Hello everyone, thank you so much for reading. I wanted to share my story to see if anyone could offer any advice.
I developed VM back in September of last year following a horrible flu that was going around my office. However, my diagnosis was very delayed and the whole experience has left me feeling pretty anxious and scared because I'm terrified that these after-effects won't improve any further.
When the initial VM was happening, I don't know why I didn't go to an ER. I had extreme light sensitivity, almost a "fog" that clogged my head and felt stuffy behind my sinuses with a weird headache. I had experienced a very high fever, but it was going down so I thought it was just a part of this "flu". After a few days, these symptoms subsided but I began feeling these after-effects including headaches, sensitivity to light and sound, back pain, pins and needles/numbness in my legs, extreme muscle weakness, hot flashes/sweats, insomnia and digestive problems (though this may have been due to stress). I had gone to a local clinic (the only thing covered by my insurance) and they were no help, they suggested that I see a specialist. This lead to many doctors visits, blood tests and eventually an ER visit when the numbness/tingling flared up. I had a spinal tap, but it showed nothing. It was terrifying to still feel that I was dealing with some virus and no one had an answer.
Eventually I saw a neurologist who, upon hearing the whole story, really felt that I had experienced VM and that the after-effects can be strange and long-lasting. He said that if I had gone to the ER/gotten the spinal tap at the start, it would have shown it. I then saw a second neurologist who agreed that my symptoms really fit with post-VM and that he has seen this in many past patients. He gave me a neurological exam and said it matched "to a T" with his other post-meningitis patients.
He put me on a regimen of supplements/very green diet and I have been seeing improvements. The stomach issues, hot flashes and some other things have resolved, the light sensitivity is almost gone. But I still feel strange things. My legs still have lots of residual weakness and certain positions still make them "buzz" and bring on some back pain, and I still have some lymph node swelling. And although I'm gaining some energy back, I still feel so far from who I use to be. I was an athlete, I was training for a marathon when I got sick.
I sometimes feel as if I'll never get any better then this, and I'll never be who I use to be. The whole experience has left me with a lot of health anxiety. When I try to look up symptoms online (which I know I shouldn't do), I keep finding just horrible stories of people who never got better and I'm just so scared that I'll never be "normal" again.
Anyway, thank you for reading.
Written by
littlemizzmovie
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Hi, sorry to hear you're feeling like this but I hope I can help. I had near fatal VM in 2002 and was off work for nearly 6 months and have been left with a variety of after effects but it isn't a life limiter for reasons I will get to. First and foremost it's normal to feel the way you do. VM is not an easy illness to get through and worse when you find out afterwards that you have had it and don't know what it's going to be like going forward. I know this as I have been there. I was discharged from hospital way to early, unable to walk, not able to string a sentence together, confused and dazed by my near death experience. I remember feeling scared that what had happened was going to happen again and this wasn't helped by being rushed back to hospital three days later with no discernible blood pressure and heart rate dropping through 27. I just wanted to be normal again and to be the person I was before the VM struck, believe me I tried but every time I tried it knocked me down again.
So why is it not a life limiter? I was told to stay away from hard physical exercise for five years after the attack, I was training for an Olympic distance sea swim triathlon when I went down with VM and the doctors told me it was my fitness that saved me. Over time I was able to walk a few steps, then for five minutes, then for 10 and so on. When I got to the end of the five year period I was able to take on my first sprint triathlon of 400 metre swim, 20Km bike ride and 5K run. It hurt like hell, I was overweight and as unfit as I have ever been but I did it.
I live with a constant background headache and have developed intolerances to cocoa, alcohol and caffeine and other side effects but all that it has meant is that I have adjusted to what normal means to me. The normal me before VM is different from the normal me post the illness. In 2012 I decided to take on my first half ironman triathlon, a race of 1.2 mile swim, 56 mile bike ride and a 13.1 mile run just in case I wasn't tired enough. At mile three on the run my coach was waiting for me and I told him it hurt and I couldn't do it. He told me it was a half ironman and what did I expect it to feel like. He had a point. I crossed the line after 7.5 hours of exercise to celebrate surviving VM. My daughter who is a nurse though did comment, when I told her what I wanted to do, that I was 'celebrating almost dying by nearly killing myself' but you know what I did it. To prove it wasn't a fluke I did two more plus several more shorter triathlons and last year two half marathons.
