Slow recovery from Viral Meningitis

[dt_24]

Hi, I'm 24 years old and was rushed to hospital with VM in December last year. I've just joined this forum and wanted to know if people have experienced similar recoveries. I am still getting constant terrible headaches, dizziness and extreme fatigue. I have also been on 5 sets of antibiotics since January for getting re-occcuring bacterial ear infections and throat infections. I have also lost a substantial amount of hearing in my right ear which I have been told is permenant and this has been compounded by the constant ear infections afterwards. The hearing loss has been really hard to adjust to. I have just recently started back at work on a phased return, however have found this really difficult and overwhelming especially with the fatigue. So many people have no idea on the after effects of VM and it is so frustrating! Prior to getting ill i was a a sporty fit and active individual so its been really hard adjusting to feeling so tired and unwell all the time! I just wondered if anyone else has / is experiencing anything similar? x

[Bonkitty]

Hello,

Yes I have all those symptoms and I am 11 months post VM. I am nowhere near able to return to work. I have constant headaches and fatigue. If you read the previous postings on this site you will find lots of people suffering with the same. I was also very sporty and active and I am finding it very hard. The meningeal membranes caused my neck and face and spine to dislocate so that has added another layer of difficulty.

Welcome to the community, it has helped me to communicate with people who understand this terrible illness.

Meningitis Now say it can take upto 18months to recover so if you had it in December 2014 then you are still in the early days. Lots of rest and by that I mean resting the brain, avoiding noise and visual stimulation helped me with the brain injury side of things. Taking coconut oil is also very good for brain problems, I take a teaspoon in hot water. I make green smoothies with kale, spinach, cucumber, pear, lemon juice and fresh ginger. I think these help build my immunity and I haven't caught a cold since taking it. I also take a multi vitamin / mineral and fish oil. My hair and nails are in great shape!

Have a good read around this site as there is a lot of good advice. Is work a real possibility at the moment or do you need longer to recover? Occupational Health advised my work that it would take upto 18 months and that was before my multiple dislocations. Is it possible for you to take more time off? Meningitis Now will support you at work and liaise with work and GPs on your behalf ( if you are in the UK. )

Take care and be good to yourself and give yourself time to recover. X

[rbwazmotown]

Hello - I was diagnosed in July 2013 with VM - I still am dealing with extreme fatigue, muscle and joint pain since then. I understand your frustration because doctors do not know how to treat the after symptoms of this illness. This is a great community to join as there are folks here who have had either BM or VM and have been bravely dealing with their effects. Personally, I now have PT twice weekly for the pain and stiffness, and taking arthritis related medicines as needed for the days when the pain is too much to deal with. There are great people on this site that can give you better insight as well. It takes a while to get over this, so hang in there.

[Claudeminh]

Hi I am 2 years 4 months post vm and have had lots of ups. Downs. However overall improved a lot but still feel tired. I can work though but am fragile and get tired a lot easily. Exercise helps me now but didn't in the beginning so don't push it, it's too early. But it's improving and has. Continuously so don't despair. You are still in the acute recovery phase so try not to worry, you will adjust and feel better eventually.

[Jonad724]

Hi, I am 13 years post VM this year and there is, I can assure you, light at the end of the tunnel but it does take time to recover. VM is unlike any other illness in that one day you can feel fit enough to run a marathon and then the next day it's as much as you can do to walk and from then it takes months or even years to get back to where you were As the others have said it just takes time but it is all about little and often when you feel up to it. You will probably feel tired for a few more months to come and if you ignore the fatigue and just keep going it will bite you and it will force you to rest. I had to have 5 years away from hard physical exercise due to the injury to my brain but once back I built up over the next 5 years to complete my first half ironman triathlon. Like you I was physically fit before the attack, which was near fatal, and if its any consolation the doctors told me my aerobic fitness was what saved me and no doubt it will have helped for you as well. The others who have replied have all experienced VM too and their advice is sound and well worth listening to. I have written a series of blog posts on here which might also help as this tracks my experience and having had multiple infections in 2014 I can understand how you feel. Your body and immune system has taken a battering and will take time to recover, as frustrating as that is I'm afraid it's the simple reality of VM. As I say though there is light at the end of the tunnel and I'm doing my third 70.3 (half ironman) in August this year as proof positive that VM is not a life sentence of tiredness, fatigue and frustration. Good luck!

