Living with hydrocephalus: The Hydro Hangover

7 Apr

I have a hangover.  This is not good.  Hangovers are never good at the best of times, but when you have hydrocephalus, it’s a bad situation.  I would like to state before I continue that this is a pretty rare occurrence.  I have not become teetotal since my diagnosis; in the early years of my reluctance to accept my new condition I would sometimes go out and purposefully get drunk, as if to say to the rest of the world (but really more to myself), ‘See?  I am just like everyone else!  I can go out to clubs, dance too much, drink too much, suffer too much the next day and get over it!  My life hasn’t really changed completely!’.  Of course the reality was that I would suffer far more than a generally healthy person would and it would take me days to get over it.  Luckily this phase didn’t last.  I snapped out of it quickly enough once acceptance kicked in and since then I’ve been pretty healthy.  But I still have a social drink and sometimes a glass at home in the evening with dinner.  But hangovers – nah.  They’re simply not worth it. For anyone wondering how drinking may affect a shunted brain, here’s the lowdown;

  • Alcohol swells the blood vessels in the brain pretty damn quick; if you’re erring on the side of higher-than-normal pressure anyway (which many shunted folk do), it’ll instantly make your head feel bad.  If you’re erring on the side of slightly low pressure (which I tend to do a lot) it makes no real difference – yet.
  • It doesn’t take much to get drunk.  I mean, hardly anything – two glasses and I’m phone-texting inappropriate people to tell them I love them.
  • Even slight increases/decreases in brain pressure can make you pretty dizzy and it’s worse if you have a shunt.  Falling over happens.
  • The next day, dehydration of the brain means one cracker of a headache.  This isn’t from the brain itself; there are no pain receptors in the brain.  It’s all the surrounding bits which hurt.  The meninges (layers covering the brain) have pain receptors in them.  They also have blood vessels which, during a hangover, are stretched thin due to low pressure, due to dehydration.  When they stretch, they irritate the pain receptors.  The pain receptors wake up and get to work, hurting the crap out of your head.
  • Filling up on water doesn’t help either; the blood vessels in the meninges then get pushed the other way as the fluid gradually returns to the brain, irritating the pain receptors and – you get the picture.

So if hangovers of yore, before I was diagnosed, seemed bad, hangovers now are on epic proportions – even if I haven’t actually had that much to drink.  drinking-booze-courteney-cox-cougar-town-ecards-someecardsNowadays I have a hangover like this one about once or (sometimes) twice a year.  I’m very careful with how much I drink.  Sometimes, though, it just happens.  Like last night.  Friends over, long-overdue catch-up, singing along to music – it was great.  I thought I was doing all the right things; I diluted my wine with lots of ice, drank a non-alcoholic drink every so often, had a pint of herbal tea before I went to bed (not in a pint glass; I’m not a heathen.  I just like really big mugs which hold over half a pint) and it still didn’t make one jot of a difference.  As soon as I opened my eyes, I knew.  Lying still wasn’t going to help.  Pretending I hadn’t actually had any alcohol wasn’t going to help.  NO-THING was going to help this one.  Ouch.

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24 Responses to “Living with hydrocephalus: The Hydro Hangover”

  1. midnitechild April 8, 2013 at 7:47 am #

    This rings so many bells! Fortunately my hangovers don’t seem to be as bad as what yours sound like but I have been known to drink during a shunt malfunction. THAT was bad! Hope you’re feeling better soon!

    • jordantheheadcase April 10, 2013 at 12:38 am #

      Thankyou…I felt better the next morning! So you drank during a shunt malfunction?? I cannot even begin to imagine what that must have felt like. That’s crazy! 🙂

      • midnitechild April 11, 2013 at 12:34 pm #

        Crazy yes, but so worth it! No one has ever accused me of being normal! Lol. I’m a walking shunt malfunction so if I didn’t drink during malfunctions I’d never have any fun!
        I’m glad you felt better next morning 😀

  2. concernedmom October 10, 2013 at 3:58 pm #

    My son (a 3rd year med student with hydrocephalus) has been binge drinking the last 4 weekends in a row. We are currently at the hospital because of “unknown” causes of inflammation which are mimicking symptoms of a shunt infection. He has two shunts-one ventricular and one lumbar. He’s finally starting to agree with me, and is going to make an earnest attempt to stop the over-drinking. You would really think a med student would understand all the implications. I can understand though because, yes, I was young once and remember how much fun I “thought” it was.

