I (18F) had a pretty bad case of VM back in March of this year and recovered fully after about 6 weeks, so it's only been about 5 months since my recovery.
Recently, I've been experiencing random bouts of light-headedness and headaches, especially at night. I don't have any other health issues that I believe can cause those symptoms, so I was wondering if this is something many people who have had VM experience afterwards.
My doctors mentioned it possibly being anxiety, but my gut feeling tells me it's not. If anyone has any suggestions of how they cope with these symptoms long-term, that would be incredibly helpful to me as I don't want these symptoms to get in the way of my studying as I am about to begin college.
Thank you to anyone who has any info, tips, or advice to share.
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CelestialManny
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Hi - sorry to hear you are struggling with this, it can be very debilitating.
I had BM about a year and a half ago in Feb 2020. Initially I recovered really well and then around June I started to get bouts of vertigo followed by constant headaches. This lasted quite a long time until I found people who were able to help. I spoke to various professionals about it (I had to push to be seen by a neurologist) and it was put down as post meningitis syndrome.
I started taking amitriptyline for the headaches and saw a Vestibular physio for the vertigo/dizziness. The physio was amazing and has completely changed my recovery. Instead of trying to stop the dizziness, she gave me exercises to bring it on in a controlled manner, so I could get used to it and slowly it has improved.
I had near fatal VM in 2002 and it does sound like some of the common symptoms of post VM recovery. It sounds like you have made a good recovery but 5 weeks is very very quick even for someone of your age so I am not surprised that you are having further issues so soon after the initial attack.
Doctors will tell you that VM is always mild, is never serious and that you will recover in 2-3 weeks but the vast majority of them will never see a case of VM in their career let alone understand or know the epidemiology. This will explain why your doctor is attributing the after effects to anxiety but please do trust your gut on this.
It could be that you have not recovered as fast as you think you have. VM is a difficult disease to predict in terms of after effects simply because it is a trauma to the brain. The medical profession knows about 20% at most of how the human brain works so if they're not sure they will usually a) not admit they don't know and b) give a diagnosis which is sufficiently vague enough for it to be pretty much anything.
To give you an idea of recovery time for serious VM, I was off work for nearly 6 months and it was 5 years before I could do intense sport again, that in my case being triathlon. I came within 10 minutes of having my relatives called into the hospital to say goodbye to me. My parents had already been called as they lived some distance away. I was discharged the day after almost dying and was rushed back in 3 days later with no upper blood pressure and heart rate dropping through 27 bpm.
I am now privileged to be a volunteer Community Ambassador for Meningitis Now, here in the UK, with a special interest in supporting people post VM. If I can help further please send me a message on here (just click on my profile and the click 'message') and I will do my best to answer any questions you may have or help in any way I can. Take care, Jonathan
I have all the symptoms of viral meningitis, was rushed to A&E but like you said they gave a very vague diagnosis. They did blood tests on me which showed an infection but they said it was something viral and to go home.
I have had a severe headache for over a week, painkillers do not help at all, I have nausea which is only helped by mediation, neck stiffness, no balance, light-sensitivity an I feel so lethargic. I believe I have VM but cannot get a diagnosis. I was told to ride it out at home.
Viral infections mean just that..they have to run its course naturally.there is nothing to stop it or to control it, I had encephalitis which is abit more rare then v.m but same type of symptoms and out come.For me I've had 3 major incidences. All of which leaves me weaker then the last.I suffer headaches and dizziness very often but more so if stressed. God bless..but my point was viruses have to run its course.
Look into Mollaret’s Meningitis....... reoccurring viral meningitis. I have that & have had meningitis about 10 times in the past 3 years. It’s debilitating. Been hospitalized 3 of those times. The headaches are unreal. I’m extremely lethargic.......just completely exhausted all the time. Have mood swings & depression. Also, pain & nerve pain throughout my body. I do seem to be in a bit of a remission period right now & my quality of life has vastly improved & I am starting to feel “normal” like I did pre-meningitis with still some mild pain & exhaustion bouts.
Hi Jonathan, I had VM almost 5 years ago. Have ongoing issues with chronic migraine which I have nerve block injecrions for. I have been reading up on mollarets as I'm certain I have had VM a fair few times since my initial diagnosis.
2 weeks ago for instance I started with a bout of nausea/vomitting 1 spike in temp 38 followed by memory fog debilitating headaches dizziness forgetfulness and the worst fatigue. The haziness I feel inside my head is the exact same I had when I was initially diagnosed with VM bavk in 2016. Currently I am having constant photophobia/phonapobia I feel like I cant face the outside world.
Does this sound like mollarets to you?
I'm under a neurologist who i only seen for my nerve block injections in September but noone seems to want to help.
To be honest it's difficult to say, in my experience Mollaret's tends to come in attacks or waves rather than as continuous episode. It could be that what you're experiencing now is after effects of the VM which can last for a long time, in some cases like mine, they can be so prolonged that the medical profession have indicated that they are permanent. I have been left with a constant headache, intolerances to various foods (and they would have to be caffeine, cocoa and alcohol wouldn't they, amongst others) and seasonal affective disorder as well as photophobia. This is all on top of the diagnosis of Mollaret's so yours is not necessarily an unusual situation, I'm sorry to say. I hope this helps but please do feel free to message me if I can help further as I'm always happy to do so.
I have reoccurring VM as well. Had it 6x. I tend to have cycles of 3 bouts every 2-3 years. Your symptoms are things I deal with every week. I also had migraines before I ever had VM. So I treat my similar symptoms as migraine syndrome. It works for me. I will say that several symptoms got better over time for me. I haven't had severe fatigue in over a year (knock wood!) now. One things this site has shown me is that you are not alone. You can browse others stories and compare to what you are experiencing. Good luck.
Yes it is...mine are extremely bad at times. Ive had 3 episodes through out my life this far ,and this last one left me very much debilitated, with headaches, dizziness and i require alot of sleep.Stress and stressful situations worsen my dizziness.
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