I had a ruptured aneurysm in my ICA causing a SAH last September. The aneurysm was coiled. I then developed hydrocephalus which caused a vasospasm and I had a VP shunt after time in ICU.. I was recovering well when my shunt blocked both ends and it had to be replaced. Since then I have been struggling with headaches, sensory overload etc. I was then told the shunt was overdraining and it was altered again. Headaches are getting worse and I am not sure whether this is normal. I have been trying to contact my consultant (in the UK) but cannot get an answer from his secretary.
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Hello @Bordercolliemum and welcome!
It is so very good to have you here with us! One of our constant observations is that everyoneās story seems to be unique, so my experience will not be the same as yours.
However, it is always nice to meet a fellow rupturee who also developed hydrocephalus. My shunt was working just fine, until, well I developed meningitis (I understand we (with a shunt) are more prone to getting meningitis). Out went shunt #1, in goes shunt #2. I have had shunt #2 for about 1 1/2 years now, and from my experience I do NOT get headaches regularly or with increasing intensity. I also have sensations when leaning quickly (presumably with the fluid jostling around suddenly), but nothing much beyond that.
I did look up some signs of shunt failure, and I found the enclosed via the Hydrocephalus Association (US-based):
Yes, headaches in adults might be a sign according to this organization.
Of course, you know far better than I how to navigate the UK health care system, but I definitely think that escalating it this to get your doctorsā/nursesā attention might be helpful, so that they can make a proper medical assessment.
Additionally, do you know what type of shunt you have? I ask only because mine is magnetically controllled, so if it needs to be adjusted, they stick a magnet on top of my head, and tweak it that way - no surgery required! It does make life a smidge more cumbersome when getting MRIs, as well as trying to avoid magnets near my head (wireless devices, security gates), but no major impacts otherwise.
Having been through such a similar situation, I really feel for you. I know that you an amazingly strong and smart mum - you must be to be a border collieās mum! Please do keep us posted as to how you are doing, and what else we can do to support you. I will be holding you close in my thoughts!
Fin Whale Fan 
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First topic, you have done well! Welcome! I need to thank you for teaching me something, I did not know hydrocephalus could cause vasospasms. I had vasospasms after I ruptured but not hydrocephalus. I can suggest a couple of things, if you have a patient portal, go through that as opposed to trying to call. I am in the USA, but I can get a faster response through my portal and itās my neurosurgeonās assistant that normally did the responding after conferring with the Doc, now it seems the assistant has an assistant so the RN now speaks to the RNP who then speaks to the Doc if needed. The other suggestion may not apply but if you have a Neurologist as many of us who rupture end up with take that route. The one I have now is under the same medical umbrella as my neurosurgeon so it makes it much easier as she can see whenever he orders an image. Not sure how the UK operates. Other than those suggestions, keep calling your consultant. I have learned here we often end up having to step up and be our own advocate.
Another thing I often suggest to members, but unsure if it applies to folks with a shunt that might not be working well is to stay hydrated. My Neurosurgeonās mantra is hydrate, eat protein, hydrate some more, rest and repeat. It really does help with headaches, seems our brains need all three to recover.
Hang in there, be the squeaky wheel, please keep us posted!
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Thank you for getting for responding to me so quickly. My shunt is adjustable with a magnet . When it was over draining was a very simple fix but blockage needed a surgery and replacement of both the shunt and the tubing.
Will keep trying to get to my consultant
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Good! I thought surely we would have the same, but glad to get that confirmed. 
(Thank you, Medtronic!)
Yes, please keep calling, messaging whatever it is you have to do! Maybe it is absolutely not related, and just a coincidence, but better to have them make that call. If you are not already, I would also create a record of your headaches, including severity and duration, as well as any other symptoms just so they can better understand the changes you are experiencing.
Sending very warm thoughts across the Pond!
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@Bordercolliemum were you able to get hold of your consultant?
Good afternoon, thank you for thinking of me. I have been referred to headache team apparently and have to wait for over a month for that appointment. My latest MRI was ok so neurologist has said he does not need to see me. I got a phone call from his secretary after he got a copy of a letter from the genetics team which said I was unable to get through to his secretary for over a month. Anyway, trying to hydrate more as wondering if this is the problem with.my shunt and trying to sleep more.As my sleep pattern is crazy since last surgery. Was watching the videos from American site about shunts saying that they will always be either over or under drainage which can result in headaches so thinking that is what this is
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I will agree that my sleep was somewhat disrupted since my shunt was placed. My biggest problem is that I am a right-side sleeper, and my shunt is conveniently located on the right-side as well. 