    • jordantheheadcase January 7, 2014 at 1:06 pm #

      Hi there, sorry for some reason I missed your comment! I hope your son is better by now. It’s so hard when you’re young and at that stage; you want to fit in, you want to do ‘normal’ studenty things. I would bet that the ‘unknown’ causes of inflammation were in fact directly related to the alcohol in his system, especially as he has two shunts. Did he get bad lower back pain during this time, out of interest? I think the only way to learn to stop this sort of behaviour is through suffering the effects of it, the way I did. It didn’t take me long to stop it but when it was going on it was horrible; trying to accept that I was no longer the way I used to be and that, try as I might, I couldn’t do the things my friends were doing. It can feel terribly isolating, which doesn’t help! I really hope he’s feeling better physically and emotionally about stuff. Jordan x

  3. nicki December 16, 2013 at 2:04 pm #

    this was so helpful, im 33 and was diagnosed in sept of this year, i had a shunt fitted also but im terrified to have a drink, i wouldnt be a big drinker but on social occasions i would like a drink but im scared of something happening lol my friends think im going crazy but i wasn’t sure if it was a hangover or shunt malfunction, so i now know i can have a few?

    • jordantheheadcase December 30, 2013 at 11:44 am #

      Hi Nicki, I think you are the best judge of this! I haven’t had a glass of wine now for over 6 months due to my head not being right and the hangover I wrote about there was my last; I certainly don’t intend to have another! I think the best advice is to really, really pace yourself. You can’t drink the way un-shunted people do without suffering big time afterwards. Maybe have a small glass of something if you really fancy it and just leave it there; see how you feel the next day. If you’re fine then it’s probably ok to have one or two. But I wouldn’t have more than that because if it’s too much, the hangover is hell! Far worse than any you would have experienced before you were shunted and you don’t need the stress that it brings on top of everything else. I haven’t missed drinking at all; I only drank socially and even then it wasn’t much. I had some eggnog at Christmas (home-made…yum!) and that was fine. But that was it. I feel physically and mentally good without having a glass of something and that, in my experience, leads to a better social life all round! Don’t worry too much…just be careful and don’t overdo it! Jordan x

  4. Shannon May 18, 2014 at 9:38 pm #

    Wow, thank you so much for posting this! I am 25 and was born with hydrocephalus but never had any problems with my shunt, or any checkups on my shunt, until 3.5years ago. Since November of 2010, I have had 8 revisions, my most recent was about 6weeks ago and they actually placed a new shunt this time on the opposite side of my brain, so I currently have 2. Anyway, up until I found out I was pregnant (about a month before my first revision), I pretty much exceeded my alcohol limit every time I drank, and I would have horrible hangovers but thought I just pushed the limits. In the past 3.5 years, I rarely ever drink past a buzz but 2 nights ago I drank for the first time in almost a year and I had WAY too much. I am currently still hungover, the worst I’ve ever had, and I think I feel worse today than I did yesterday. Anyway, I’ve wondered for years why, even if I only have one drink, and don’t even get a buzz, I still have a hangover the next day. I am still in the learning phases of hydrocephalus as before my revisions, I thought it was taken care of and so did not take time to research. This post was very helpful, no more drunken nights for me, this is definitely not worth it!

