My experience with missing hydrocephalus/shunt related symptoms as an adult.

I hit my valve hard in Janurary 2009, which had happened multiple times without any problems. Between my history of being fine after, and not having insurance at the time I didn't seek medical attention. I developed headaches soon after which varied when it comes to pain level, but got consistently really bad for a long time after. I had a CT Scan in June of that year which showed no signs of increased ventricles which I was able to pay for out of pocket. When my insurance from my job started at the end of the year I went to the ER. The scans came back the same, and I was referred to a neurologist. He gave me a diagonisis of TMJ, and it seemed that I couldn't get a refferal to my neurosurgeon. I had issues with my finances soon after including not always getting enough hours to have my health insurance through my job every month. When I was getting the health insurance. Between the two, and other issues I flkaed out for a while. I went back in 2013 after I was promoted at my job, and was able to get things in order. The scans including an MRI all came back looking normal. I was sent to a neurologist, and she tried multiple medications. It was mostly meds like low dose seizure meds that can also be used to treat headaches, because of not knowing for sure what the source was. She also tried botox, and the only time time that I noticed that it had been working was when I could tell it was wearing off months later. Between feeling like I was hitting a dead end, and having to deal with other issues I stopped going to appointments for what was supposed to be a short break in 2015. Due to finacial issues, and a lack of motivation I didn't go back until 2019. It started with more scans, and a couple other routine tests that I had done before. It ended with the same results, and no option to continue on at that point. I had a incident at work several months later that I was, and still am certain that it was shunt related. I went to my neurosurgeon, and got the same results. The scans were close to the same, but I was told that the previous neurologist had given me a referral to a neurologist with more experience that was right for me. From there I was referred to another neurosurgeon in the same office that the neurologist is at. After the routine scans, I was given a lumbar puncture which showed that the pressure of my cerebrospinal fluid was way higher than it was supposed. Since it's been confirmed that we found the source, I've been a lot more hopeful. I've had symptoms the whole time, some of which has gotten worse over time, the most noticiable one being dizziness. But since my scans looked normal, and I wasn't showing a lot of the major symptoms I wasn't able to start to get the needed help for over 10 years. Below is a link to my first post on this subject about having a similar experience as a baby. http://timothy-landry.blogspot.com/2022/06/my-experience-with-missing-major.html

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.

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://healthnewshub.org/new-research-weather-changes-brain-size-affecting-physical-psychiatric-conditions/

 

 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

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)

Alien Ant Farm's Dryden Mitchell's spinal injury

This is one of several posts where I'm going a little off subject. I've done it some before but definitely plan on doing it more often in the near future as I run out of ideas. I figure that considering the condition I normally write about there are probably people who will see this with spinal injuries, or at least spinal related birth defects. I really started to like Alien Ant Farm when they peaked when I was High School, and liked them even more when I got their album Anthology. Between Anthology and their next album Truant they were in a bus accident in Spain when they crashed into a semi that was pulled over on the side of the road. The driver Christopher Holland was killed in the accident, and caused serious injuries to the lead singer Dryden and the band's head of security, David Zajic. David suffered a fractured skull and Dryden fractured his C2 vertebrae which was made worse by the way he loaded into the ambulance. The injury caused him temporary paralysis, but could have easily caused permanent paralysis by the injury itself , or how the way he was moved right after. In a article several months later, Dryden said that the long term affects of his injury that was still a problem at the time was a lot of nerve damage and not being able to feel his finger tips. In a recent interview, he mentions the nerve damage again but not the numbness in his finger tips. He started to perform again soon after little by little and they released their next album a little over a year later.

The links below are my main sources and include that I left out, partially because I wrote this post and did all my research on different days and based it off what I could remember. The first video is a recent interview and includes Dryden talking about the bus accident and also their new album that came out this year. The first music video is their most popular singer, and a song that may be the only Alien Ant Farm song they've heard. The song is a cover of Michael Jackson's "Smooth Criminal". The second music video is their song "Glow" is from their album Truant and one of the first music videos after the accident. The third music video is "Movies" which is on the same album as Smooth Criminal, and it received minor airplay on at least MTV when it was released. The Fourth music video is "Let Em Know" from their most fifth album Always and Forever.

