I had viral meningitis almost 12 months ago. Unfortunately, I was misdiagnosed 3 times so I had to live with it for about 3 weeks before the treatment started. I spent 3 weeks in the hospital and almost 6 months home recovering.
Now it is almost a year and I am ok for the most of the time but once in two months I still experience dizziness sometimes, fatigue, I hear this whistling sounds in my head. I am not able to focus on the text, cant read. I have to avoid PC and TV. I cannot look at the products on shelves in stores for example because my head starts to spin a bit, especially if there is a lot of different shapes and colors. I have to avoid crowdy and loud places because I feel like my brain is overloaded with a lot of information. It usually starts with a headache but nothing too serious. This headache lasts for a couple of hours, then it goes away and all of these symptoms come right after that. I cant function normally for a week and then I am ok again.
Is it normal to have these symptoms after almost a year? Also, I feel like that meningitis left some kind of fear in me. Every time I feel a little ache in my head or heart I start to panic and worry about my health. It's so exhausting...
Thanks for your feedback in advance!
Mark
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Marekzvar
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It has been over a year for me as well. _Bacterial M. My symptoms are very similar. Fatigue anxiety numbness in arms and legs, pressure in my head, scattered and often unpredictable bouts of feeling flooded and overstimulated. Im currently looking into stem cell implant to see if that is a viable option. This is really sucks and is so much to cope with. My disability is run out and Im running low on resources.
Try a osteopath. It really helped me! Im still struggling after 3 years but what she did it really helped with headache and stress i got with it. Also talking to a neuropsychologist can help you understand the after effects and what you can do and gives you more confindence. Hope you keep on getting better. Take care, christine
Hi Mark, I'm 16 years post near fatal VM and yes this is normal, 12 months of recovery really isn't a great deal of time, I was told to wait 5 years to see if the after effects settled down and if they didn't I'd be stuck with them. Your brain has taken a battering and you'd be surprised how little the medical profession knows about the human brain and so it is difficult to say with much certainty how long these episodes will go on for. My experience is that they do reduce over time and that rather than fight them you have to rest and let things run their course. I used to have frequent 'Microsoft windows moments' when my brain would drop out and I'd not know where I was, what I was doing or who anyone around me was. They would only last for 30 seconds or so be really quite frightening, almost like someone had hit the reboot button on my brain and it had to start up again from cold.
Having your brain doing strange things after VM is, judging from the experiences reported in this site, normal but as I say most times they settle down or at least become less frequent. Hope this helps, Jonathan
I had the exact same symptoms that you list. I was misdiagnosed and actually never given a formal diagnosis of vm. These symptoms will stop but it took me about 2 1/2 years to feel normal again. If I get really stressed out or have a long flight/trip it can sometimes trigger dizziness, headache and fatigue. But for the most part I feel great so have faith in your body. You will improve slowly but surely. I did lots of things to help myself along and I would be happy to share if you are interested. Very best wishes to you!!
Thank you, I am glad I am not the only one with these symptoms What really helps me is musical therapy/nature sounds. It might sound crazy but I try to find an hour every day to lay down and relax with the music. The Dizziness usually stops after that for a while. What works for you?
Music therapy sounds nice. I will definitely try that. Doctors had me on antivirals, antidepressants, anti anxiety meds and I was having horrible reactions to them all. I found a holistic md and had them run every blood test in the book. I discovered I had active Epstein Barr virus (I had mono as a teenager) so that virus had reactivated and some mineral deficiencies. To this day I don’t know if some other virus caused my illness and lowered my immune system to the point that the Epstein Barr reactivated or if the Epstein Barr virus was the culprit. I started epsom salt baths, magnesium, zinc, garlic, lysine and high dose of vitamin c daily. I finally got to the point where I could walk outside without the light hurting my eyes or becoming so visually overwhelmed. I started doing very short walks. I just kept this up until one day I could walk in a grocery store again! That was a huge moment for me, even bigger was when I could actually go to a restaurant. Before the noise was so intense and overwhelming along with the visual overload I just could not do it. So I am so thrilled to be able to do these thing now! I obviously had many other symptoms that went along with the illness but I mention these since we share them. When I look back on my journey I am truly shocked at how doctors were so clueless and unwilling to dig deep for answers or think outside of the box. Anyway, I hope you recover quickly!