  5. Stuart November 4, 2014 at 8:18 pm #

    Really interesting blog. I am currently in hospital (British living in Germany) I had a shunt fitted two weeks ago. Was home for one day when I was rushed back into hospital with terrible headaches and sickness . I am in pain when I sit up, lying down makes things better. The doctors keep telling me the pain will pass. I am beginning to regret having this thing put in my head. Would like to wish you all the best for the future. Will keep following your interesting blog…… Best wishes. Stuart

    • jordantheheadcase November 4, 2014 at 8:41 pm #

      Hi Stuart,
      So sorry to hear you’re having a rough time. It’s really early days post-surgery but it sounds to me as though you are overdraining. If that’s the case, you may need an adjustment on the shunt valve. However, if it’s your first shunt, these can take months to settle in (I’m not saying you’ll be feeling like this for months; if you’re still feeling bad in 3 or 4 weeks time, you definitely need to speak to your surgeon and ask if an adjustment on the valve is possible). However if you’re being admitted to hospital, that’s not good. Don’t be afraid to seek a second opinion too if after a time it looks like you’re getting nowhere and the headaches are not passing. It’s your right and I’ve done it before; ended up being the best move I ever made! I really hope you feel better soon; don’t forget your head is battered and bruised and will need to heal so do give it a few more weeks if you can. Jordan xx

  6. pjm19606 April 7, 2015 at 11:14 am #

    Jordan, have been living with hydrocephalus all my 54 years and only 2 weeks ago had heard the common feelings we have referred to as a “hangover”. It was perfect. Never have been able to describe to ANY of my medical professionals, my daily experiences until now.

  7. Naledi February 8, 2016 at 3:27 pm #

    I get the gist that overdrinking is a bad idea for people like us who are shunted. But would it be a bad thing to drink alcohol (not to the point of drunkenness) in general?

    • jordantheheadcase February 9, 2016 at 10:20 am #

      Hi Naledi, personally I don’t drink now..well, hardly ever! I haven’t had a hangover since the one I wrote about in my blog and even if I go out socially, I tend to stick to lime and soda. I had a cocktail on my birthday last year but I prepared in advance (ate a good meal, drank lots of water), made sure I drank water (lots of it) afterwards and as a result didn’t feel a thing the next morning. But alcohol affects my head almost immediately now, especially wine. Spirits (like vodka or gin) don’t seem to hurt my head when I drink it but wine hurts my head within minutes…very strange! So generally I think it is up to the individual. I think if you have a brain condition – or any medical condition for that matter – you should treat alcohol with caution…and respect! I’m happy to stick to my lime and sodas now. And have the occasional cocktail on special occasions!

      • Naledi February 9, 2016 at 4:02 pm #

        Thanks so much for the reply! I really appreciate it.

      • jordantheheadcase February 9, 2016 at 4:09 pm #

        You’re very welcome, Naledi. Have a lovely day! Jordan x

  8. Jannall July 28, 2016 at 6:51 pm #

    So everyone is saying that drinking isn’t an option with shunt at all while I’m gad I started reading this cause I just had mines put in last Friday that’s what I wanted to know was it healthy for me to have a drink period my sister’s birthday is coming next month we were supposed to have dinner and cook tails but now I’m a bit scared lol

    • jordantheheadcase July 28, 2016 at 7:06 pm #

      Hi Jannall,

      I think drinking can be okay for people with shunts; it’s just how much to drink that’s the real question! I can’t drink wine at all now but if I have spirits it’s not so bad…this hasn’t been the case for a while. A few years following my writing that post about the hangover, I couldn’t drink at all. Now I’ve stayed out of hospital for a couple of years and my head is somewhat settled, I find that a drink is okay as long as it stays at one drink only and also as long as it’s only every now and then! I think that drinking so soon after surgery may not be the best idea but of course, it’s up to you. Maybe wait a couple of months and then see how you go? I think the best thing to do is try a little bit of a drink (I mean a couple of sips) and see how you feel about half an hour later. If you’re okay, maybe try a bit more. Everyone is so different, you may find you’re okay. As long as you keep really hydrated (with water!) before and after you drink alcohol you may find it’s alright to have a drink. But drinking to the point where you actually feel drunk; personally I wouldn’t go there ever again!! Jordan x

  9. Mark February 2, 2017 at 2:58 pm #

    I’ve had hydrocephalus since birth and I booze gives me a hangover any worse than it would be if I didn’t have hydrocephalus. What I do find causes me issues is smoking. Nicotine and hydrocephalus do not seem to be a good combination. I find I get dizzy instantly if I smoke while boozing and that’s why I’ve decided to give up both.

