Post Viral Meningitis - Don't Feel Like Me Anymore

[abidevlin]

Hi,

I was diagnosed with VM in February after a week of being told by a number of different doctors that I had a "severe viral infection" or "migraines". Even though I had been experiencing the most severe headaches I ever had (I've never been a headache sufferer) and extreme photophobia. I was finally diagnosed with VM following a CT scan and LP (the most horrific thing ever). I was then sent home! I was told by the doctor as I was being discharged that "as it's only viral, all you can do is take pain killers and rest".

Fast forward 2 months of absolute hell, sleeping 23 hours a day, extreme headaches, inability to walk, photophobia and feeling like I would never be myself again; I returned to work. I lasted 2 hours, left and on my 10 minute drive home forgot where I lived and how to get home! I didn't even recognise my house when I returned home.

I forgot simple things such as my mum's name, the pin to my phone. And couldn't do simple things such as make a cup of coffee or text.

That was followed by seizure type episodes (not 100% that they were seizures) I would know it was going to happen as I would have a tingling sensation at the back of my head. This was then followed by me becoming a drooling, dribbling mess. Then my head felt like it was going to explode and muscle spasms would start. Often started with just my arm, and then it would be both, then my legs and sometimes even my neck and back would be affected. Once I'd come out of that, I'd be in a weird state where I was aware of things going on around me, people, conversations, noises, even the TV in the background but I couldn't respond, communicate or even let people know that I could hear them. I felt stuck inside my own head. This could last anywhere from 20 minutes to an hour and a half.

Following that I was sent back to hospital, and told that I still had inflammation on the brain. And sent home again! I was told I'd be referred to a neurologist. I received a letter a few days later telling me that it wasn't deemed necessary to see a neurologist and my symptoms were "probably from the recent case of viral meningitis".

Fast forward another month, recovery is going well and due to certain circumstances I have to push myself to be ok - that means returning to driving, returning to work etc.

That was 5 weeks ago - I am still in work. I came back full time (WHY?!) and it is starting to really get to me now. I can never manage the 9am start. I often arrive in work between 9:20 and 9:45. I am utterly exhausted, I cannot get up in the mornings. I have been back to the doctors who following blood tests (which were normal) have re-referred me to the neurology department. I am now awaiting an appointment.

That was last week.

This week I have somehow gone back to having memory problems and confusion. I have a total lack of concentration and constantly feel like I've had a couple of glasses of wine.

Last night, the headache was excruciating and I started to have the jolts/muscle spasms again. It was horrible and today I feel a little like I've had a couple of glasses of wine.

Basically I'm looking for reassurance that this is a normal recovery from VM.

I don't feel like I'm the same person anymore, instead of being the happy, bubbly, loud and talkative 19 year old I used to be, I've been replaced by a miserable, grumpy, irritable and argumentative old woman (that's how it feels) sounds irritate me, people irritate me. And it causes a LOT of conflict in my life. Nobody wants to be around me any more. I feel down, depressed and alone a lot of the time. Like nobody understands. People look at me, and I look the same, I look a hell of a lot better than when I was ill and assume I'm better now. "Oh so you're all better now?" Um. No. Not quite. I feel like it is invisible, and that's why in turn I feel alone because nobody understands. Nobody understands that I get upset because this is not me. And I argue with people for no reason and seem to have no control.

I just need somebody who understands what I'm going through to guide me.

Thanks

Abi

x

[sopie]

I do understand, and wish, I could reach out give you a hug. You can see my previous post to others, which sound a lot like your experiences. There are several of us who are supporting each other, most by just saying, "I Know", which few if any of the people in our daily lives, can tell us.

I do understand and so wish, the medical communities understood what we are dealing with. However, as several of these post show, many doctors have not dealt with many if any patients, which are experiencing this. It is true some people may have VM and only have one episode, and recover and never have any lasting effects. But that is not true for all, and the few of us which were not that lucky, share how we feel, and gain great support on this site. Take care of YOU, and forgive yourself, and hopefully reading these post will help you as much as they have helped me. Best wishes, truly!!!!

[abidevlin in reply to sopie]

Thank you so much! It's just nice to not feel alone and have somebody actually understand

X

[Bonkitty]

Hi Abi,

That all sounds familiar for the early days of viral meningitis. I am 13 months following VM and I am still having severe headaches / migraine and not yet back at work. The brain takes a long time to recover 12 to 18 months is thought to be usual so you will need to rest your brain and body and be very patient. I have written many posting on this site offering lots of advice for the supplements that have helped me so it may help you to look through those and try some.

