Hi all,
I had VM back in 2013 where i was hospitalized for 7 days and as the doctors say i would more or less be fully recovered within twelve months i still suffer with neck pain and back pain and get sever migrains and i am sensitive to light on odd occations.
I developed slight forgetfullness and can get confused very easily and this has been getting worse since i had VM!! Does anyone else get this and do anyone have any ideas of how i could resolve it?
Thank You .
Sorry to hear that you suffered VM in 2013 and that you continue to experience problems. Although I had BM & S I know from what I have read of other peoples posts on here and info from Meningitis Now that you are not alone with experiencing ongoing effects from VM. Thanks to organisations such as Meningitis Now it is beginning to be recognized that for some VM does have long term effects and isn't always fully recoverable from as used to be thought. Maybe you have already but I would suggest that you click back through some of the older posts on here because I know you will find some expressing similar problems as those you have concerns about. Also I am wondering if you have looked at the Meningitis Now website because info on there should also reassure you that you are not alone. Unfortunately there isn't a way to resolve it other than things may improve with time but at the moment it is more about finding ways to support and manage the difficulties you have.
Hello -diagnosed with VM in July of 2013 and I am also still dealing with issues. Mine is mainly extreme fatigue and muscle and joint aches. I have found that not many doctors know what to do for folks with our symptoms. The folks on these blogs have had the best advice. Mainly listen to your body, rest when you need to, and don't push yourself too much! I switched doctors several times before one finally told me that you have to treat this like a brain injury/concussion, where as you have to give your brain plenty of time to heal. After that doc and the great people on this website, I started to finally understand what I was up against. Hang in there, you will get better!
You are right the doctors don't know what you are suffering I am really flabbergasted you would think they would understand,or do they and because this is a long process they choose not to take it on board.when there are web sights like this they must know and all the people that are on it can't be faking it because that's how they make you feel as if what are you coming to see me for .I would like all these doctors to go through what all the people are suffering from post meningitis and see what they would think then it's a disgrace as far as I am concernd.I don't trust any of them they would turn you into some kind of loonie with there drugs just to shut you up.Mine put me on pegabiline and Duloxetine as I said trying to turn me in to a druggie to shut me up and I trusted him with my medication but I was wrong to trust him and now I am coming of them the withdrawals are bad and he want even recognise what I am going through you can't win .If you find a doctor that understands you are lucky even to get the support you need going through this would kind of help you instead of making you feel you are on your own which is soul destroying.I will keep fighting on with the hope I get my health back I wish you we'll .jea viral meningitis
I understand and I am a RN. I have dealt with many doctors which very few seem to have an understanding what I am fighting. I have had to hold down a job also during all of hospitalizations and episodes of pain. I once got lost going home from work for a few minutes. It isn't easy but just know you cannot blame yourself, and know you have to get rest. I found when I feel the neck aches, headache and general other feelings of discomfort and fatigue, I have give in and rest, meaning at times go to bed or lay around on the sofa. I have had days were I would sleep for a day or two. I know to avoid sunlight as much as possible and just don't over do. Sometimes I increase my acyclovir and yeah take pain meds. My symptoms seem to be worse when I use Advil or any other like ibuprofen meds. I did find literature once advising against ibuprofen meds.
Advil and ibuprofen is a no no.
I don't know why but my doctors told me to stay away from ibuprofen.
I too had meningitis 2012 over the holidays into 2013. My recovery has been slow as well. I still get headaches and have days of felling confused or in a fog. Mostly when my job starts stressing me out or when I overdo it physically. I can't bend over and tie my shoes without head pain.
I started taking a vitamin called Cerafolin NAC and my symptoms have greatly improved. This vitamin is believed to cross the blood brain barrier and actually heal the damaged brain cells.
I still get headaches but not daily. I still take acetemeniphen (tylenol) for the headaches and I may have to take it all day on the bad days but at least the bad days are less than once a wekk.
I had several doctors tell me to take Advil and found the literature advising against this med. I then retrospectively realized several of my hospitalizations occurred after taking several doses of Advil. I haven't touched this med in years and now I am breaking my history of at least once or twice annually being hospitalized-- it has been 5 yrs without being hospitalized and 5 years without Advil or any ibuprofen meds.
when i was in the hospital for VM the doctors told me not Ibuprofen and advil, so I am taking acetaminophen, I don't know the reasons, I had VM in 2012, i am 80% recovered, it just about time, my first year I thought i would die, I lost 30 lbs, but now everything is coming back, just patience, still I get confused sometimes, but less than before, headaches very light, and some times when I walk I drag my legs, I know I am going to get better, maybe no the way I would like, but better than nothing, just patience, you are also going to get better.
I developed vm in March 2015, I am currently under a neurologist care. I have lightheadness, anxiety & confusion when around large group of people. When it's dark I am very dizzy. My brain & speech just aren't connecting. Get with a neurologist who specializes with brain injuries. They will run a series of test to find answers to your concerns. Mine has put my mind at ease & assures me I will get better but it will take time, patience & rest. Good luck.
I understand so well, the term is on the tip of my tongue, but I just cannot say the word -- so I search for another term with the same meaning if possible. This would happen to me in board meetings, leaving me feeling as if I was stupid. In a non-stressful meeting, the words are usually there-- but add the pressure or stress to be perfect-- and I just seemed to be stammering through the pronouncing of the term 
Thank you for everyones comment its nice to no there are people around that is in the same situation as me.
I do Also find that my symptoms get worse when im stressed but that comes down to being in college and going to work.
I continue To try different ideas of helping myself but none seem successful as of yet.
Hello Coral, I had VM in March 2014 and I am still suffering from daily severe migraine and neck pain. My neurologist has prescribed Topiramate for the migraine and I am taking Amitriptyline . I have recently attended a pain clinic and the consultant there has suggested acupuncture and cognitive Brain Therapy to help cope with chronic pain and the significant change in lifestyle. I cannot yet return to work and time is running out with my sick leave so I have that worry too.
I also have some difficulty locating words and with spelling since the VM which worsens when I talk for a while or get tired.
It is a tedious illness of which there is little understanding. I feel very disabled as I cannot do much at all due to the locked in migraine.
I did suffer dizziness but at least this has improved over time.
Good luck to all fellow sufferers x
I too had VM 5 years ago . I still get confused and struggle to get my words out at times. I am at moment finding it difficult to hold my job down. My GP does not recognise that I am still having effects of VM and dismisses it as stress. I know this is not the case.
I too would welcome any thoughts on recovery and any helpful medication.
Hi Guys, my neurologist has advised me against Ibuprofen/Advil too, and all other NSADs (non-steroidal anti-inflammatory drugs). In short, there is some evidence going back to 2006 that NSADs can cause aseptic (i.e. no bugs are involved) meningitis. This went on to show that 2 cases of recurrent meningitis were caused by Ibuprofen. I’ve not read the full scientific paper but it has its sceptics, including me.
I don’t take it anymore as frantic it's useless (for me) for the pain, so that was an easy decision 
Also, I have a recurring version of meningitis and this was pushed as the diagnosis for that in the absence of any bugs in my CSF last time round. But seeing as I only took it after experiencing meningeal symptoms, that felt very cart before horse, but was an easy thing to throw back at me.
The abstract (aka - summary) for the research is here (ncbi.nlm.nih.gov/pubmed/168..., summarising that Ibuprofen/Advil should be added to the list of causes of ASEPTIC meningitis. Hope this helps.
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
Kind wishes and best of luck
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