Perspectives on growing up with a neuro disorder
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Saturday, October 7, 2023
Elementary School P.E/Adaptive P.E rewrite
Wednesday, September 13, 2023
Phoenix Hydrocephalus Walk 2023
Sunday, March 5, 2023
Participating in a Special Ed Track Meet against my will (in 5th grade).
Tuesday, June 28, 2022
My experience with missing hydrocephalus/shunt related symptoms as an adult.
Tuesday, June 21, 2022
My experience with missing major hydrocephalus symptoms as an infant.
My shunt was placed when I was 16 months old. But I was showing symptoms long before that, possibly as early as when I was born. But it only became obvious that something was wrong with me when I missed multiple milestones. My major symptoms were missing milestones that involved having to pulling myself up. I was eventually hitting them, but it was a very slow process. My other major noticeable high pitched screaming. But I was either missing the majority of the others, or they wasn't noticeable enough for my Parents to get a referral to a neurosurgeon. What got me my referral was a nurse at a free clinic noticing me. She showed up to my Parent's apartment did head measurements, and got me a referral to my childhood neurosurgeon. It all happened so quick that my Parents didn't realize what was going on in time to thank her. My developmental delays that I had as a infant immediately got better. I had other delays that I still struggle with, but most of them got way better with different therapies as a child. Most of them are normal with people with hydrocephalus, or other neurological disorders. But there are two that my parents were told directly involved my late diagnosis. Those two are my speech impediment, and my hand tremors. I couldn't speak until I started speech therapy in Preschool. It slowly got better, but it got to the point in high school where being pulled out of class was a bigger issue than not getting the last few years of speech therapy I would have gotten before finishing high school. My hand tremors started around the time I started puberty, and hasn't stopped since then. My current neurosurgeon told me that it's not necessarily because I was diagnosed late, but it may have been caused at that age because of certain hydrocephalus symptoms coming back, or starting later on in life. I'll talk about both more in future posts. I'm hoping to write another post this week, about my experience with a lack of shunt malfunction symptoms this week.
Monday, September 20, 2021
Barometric pressure headaches (hydrocephalus)
There's a lot of blog posts about the barometric pressure headaches, and the connection it has to hydrocephalus that are either pretty long, or hard to understand so I'm going to try to avoid both.
There are two studies that I've found online that explains this problem. The first explains in scientific terms the exact point barometric pressure gets high enough that it effects ICP (intracranial pressure). The second one explains that the cerebrum either increases in size or decreases in size depending on the weather including stormy weather, but also when it comes to temperature or humidity. To be more specific the rest of the brain stays the same size, but the cerebrum changes sizes. In stormy weather, the heat, and when it's humid the size increases. But in cold weather it decreases. So if your barometric pressure headaches are worse in the summer than the winter, this might explain why. Also I live in Arizona where it normally doesn't get too cold. So between that and other desert weather patterns. I would like to eventually like to visit a colder State in the Fall to see how much more of a difference it makes when it comes to my headaches.
I also found a source while researching for this post explaining that barometric pressure issues might just be lethargy, which I've experienced far longer than the headaches itself. I noticed it as a teenager because of my age, but probably dealt with it during stormy weather long before that. My headaches started when I was 22. and I've definitely made up for not really having them in childhood during the last 12 years. Lethargy is of course is the minimum for barometric pressure headaches. The other end is headaches that so bad that you can't get out of bed when you might normally have a very high pain tolerance.
Sources are below, and I'm including more of a experience that a guest blogger wrote for me years ago.
https://pubmed.ncbi.nlm.nih.gov/33839865/
https://waltersdegree.blogspot.com/2017/09/did-you-know-some-interesting.html?m=1
http://timothy-landry.blogspot.com/2015/04/guest-blog-by-mikayla-weather-and-shunts.html
Thursday, July 29, 2021
Different types of hydrocephalus/shunt related headaches (Part 1)
I was inspired to write this post a while back, and was re-inspired again a few months ago from a friend of mine who also has hydrocephalus, and has a lot of headaches that I didn't have at his age (he's a teenager). I haven't been putting much effort in getting the post time, because I've been able to spend time with him outside of our normal meeting spot this week, and it was very important that I focus on that instead during the summer. I was also planning on researching this topic more thoroughly, but I've decided to keep it more basic, and possibly go more into detail later.