[Jcrome]

Hi there,

Sorry to hear about your VM. To echo everyone else, it can take a long time to recover but everyone seems to recover differently - go at your pace. Y

I'm 26 and had VM at the end of July 2014 - I only went back to work in January so was off for 5 months. I'm not quite full time yet but nearly. After the VM I found that I would feel stronger if I rested for a few weeks but then I kept crashing and having headaches and extreme fatigue if I tried to go back to normal activities. I tried to do a intense day of exercise about 1 month after VM and had the worst relapse of exhaustion. I'm back at work now but I'm still quite weak and tired day to day - although MUCH better than I was. I started a very gradual exercise programme in December - just gentle walking to begin with, and now I can walk as much as I want without getting tired later or the next day so things have improved. The headaches for me have eased up too - for the first 4 months I would get bad headaches if I spent long looking at a screen but now it's nearly gone away.

Thankfully I have gotten stronger slowly - I posted a very similar post to yours several months ago, so have a search and look through the replies about VM recovery. I would say be careful about your work return - just take it easy as I learned the hard way that pushing it just left me back on the sofa again.

If you want to ask any specific questions then go for it - when I first got ill I just wanted to be able to compare progress with others and know that I would get better. You will get better - it can just take a long time. There are lot's of great people on this forum so stay in touch with everyone and ask if you have any questions as it's a great support Be kind to yourself - it's incredibly hard being so unwell and missing out on work and social life so try and do things that make you smile and laugh. I'm also a big advocate for healthy eating/vitamins/supplements so do whatever you can to support your body.

[breezeblock]

Hi there DT 24 Yours is a similar picture to mine. I was struck down Xmas eve 2013 I was 3 months out of action and the most distressing part was every day for those 3 months there was no progression I felt as ill as the day before ( I normally am a fit healthy 50 year old ) Everyday migrain type headaches living for painkillers 4 hourly, no appetite, weak not able to tolerate any loud noise, not able to read for more than a minute. I too had ear infection mouth infection and some hearing loss but( I have adapted to that).I finally saw things improving in the April and returned to work mid May but struggled with fatigue . However I felt blessed to be back to normal health by the summer. I found the whole experience devastating and it has impacted on my whole life. when the VM was at critical point and I was hospitalised I felt I wouldn,t survive .My husband of 24 years didn,t support me at all and sadly for him something changed for me Life is too short etc so we parted, fairly amicably ! I am now with my true soul mate living the good life on a farm and have never been more happy or fulfilled .I am not suggesting you make any life changes you are only 24... but for me feeling so alone and ill and not getting support from the person closest to me changed everything I don't take anything for granted anymore. I also look after myself more and don't let myself get too exhausted this is echoed by other VM and BM survivers I hope you continue to improve and adapt to the hearing loss and the future. Blessings to you x

[sopie in reply to breezeblock]

thank you for your post and being so honest. I understand, this dx cost me 2 relationships since 1994. I understand your symptoms and what your are going through, I have now met someone also, and like you I have given up my job, not by choice, but I am living on a farm and doing as well as I can, most days. I am 62, and before the dx I was so healthy, active and strong. I have maintained as well as possible since the first episode in 1994, working as a single mother and several years, and single woman. My marriage after the dx only lasted about 4 yrs and one other time I had a significant other which lasted 2 yr, but I was always the main worker in my house, so the money depended upon me. I pushed, relapsed, pushed, relapsed, so many times since 1994. My job was eliminated some 8 months ago, so I have been on savings since.

[cbandchuck]

From everything I've read on this site, your experience is sadly typical. I have read that the symptoms can last six month to a year. And, anyone who hasn't experienced this is pretty much unable to understand. Please hang in there and know there is light at the end of the tunnel. Also, consider the possibility that your body could heal more completely than you now expect, despite what the doctors may have said. I wish you well.

[dt_24]

Thank you all so much for your messages they have really helped and supported me in knowing that I'm not alone x

[Danielflory in reply to dt_24]

Any chance of and update on your journey all these years later?

[N1090Z1993]

Hi , haven't been on this for a while as I don't want to appear negative. I have had VM three times , the first in 2010 . I am on medication due to a constant tirade of virus affecting me . When I get a virus which is mainly the herpes virus I also get every symptom of VM I have been told it is referred pain. I am back at work three mornings per week which is exhausting ., I work in a primary school . The occupational health recommend I work with small groups outside the classroom because like you I have hearing issues and get quite anxious. I have been diagnosed with chronic fatigue ( ME) and attend a clinic for this . This all sounds fairly negative but although it has changed my life I will not let this rule me . I do find it difficult and I have to plan and grade my activities as if I do too much I get severe pay back. Keep smiling , listen to your body and most importantly remember that this is real and you are not alone,. Take care . Chris xxxx

[KaylaP]

