Hydrocephalus and sensitivity to noise

Edit: I've learned more about this subject recently, and I also started writing my blog again a few months ago, so I'll write more about it in March, and link it to this post. It turns out it's a sensory thing, and a disorder called sensory processing disorder is very common for people with hydrocephalus.

The link to the new post

.  According to the Spina Bifida Association there's no studies related to this specific topic, and I couldn't find much information outside of that site and a similar site. This is something that I sort of realized that was Hydrocephalus in at least Middle School, a few years before I started looking more into my condition (Hydrocephalus). It's not something that everyone with Hydrocephalus experience but it's common, and I've met many others online who have Hydrocephalus who deal with it. The sources I found refer to it as something people with shunts deal with, so it seems like it's something that has to do with the shunt specifically. Both sites that I found have to do with Spina Bifida instead of Hydrocephalus though. The two most common noises according to the sources I found are high pitched and loud noises. There is a range of reactions to noises that people can have, and for those that have seizures it can be a seizure trigger. There is no known treatment for those that have it as a side effect to Hydrocephalus but in general audiologists and ENT physicians can use a desensitization technique. Personally I've had sensitivity to high pitched noises since at least around the 4th or 5th grade and probably longer but I can't remember any specific situations having to do with it before that point. Except for being skittish I wasn't really sensitive to loud noises until I was an adult and now I'm sensitive to most noises. Especially with high pitched noises my reaction has always been anxiety, but in a way where it's not really noticed. Thanks for reading, I'm planning on writing about similar subjects or asking others to do it in the near future.

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8095331/k.983B/Hydrocephalus.htm

http://www.sbhi.ie/wp-content/uploads/2014/02/The-Effects-of-Hydrocephalus.pdf

Media views on Hydrocephalus: Hydrocephalus and Grey's anatomy (guest blog by Berkley)

If you’re like me and watch Grey’s Anatomy religiously, you may have noticed that, in the earlier seasons, they mentioned “hydrocephalus” quite regularly.

I’ve watched the show from the very beginning, and every time there was an episode with a storyline featuring a patient with hydrocephalus, it made me SO SO happy. This is my absolute favourite (sorry, Canadian ;) ) TV show, and so having such a popular show talk about a condition that many know very little about just amazes me.

The condition has gained a lot more attention in recent years, and I personally feel that Grey’s played quite a big part in that.

One of my favourite episodes that featured hydrocephalus was the one where Karev had children flown to Seattle Grace Hospital, and a little girl named Zola was one of them, and she had Hydrocephalus AND Spina Bifida. Her story was carried out over several episodes, so this made for a season that consistently mentioned Hydrocephalus, and, this was probably my favourite season, for that reason alone.

-Berkley (@HydroChica)

Drinking and Hydrocephalus

This subject is different for Hydrocephalus and alcohol and a lot of medications don't mix and if you have a seizure disorder drinking should be done cautiously if at all. This is from my knowledge and so it should be taken only as my opinion, but many if not most doctors will say they the same. I use to a lot heavier than I do now and before I had problems with my shunt I would barely feel it the next morning. As my health got worse I also started to drink even more, which I realize was a pretty bad idea. I would feel more of a hangover and notice it colliding with my shunt and Hydrocephalus so I stopped. I drink a little stronger liquor but very moderately, so most of the time when I drink I'll have a few beers instead. My neurosurgeon and other doctors know about it and I don't really get drunk or get hangovers considering I'm sticking to one thing. Others get hangovers that are similar to shunt malfunction symptoms which is normal for people without Hydrocephalus but is something that can be really scary for us. It can react with the "Hydrocephalus" itself as in cerebral fluid and our shunts, sometimes in bad ways but not always. This just always depend on the person. It's a good idea to drink in some kind of moderation, but that also applies to most people. My point is that if someone younger or is afraid to drink but wants to Hydrocephalus doesn't always mean not drinking.

(Guest blog by Mikayla) Weather and shunts

Tim!
(Thank you for this opportunity.)

In regards to the shunt putting up a fight when the  weather changes, its plain and simple, your shunt is going to give you grief at one point or another no matter what the weather is doing.