I wrote this blog post 6 years ago, and ended up not posting it until now. I'm trying to get back into the habit of writing my blog frequently. and decided that finishing this blog post would be a good choice, forgetting that I had finished it, and never posted. I added an extra link with more information about his recovery. I also want to add that I saw AAF at the Pima County Fair 5 years ago. I couldn't afford to go see them at their peak, and missed them my first chance or two after their hiatus ended.

http://www.mtv.com/bands/a/alien_ant_farm/news_feature_030710/

http://www.billboard.com/articles/news/75599/alien-ant-farm-recovering-after-bus-accident


http://www.mtv.com/news/1455168/alien-ant-farm-singer-still-recovering-from-bus-accident/

http://www.thefader.com/2002/09/25/dryden-mitchell-of-alien-ant-farm-slowly-making-his-way-back-after-crash

 

New link:

 

https://www.nzherald.co.nz/lifestyle/alien-ant-farm-starting-small-again/UOS67WFUXEJQYC6WOP6W26S62M/ 

Neurological disorders and sensory issues.

 I've been meaning to post about sensory issues since before I started writing my blog again last year. I was going to wait until I was able to research it a lot more, but I changed the way I decide to post about a recently, and a post that I wrote about noise sensitivity has been viewed frequently since I started paying attention to my blog stats again. Also this is important, I'm going to be mentioning sensory processing disorder in this post. It's possible to have sensory processing or sensory issues in general without having the disorder. I do not try to diagnose people with stuff, but it's also a thing that usually doesn't get a official diagnosis a lot. I'm going to mention two other people in my post. One is a minor, and the other is unable to give permission to rather she would want her first name included, and it would be quite a while before she's able to.

Sensory processing issues in common with both hydrocephalus, and cerebral palsy. Just from what I've been told it sounds like it's common with other neurological disorders too, but I'll rather have someone else write about that later on, so they can at least include personal experience. I'm including hydrocephalus because both me and a kid I'm mentoring has it, and my mentee has cerebral palsy. With hydrocephalus it's common because of the pressure build up on the somatosensory/sensory cortex. With Cerebral Palsy it has to do with the injury to the brain.

Basically when you have Sensory processing issues some or all of senses go haywire. This isn't limited to the 5 main senses either. It might include things like spatial orientation, or sense of balance. For me the big things are noise sensitivity, and not liking to be touch, or be crowded. With my mentee, it's different things but I don't want to go into detail yet without his permission or the permission of his Parents. But I have a friend with cerebral palsy that's a little older than me that had some of the exact sensory issues as my mentee. I wasn't aware of the connection until I was looking up some things I noticed about him that I at least thought was "tics" and found info online for SPD.  

My friend that isn't available to give permission for me to use her name, was given a official SPD diagnosis when she was in the 10th grade, so when she was around the 15 or 16. She spent some time in DES/CPS custody, and has been told that she would have been diagnosed earlier if it wasn't for that. She found out through special education testing. The advice she gave me was to look the kid eye to eye, explain things to him like he was younger than he is, and tell him one thing at a time so he process everything if I have multiple things to explain. My friend's main things are noises and crowds. With her it's more loud noises, but with me it's just certain noises especially scratching noises, or a bunch of people talking all at one time. She also mentioned being triggered by words or things. But I'm going to include that in another post when I've done more research, and I have two days off in a row to write a post. 

 

Hydrocephalus (sensation and perception) 

A little more information about hydrocephalus and sensory issues 

 Cerebral Palsy and sensory processing issues

Adult experience with SPD (hydrocephalus) 

Previous posts about noise sensitivity 

 

 

 

 

 

Personal experience on dealing with a learning disability at work.

Growing up and then up until I started doing research for my blog when I was around at 26, I thought that a lot of the panicking I did from having a learning disability, and possibly from other things that has to do with my brain anatomy was from me being lazy, or lacking motivation to put effort into my schoolwork. I got one on one help with my homework in the Sixth grade, but between the work load, my learning disability, and my memory in general it would take me hours each night, and sometimes cut into my sleep if not almost always. With all the effort I put into it that year I would still mostly only get C's. That part I was fully aware that it wasn't my fault, because a big part of it had to do with my low test schools. I would cram for tests and memorize as much as I could before the test, and then purposely forget everything so I would be able to do the same thing for the next test. So I would get to the point where it would be time for midterms, or finals and be screwed. It didn't help that my circle of friends were mostly honor roll students that year, and it at least felt like since they seemed to be stressing out far less about it, so I decided that it wasn't worth putting in the effort. 

