I am Post VM almost 11 months now. I want to know if the after effects (symptoms) inprove after a year or so. Or do they stay the same, in degree of pain and reaction time when the brain starts to be effected, from the day to day work environment and on the home front.
Ofcouse I can notice a huge improvement from the beginning to the present day. It's just that it feels as though my brain can overload alot more often than before. Overload in the sense that the brain needs a rest ( it starts to hurt) away from noise and communication. I'm really starting to get scared that I will be stuck with this for the rest of my life
Any advice or similar experience would be much appreciated!
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RestisBest
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Hi Restisbest, I'm 15 years post near fatal VM so I hope I can talk with some experience. Yes things do improve but it takes time I'm afraid and for some people the after effects can remain although not to the same severity in most cases. VM causes a trauma to your brain and the one thing I discovered in the whole process of recovery is just how little the medical profession knows about the operation of the brain. It's difficult to predict how you will recover but as you have seen an improvement since the first attack to the present day then there's a good chance that you will continue to do so. If you are left with the after effects then believe me it's not the end of the world. You learn to adapt and re-shape what 'normal' feels like and yes it's different from how you were before the VM but it is possible to make the best of it. I went through a long period of grieving for the life I had before with all the elements that brings, depression, denial, anger etc. in fact I wrote a blog post called 'Oh No It's Angry Dad' and a few others, just click on my profile to read them in case they help.
I am also able to do things I wouldn't have thought possible before the VM life 3 half ironman triathlons with a fourth in August. I was a triathlete before VM, in fact it was my aerobic resilience which saved me, but I would have never thought I could do 70.3 miles under my own steam in a swim-bike-run. The after effects are not a life sentence they are sentence to make the most of life.
Please feel free to PM me if I can help further and I'm happy to share my email address with you (I'm a MN Community Ambassador so happy to help).
It helps to know I'm not the only one that suffers from the after effects, and it is possible to live a relatively good life post VM. I will read your through your blog.
I just can't understand why there is not more awareness regarding Post VM!
I think the problem is the medical profession is taught in training, and in all the reference books, that VM is never more serious that flu. All strains of meningitis are assumed to be the same in terms of recovery so that's why doctors tend to think you should be well after two weeks following the attack. I had to have several arguments with my doctor at the time culminating in me asking him how many people he had treated with VM after much prevaricating and saying that all recovery from meningitis is the same he finally admitted that he had never treated anyone with VM before. He wanted me to go back to work after a month even though I could barely walk or stay awake for anything more than 2-3 hours. That's why the MN Viral Awareness Week is so important and one of the themes from this year's VM event in May was how to raise awareness of the after effects and just how serious VM can be, to the medical profession. They will, otherwise, just believe their training and the books since they have nothing else to go on. Take care. J.
Thank you for this. I am so down at the moment 2 months post VM and I really feel I am mourning the loss of who I was. Today is not a good day and this does help. Thank you
Thank you Jonathan for the first time I read something from someone who really understands thank you so much. I also am mourning the loss of my old life . Being a dynamic career woman to the person who can barely walk 20 meters even with a stick ..
Hi, I'm almost 4 yrs post VM, & In my early 60's, I was a multi-tasking kind of person with a very stressful position , not so much now. I'm thankful that I've continued to have brain recovery , as I've had 2 reoccurences with VM. I've since retired, sleep well, & take care of myself. I see a chiropractor who has helped me tremendously with my recovery. I eat very healthy, do yoga, & exercise almost every day. Be good to yourself , & take one day at a time. except your new normal , that helps with your recovery! 😊
Hi, I'm 3years post VM and although I haven't returned to how I was before many of the symptoms have improved..... noise, light , various brain stimulations eg driving , watching tv and listening to music. These started to improve at around the 18 month to 2 year mark.
I have been left with chronic migraine but I try to not let it stop me living my life . I can go to rock concerts (with ear plugs) and last week I climbed mount Snowdon. I have returned back to a decent level of fitness.
I mainly lost my job as I couldn't get back to full hours quick enough so only work 1 day now but my job is demanding and I think I would struggle with more due to the migraine and related tiredness.
I have to pace myself, eat a good healthy diet of super foods and try to avoid infections or viruses and I can have more good days.
After effects such as: brain inflammation , constant crushing head pain, stiff neck, loss of balance have returned to normal now , had a lot of physio for balance and a lot of physio for the spinal and neck injury I got as a result of the crushing / squeezing of the membranes / muscles. Now my spine is fine as I exercise is a lot and stretch with Yoga.
It has been a long and painful road to recovery and patience is needed plus a cheery disposition to get me through. I am prescribed propanalol and Botox for the migraine and then a combination of rest and gentle exercise at first ( well just rest for approx 12 months) I think gentle walking really helped me for a long time.
It took about 18 months before I could drive as before that the concentration and processing was too much and caused a lot of pain, same for using computers and reading. Now I can do all of those things again.
It will take time for your brain to settle down again but it will and when it does you will appreciate everything so much more than ever before so hang in there and look forward to that.
Hi, I am 3.5 years post viral meningitis and things do improve but I still have all the symptoms just with less frequency and severity. The overloading feeling you get I also do, almost like an anxiety creeps in when your stressed or tired and especially when there is lots of stimuli around. Some days I struggle with background noise and lots of conversations going on, I can't have the radio on in the car and have a conversation going at the same time etc.
Another thing I have noticed is that I am terrified of heights now, and have an awful anxiety, when previsouly I was the most calm laid back and friendly guy around before.