I'm having those same symptoms now, it wasn't as bad in the beginning and now for the past 2 weeks I haven't been able to leave my house because of light aversion and noise intolerance. Fast paced environments make me feel weird. How long and severe had your photophobia and phonophobla lasted? I'm terrified it will never get better or go away
Jonathan is absolutely correct in pointing out just how little the medical profession knows about the human brain. In the light of this what is even more surprising is how neurologists who are in frequent contact with post meningitis patients fail to see or understand a pattern of after effects which which so many of us report to them. They still look surprised and mystified and try desperately to attribute these common symptoms to other causes, the most common it seems is 'migraines'. Many of these neurologists would do well to read some of the posts on this site from meningitis sufferers instead of simply shrugging off very concerned patients with very lame implausible excuses for their lack of understanding. GP's generally also have a very limited understanding of the problems experienced by post meningitis patients and this is not that surprising. We should though expect a little more from neurologists who are supposed to be specialists in this field. The sad thing is that after putting all their hopes and faith in follow up consultations patients must eventually realize there really is no help or support out there and in the vast majority of cases they are left totally on their own to recover how best they can. This of course is if they are lucky enough not to to have been misdiagnosed along the way and wasted their time and expectations apart from the NHS and it's limited resources.
Hi Kalirachi, totally agree with you. I already gave up visiting my doctor or neurologist because everything they have is a "pill." They have a very little knowledge about it. I was misdiagnosed 3x times, they thought I was having a heatstroke because I fainted on the beach. I was telling them that I could not feel my arms and legs, my blood pressure was extremely hight but nobody listened
I am glad I found this website and I already found a lot of advice for better recovery. Thank God for communities like this.
The blood pressure goes right up in heat. And I have photophobia
The neurologist has diagnosed migraine but I have had stiff neck and vertigo after flu and now have to avoid heat I had extreme headswelling after hospital gave me medication for what they believed to be asthma symptoms and then in the 2 weeks following the Hodpital refused to do lumbar puncture and kept me in hot light corridor also forgot how to swallow especially in heat not sure 🤔 if I am any better in 3 months or just learnt to avoid direct uv light if I get in a friend's car who doesn't have uv block far werse
Doctors especially GP who told me to breath into paper bag when initially got symptoms should be shot should be told to avoid heat and light may have got better still angry 😡
I had all those after effects and it has taken 3 years to recover from those. For the dizziness in shops etc you need physio to reset your vestibular balance.
4 years on I have made almost a full recovery . Click on my name and read previous posts and recent ones for a bit of positive inspiration .
Just Curious what was you misdiagnosed with 3 times? Hope you are well! X
I’m having same problem feeling so dizzy every day even when I’m lying down, feeling sick, extreme fatigue and getting sudden headaches. Feel so week too
Doctor said it’s mild form of vertigo but I’ve been ill for 3 weeks now. Feel so poorly
I was in Africa on holiday and I literally fainted on a beach. I was absolutely fine, drinking, chatting with friends and in a second I started to feel weak and dizzy. I spent the rest of the holiday in the room with dizziness, I could not feel my fingers and legs sometimes. I had this "episodes" a couple of times a day when I felt like I'm gonna faint in every minute so I rather stayed in my bed. I could not eat and my blood pressure was extremely high. When I got home I went straight to the doctor and he misdiagnosed me with heatstroke and sunstroke three times! I was visiting the hospital every week with the same symptoms. After 3 weeks of terrible pain and headaches, I developed other symptoms like noise and light sensitivity and a stiff neck. Headaches was getting worse and worse, I completely lost appetite, I had this weird sounds in my head, I felt like I am drunk, my head was spinning. It felt like some kind of auditory and visual hallucination. I could move my arms but I felt like they are not mine, because of the inflammation of the nerves. It was the strangest feeling I have ever experienced.
I am not a doctor, symptoms you are describing can be anything else but tell your doctor to do a lumbar puncture. This is the only way how to be 100% sure that you do not have meningitis. DO NOT WAIT, GO TO YOUR DOCTOR AND TELL HIM TO DO IT! Had I known that I would not suffer from aftereffects now
I hope you will be fine! But please do not wait, If you don't feel good tell your doctor to do a lumbar puncture. Doctors do not take meningitis patient seriously. You can learn from my experience. Let me know then what was that!
Oh my word that sounds scarily familiar to what I am experiencing! I will be fine then all of a sudden I get a wave of dizzyness and weakness and I literally have to just sleep it off!
Thank you so much I am going back to my doctor tomorrow and demanding to be tested!
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.
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Viral meningitis 
Viral Meningitis
