Hello everyone, I contracted VM back in early April of this year. It all started with my heart beating out of sorts, but not feeling unwell, and I took myself to the ER.
They found that my heart was adding a beat here and there, and kept me overnight for observation. I was discharged the following day and followed up with a Cardiologist, who found after 2 weeks of wearing a heart monitor, that my heartbeat was again normal.
Within 2 days of leaving the hospital after my overnight stay, I started feeling unwell.
I thought I had caught a virus of some sort in the hospital.
After a long and sick 2 week period with flu like symptoms, high fever, vomiting, diarrhea and fatigue, I was finally properly diagnosed with Viral Meningitis through a lumbar puncture at my 3rd trip to the ER in that 2 week time period.
My stay in the hospital was for 5 days and since my blood cultures came back negative for Bacterial Meningitis, they discontinued antibiotics and kept me on fluids and anti nausea medication.
I returned home and was led to believe by the Specialists and Doctors that in 2-3 weeks I would be completely back to normal, feeling great again and fully healed.
I was tested for everything under the sun while in the hospital, West Nile Virus, Lyme’s Disease, etc. All were negative.
I also tested negative for the Herpes Virus.
The Specialist in the hospital and the Neurologist that I saw afterwards all believe that this Viral Meningitis virus affected my heartbeat, as they said severe viruses can do that.
Thankfully, my heart beat, for the most part is much better, no concerns there.
I am healthy and fit 42 year old, a very blessed stay at home Mother to my precious 4 year old Daughter.
I have always been blessed with great health and incredible energy!
This illness has changed my life.
I feel so low, depressed, fearful of never fully recovering. I am now at the 7 month mark in my recovery.
Gratefully, I have had many days where I have felt quite well, certainly not 100%, but overall pretty good. Able to shop, cook, be nearly normal again.
Other days I feel so fatigued, dizzy, tremors, strange head pressure, neuropathy issues of numbness, tingling in arms and legs, general overall weakness/stiffness in my arms and legs at times.
Neck stiffness and pain and back pain in my upper and middle back.
It’s so strange to me that these after effects show up so many months later!
I worry a lot, like never before.
It’s so hard to feel unwell and so unlike your usual self for so long.
A lot of the time, I do but see any light in this dark tunnel I am in.
I most definitely have anxiety now and have started seeing a Counselor to help me cope with all the fear I now have.
The Internet, although a great tool, can scare me to death with all of the possibilities that could be wrong with me.
MS, etc..
I am sure I am not alone in this.
I remind myself that prior to this VM, I had NONE of these issues, so it is very likely that exactly what I am dealing with is these horrible and debilitating after effects of having such a violent illness.
My desire is to return to full health again and feel the joy and peace that used to be a normal part of every day living.
I have learned that your health means everything!!!
Not to ever be taken for granted!
I have a wonderful support group all around me and feel so grateful for this blessing!
My little girl keeps me going!
I pray a lot, and know a loving and merciful Heavenly Father hears our prayers.
I’m so grateful to have found this website and I do not feel so alone reading others posts and encouraging stories.
I am in the US and have found no support group whatsoever in dealing with the recovery from this illness.
Thank you for taking the time to read my post.
Any encouragement in recovering would be a great help to me!
People that have not experienced this type of long term illness, cannot understand how devastating this is to your entire life.
I hope to look back on this experience in time and be able to see that I did in fact get through it!
Thank you so much.
Written by
Kitsismimi1
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Firstly, thank you for sharing your story on here. That itself takes courage.
I haven’t suffered with vm myself but am close to someone who has and if you hadn’t of put that you have a daughter & live in the US then I literally would’ve thought that this person I am close to had written near enough the entire post!
You most definitely aren’t alone on this with how you’re feeling. It sounds like you’re embracing it and riding it rather than fighting/denying it which is really good in my opinion.
Take each day as it comes. You may have good days & bad days and in time hopefully the good days will outweigh the bad ones.
I’m pleased you have a good support group surrounding you as they’ll help boost you up and be understanding throughout the different times.
I hope this response has given you a bit of reassurance and a boost of positivity.
Herb, thank you so much for your kind and encouraging words! I really appreciate you!