It can be frustrating but I have learned to manage it. I find that I need more sleep now than I did before and if I have a few busy days in a row this can make the situation worse. I often take naps at work in my car at lunch time. If you make sure colleagues friends and family are aware of the situation it can help when you feel you need to break away from certain things.
I found a good pair of sunglasses help enormously, and classical music also helps a lot as there are no words to take my brains attention just the soothing music.
One last thing I would say is meningitis now sponsored some cranial osteopathy. I was sceptical if this would help but I think this was one of the biggest things for me. I left the sessions feeling refreshed.
I would say manage your life and time and take breaks and rests more often before the headaches and anxiety creeps in. When you learn how to manage the signs and symptoms you go a long way to moving forward.
I am only four months since VM and I am still really struggling with mental and physical energy. I understand what you mean about brain "overload". I keep "crashing" after over exertion. I have made progress but I am limited to occasional short walks and just resting around the house. The thought that this could last for years is terrifying.
It's essential to understand what will help you through the first year. Although it is different for each person. If your syptoms are similar to other people, then please try and follow their tips and advice.
Your brain had a trauma, so give it time to recover. Not too much stimulation, stay away from long continous noise. Keep bright light to a minimum ( e.g mobile, computer , tv e.t.c)
Reading alot also is tough.
The effects decrease in time but, it's gone extremely slow for my self. Eat healthy, sleep at least 9 hours at night, don't smoke , drink alcohol or caffeine.
I hope I'm not going on a bit or scaring you. I just want to give you as much help in advice as I can.
Please write to me, if you have any questions.
Stay positive, have someone close to, to talk about what your feeling and going through as well. If you have a partner, get them to read up on Viral Meningitis. So they know what your going through.
To give you a brief history, I had been recovering from M.E/CFS following a severe viral infection many years ago. I made very good progress until I contracted VM in February. Hence my frustration. The post-VM symptoms are different but just as exhausting. I will read through more of the other posts on this site as you suggest. My Doctor, although sympathetic, does not offer much. Thank you again.
Sorry for late reply,if your Doctor is not helping you, then I suggest you change your Doctor, and so on until you find one that can help you. It's essential to get support. It's not fun to to cope with the after effects alone.
No Need to apologize. Thank you for your input and support. I recently posted an update but so far no one has replied. I guess it is because what is happening to me is unfortunately typical as post VM.
Hi, I'm 3 years post VM. It took me 2 years to get to the recovery stage and then a year to really improve. I still have chronic migraine but I am so much better than before. If you can try and find my post called positive thoughts ( or something like that)
I am now back to exercise and climbing mountains, going to rock concerts and doing a training course. Things are not the same as before as I get tired, migraine and have to pace myself . Every day is its own day but in many ways I feel more liberated than before, I please myself much more now since having this illness. My after effects were extreme and I have made it through. I would really recommend taking it steady if you are still having problems, rest now to improve later . I have had to come to terms with the changes although I don't like it. Almost lost my job, was made to re -contract to 1 day but doing more in my demanding job would set off the migraine so I make sure I enjoy doing other things.
Keep positive . I was very very ill for 2 years but now I am training to climb another mountain. I refused to get depressed about it and the positive thinking allows me to live with the migraine . The best pain relief I have found is to tell myself that I haven't got any pain and get on with things( although I have just had a headache nap now!). But this is 3 years on . Up to 2 years I had to rest it out. I struggled to watch tv, read, tolerate any noise, drive, converse. So rest was what I did.
Eat a good , healthy diet too. A glass of red wine dilates the blood vessels and interferes with pain signals and helps to relieve my headache.... 4 glasses gives me headache😆.
Try and remember the difference/ improvement your making over time, this will give you strength and hope. Have you tried cranial therapy? It cleared alot of fogginess in my head, it was a huge help.
It depends on how much trauma the brain received. Not everybody has the same recovery time. Some people have more VM after effect symptoms then others. What symtoms do you have so far? Has your doctor offered you any help?
If your feeling very bad, then try and get as much sleep as possible, my rule if thumb was if my brain felt strained or I felt tired. Then I slept.
Do you have support from your family?
Big hug to you, your not alone with this. Be strong and patient. You will get much better.
Hi there thanks for replying. Symptoms are: headaches, lethargic, forgetful, information overload/brain fog, minor light sensitivity etc etc. Discharged from hospital last Thursday, saw my gp this morning said all to be expected and just rest! Frustrating that they don’t explain all this to you and as it’s ‘viral’ doesn’t seem to have any importance it’s horrible not being normal and feeling myself. Thankfully have a supportive family and 7 year Old who just wants mummy better, how do you explain you are still poorly yet inside you know you are not. I will rest and hope this goes soon thank you for replying it is appreciated
I can remember at the beginning, It can get scary sometimes, waking up in the morning and hoping that there is a big change.
There were also alot of feelings. Shock was the biggest, it took sometime for that to be processed.
I also felt that as time went on, there was very little being explained about it, only that the brain had a trauma, and would take sometime to find itself again.
I felt very much alone with it. Thank god my wife was there to help me. Be good to yourself and try to rest your brain as much as possible.
I've had VM twice. Once in 2011 and in 2015. I'm so scared that I'm due for it again and I don't think my body can take it. After my second bout I have been left in pain in my neck and upper back and dizziness and headaches that I never had before. It is a bit reassuring to know others have the same post VM symptoms. Doctors don't get it and all say I should be feeling back to normal and just exercise and live life. I have slowly tried to live like before VM. I have made steps and progressed, but it will never be the same. I don't understand (and the doctors don't either) why I had this twice. Has anyone on her had VM more than once?
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