Recovering from viral meningitis

I was diagnosed with viral meningitis in August. I was not given any information on the illness just discharged from hospital and told to rest.

Now every few days I get most or some of the symptoms back which I find very distressing as it feels like I'm getting sick all over again.

I now suffer from panic attacks so if I'm not sick. I feel like I am. I do have good days and cherish them.

My gp has been honest and told me he knows very little about the illness.

Trying to find out how long I can expect to feel like this is impossible. I'm finding it quite depressing

17 Replies

  • Hi there

    I could (and think I did write a similar post!) I had it in April and it has been a painful 6 months and yes GPs are in the dark. It will ease and get better but I've had some help..meningitis now (amazing charity) have funded some cranial oestopathy for 10 sessions and it's saved me basically! They did some research on complimentary therapies aiding recovery and it's oestopathy, reflexology or acupuncture and I personally have had such relief from oestopathy. If you want to PM me and ask anything etc please do. I didn't start to feel better until July and even then and now get hit with overwhelming exhaustion and bouts of anxiety. The meningitis now charity website is also good and I rang their helpline too crying to then couple of times too .keep going and listen to body and rest can heal xxxx

  • Hi. I have been really suffering after being diagnosed with VM after a lumber puncture about 2 months ago. Initially i was ill for about a week, and then i felt really well. This last week i have been so giddy. My neck and head hurts and my lack of co-ordination and memory loss is quite worrying. The doctors say they can do nothing to help me. I am a single mum. 2 kids, 2 dogs and self employed. It's a complete nightmare. Do you suggest i have an osteopath or something as i am at a loose end and will have to go private now as doctors have closed the door on me.

  • Hi.

    From my experience you are very early in your recovery. I found resting and eating well was key to my recovery. Even then it took 6-8 months. Easy to say when you have children and need to work to pay the bills. Don't be proud accept any help that is offered by friends and family. If it's not offered ask!!

  • Hi Deidreoc,

    I had VM in March this year and I am still not back on my feet suffering severe headaches and vertigo plus other complications. I have written several posts on previous postings by jcrome and Justinp and Jonah if you can read those the advice may help. It can take upto 18 months to recover although some people do so sooner so you may be at the beginning of this recovery journey. I tried to recover quickly and pushed myself to get back to my normal activity and work however the VM had other ideas. I have now accepted that for now I need to rest. I have had the opportunity to learn more about myself eg I have far more patience than I ever knew.

    If you read through previous postings, you will find lots of info and advice and realise that you are not alone in this illness.

    Best wishes. X

  • Hi there. i was put in the hospital a year ago with viral meningitis. Was there for 6 weeks then they sent me home, with having a nurse coming in everyday. I was put on IV and she had to change it. I was on that for 3 weeks. I am still totally confused about why I got it. One doctor said because I had chicken pox as a child. I have difficulties believing this though. Still to this day I am not myself.

  • Hi there, I contracted viral meningitis 6 weeks ago and have had fatigue, pain throughout my body and almost daily headaches since. I have also noticed that I am more clumsy than I used to be and generally quite weepy. I live in New Zealand and was given no advice or follow up after my discharge from hospital. I have found this illness very isolating as I have never met another sufferer, even though I have worked in the pharmacy field for many years. I am 43 and was very active and lively, now I feel so tired and unusual I'm not sure when I will be well. Like you my GP has no prior knowledge and figured like flu I would have recovered in approximately 2weeks. I don't tell my partner how awful I feel as I believe he also thinks I should have recovered. I am sorry that I do not have any real answers for you, however your post correlates with me and I just wanted to reach out to you. I hope we both will feel like our old selves soon. Take care, Jo

  • Please tell your GP to refer you to a neurologist, they will be able to help and if not pass you onto someone who can.

    I was diagnosed with VM in July 2012, I was in hospital over night, misdiagnosed, I ended up going home only to be back in hospital less then 12 hours later, told to 'rest' at home; 5 weeks later I was still the same, headaches, nausea, pain in my neck and head, legs barely worked, no appetite and light and sound sensitivity (I could go on)

    By The time the neurologist saw me he said I had Chronic Fatigue (m.e) which was the end result of the VM, I was given CBT and Lifestyle management help, but this took time.

    Over 2 years later I still have small relapses, but there is light at the end of the tunnel believe me.

    I now run and have more energy, my mind is not the same as before and I struggle with anger issues and confusion at times but I am still here and I NEVER would have believed back in 2012 that I would be as happy, healthy and more confident than before I had VM.

    I still have anxieties and panics but I realise that's just what's left of this horrible, horrible illness.

    I promise you you will get better.

    Start by going to the GP and pushing for an appointment with a neurologist, the GP just needs to write a letter to them to get you referred.

    Take supplements, Magnesium, Vitamin D, Zinc, Fish Oil (or Flax seed oil) and complex B Vitamins, EVERY day!! these will help, not cure but help.

    I wish you lots of strength and if you need to chat reply and I will answer anything I can.