Yes, these are the hardest of times for me and for my family.
My Husband, Daughter and Mother are my constant angels here on earth helping me a long.
These after effects can be so strange, scary and difficult to handle at times.
I am so deeply grateful for you caring enough to respond and help lift another with some encouraging light struggling on this dark path, at times of recovery.
I pray for your friend and daughter to completely heal and recover🙏🏽
Take care!
Jaime
Hi kitsismimi
Exactly my wife also suffers from these illness its her 3rd month taking the medicine, she also had upper back pain, and still having sometime dizziness, tingling, sometime right leg weakness sometime left. She had been diagnosed with brain Tuberculoma and is on anti-tb drug, by they way could you please let us know which medicine do you take now?
Hope for a rapid recovery you will be good and healthy again, have patient
Well done for sharing your story, it’s a massive step but here everyone understands what you’re going through or can relate in some way.
I was diagnosed with VM 18 months when I was admitted to hospital. It has been life changing to say the least. I will be honest and say that 18 months later I still have side affects that I have to deal with but learning to cope with them in a way that is right for you helps so much. Also remember it’s a different experience for everyone, especially because the brain is unique and personal.
For me I have changing my diet one of my lifelines. A lot of food contains inflammatory properties which can inflame any previous swelling in your brain or just aggravate the pressure points in it. My diet is now heavily based around anti-inflammatory foods as this helps me on a day to day basis. I eat certain foods at certain times of the day and although I still let myself have treats I ensure I eat well around it to counteract any potential affects. I am virtually diary and gluten free as these are high in inflammatory properties and I just find alternatives now. If you want anymore help on this please do not hesitate to ask. It’s beeb a big learning curve for me.
I really struggle to problem solve and process things now, even minuscule things like paying with cash in a shop can be difficult. I struggle to work out what money I need etc and trying to do that at a till with a queue of people behind and a demanded 4 year old can be enough now to send me into a panic attack and just leave the shop without the items I was purchasing. It’s taken me a long time to accept this is how it is now but I have now have things in place to help so I will only pay with cash if I’ve got someone with me to help me. I also get incredibly dizzy in busy places so I minimise when I go to these places or make I go with someone that understand so if at any point I say I can’t cope they will help me go sit in a cafe for 10 minutes and calm down. I get tired more easily now just generally and from having to over think all the time as these things don’t come naturally to me anymore but once I again I don’t really plan things anymore and take each day as it comes and I feel up to it I do it and if I don’t then I don’t, there’s always another day. I have nerve damage to my right side and struggle to write now so I just do small amount if necessary and if not then I just accept it.
I suffer a lot now from anxiety as I struggle with daily life situations and also I struggle to deal with emotions with it. It’s taken the people around me a long time to see that I’m not okay and this is how it is now. Some people understand better than others and it’s hard when it doesn’t seem visible for people to see. Everyone seems to become an expert on it and tell you how you should be handling things and what you should be doing but they’re not you and haven’t been through it. One thing this page shows you is that everyone’s journey from VM is different. Although a lot of people experience the same affects it’s still different for everyone.
It sounds like you’re doing amazing so far and just keep going, you’re family should be really proud of you
Hi, reading your post is almost a mirror image of everything I could write with all the same symptoms including the heart one that lasted a few weeks!! I am a 41 year old mum of 2 (5 and 7) and for the first 3 months I couldn't function as a mother. I am grateful now I can do the school run, cook the tea and bath them. I still can't tolerate noise or light so I miss sitting with them and watching t.v. After 6 months I went back to work with an amazing employer and gradually increased my hours. 11 months on I am still learning to live with the aftet effects of which there are many as you experience.
The hardest thing is we look well! I don't feel really ill I just don't feel right in so many ways it is very hard for others to grasp.
I have found like Heather following an anti inflammatory diet helps. Turmeric tea helps 4 to 6 cups a day. 1000mg vitamin c and zinc helps. Mindfulness, rest and dark rooms when you need it!