The first two is Over draining and Under draining headaches. It's seems to be commonly mistaken for meaning the opposite of what it is. Over drainage is when the shunt is draining more of the fluid that needed, and decreases in size, and may cause them to collapse over time. Which results in slit ventricle syndrome, which has the same symptoms as over drainage, but the diagnosis has to be a lot more specific. It also is most common in young adults who has been shunted since infancy. This might mean the same shunt for a long time, but I don't have a source for this. The symptoms for both resembles shunt malfunction symptoms but increases when standing, and decreases when laying down flat. From what I've heard this won't help immediately, it might be more like laying down for a nap. Just to be clear this is from the experiences from a couple people that I know, not something I found online. Underdraining headaches unlike Over draining headaches, will likely need to be fixed with a shunt revision because it's when the shunt isn't draining enough causing the ventricles to expand. It's symptoms are headaches increasing in frequency and severity. One of the symptoms is dizziness but the others are usual shunt malfunction symptoms. These are vomiting, and in older children increased irritability, poor school performance, and anti social behavior depending on the person. I also want to point out that this is all possible with adults of course, but there was a point where my source "Hydrocephalus Association" almost always focused of children, and not adults with hydrocephalus. But my source is also very resourceful, and covers a lot in just the one article.\
Barometric headaches is going to have to require it's own post because of how resourceful I can make it. I'm going to write about it based on my experiences, and the experiences of my friends with hydrocephalus. I'm going to have do more research to explain exactly how it works. But barometric pressure can affect how someone's shunt works. This can include flying on a airplane, traveling to a different part of the State or Country where the sea level is higher, hiking, or more commonly when there's a change in barometric pressure when there's overcast or when it starts raining. People reactions to it usually differs too. For example having none to little reaction to it to severe headaches without any warning. There really isn't anything neurosurgeons can do about it either. The best thing you can do is take pain killers, make it through the day, and rest when you can. Feel free to ask me about my own experiences, but I try to avoid posting anything too personal regarding my health on my blog. The links on the bottom of my posts are ones that have been recommended to me.
I should note that the source for dehydration headaches might not be as accurate as the one that I used from the hydrocephalus association, and I'm aware that people without or hydrocephalus gets dehydration headaches, but when I was researching for this post, I was told my multiple people that there's definitely a difference. The symptoms are headaches, fatigue, and change in mood. The questionable part is the article says that people with hydrocephalus should drink a lot more water, as in a glass an hour. This seemed questionable to me, and something like that should be recommended by a neurosurgeon instead. It wouldn't help that hydrocephalus and other disorders people with hydrocephalus also commonly have might cause them to not always get to the bathroom on time.
Another type of hydrocephalus related headache that was mentioned to me was humidity headaches. I couldn't find much information on it, but one of the links of the bottom is by a blogger named Skye Waters talking about how heat impacts her hydrocephalus, and she includes more personal experiences in her comments. There's also malfunction headaches but this at least should be known by anyone with a shunt, and there's plenty of information it online.
The last one I'm going to mention on this post is headaches caused my scar tissue and corroding shunts which I need to research more. But both frequently is more common with older shunts, and has more to do with discomfort with the shunts than headaches.
Let me know if there's anything I missed that should be added to my next post about the same subject. I'm also not saying that headaches are always shunt related, because that it definitely not true. But I wanted to help people understand that at the same time that there is a lot of things hydrocephalus or shunt related that can cause headaches. It doesn't always mean a malfunction, and it's also not "all in our heads".
Resource for over draining and under draining headaches
Resource for dehydration headaches
Personal opinion for heat/humidity headaches
Video by hydrocephalus association about barometric headaches (6:54)