In August of 2019 I mentioned to my nurse practitioner neurologist that I was having tremors in my hands and that they were getting worse. The first thing the director did was review the medications that I take and told me to ask my psychiatrist to lower dosages on one of my antidepressants. That had no effect on my tremors. Instead I was getting tremors in my legs but only when I was trying to fall asleep. When I had my next neurology appointment, I mentioned that the tremors were getting worse and I was walking slower. My NP sent me for a DAT scan that would either show or rule out Parkinson's disease. It ruled it out. There was a switch with my nurse practitioners one left the practice, and I was assigned a new one.
This was just one more thing that my body had to endure. That my mind had to endure. In 2005 I was a victim of domestic violence that resulted in six concussions, among other ailments. Every day since November 2nd, 2005, I have a headache or a migraine that varies of different levels of pain. Over the years these migraines have had other side effects, such as confusion, stuttering, loss of balance, dizziness, misspoken words, and nausea just to name a few. Now I had what the new nurse practitioner described as “benign tremors.” and that is all she had to say about it except that she would try to prescribe some medication. All of the medications that would normally be prescribed to someone with benign tremors or as they are called now essential tremors, or drugs that I was unable to take for one reason or another.
So I knew I had to find out about essential tremors on my own. So I did my research, and I found out that some of my symptoms are listed in the rare cases. I had asked my NP if it was possible that the tremors were a new symptom caused by my migraines. I know there is a lot about the brain that is still a mystery to doctors. Nurse practitioner told me that sometimes tremors just happen for no reason. And I asked her, so I just have to live with it? And she pretty much said yes. And that was the end of discussion and she tried to focus on the treatment of Botox that they were doing to try to relieve some of my migraines. I knew it would not work but I would do anything to get some type of relief from my migraines and their side effects.
As time progressed, the tremors or twitches in my legs were not just affected when I was at rest, but sometimes when I was standing, and a jerk of my leg would cause me to fall. It is now November of 2020, and in the past month also I have been prone to falling. I have injured myself several times by falling. Sometimes the falling is caused by my leg twitching and other times it is caused by a loss of balance. I had mentioned the following to my nurse practitioner, and she asked me why I kept falling. I do not know why I keep falling; I just know what happens to make me fall.
I only drive when absolutely necessary. I used to drive except when I had a really bad migraine. But with the loss of balance and the twitching in my legs that can make my foot pressed down on the gas pedal I find it necessary to not drive if at all possible. If I do have to drive I take my time and keep my foot off the gas whenever possible.
As a person, I feel like my body is ganging up against me. Years ago when I switched to the current neurology Department that I am going to now I actually had a nice consult with the actual neurologist. The doctor explained to me that my brain thinks it is normal to have a headache or a migraine, so it does, and it does not matter how the migraine is tried to be relieved. I have taken over 30 types of medication including steroid pills and regular narcotic pain relievers, which do nothing for the headache pain. My normal headache that I would have on a daily basis on the pain scale that doctors use from one to 10, I would rate that a 7, and then the levels of severity would go up to 8 or 9. A level 9 headache can cause confusion and even scalp and skin pain around my head and face. Sometimes it is so bad I can barely get out of bed.
In the past few months as my essential tremor disorder has worsened so have the severity of my headaches and they have gone up to a new normal of a level 8 on the pain scale. I am trying to do my best to figure out how to tolerate this new type of pain that is daily. With my essential tremor disorder, I have trouble writing and typing which as a writer at heart is difficult for me to adjust and try to figure out new ways to be able to do it.
I have tremors in both hands primarily in my right hand. I have tremors now and then in my torso primarily on my right side. I have leg tremors when I stand for too long and my leg will jerk and if I do not catch myself I will fall. Sometimes even if I try to catch myself I end up injuring my hand or some other body part because I fall anyways. My body is moving constantly whether I feel it on the inside or it can be seen on the outside. Anxiety and frustration makes my handshake worse and so does using it for things like holding eating utensils or washing dishes or folding clothes or as I mentioned before writing or typing. I have dropped and broken dishes so now I only use plastic or steel cups that have a lid. My son rigged up a cart for me that I used to keep books on so I can move things from one room to another specially to carry my meals, so I do not drop my plates or silver Ware. I also have to have a placement under my dish, and I have to wear some type of napkin that acts like a bib in case I dropped my fork or spoon. I am 48 years old and my sons have to help me more than they should. They have been my support and help me whenever possible come and they help me find new ways of doing things so I can still be semi-independent.
I suffer from post-traumatic stress disorder due to the domestic violence incident back in 2005. I suffer migraines with all its wonderful side effects, and this past year I am dealing with essential tremors that will only get worse. I was a very independent person and I do keep my emotions inside but sometimes it is hard not to show pain more frustration. I already had depression and anxiety before the tremors added to that. Now I am looking at my life and a whole new perspective and trying to figure out how to do things in a new way or work around how I used to do things.
As a writer it is hard for me to handwrite because my handshake well I do use a special pen that helps stabilize my hands so I can write a few lines at a time. I use a digital recorder in in writing this article I am using the dictation feature of the program. It does not always work and sometimes it does not pick up the right words, so I still have to fix those issues. Some things I cannot do for myself I had to switch from drinking coffee from a from a regular coffee pot to one of those single machines and using one of those steel go cups for coffee instead of my regular glass coffee mug. As I have new issues, and if I cannot figure out how to work around them, I ask others if they know of some way to do that. I recently posted on social media that I was having trouble distributing my pills for the week because when I pour the bottle out all of them came out and then I would have to put 'em all back which is very difficult. Someone mentioned a product that just allows you to dispense medication one pill at a time, so I bought it and it seems to be working for me.
I get a lot of my information that I should get from my doctors from the essential tremor foundation. I recommend that with any diagnosis from any doctor let the patient does research. The research helped me understand what I was going through and what I may go through in the future but someone else never explained to me.
I share my story because I have a feeling I am not alone. And also if you or anyone has similar issues you are not alone either even though it can make you feel alone, and also like a burden to those who have to help you.
To find out more information about Essential Tremor Disorder, you can visit their website (as I often do to get updated information) at https://essentialtremor.org/
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