It is very difficult being a mummy and not being able to do the things you used to without planning but always focusing on what you can do each day and staying positive is vital for recovery and reducing anxiety. I hope you do not feel alone you are doing amazing. Stay patient and take each day as it comes that is all we can do xx
Please do keep in touch and let me know how you are, always at the end of the keybaf if you are having a bad day. I think this site really helps as talking to people who feel the same helps with healing.
Interesting we all find turmeric helpful and high dose vitamin c. I find mindfulness and meditation good mentally. When I'm having a really bad day I try and do something for others as kindness, gratefulness also great mental and physical healers. Which I'm sure you are already doing.
Hi, I'm 16 years post near fatal VM and I have lost count of the number of times I have heard people say that doctors and specialists that you'll be better in 2-3 weeks. Most doctors will never see a case of VM in their entire career so they go by what they are told in training that it's rarely serious and recovery is like recovering from flu. It would help if they contracted it and they would understand that it can be a long slow process based primarily around rest, rest and when you feel better rest some more.
What I found useful was to adapt what 'normal' means, things I could do before VM I can't do now and vice versa. I was off work for just under 6 months and wasn't ready to go back to work but they cut my salary so I had no choice. During that period I had at least 3 heated discussions with my GP trying to explain that I wasn't malingering as he suggested and in the end I asked how many people he had treated with VM. After a lot of bluster and bluff he had to admit that he have never treated anyone with VM and therefore should listen to me. To his credit he did but it was at a time when I could barely walk and string a sentence together let alone put together a reasoned debate.
Unfortunately recovery from VM can be a slow process and some people, like me are left with side effects which will never go away.. However before I had VM I would never have dreamed of doing a half ironman triathlon 10 years after becoming a survivor which I hve since followed up with 3 more.
I wrote some blog posts about my recovery which might help, just click on y profile then click posts. I'm also a community ambassador for Meningitis Now so if I can help please just PM me via my profile (as above) and I'll happily share my email address with you.
I am in the US as well. I am only a few days out from my diagnosis but I had a similar experience in that I was feeling unwell the week prior to getting really sick... Had an on/off headache and neck pain and weird pressure around one eye. After a little over a week my head hurt so bad I went to the ED. Strangely I never had a fever through any of this. They did CT and MRA to rule out brain bleed but my lumber puncture showed increased lymphocytes. Unfortunately they never tested mine for the kind of virus and I really wish they had because now I'm wondering about acyclovir. I have to keep reminding myself I'm still in the early days of this illness but my anxiety is causing me to read everything online and worry I'll be experiencing issues months from now. Yesterday I was feeling better and today even more so, then this evening everything hit me like a ton of bricks. I feel almost as bad as I did when I got diagnosed. Ugh!!! VM is not what they make it out to be. Oh! And the insomnia I've been dealing with the last two days - totally messing me up. I can't lay down because it's uncomfortable and my body physically won't let me sleep. I just hate this!!!
Hi, I was hospitalized in May with VM and I feel for all off you and anyone who has gone through this before or is going through this now.
I felt much better for months after leaving the hospital but slowly the headaches and exhaustion have come back. It’s so difficult to even think about the rest I need as I split my time between taking care of my 17th month old son and running my own business.
I never really got major headaches before this year. It’s so painful Behind my eyes and around my head.
I just wanted you all to know that I feel for you and know what you are going through.
Has anyone found a good way to treat the headaches?
I'd be interested too. I've tried seeing PT and a chiropractor, pain relievers don't seem to do a whole lot when I'm in pain. Hope you can find some relief!
I'm also from the US and struggling to find support for the slow recovery progress. I was initially hospitalized via an ER visit for a searing headache unlike anything I'd ever experienced, fevers, chills, pain receivers did nothing to cut the pain. They ran every test, spinal, CT, MRI, lymes, West Nile, thyroid panel etc.
I left the hospital with a prescription pain killer, prednisone and a follow up to my GP.
4 months later I was in the neurologists office finding out that it had been VM and now I'm dealing with the post viral fatigue syndrome.
My initial hospital visit was August 5th 2017. I appreciate you sharing your story as I feel so similar. Some days feel better but many are overwhelming, emotional and (with 2 kids here 5 and 3) the noises are sometimes too much to handle!
