42 yr, female. I was diagnosed with viral meningitis in August 2019. After almost 7 months I am still dealing with the headaches, major neck pain and light sensitivity.
There are days I feel like I could run a marathon (ok... not really a marathon but I feel pretty good!) and other times I can barely turn my head from side to side because my neck feels like it's on fire. I haven't been able to narrow down a specific trigger to the painful days and they just pop up out of the blue. Each time the flare up brings up a fear of a reoccurrence! Is this just a sleeping monster that wakes up whenever it wants?
I am struggling to find much relief with painkillers or OTC medicine but my heating pad has become my new best friend!
I am really looking forward to hearing any tips, tricks or advice that anyone has to offer.
Many thanks in advance and I hope everyone is staying safe!
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Sorry to learn that you are still experiencing many symptoms since viral meningitis. Recovery for some can be slow for some taking many months. Time and rest seem to be the most important factors in recovery. It is also common to have good days and bad days during recovery. We have more information about viral meningitis, including a fact sheet, here
If you have not had a recent follow-up with your doctor, we would suggest this to ensure you any other reasons for these problems are ruled out and appropriate medical advice is given as necessary.
Although there is little scientific research on the benefit of complementary therapies following meningitis, we know that some people have found some benefit from therapies such as cranial osteopathy and acupuncture. There are many people using this forum who have also experienced viral meningitis and am sure they will be able to give you information on what has been of help to them.
In most cases, over time the impact of viral meningitis becomes less with most people making a good recovery.
I am still learning about therapeutic options to help ease some of the head and neck pain. At this point, I am open to trying anything.
I rarely go a night without my heating pad curled up under my neck. I just hope that I am not causing more harm than good by over using it. For now, it makes sleeping much more comfortable at least.
I contracted bacterial meningits in Aug 2019 as well. I still get headaches and neck pain and it is associated with doing too much. I have to rest even when I feel full of energy orrrr next day - crash. So frustrating. Bowen therapy helped me enormously and that is when headache frequency reduced radically. Finally therapeutic massage was very helpful. Now with Coronavirus my massage therapist has closed her practice. I find it vital to hydrate hydrate hydrate - even in night I drink about 600 - 1000ml water. Rest rest rest. Keep stress levels down. I cant talk socialise too much or headache. Too much online screen - recipe for headache. Anything that requires brain processing can trigger headache. Sighhhh. Slowly does it. Things are better than they were as I had a continuous non stop headache for 8 weeks after contracting meningitis. Be gentle with yourself, your recovering from brain trauma and that is serious as it is the master of your whole body.
Thank you so much for taking time to share your experience.
I am still trying to come to terms with the reality of simply not having the energy or being as productive as I used to be. I have always done a lot of computer work but as an a Instructional Coach in an elementary school, everything is now online. The extra screen time surely doesn’t help. Not to mention just the stressors of day to day changes could be playing a bigger part in my flare ups than I really considered.
I love my massage sessions and my therapist has closed as well. I look forward to getting a nice LONG massage for sure!
I am not familiar with Bowen therapy but will look into it soon!
Hi. The headaches, neck pain and light sensitivities are something we all seem to be fighting. I totally understand the whole 'high' followed by the 'crash and burn'. The problem is when you feel good you want to do stuff. When you do stuff you feel you are getting better. So you keep doing stuff because you expect your body to tell you when it is getting tired. Meningitis has robbed all our bodies of this capability. The next day and probably for the rest of that week we pay the price in pain and exhaustion. Doctors don't understand. All I can say is you will gradually get more and more time in between the 'highs' and 'crash and burns' . It's been 2 years for me and I am actually getting months inbetween now. When it hits it still hits hard but I go to bed early, I very rarely over exert myself without having a really good rest. I have had to learn from all the frustrating times I had which you are now in the midst of. This will get better, with time. Sending hugs.
