Support for a newbie


I was diagnosed with viral meningitis in February and after 8 days in hospital treating VZV with acyclovir and receiving morphine and T3 for pain I was released. I have been off my medicine for a month now and have been struggling. I will be totally fine one week and the next I will have the horrible headaches again and be back to taking codine and naproxen to try and curb it. The biggest frustration has been alcohol, it is a very social activity for me pre VM and now anytime I have one or more drinks I am in severe pain. I have tried just not drinking but it is making me feel like a patient still and I just want to be back to my old self. I am so paranoid about a relapse too. 

Does anyone have experience with alcohol post VM? 

What does relapsing look like? Is it even relapsing or is it just the symptoms continuing forever? Do you ever fully heal? 

I am having a hard time coming to terms with the diagnosis and often find myself thinking I was exaggerating my headache and it was all fake ... I am scared...

10 Replies

  • I totally understand how you feel. I am now exactly 2 years post viral meningitis. I have felt ill for all that time and have severe headache/ migraine and neck ache. Eventually I had to accept the illness and I spent 18 months resting and recovering. The illness can persist that long. Alcohol made everything much worse so I gave it up for 19 months and now I only have a glass at the most 2. To help my recovery I ate a very healthy diet and drank a lot of green smoothies and took vitamins and coconut oil. These have all helped in the long term not as a quick fix. VM is a serious illness and you need to work with it. I avoided stimuli such as noise, music , reading etc. but I kept having short walks when I could to keep moving. It will take time to fully recover. I also had CBT classes to help me cope with long term illness and pain. GP can refer, I got them via pain clinic. I have learned to be very patient and now I feel quite liberated that I can rest and not feel guilty. I am now feeling much better and really enjoying things I previously took for granted. Hope this helps. X

  • sometimes meningitis can be like an epiphany. "Oh I can actually sit in the garden and look at the flowers and enjoy the birds.  I don't have to be digging and cleaning and running around "

  • Oh also I have taken the following medication for the 2 years: amitriptyline, Topiramate.. These did not work that well for me and now I am pain free taking Propanol. 

  • I'm now 14 years post near fatal VM and I developed an intolerance to alcohol as a result which gives me blinding headaches so I have to avoid it now. To be honest I don't remember what it feels like to have alcohol now and I don't really miss it especially since it means having the feeling like someone kicking a football in my head. What does a relapse look like? I suffer from Mollaret's Meningitis which is reputedly rare but this is when the VM recurs for a short period and it is painful and debilitating but not life limiting. It is a common fear from VM to fear a relapse but the ways to avoid it are to listen to your body and rest when you need to rest, pushing through the tiredness is a recipe for disaster and recovery just takes time. Despite what the medical profession may tell you VM can be a serious illness and like most serious illnesses it takes time to recover from. If you take your recovery slowly and don't rush it you should be fine. You may though have to re-think what 'normal' means as it may never be the same as it was before. Your brain has taken a battering so just as if you had seriously broken your leg you need to take it slowly. VM nearly killed me, in fact I was within 10 minutes of my relatives being called back in, but it isn't a life sentence. A serious illness takes time to recover from which doesn't make you a patient it makes you someone recovering from a serious illness so changing what 'normal' feels like may be the best way to think of things now. Hang in there and good luck, Jonathan

  • I completely understand how you feel too! I'm at a similar stage time wise as you. Was diagnosed with VM mid Jan 2016 caused by HSV2 virus. I was also hospitalised and treated with valacyclovir and pain relief.

    I returned to work 5 weeks later, in hindsight, probably too soon. Being a very 'busy' person, I was probably a little impatient and over eager to return to 'normal'. Exactly as you say, I have times and when I think 'hey, I've cracked this' and other times when I'm really suffering. The headaches when they come are crippling and disabling. I cannot seem to think straight or concentrate. I'm also now suffering from pins and needles down the left side of my body, made worse by exercise or nodding my head... Weird! I also suffer much more if I drink alcohol too. I confess to pretending to drink while just having a lemonade in my glass when out socially. It makes me feel less of a patient too! 

    A very big lesson for me in this relatively short space of time, is learning to slow down, accept what is, and be much kinder to myself. If I have 'one of those days'. I now stop and take it easy! I have changed my diet and now eat much more healthily and take supplements. When I can, I also get out in fresh air and exercise too (despite those pesky pins n needles!) Each and everyone of us are different and heal in our own time. It's still early days.. Be patient, allow yourself all the time you need, and above all, be positive!! Wish you well in your recovery. 

  • Ditto everything you say x

  • I am a lot like you say Clara_Bell44, my pins and needles have subsided now but I still have a numb foot. Sometimes I do feel liberated as I now allow myself to chill and relax more and so sleep better than before. But I would like to get my life back now. As for alcohol, on a bad migraine day I find a glass of red wine eases the pain. Pain clinic put me on to that! 🍷enjoy xx

  • The whole pins and needles thing is strange! I'm waiting still for an MRI. Thankfully I'm not worrying half so much having read other's similar experiences on here! It would seem it's not an uncommon after effect! I'm intrigued on the red wine recommendation 🍷 I had a big glass of white wine last night, and I'm now really regretting it! 

  • I  told the pins and needles work like the functional weakness .. Caused by the messages not transmitting properly due to the migraine. The red wine works because it interferes with the brain processing the pain signals. Of course too many glasses adds to the headache and messes with the medication but a small amount gives me relief. 😀

  • I'm almost 4 months post VM diagnosis and I definitely see a negative impact on recovery from alcohol.  I'm struggling with bouts of headaches/pressure, exhaustion, difficulty focusing, muscle aches, and sensitivity to lights/sound.  If I drink it makes all these symptoms more frequent and more intense.  I've had 3 drinking "sessions" in the last 4 months where I had a few too many and it set me back a few days or a week.  I'm genrally OK if I have 1 or 2 drinks, but no more than once or twice a week.  I'm in the midst of taking 4-6 weeks completely off to help the body healing.

    It stinks, but it's totally worth it to feel closer to normal.  More important to let the body heal than to have a couple of drinks.  

    Best of luck in your recovery! 

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