No one can predict how you will recover and yes anxiety for the future is normal and natural but whilst it may feel like it now it is not the end of being normal, you may just have to adjust to what that means. Before VM, if you had asked me, I would have said I couldn't do a half ironman. I wasn't some kind of super fit triathlete who bounced back, I didn't and it was hard but there is light at the end of the tunnel. You just need to deal with things one at a time and whilst you're in the early stages of recovery, rest, rest and when you feel better rest some more. I am now a volunteer community ambassador for Meningitis Now with specific focus on helping people recovering from VM and so if you feel I can help please do message me via this site and I'll share my email address with you. I also wrote several blog posts about my recovery, if you want to read them please just click on my profile then click 'post's. I hope they help but please remember you are not alone and that there are others who have been where you are and can help you to not feel afraid and lonely.
Thank you so much for your reply, your story is very inspirational. It must have taken a great deal of patience to wait through the "five year period", because others continually tell me that what VM has done to me will take "years" instead of "months" or "days" to start feeling more normal. It's just very hard to have a flare-up of these symptoms and not immediately think, "it's all coming back, i'm never going to get better."
Thank you again for your advice. I hope to get back into the fighting shape that you have achieved.
Interesting reading your post. One of the problems of trawling posts and blogs on the internet is that you rarely hear from people who have completely recovered. The vast majority that do recover tend to get on with their lives and are reluctant to revisit the times when they were feeling particularly unwell. It's easy to get a false impression and start believing that no one actually recovers!
I some respects you were 'lucky' in finding a neurologist who at least had some experience of post VM and the history of patients affected and their symptoms and recovery.
I was admitted to hospital in September 2016 with all the recognised symptoms of meningitis. They completely messed up the lumbar puncture, this was carried out by a junior doctor who managed to scrape blood vessels on the way in which meant the sample of CSF was contaminated with red blood cells when it is supposed to be absolutely clear. Because of this they couldn't be definitive about the diagnosis of VM and just confirmed it was a 'virus'.
After five days in hospital I was discharged and told I would recover at home and would recover completely in a few weeks. I couldn't stand up on my own or walk even a couple of steps.I phoned my GP to see if he could offer any help or advice and I was just told to rest. I could see that lying in bed wasn't going to get me walking again. It became glaringly obvious that my GP had no experience of patients with post VM after effects and was simply unable to offer any advice, help or support. I was supposed to see a neurologist three months after being discharged. This was extended to six months without any explanation. Realizing I was completely on my own I very slowly taught myself to walk again, a very slow process full of ups and downs in many ways. When I finally got to see the neurologist, not a newly qualified one incidentally, he admitted to not having a clue as to what was wrong or what the post VM after effects could have. It seems it's not only GP's who are uninformed, all the 'specialists' I have spoken to seem to be completely ignorant on this.
The NHS is good at acting quickly in life saving situations but utterly hopeless at providing any after care or support for people trying to recover not just from meningitis and many other illnesses. Telling patients on leaving hospital that they will recover after a few weeks rest at home is wholly wrong. When people show no obvious improvement after a couple of months or so this naturally increases the worry and concern that they are not getting better.
Sorry to hear of your struggles. I say, this is now your marathon, getting better! Then when you are there you can train for that other running one! Please dont lose heart. It sounds like you are on the road to recovery, just keep on that path. Try cranial sacral massage, it has worked for many. Be kind to yourself, know how you feel and honor that as well. In the end you will be more perceptive of yourself, thus helping you throughout your entire life. By all accounts I have heard, most people recovery from this ...and you were strong to begin with. My husband had vm and made a full recovery, you will too!! My very very best to you. Michelle
It’s so frustrating and scary when you have been so fit previously. I’m now 10 months post VM and also felt like I would never feel better. I do still get anxious when I feel unwell and still have residual headaches, neck stiffness and general aches and pains but all have improved massively over last 3 months and I’m pretty much back to my old self. I found Yoga, lots of fresh air and walking have helped along with eating healthily and I take a variety of supplements too. My GP prescribed Sumatriptan for the headaches and that usually nips it in the bud when I feel one coming on. You will get there!
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.
Hon I’m sorry you’ve been through so much! You will get better! I’m finding my tastes have changed completely and it’s probably my body taking charge. I’m only 2 weeks in and mainly sleeping . This forum is really helpful . Xx
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