    • jordantheheadcase April 9, 2017 at 1:47 pm #

      Hi Mark,
      Thanks for your comment…yes I find that alcohol (especially wine) instantly gives me a headache. Luckily I’ve not had a hangover since I wrote this post and I don’t drink much at all now…on special occasions maybe but sometimes not even then and if I do, it’s one drink maximum. I used to smoke now and then years ago and found the same with nicotine so I gave that up too. Generally I think we become more sensitive to irritants when we have a condition like this so the best thing is to avoid them altogether! Although if I had to give up chocolate I think I’d struggle, haha! All the best, Jordan

      • Michael Doherty April 14, 2017 at 4:44 pm #

        Stay away from Red Wine
        🤒🤕

  10. Michael Doherty April 14, 2017 at 4:42 pm #

    Jordan,

    I just wanted to say that your blog has helped me me in a huge way over the past year or two, thank you. I was diagnosed with obstructive Hydrocephalus in 2014 after an IED explosion in Iraq. Since then I’ve had an ETV and four VP shunt revisions.

    A couple of days ago I spent another 7 hours in Emergency as I thought my shunt was failing again. Unfortunately our overstretched health system meant that I didn’t get to see the Neurology team at all. Nevertheless the doctors were happy that my scans seemed ok.

    This brings me onto drinking….

    I still like a tipple from time to time just a couple of beers or a glass of wine. However I totally understand that I can’t drink like I used to and feel totally sh*t the day after. Your article and some of the comments have really opened my eyes to a few key points.

    I’ve considered stopping drinking – but I really don’t think a drink now and again will hurt me. But I’ll always make sure that I have a lazy day the following day so I can rest up.

    • jordantheheadcase June 27, 2017 at 2:34 pm #

      Hi Michael, well you definitely win the ‘most fascinating way to develop hydrocephalus’ award…hope that doesn’t sound too glib but wow! I’m pleased most of you returned unharmed. I’ve found that drinking is okay now if I limit myself to one and drink a lot of water either side. For a few years I couldn’t touch even a sip of wine….it made my head react terribly. Not it’s not so bad but to be honest I don’t drink much at all these days. I had a drink last night whilst out for the evening but that was the first in a couple of months. I think as long as you don’t go overboard and take the necessary precautions to ensure you feel okay the next day. it’s okay. I’ve never been told to not drink by doctors….but then I don’t think they’d ever actively encourage it, haha! The odd social drink should be fine for many I should imagine. It’s one of those things that will always totally depend on the individual. Cheers! Jordan x

  11. Melissa Belt May 12, 2017 at 1:05 pm #

    I was diagnosed just over a yr ago after having a mini stroke, also told I have early onset Alzheimers then in June my ex died. At xmas I had money problems so stayed with a friend but started drinking again and now can’t stop. I was told I was born with the condition and as it’so advanced they can’t risk doing a shunt.

    • jordantheheadcase June 27, 2017 at 2:46 pm #

      Hi Melissa,
      I’m so sorry to hear you’re having such a rough time. How are things for you right now? Do you have any other way of draining the fluid? Do you have lumbar punctures or anything like that? I hope you have some family and/or friends who can support you. If you can talk to someone at least about the drinking that would probably really help you too as with hydrocephalus or indeed any medical condition, alcohol can exacerbate the symptoms so might make you feel a whole lot worse in the long run. Sending you good wishes. Keep in touch. Jordan x

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