    Sarah x

  • Hi, I've also had Viral Meningitis at least 4 times (1968, 1994, 2012, 2013) but still here! The VM in 1994 caused the most damage- loss of feeling in right side, problems with light, noise, speech, balance, memory, concentration, mood swings, depression, IBS, constant head, muscle and joint pain. it's taken 20 years but I'm back to voluntary work. The brain and body (and spirit) can heal itself. I too was eventually given a diagnosis of ME. Please believe that you CAN recover but it may take time. I ran a Support Group for years, I've seen it happen and sharing with others is so healing. I also agree that you need to see a neurologist, don't let them fob you off with 'It's all in the mind', its not,' it's all in the brain! I've also found that the above supplements do help, I'd only add Vitamin C. Also relaxation techniques and Yoga; you need to heal the mind and 'spirit' as well. CBT & Self management also helped me, I'm now a counsellor & trainer. And of course Meningitis UK helped me, they were a real 'light in the darkness'. I'm now a 'Community Ambassador' for 'Meningitis Now', hopefully I can be a light for others, like yourself?

  • Tina you sound a lot Like me, I too do meditation and also am doing a cbt training course and life coaching in order to help others get through this. Its true, you will get through this, my days were so dark I never thought i would be better. I am a strong believer in the power of positive thoughts and in the early days of this illness I didn't have the energy to believe things would get better, they have and you will too.

  • I had viral meningoencephalitis about the same time as you, and I too get very oversensitive and get panic attacks. I have found it's almost like having autism at times combined with PTSD. I recommend having no shame telling others when you are getting overstimulated! Remember: you have no filters as your brain heals- so you get all input at once, which normal healthy people do not experience. Tell people around you if you need space, or quiet,. I find putting on headphones that are good at blocking out noise, and cover the ears with a hood on, helps em "slow down" and once i'm feeling I can be in a situation without a panic attack or major melt down or temper tantrum- I'll tell my partner I'm doing better but to please stay calm until I am normal again. If you are having a lot of trouble sleeping- I get bad nerve pain down my spine and legs- Epsom salt baths with lavender or rose or vanilla oils helps soothe and calm the mind and body. Natural is the way to go! Medications effect the brain- which is healing- so try doing easy natural things! and remember essential oils, plants, teas; these were our original medicines! They are very powerful! But it is important to remember- you're brain is healing. its injured. the brain needs a TON of rest while you heal. Try not to work. Drink a TON of water to flush out the virus, if you're dehydrated the virus will grow and stay. The mood swings, depression, anxiety, hallucinations, trouble with words, thoughts, not being able to put things together like you used to.... this is normal... and can take 6-12 months to recover even with mild V meningitis or encephalitis. But it can, and should heal to 100% if not close. Track your progress to help your doctors, and remember to be gentle with yourself!!

  • Thanks everyone for your replies. I'm still recovering. Thankfully the panic attacks are now under control. I've managed to stop worrying! Mood swings and tiredness are my major issues now. I've told everyone around me that I am sensitive and get very tired. Some don't "get it" some do but are shocked when I get angry or upset easily.

    I've just been on an activity holiday and was surprised at how much I could do

    I have a small child so I now nap when he does or I make sure I'm in bed very early to keep on top of the tiredness.

    I was very lonely and depressed before I found this site. I must say it has helped me and my family so much.

    I wish the healthcare professionals knew more about this illness and could advise us better. X

  • You need to rest! This means stay in bed for days! Your body needs this. I had VM 2 years ago with encephalitis. It hit me like a ton of bricks. Only meds I could take we're 4 Advil and 2 tylenol. I call this the meningitis mix! I was off work for 7 weeks and did half days for two weeks once I returned. Don't push yourself or let others push you. They will not u set stand how debilitating this disease can be. I still get face numbness especially during stressful times but have since become a spin instructor and have run several road races. You can do this. Praying for you!

  • I had bacterial meningitis 8 years ago and I still feel that way.I am in a constant state of panic and anxiety. I always feel sick and I have episodes of blacking out . I have to just sit down wherever I am when it happens. I also have severe dizziness and balance problems.

  • It's soul destroying. We feel that we overcome these terrible illnesses and the after effects seem to go on longer than we feel able to cope with. My panic attack have returned worse than before. Back to the doctors for me. I would strongly suggest you do too. Anxiety and panic attacks can be treated. When you think about how serious your illness has been its not surprising x

  • I haven't been able to find a physician who takes me seriously and will help me get some sort of quality of life back. I'm wondering if that is even possible. I'm getting so tired my husband says he has noticed me giving up lately. It's been so long I'm starting to feel as though I'm a hypochondriac. I've felt sort if autistic ish. Like I know what I need to do but find myself staring and doing nothing. I've always been obese but now do to my inactivity I'm morbidly so. That just makes everything worse.

  • Is it possible that you are depressed? Tiredness and not being interested in anything sounds to me like it's possible. If so you need to go back to your doctor. Your mental health is as important as your physical and neither should be ignored

    I'm suffering with panic attacks and they cleverly mimic the feelings of being ill so much that I worry that I am getting sick all vet again.

    Make an appointment with your doctor. Let me know how you get on. Just remember you had a such a serious illness. You need to give yourself a pat on the back. You recovered. You can overcome this too. X

  • Thanks so much and I will let you know.

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