Meningitis recovery

[Sophiapa]

I'm a few days home from hospital following bacterial meningitis. I have no after care or follow up. I have a gp appointment on monday. I'm struggling as I feel weak, head and neck pain, severe fatigue, shortness of breath, hearing loss and terrible concentration and memory problems. What have people found best to aid recovery? I'm at a total loss, do not feel like I'm the person I was before 😥

[mand34]

Sounds like it’s really early days in your recovery. I had viral, but I had after effects for quite some time after. It has changed me, but I’m mostly ok with that now.

I’m sure someone who has bacterial would be better to advise, but for the short term, rest, rest and more rest. I found it very difficult to sit still, over did it & ended up readmitted.

Good luck

[Chip32]

I my self had BM in April this year, I suffer from vilant headaches all the time and dizziness my doctor gave me tablets for the dizziness, I take pain killers to help with the headaches but don’t go away, sorry to say we have to live with it good luck

[Lynney9]

Sorry to hear you feel so unwell. The only thing you can realistically do and must do is rest. Rest is your recovery alongside regular pain relief and plenty of fluids. Be kind to yourself and in no way think you can do the stuff you did before at least for quite a while. Your body has taken a real hit and don't underestimate its impact. Go as slowly as you can. You will begin to feel better but it's going to take some time. Good luck 🙂

[Keely-S]

I feel for you so much I remember coming home from hospital after BM 22 months ago, and it’s overwhelming. I felt very similar to yourself as many people who’ve been through it have, terrible head and neck pain, dizziness, loss of balance, hearing probs, memory probs, extreme fatigue. I had no follow up either the hospital said I should feel better ‘in a few weeks’ it was just a very kind community nurse who’s brother had had meningitis who said to me give yourself at least 6 months to recover more. At the time I thought that would be forever and not the case but it really did take that long.

Rest rest rest it is what your body and brain needs to recover from the trauma it has been through and be kind to yourself. Don’t push yourself to try and do things that feel too much, I learnt from doing that and it only set me back in my recovery. Listen to your body, when it’s had enough rest. Get as much support from others as you can. I couldn’t drive for 3 months and only managed short walks up and down the road a bit after a few months. It took 6-7 months before I started to feel like myself a bit more. Of course recovery from anything is different for each person but this was my experience and was echoed by other people who had been through it. Ultimately I was and am so thankful that I got through it as well as I did. I hope you make a good recovery, be kind to yourself 😊

[July23 in reply to Keely-S]

Very true words indeed.

[Sophiapa]

Thank you for your reply. I expected after the antibiotics to be ok. I find resting difficult but I dont want to hinder my recovery any more than I am. I guess I feel I'm letting people down for not being the bouncy me I was before. I seem to be noticing personality changes, I'm very tearful and anxious which isnt me at all. My hearing is definitely affected as I often cannot hear when people talk quietly and I feel so rude saying pardon all the time. I've never suffered with headaches but this neck and head pain is awful, especially late afternoon. I seem to have to keep reinforcing to family that this could take months, they are not very understanding as I've always been very independent. I dont know how to explain to them that recovery will take months. I've contacted meningitis now and will be having a support worker to talk to and they are sending some written information that I can show family.

[Floodle]

Hi I had BM in aug 2014 am recovered all but numb hands at night, no one can tell me why, unfortunately . It seems that everyone recovers in a different way. Best advice I can give is don’t try to rush it. I had blood checks every week and it wasn’t until end of October that the natural killer cells weren’t showing up in my blood! You won the lottery and survived , listen to your body if it needs rest give it to it.

I was juicing 3 raw beets, two apples and a large handful of black grapes, it is blood cleansing, give it a go.

Your not giving in just come continuing to survive. Love your body it has done an amazing job so far.

[Runnerma]

I understand what you are going through, as I had bacterial meningitis in 2015. I was persistent & found a great neurologist & otologist who I still see. Very few health care providers know how to care for patients when the antibiotics are done, but be relentless! I tried craniosacral massage which helped along with antidepressants. I was back to work in 2 months & that was too soon. Even today I have good & bad days. People won’t understand your need to rest & take life at your own pace but it is important for your recovery. Take care of yourself!

[Bellesmom12]

I am now 8 1/2 months post viral meningitis and NO after care either. I am a lot better but still very shaky and jumpy. Everyone thinks just because you look ok, you are ok. But you are really not. Just take your time and rest. I understand it is very stressful when everyone starts losing their patience with you and you WANT to be ok for them. I am lucky I have a job where everyone knows me and helps me along. I drove after about three weeks and went back to work after 5. Too early, but I had to. I still get lots of brain fog when tired or stressed. No way I could go to a concert . Too much stimulation, good or bad, throws me off. I have gotten to the place where I don't know if how I am feeling is caused by the illness or just normal. I will say walking, not like I used to, helps. I take the dog out and "walk it off". No clear answers, just time heals and try not to let anyone tell you how you should be. Defending yourself and how you are acting is very stressful. Good luck and hugs to you.