I myself find that when it is really hot I have the most trouble and I tend to get reasonably troublesome headaches, I have also found that really cold temperatures bring on some pretty nasty headaches as well.

I can't really speak for anyone, I can't tell anyone what the weather may or may not do... I can however, and with pride might I add, say that no one is alone with this, maybe under other circumstances you are, but hydrocephalus is something we can work through together, and the weather, be it; rain, sun, snow or hail, can't stop us in our journey to be unique in a way that only few understand.
Regards,
Mikayla

Traveling alone with Hydrocephalus (and getting back into writing my blog)

This is the first post that of several that I'm backlogging so when I do eventually post this it will be at least a month or two after I actually wrote it. I got burned out but kept on posting for a while after usually not actually posting something the day or even week that I had planned to. When I went on the adventure this post is about I ended up abandoning this blog altogether and have only written one substantial post since July. I enjoyed not having to think about it on a regular basis to keep on top of it and I plan on writing it now in a way that I don't have to anymore.

In August I spent two days traveling via Greyhound bus from Arizona to Iowa and then back two weeks later to be with one of my best friends for his wedding day. I wasn't told I couldn't fly and I haven't been given the impression from my neurosurgeon that it would be in the past. I am however having shunt problems and the idea of that and elevated pressure made me feel uncomfortable. Also not counting meals taking the Greyhound is usually half the price of flying. Some people with shunts have problems with flying but others have flown many many times without having a problem. If you want to know if you can fly or not your neurosurgeon would be your best source the majority of the time.

The other problem was that it was my first time traveling out of state (I've gone up to Phoenix a few times alone prior). I really didn't want to bring it up to random people I sat by on the bus or especially in stations so I got a medical id bracelet instead. If something went very wrong my bracelet would have been noticeable and I had all my contact info in my wallet. Of course it would be more risky for people with other conditions like epilepsy for example or if their shunt malfunctions more on a regular basis. I made it up there safe and really got to unwind for a couple weeks.

My anxiety level because of the smallness of the town and not knowing other people except for the two people I was visiting and a few others I met while up there, I'm sure it would have had the opposite affect with some people. I felt noticeably better when I was up there except for allergies because of the lack of pollen in Arizona, and I slept better. I made it up there and back safe and I took advantage of the medical id by going alone to the Hydrocephalus walk in Phoenix in October.

Taking a break from this blog, but I plan to start back up at some point.

I've had a lot of traffic on my blog since I stopped writing regularly a few months ago. It's inspired me to keep at it, but I sort of burned myself out and if I do write a actual post I don't think I'll be able to do it on a regular basis. To anyone who had found my blog through a specific post and decided to look more into it or have been following my blog, I'm not going to end it anytime soon but it will probably be a while before I start posting again. I'm going to start backlogging before I actually start posting again so hopefully time won't sneak up on me so fast. In the mean time I'm focusing on another things and get myself in a better place physically, mentally and emotionally. I know this blog has helped others and it's helped myself as well, but it's also affected me negatively in a way, making me think of the condition more than I should. I'm gonna try to start writing about others things and possibly starting a 2nd blog along with this one.

I'm stumped..

For the first time in almost 2 years, and only the second time in the 3 years I've been writing this blog I'm stumped. I've cut down on how many times I post several times but have only completed stop once or twice since I started. I took a writer's block break and traveled cross country of a greyhound bus and went out of town last weekend hoping that if I cleared my mind some I could get right back into routine. That is not the case and I'm pleased with some of my more popular posts and I'm glad my blog have been able to help people I know in person, those I've only met online and those that I've never had any contact with before. I want to continue to improve my writing skills and improve the topics themselves. I have some ideas in mind but a lot of them will take some time. If you would like to write a guest post for me let me know or even if you have any ideas. I'll start brain storming and attempt to make a back log so I could post every few weeks again even if it's just for a while. I also have other ideas for other blogs that I intend on working on some, some of them on the same subject but others not so much. I'll still probably post once in a while once or twice every two months maybe). If you need help (even though I'm not allowed to recommended medical advice) please message me. my information should be on my page.