.
In the end, it is hard for people to understand how in five-to ten minutes, I can do a complete turn-a-round. I don’t look sick unless you see me weeble-wobble and headaches don’t show on the outside. I just know me and I know how those burning headaches feel. So for now, I will talk to you later. I’m going to turn the TV on and rest.
Who I am 