[July23 in reply to Bellesmom12]

I am 3 months post VM and keeping thinking i can get back to work on good days but then something trivial tips me back.

I so agree about over stimulation being a trigger.

Calm and quiet is very soothing.

I either walk, or lie with my eyes cloed , immersed in a gentle audio book which helps the tinitus and takes my mind elsewhere.

It's hard for others to understand when you start to get stronger physically it feels good but the myriad of ongoing symptoms are exhausting.

[welsheuphnaty in reply to Bellesmom12]

Love this/ You are right just because you look ok on the outside ( unless you lacking energy and look like death, as my son said to me last week!) it does not mean you are ok. It is up to us to educate people. And point them in the direction of places like this , the facebook groups for Meningitis now, Meningitis Research Foundation . Many people post on there.

[keepdia]

I had bacterial meningitis and sepsis last January. I was offered no aftercare other than my GP and I am very lucky to have a good GP.

I have problems with my ears and weakness on my left side I also have dreadful memory problems and lack of concentration.

I am definitely not the person I was before. I chose to retire from work early as I could not cope with the working day.

I'm sorry to sound so negative and I don't know where you live but I have tried to accept that this is me now and just get on with my life as best as I can.

I just keep telling myself that things could have been considerably worse.

[July23]

I am almost 3 months post viral Meningitis (hopitalised for a week). I existed between bed and sofa for 2 weeks then gradually had a few walk out . Time and rest is all there is. Everyone is different.

I was still very tearful for 2 months.

Exhaustion is incredible. I have tinitus . I find loosong myself to audio books, in bed with curtians closed ,has been my saviour.

Still have memory problems and stumble over words and my memory is not good.

Still wear sunglasses and cannot tolerate loud noise or background noise if I need to have a conversation or concentrate.

Be kind to yourself is the best advice. You will improve.

[Buckie3]

Hi Sophiapa, your best bet for the time being is rest. Your body and brain have gone through a tremendous amount of trauma. See your GP but request to see a neurologist, as what you have endured is best handled by a practitioner who specializes in brain trauma. Hopefully you have someone to assist you at home. You need rest

[menchild]

Hi, I am six weeks post bacterial meningitis and sepsis. I was discharged into care of GP. My GP tells me I probably know more than him about this illness! I found this site so helpful and took up someones suggestion to get craniosacral massage. It has helped me regain my energy fast and I am going for 30 min walks now. I rest a lot and then some more. I take vit C, multivitamin, probiotics and combination 12 tissue salts. Eat a healthy diet and drink lots of water. My hearing has improved and I take a homeopathic remedy for that. I deep breath as often as I remember to. Still get headaches and they remind me to REST and drink water. Its all a lesson for me to ask for help and stop giving to others. It is my time to care for myself. I accept my life one moment at a time with gratitude and Some days are good and others not so good. I have let go of expectations. Be kind and gentle with yourself. Its different for everyone. Your body is still working hard to heal and if you listen to it you will realise its wisdom.

[Jane425]

I had bacterial meningitis in 2017 and posted my story on this site as I hoped that my experience could help other people in the same situation - maybe give it a read. The biggest motivation for me was ' how dare' meningitis stop me doing all the things that are important to me! Graded activity, following my physiotherapists advice to the letter ( even though it temporarily made me feel worse) & rest, rest, rest were the answer for both my mental and physical health.

[Vmzoster]

Seeing GP is follow up. Recovery is very long. None of us feel like ourselves for close to a year. We can only treat symptoms, get tons of rest, take good supplements, eat healthy vitamin rich food, take walks and activity where we can, and inform others that we are slower, more sensitive, and fragile than before so they don’t expect us to be what we once were. Some of it makes us live as we actually should have all along but that’s at least several months out. Be extra kind to yourself but advocate for yourself with the docs. If you feel something, say something. Don’t count on them to anticipate or understand.

[Rebeccac1987]

I had bacterial meningitis & a mini stroke in February 2017.. my goodness it does change you as a person! How couldn't it! But please don't see all the changes as a bad thing! It has made me forgetful & less able to concentrate but on the flipside I am so grateful to be here & for my body which enabled me to survive and carry on! Rest is so so so important! I basically spent the 1st 2 months in bed either resting/sleeping! I had awful headaches to begin with so rest and lots of painkillers (on a timed schedule) was the only way I got through it.. you need to be kind to yourself... the hospital told me it could take a year or more for my body to recover from the after effects... longer for the mental side.. which I totally agree with.. take all the time you need pet & try to relax, stay calm & not get stressed, I really hope you feel better soon x

[Boneyhay]

Hi post bm 15 years and still suffering all of your ro problems just have to try and cope