So, all this to say, I canāt get comfortable on my right-side no matter how hard I try, and forget falling asleep in any other position (back or left side). I have to confess I have become a āreclinerā sleeper and I pile in lots of pillows all around me so that I am surrounded in softness. That seems to help a lot, as bizarre as that is.
Of course, with any type of brain surgery, many of us are also quite fatigued so we need to rest more throughout the day. What sort of issues are you having though?? Just wondering if there is something in our collective experience that might help out!
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I can get to sleep easily but wake after a couple of hours. I think it might be related to my shunt being on my right side and me naturally sleeping there.Sounds like your story. I think I am also getting acid reflux as well when I sleep on my back.
Having said all of that last night I could not sleep at all, no idea why. Thank you for your help and ideas I do really appreciate it
Hey @Bordercolliemum ,
My name is Merl, Iām a member of the Modsupport Team here on Benās Friends and I too have a shunt with the same magnetically adjustable valve. My initial shunt was a fixed pressure device, which worked well, until the lower tubing broke. Since then, Iāve been on a rollercoaster of symptoms/side effects. Just when I think āYea, Iāve got this thing sortedā¦ā, it throws me a curve ball from out of nowhere that knocks me off my feet.
My sleep has been a mess and trying to manage around it all has proven to be extremely difficult. Iāve found I need to take a multi-prong view. For example, I use sleeping tablets. But if I take sleeping tablets 2 nights in a row, on the third night I canāt sleep without it. Itās like my body normalises itself to needing the meds constantly almost immediately, so I need to regulate my intake very carefully. I have some high dose opiates and when my sleep issues are pain related I can take them to sleep but using them solely as a sleep aid is a big no, no for me. My system likes those too much and it sends me phantom pains, wanting more of those āniceā tablets. The more I take, the more pain it gives me. Ohh, they work, but my dosages keep increasing to manage and that sets my insides like concrete. I also use medicinal cannabis at night, it helps to slow down my thought processes which helps. Sometimes I go to bed and just lay there with my mind going tick, tick, tick going over and over and overā¦ the same incessant thoughts. The cannabis helps slow them down, allowing me to slip into sleep mode more easily.
Iāve had the valve adjusted, then adjusted back again. The neuro who did the adjustment said my pressures where higher than normal, but it seems higher is now my ānew normalā. At lower pressures it feels like my face is being sucked in through my eyeballs and the headaches can be chronic bad.
I too have issues with āoverloadā, sometimes itās sensory, sometimes its physical activity, sometimes itās sleep (or lack of), sometimes its medication etc, etc, etc, so I need to regulate it all so as not to overload my system. I used to drive for work, but early mornings/late evenings the sunlight flashing through the trees would overwhelm me, triggering headaches. Other idiots on the roads (Not me 
) would stress me out, triggering headaches. For my job I had times to keep, so Iād be rushing from one client to the next, another trigger. I would try to manage all of this with medications, but by the end of the day I was fried, another trigger point. Iāve often compared my āmanagementā of it all like trying to juggle bowling balls. I just know that at some point, one of those bowling balls is going to smack me in the head. Trying to find that āHappy medianā was never easy. Some days I could manage rather well, but then some days it all managed me.
If anybody ever tells you they know all about itā¦ itās a lie. What can work wonders for one person maybe next to useless for another. It can all be very individual to you.
Merl from the Modsupport Team
Hi Merl thank you for your message. It is great to hear from other people who have had similar experiences.
How.long was it before you could drive? It is 12 months since my rupture and I canāt see that I could drive (DVLA took my.license anyway) but does mean I have lost independence. I lost my job as a teacher. I accepted a new job the day before my rupture and handed in my notice at my old school. The new school deferred my start for 6 weeks but I had another emergency surgery for blocked shunt 2 days before I was due to start. As a result they withdrew the job offer as I was.not fit to work. So I am jobless and driving license less and wondering what next.
I get a lot of overload and I struggle with this alot. I appreciate your comments about everyone being individual in managing their condition
@Bordercolliemum youāre welcome!
