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)