I would love to connect and see what you've found helpful in your recovery as well. Diet and exercise seems to help but sometimes an understanding ear is the most needed!
Hi I had all the same as you and chronic migraine as a result of vm. Go see a neurologist and perhaps talk about preventative drugs like endep to calm dow your nervous system and deal with the pain. It can help a lot so worth talking to professional about it. See my other posts as I have spoken extensively about pain over last six years.
I’m sorry your road to recovery has been challenging and painful.
This illness in unlike any other..
And with so little help, medical knowledge and support, it’s no wonder we all feel alone in this.
It’s so strange that some days I can feel quite well and almost normal, and other days, the tingling, numbness, pain in arms, hands, legs and BACK are just debilitating.
I just pray in time this ALL will pass..
I am now at 8 months post in my recovery and am grateful I am well enough to take care of my precious 4 year old Daughter.
This VM has changed my life.
I want my life back with great health and feeling good.
Time, prayers, patience and trust in God’s plan for me.
Good luck and I will mention it ( the medication to help settle the nervous system) at my follow up Neurologist appointment at the end of January.
Mine , I am a 43 year old (was) healthy working mum of 3 teenage kids , I have never had anything like this and it has rocked my world
I was feeling run down , huge glands in my neck and was sick , I put all this down to heat and working hard . Maybe a cold coming or something so I carried on as normal
I went out with a friend and became sweaty and shaky so went home . In the night my head was banging so bad I couldn’t open my eyes
My friend called a doctor who sent an ambulance and before I knew it the words MENINGITIS was mentioned
This was 6 weeks ago and after a 5 day stay in hospital. 2 returns for lumber puncture and reassurance I am still suffering and feeling pretty suicidal to be honest
My head bangs constantly , my neck is in agony and I feel generally confused and fed up
Obviously I am un able to work which means I am resting and just trying to get over it
Doctors have said recovery could take months or years , there’s very little information about the recovery period or what I can do to speed it up / help myself get better and I was feeling very alone until I found this site
Great to hear a familiar story , I am so fed up right now , hearing your feeling of dispair has helped me know I am not the only one
I understand your despair, and weariness of the entire experience, as well as the shock, PTSD, and depression.
I am now almost 16 months post VM.
I have times where I have felt almost and completely normal, and times where I feel so unwell I wonder if I will truly ever overcome this.
At this point in my personal journey of recovery, I still deal with fatigue, anxiety, muscle weakness and the dark feeling of hopelessness, as the world carries on as usual..
My little girl is just now 5 years old, and as you know, being a Mommy yourself.. requires a lot of care and energy.
My priority is being able to take care of my Daughter each day.
Each day that I am able, I get us out of the house, meeting with friends to play, and do something happy and normal.
I have to plan my day around my rest, and can do usually 1 outing per day!
Play date one day, Grocery shopping the next.
Some days, we stay home and I need extra rest.
I nap each day after lunch for 1 hour, and that helps me recoup from the morning outing and prepares me for part 2 of my day, cooking dinner, etc..
I have done too much of shopping and enjoying life on a good day, and that will set me back for 1 week, feeling awful..
So, I learned early on, I really can just do 1 thing per day.
It’s difficult and depressing, but I do have hope that someday, I will improve more and eventually overcome this!
You will too!!!
It does take a long time to heal and recover, Doctors, unfortunately, have little to no knowledge about VM.
It’s such a lonely illness to have.
But if I just look around me, I count my blessings..
I have friends and extended family who are dealing with Pancreatic Cancer, Breast Cancer, MS, Muscular Dystrophy..
Devastating diagnoses with little to zero hope of recovering and staying alive to raise children, get married or ever have the blessing of having children..
It doesn’t help that we feel so devastated ourselves, with what major curve life has dealt us, post VM, but I’m grateful to not have a life threatening illness.
Ours is life altering but not life threatening.
In my darkest days I try and remember this, as well as realize how far I have come from 16 months ago.
You are going to feel better, and much better than you are feeling now!
My faith in God, and His plan for every single one of us, reminds me that I am not alone, that He is there for us, and He will never forsake us.
Prayer has been my lifeline.
Please keep in touch with me, your always welcome to PM me.