Iāve got a question for all yāall, whoās supposed to be checking on your shunts and how often? Iāve only ever seen one in an adult and that was over 30 years ago and had worked its way out somehow, donāt ask but she said it happened a lot and she just had to call the hospital and let them know she was coming in.
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They wanted to take my license off me, but I live miles from anywhere and I begged them not to. They reluctantly agreed on the condition that my wife be the primary driver and if/when I drove she was with me for at least 6mths. But at times, even at 9mths I still had occasions where the wife had to take over. Every year I have to be medically signed off to be able to drive.
Your āoverloadā is not unusual, in other words āMe tooā. I ended up needing to see a psychologist, I was fighting to get myself back to work. Turns out I was only fighting with myself and I was losing. I was driving myself into the ground. The psych helped me acceptā¦ ā¦none of us are in this position by choice. We didnāt wake up one day and say āI want THISā, but here we are, so now what? Itās how we manage it all that makes us who we are. None of this is easy and anybody who tells you otherwise has never been in this position themselves. We know this because weāve lived it too and you too can get through this. We have. Some days, Iām on top of it all, but then some days crush me. Just so long as I donāt stay down there for too long.
Merl from the Modsupport Team
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Thatās a great question!
Evidently, I only learned afterwards that it was my neuroradiologist who was pushing for me to have a shunt. In my first āofficialā follow-up with him a few months post-rupture, he evidently told himself āthis person needs a shunt!ā, so that is I think what really started the process. In hindsight it was obvious when the first one started to fail because of the meningitis, as my hydrocephalus symptoms started coming back again (lack of balance, coordination, energy, and I am sure you could hear it in my speech as well the other symptoms). So, if anything like that starts creeping in again, I should reach out to the team.
I had not heard about any of them coming out before - interesting! I can see where that is possible (especially if you hit/injury your head) while at the same time I donāt think it would be easy a year plus into the latest one given that the incisions have healed long ago, hair has grown over, etc. so it isnāt immediately obvious.
@Bordercolliemum, I could not drive for about 8 months - until after the shunt was placed, and then a few months after that. Of course, I had to have EEG monitoring done to ensure that I was not having seizures first. Then when shunt #2 came back around I stopped driving again for a few months, so it was definitely over a year in total.
Additionally, I was having a chat with Judi a few months back. I have the same problem with sleep, but I was having that problem long before the rupture so I canāt blame it on that. Judi shared with me some sleep stories that do help, so you may want to see if they work for you too!
Apologies for being so brief, got to head off to work.
Sending warm thoughts your way!
Fin Whale Fan 
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I do not know who checks shunts and how often. Mine was blocked at both ends earlier this year I could tell something was wrong and went into A and E. They CTd and I had more fluid so I had to have emergency surgery and they replaced both the valve and the tubing. I then was overdraining so I was vomiting regularly and felt awful, this went on for a month and then I struggled to even walk one day, so another trip to A and E and they altered the setting on the shunt. I had phoned my shunt nurse in the meantime who said I could not have CT scans that often and I just needed to get used to the headaches, she was very dismissive. I did have an MRI in August which I was told was routine following surgery I have had but all feels a little tick boxy. Hoping that headache clinic can help. Most of my appointments are done over the phone and I am not convinced that this is the best way to treat patients, especially as I have auditory processing deficits ā¦
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Thanks Merl, I have seen a psychologist. In fact been there today. He seems to think that I will be able to work if I put the right systems in place and find the right job for my āprofileā as he keeps calling it. Not sure that there is a job for meā¦who knows I swing from wanting to get back into work to wondering what I can do, to then accepting that my brain will never be the same. I was convinced when this first happened that I could be back to work within a few weeks and was āworkingā hard to get back on my feet and back to work. Thought I could just push through, took a while to accept that that was not going to happen. In the meantime I was making myself ill pushing myself. As you said none of us has chosen this.
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Thank you both for @Bordercolliemum and @FinWhaleFan for answering so quickly! Now I need to go see if shunts were done differently 30 + years ago than they are nowš. I did ask BH if I remembered correctly and was told yes but donāt remember seeing the tube, just a spot on the side above her ear when she pulled her hair back that hadnāt healed and to me looked a bit infected. Now for a bit of research!
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