When I decided to refuse help after the Sixth grade I would routinely forget to do my homework, and only remember the next morning when I got to School. I had to take a class my Freshman and Sophomore years that had to do with keeping track of homework, practicing note taking things among other things. I can't remember how much of that class included actually doing homework, but regardless it wasn't enough time. I flunked my Freshman year by half a credit, and I was flunking half of my classes at some point during my Sophomore year. A Teacher I had the next two years eventually made forced me to complete all of my homework in her class knowing that if I didn't get it done in School, that there was no way that I would be turning in those assignments, or at least not on time. Somehow she helped me get caught up, and was only half a credit short of graduating on time. 

When I was confronted about missing assignments usually during my IEP meeting finding those assignments involved fishing them out of my backpack. I would panic to pack up before class and throw any assignments I had directly into my backpack. I would always intend to reorganize my backpack later on, and of course it would only had several weeks after School started during my IEP meeting while trying to find specific assignments that ended up crushed in the bottom of my backpack. The same teacher that forced me to do my homework in my class, put a end to this habit as well. Although my backpack was still very messy, and barely organized if at all. Another thing was difficulty in forming habits, specifically hygiene and doing something specific in a class each day. What comes to mind right away when it comes to trouble forming habits is a assignment in 8th Grade Social Studies where we learned about the stock market, and we had to pick stocks and keep track of them daily for several weeks. I loved the idea but after a few days I unintentionally broke the habit of doing it. Not thinking to ask for help catching up, or possibly being nervous about it I ended up dropping the ball completely, and not completing the assignment for the next several weeks.

None of these things stopped being a problem after School ended. If anything it got harder in ways because in School most teachers were aware of learning disabilities, and in a way knew how to deal with it. I had a IEP, and had 2 or 3 Special Ed classes. On a side note I ended up staying or eventually ended up in those 2 out of 3 of those classes because of my black hole of a backpack, and refusing tutoring when it came to complex math classes. Knowing and talking to very regularly to two different people that has the same neurological disorder and learning disability that I do whom actually does put in the effort, or did while in School, I've learned that I probably would have freaked out. If I would have managed to not have missing assignments, then increasing the workload would have caused me to panic, and not get my work done.

As an adult, and working my learning disability has affected me in ways that wasn't as noticeable when I was in School. The two main things is grasping concepts, and having it take forever for me to pick up speed with new concepts. This only became a problem for the most part when I started working at Kroger. The only time my learning disability showed in restaurants jobs was when I would panic, especially in kitchen jobs when I would have to juggle multiple tasks at the same time and be risking burning food or not getting my part of the order out on time.

 

My position for Kroger is produce clerk, and I've been in the same department for almost 10 years. I was promoted from a courtesy clerk when my division restarted their cut fruit program. They had tried it at least other time before Kroger bought my division out. It lasted for 3 and a half years before they started to source it out, and it took me around 2 years before I was fast enough to always get everything done on time. I did strictly cut fruit for almost 2 years. After that for over 7 years including occasional "manager" shifts at stores that had 2 day loads where there was no ordering required the day of my shift. For the 8 months I've been strictly in the wet rack position. Basically everything that's on the wall or aisle in produce where everything needs to be kept wet is my job, including cucumbers, squash, and peppers because it's usually in the same section.Either each specific position or in general I had, and still have problems with organizational skills (especially when I panic), and forming habits. In addition I have trouble grasping concepts, or understanding the point of things. The trouble with concepts, and finding the point in things has to do with nonverbal learning disability as well. But it's either more obvious to me now, or there just isn't any childhood examples that come to mind.

Most if not all of my managers over the last 10 years, both store and produce managers has been understanding of my learning disability and usually without me having to explain. Certain managers gave me or provided me with enough hands on training where I don't really have a problem any new concepts anymore. What was done recently to avoid me panicking really badly when corporate or store policies change is to give me more than one day to switch over to whichever way things are supposed to be done. The way that I eventually got better at organizational skills is realizing how much extra effort I have to put in to fix everything after, and remembering that. I have a backpack for personal use because I don't drive or have a roommate who does. It still gets messy quickly, so I'm not sure how realizing that solution earlier would have helped. When it comes to habits what I started to do is write every habit that I forget at work, and when I'm confident that I've learned that habit, I cross it off. No comment on how long it took to make a habit to write down my list of habits that I need to make a habit of. 

One of the main reasons that I've stayed in the same department for so long is because I want to avoid a learning curve in a completely new department. There however is other departments that I've helped in that I struggled far less in. So if there's ever a problem in my department that won't resolve itself I have options that I'm not too nervous about. Just a reminder I haven't completely resolved all of these problems after almost 10 years of doing the same job. But it has gotten far easier to deal with. My point of this post was to encourage others with similar learning difficulties, trying to help those people be understood, and provide possible solutions.