I had Bacterial Meningitis in 2017. I still have headaches but the frequency has definitely been reduced. Just as you said, I still know if I over do it then I’ll pay for it the next day. I have found sleep is essential at night to be productive during the day. Also, if I can rest in the afternoon I am healthier and happier. My headaches, etc. are not as frequent nor as massive but I have to stay aware of my health. Things remain a “new” normal for me after my diagnosis. I still see my Infectious disease physician every 6 months or sooner if necessary.
You just described me perfectly! Thank you so much for your response!
When I am up...I am up and I feel like I can do anything! And you are so right as far as my body not telling me that it is done...until the next day anyway. I never knew that it was a after effect of being sick, I just thought it was me!
I have also wondered if my ADD medicine could be playing a role in my overdoing things at times. As a stimulant, it seems to mask any warning signs of my body telling me it is done. I have asked the doctor many times and he continues to tell me it is fine and the medicine is not the cause of any discomfort.
I look forward to the day when medical professionals are more knowledgeable and understanding of this illness. I was told I should be back to “normal” after 6-12 weeks. I never thought that my “normal” would be forever changed.
Thank you again for sharing. It is nice to learn more about what is happening to me and know I am not alone!
I really struggled with neck and upper back pain too after my bout with viral meningitis in October 2017. The thing that was a HUGE game changer for me was reformer Pilates. I go to a place run by physios and started with one on one sessions and then progressed to groups of 2 to 4 so it’s still very personalised. It has made the most incredible difference to me. I used to practice a lot of yoga but since having VM I find it aggravates my neck. Pilates focuses of strengthening all the small but essential muscles that often get neglected in favour of the ones we tend to overuse and really restores the balance and takes the pressure off those main muscle groups. Also I can now only sleep on my side with a pillow between my knees (like during pregnancy!) If I sleep in any other position I’m in trouble the following day. My neck has never been the same since VM but I find I can manage it these days. I hope you find some relief soon.
Hi after having VM back in December 2016 I was left with migraines and severe upper back pain, so bad that I privately went to see a neurologist, it turned out that my posture was causing a lot of problems, after correcting my posture the pain in the neck and the headaches just went away. The neurologist gave me the tip that the easiest way to sort out your posture is just to lift your chest when standing or sitting green everything else falls in to line. Really hope you feel better soon
Hi. I am 3 years down the line and experienced the same issues for 18 months to the point where the pain in my neck was so bad it just made me cry. By luck I went to see my doctor and she wasn’t available and saw another whom had vast experience with VM previously. He advised me that it was likely I had damage to my meninges which basically means that you can get a build up in fluid that causes the neck pain. He advised regular exercise in this area would help as it helps drain the fluid from the area. It sounds a bit like when you get lactic acidosis build up in muscles. I was also very tired so not really exercised to that point but have since been diagnosed with CFS and Vitamin D3 deficiency. So, I started the gym and also yoga as it’s quite gentle but really exercises that area and it has changed my life... honestly I wouldn’t have coped if this hadn’t the worked. This really has worked for me. The other thing that will trigger this to be worse is alcohol, I still don’t understand that part but since having VM I have much less tolerance and it will make my neck really pain badly if I drink a lot. I still occasionally get the headaches and neck but not to the same level, I have just found these things along with the occasional painkiller really help manage it. Perhaps it can work for you.
I am also a 42 year old female and had my second 'dose' of vm in November- first was in Oct 2012. After 5 months off work in a school working with age 4-7 I have just returned. With the current situation I am working from home as well as home schooling my 3 children.
I am finding that after spending time on conference video calls with staff and computers that my headaches have been returning so trying to take more of a break.
I have dizzy spells and am awaiting a consultation at hospital for bppv.
Light sensitivity is still also something that annoys (and scares) me from time to time.
My two experiences have been quite different, I was back at work after 6 weeks in 2012 but this time I still don't feel 100% me.
In other words, this seems to be the new 'normal' and you are most definitely not alone.
I had vm 20 years ago and still suffer everyday the neck and shoulder pain bring on the killer migraine but other than that everyday I have headache it doesn't go away it's normal now but other days it can bring me to my knees
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