Travels With Lewy – Headaches and Other Aches

As those of us progress on the road with Lewy, we find that there are many aches but the most common are headaches and joint pain or aches. When I talk to my non-Lewy friends about the aches, their quick response is, we are all getting older, we all have aches and pains. While this is true, I believe the frequency and intensity is much different in Lewy patients.

Starting with the aches and pains, let me just say they are debilitating. The pains are not the typical joint pains, we get them too, but more along the lines of pains in areas covered by our autonomic nervous system. This is both the urinary tract and colon, quite often at the same time, the kidneys, liver, lungs, pretty much all of our major organs. We don’t always complain as it is our new normal. Sometimes we get upset because on top of the pain, we get confused and it is very frustrating. There is really no describing this situation, the pain which can be confused for heart pain, the confusion, anger over not being able to express ourselves and the knowing that this is never going to get better. There are things like Tylenol and other pain relievers that help abate the symptoms but they only work for a small period of time.

Mother and daughter

The headaches are an entirely different story. Migraines, if that is actually what they are, come quite frequently, almost daily. Most people who experience migraines get them in roughly the same area. With Lewy, these “migraines” can hit you on either side of your head as well as the front or back. The intensity is pretty much the same on any side unless the Lewy Bodies have proceeded further into your brain. Then they can be more painful and last a little longer as the Lewy Bodies have found a new area to attack. On top of the pain, this brings on depression. All the while we do our best to carry on, for ourselves and our families.

Most times these headaches are treated like regular migraines but they are not. These Lewy Bodies, protein build ups, attack certain areas until that area is depleted of healthy cells. So my headaches can be in the front or back, the left or the right. I only speak for myself as we are all different. For me if there were one thing I would wish to be different, it would be these daily headaches. Again just for me. When you add the other symptoms onto the headaches, the hallucinations, delusions, rigidity, nightmares, acting out dreams and more, you get a cocktail for a person who may become nasty, miserable, etc. We know our caregivers do a lot and do not need the extra grief from us, but most of the time we do not know we are acting this way. To all caregivers, we have loved you for most of your life normally, we still love you now, please accept this apology for all of us. In the words of Tiny Tim, God Bless Us All, Everyone.

Post Script. I was on a podcast on Tuesday discussing Lewy Body with some of my colleagues. You can find it on the Last Out Media website. It is called “Write the Radio” the 4th episode. Please give it a listen. I am happy my brothers and sisters at Last Out give me a forum to write about Lewy and are very open to learning more.

4 Replies to “Travels With Lewy – Headaches and Other Aches”

  1. Makes me sad…My husband never complained about aches & pain…Wish I would have known…

    1. I don’t complain to my family. I was just sharing my pains to let others they aren’t alone. I think alot of us try not to complain. Thanks for reading and commenting.

  2. With regard to pain management that is “nerve” related, Gabapentin helps me.
    The head pain I’ve been dealing with isn’t like a migraine. It comes from somewhere around my jaw or ear, shoots up the side of my brain with such intensity, I come clise to passing out.
    Does this sound familiar to anyone?

    1. My headaches are definitely migraine. On the sides near the top of my head. Causes blurry vision, numbness, etc. As far as other pains, they are through the autonomic nervous system but Gabapentin only helps for a little while. Thanks for reading and your comment

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