Hi,

I'm new to the forum and are only in the first stages of recovery from viral meningitis but I wanted to thank everyone for sharing their stories which are so similar to mine. I was diagnosed early last month when I saw a GP to ask for pain relief for suspected migraines and was then rushed to hospital due to my symptoms. I was there for 6 days and left with the impression that recovery would be easy - how wrong I was. I am finding it hard to get any information or treatment for my symptoms which have been described as 'just headaches' by medical practitioners. I get headaches/neck pain every day and every few days they are so severe I find it hard to stand up without being sick or fainting. There seems to be little they can give me in the form of medicinal painkillers and lying in a dark room with a heat pack seems to be as good as I can get. I am also extremely tired most of the time. I have found it to be a very lonely and isolating illness too - some of my friends heard the word meningitis and have stayed away, a few think I should be over it by now and I am afraid to say that I have pushed a few away because I make terrible company. Like many of the posters on this thread, I am fairly young and used to be fairly fit and led an active lifestyle before this. Meningitis now and this forum have been a lifesaver since I found it at the weekend but have had to explore slowly as I find the light from the computer and concentration difficult.

[Bonkitty in reply to KaylaP]

Hi KaylaP,

I fully understand your situation and your slow recovery. I am 12 months into this recovery and I am still struggling through every day. I too have been very surprised by my friends and family. My closest friends and family have also stayed away and have not supported me at all. But people I didn't expect have stood up and helped. I have decided not to get down about my illness and I have chosen to be positive about it. I have really enjoyed going out for a coffee or a short walk with my dog. I also got in touch with all those people whom I only keep in touch by Christmas card and each one has called to visit me or have lunch so it has been good to have the time to catch up with them. I have found out so much about myself due to spending so much time in my own company and I have discovered that I am on ok person and very patient, prior to this I was always rushing around, workaholic, keeping fit and never felt I was good enough. Now I see things differently. So KaylaP, hang in there, make time for those friends who are genuine and value the time they spend with you. I have found a new friend, an 83 year old lady who is helping me to walk my dog! Who would have thought it but we have some great conversations and it is good to have friends of all ages and she likes it as she can walk faster than me at the moment!!!

as far as pain is concerned, the only thing that helps me is lying very still with little brain stimulation. Very boring but it will get better in time.

Take care and stay positive.

[purplecircle77 in reply to Bonkitty]

Hot coffee was the only thing that would relive my headache without pain meds. I had VR in June 1998... After three months my headaches were only occasional and I no longer needed pain management. Although, 20 years later I am still tired... Stay hydrated, and walk every day.... The better circulated you are the better you will feel.. good luck!!

[RestisBest in reply to KaylaP]

It may help you to stay away from the tv/pc screen, coffee, alcohol, cola . Try doing some drawing or maybe a jigsaw. If you feel strained then sleep. I slept alot at the beginning from VM recovery. If you can take a 5 minute walk. Fresh air helps. Wear sunglasses. Protect your eyes from sharp light. Use a filter on your phone. If you have to use it

I hope some of these things help you. Your not alone, we have and are still in the same situation you are in. It takes long time to recover. Been good to yourself and listen to your body now. Try and be positive and eat healthy.

[RestisBest]

Hi dt-24,

You can read my story and after effects from Viral meningitis in my profile.

I have lost hearing and in the result I gained tennatus. I had a hearing test, and was giving hearing aids to help with the tennatus and hearing loss.

I didn't have any hearing infections because of VM. But I did have and still have other symptoms, which are very common with VM. Such as sensitive to light and noise. Stress really doesn't help makes me tired much quicker and effects my communication skills. Then 1 hour midday nap is vital for recharging. I findon't if you don't get the 8 hours sleep plus the 1 hour in the afternoon, then it's a bit hard tge following day.

I was very active prior VM. Have been for 1 jog. I'm about to start a traing/ running program to get fit again. I'll probably have to sleep a little extra on top.

It's a very very very long recovery process, there's not much to do really apart from being good to yourself, eating and resting well. Stay away from alcohol, ciggies, coffee and cola.

Stay positive, I know it's hard.

[purplecircle77 in reply to RestisBest]

Coffee is actually great for VM recovery.. all Dr Oz!! It was the only thing to relive my headaches. No just any caffeine..coffee specifically.

[Thepaulneely]

Thank you, thank you, thank you! I had vm 2 years ago and thought I was permanently broken! Even now doing great for weeks then crashing. Vm wrecked my life in so many ways but to hear that I’m not the only one and there is hope is the most encouraging thing I’ve heard in years! Thank you for posting and thank you for the encouragement!

[Neiseprice in reply to Thepaulneely]

i am glad to find this site. To know I'm not crazy or alone with this. I got VM in Nov. 2018. Went 3 months before I finally found a nero doctor that knew what I had. 4 doctor visits and an ER visit and I was told it was flu, sinus, inner ear..... I felt so alone and isolated. Everyone thinks you should be over it. Then , the littelest ache , this fear comes over me that is so consuming. Fear I will get this again. It is so gratifying to hear your stories and to know there is someone out there that knows this is real. Staying positive and going slow. Thank you all for your words of wisdom.