You are NOT alone in how you feel.
VM not only affects our physical body, it affects your mental capacities/thought processes.
Our brains have been seriously injured, but in time, we will heal!!
God bless you, and your family.
This illness and the duration of recovery affects the family also.
It has really made my family, with my Husband and Daughter most precious and close.
Try to calm and quiet your mind as much as you can..
Great to hear back from u . This is such a lonely illness , I have great friends and family around me but it does feel very lonely as they don’t really understand how I feel
It’s really rocked my world , I used to be very outgoing and always on the go
I am now stuck indoors for days on end watching box sets and reading
I honestly thought that once leaving hospital my life would go straight back to normal , how wrong I was !!!
I can’t work and money is tight . We get sick allowance here, which is bearly enough to live on , I am self employed painter decorator , a job I love but I’d very physically demanding something which I know I am incapable of going back to for the foreseeable future
So for now I have to accept that my life is full of headache s n pain and just learnt to relax and prey that one day my life may return to normal
It’s sooooo nice to have some one to talk to , who understand s , and knows the pain , the struggle
We are in this together, I am so grateful you have loving and supportive family members and friends around you! SO important!!!
I understand your feelings about them not being able to understand how unwell physically and mentally we feel from having this..
I feel the same!
I remind myself that if I had never had this, I could not understand either..
You think within a week or 2 of leaving the hospital, life will be all back to normal and feeling great again.
And it is not, it’s scary, unsettling, miserable to keep feeling so sick, and because there is really no Doctor or Specialist to go and seek help or information from, you slide into a pit of despair and sorrow.
I know all to well your feelings.
But we are not alone!!
Pray and ask God for help when it gets too much and too dark.
In time, you will feel better!
The one Neurologist I found( I saw several)
a lot of comfort in, and who had a clue about VM and life post PM,, told be that 18 months to 3 years is the time frame that most people afflicted with this really start to feel better. He told me VM is a violent attack on the entire nervous system and it takes a long time for the nervous system to calm down.. but it does eventually.
I wanted to also mention to you about boosting up your immune system as much as you can.. eat really healthy, drink a lot of water, turmeric teas, take vitamins and supplements to help you heal and recover!
Maybe you are already doing this!
I take Turmeric daily, Vitamin C, Vitamin D. Zinc, CoQ10, Magnesium, Probiotic and Omega 3 fish oil.
I cook Salmon once a week at least, and give my body as much superfoods and healthy foods as possible!!
I know how hard it is being stuck at home because you have zero energy and feel too sick to go out..
This will pass!!
You will go out again and enjoy being out.
You’ll learn your own new limits, so you can still get out and enjoy life, but know you will most likely need to rest afterwards. And that is okay.
I am still this way at 16 months post VM.
Today, I cleaned my house this morning, went out to lunch with my husband and daughter, stopped by the store for some groceries and rested and went to sleep as soon as I got home for 1 hour.
Up for laundry and cooking in the afternoon/evening.
I am in bed by 9pm each night and sleep thankfully, very well until 6am when my Daughter wakes up and it’s time to start breakfast.
I was not able to do these things for a few months post VM. and the noise of light of TV would make me feel worse. I could not watch movies or listen to music.
That passed at 5 months post VM, now I can watch movies and listen to music just fine.
It’s little steps here and there.
There is a wonderful man on this site named, Jonad, he has really great advice and knows and understands how difficult this recovery is, having suffered VM himself. He suggested to me to keep
a diary of my progress and I am!
I see every few months, something else has improved, and that’s helps me to see healing is happening, it’s just so slow..
I am sure at some point, you will return to your career of painting, you just might not work at the pace and amount that you did before.
But your life is not over, it’s just a time and season of resting and healing.
That is what your body needs to recover!
Do whatever is takes to help yourself feel better!!
Listen to uplifting music, meditation, going for a short walk outside, take a bubble bath. Watch a funny movie.
Things will improve for you and you are going to feel better Debcorn!!
I’m keeping you close in my thoughts and prayers!
When I read your post yesterday, I just wanted to reach across the Atlantic Ocean and give you a big hug!
I know exactly how you feel!
You are not alone, and things are going to improve..
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