It was hard to get the hang of completely resting but if I didn't , I suffered for it.

Take care Abi. X

[abidevlin in reply to Bonkitty]

Hi Bonkitty, thanks so much for your reply!

I have never been told or found out how long the brain takes to recover, so thank you for that. I really do regret coming back to work already, but couldn't afford to be off for any longer; which I know is an awful way of thinking about it. As if prioritising money over my health.

What gets to me the most I guess is that I had never been a headache / migraine sufferer before VM. I could probably count on one hand the amount of headaches I've had in the last 5 years. And only ever had one migraine before - I can even recall the date as it was only one time!

You sound like you have had an awful time as well - fingers crossed your recovery goes smoothly.

Thanks again for your reply - I will look out for your posts.

x

[SilverCharm]

You have had such a rough time. I cannot fathom being 19 and going through what you have. I am 41 and my bout with aseptic meningitis merely looked like the flu compared to your suffering. Hang in there. Things should get better.

Find a good neurologist. Also look at some of my posts about a reconstituted vitamin I started taking which really really helped me.

Good luck to you and with a little prayer and faith you can get better.

[abidevlin in reply to SilverCharm]

Thanks for your reply SilverCharm - much appreciated!

I'm waiting for my appointment with the neurology department - I've been offered one appointment so far but I'm in Greece on that date (trust me, I need this holiday in Greece!!) so am waiting to have the appointment rescheduled.

I am considering going back to my GP because I seem to have gone slightly downhill this past week.

I'll look out for your posts.

Thanks again

x

[Jonad724]

Hi Abi, I'm now 13 years post near fatal viral meningitis, 10 minutes from my relatives being called in, in fact. First and foremost what you describe is absolutely normal for VM recovery as others have said. The medical profession is taught (I work in the NHS so have been able to question enough GPs and hospital doctors to know this is the case) that VM is never serious and always like a dose of flu which you'll get over in a couple of weeks. There is very little recognition that there can be long lasting after effects and considering it involves a brain being under a lot of physical pressure they seem to be very blase about it. So this explains why the medics don't understand or seem to be taking you seriously. I also suffer from the type of seizure you describe, tingling in the back of the head then a slow progression towards what looks like a involuntary twitch. By a process of elimination I worked out that this was triggered by caffeine incidentally. The reason you feel good one day and like an octogenarian the next is because the only real way to recover from VM is rest, rest and more rest. I'm afraid pushing through it is only just going to push you further back so it's possible that you're feeling good one day because you have rested but as soon as you start to resume your pre VM life then it bites. I also had the memory loss you describe to the point where I knew it was my daughter in front of me when I was discharged from hospital but I had to ask her which one she was. I also had to learn to walk again and to be able to string words together to form a sentence. I used to (and still have sometimes when I'm very tired) 'Microsoft Windows' moments when my brain stops responding and for a few minutes I don't know where I am, what I'm doing and why I'm doing it. Fortunately it hasn't happened driving but it is very scary as I'm sure you already know.

I'm afraid you have to be persistent with your GP and insist that you are referred back to the neurologist and for a brain scan because VM can potentially be life changing and you need to know what is going on. It's not their fault they are told VM is never serious, even meningitis charities didn't realise how serious it could be until 3 or 4 years ago but fortunately that is changing. Meningitis Now has a leaflet on their website and some really good information here: meningitisnow.org/meningiti...

I took the leaflet to my GP and actually got him to admit that he had never treated anyone with VM before (there is an upside to being angry and argumentative sometimes) and from there I was taken seriously but it was a fight.

I know you desperately want to feel normal again and get on with the life you had before but I'm afraid VM is an illness which is overcome with patience and this is tough at your age, it was tough at 39 so what the heck it must be like at 19 I don't know.

So what you're experiencing is normal and although experiences of VM are different they pretty much follow the same pattern. The good news is there can be light at the end of the tunnel. What saved me was my fitness (I was a slow but active triathlete training for a sea triathlon when I came down with VM) and although I had to take time off from the sport to let my acquired brain injury to settle down I have since completed well over 50 triathlons since having VM including two half ironman races (1.2 mile swim, 56 mile bike ride, 13.1 mile run) and I'm doing my third this summer so whilst I have been left with after effects and patience is not my forte I have recovered and whilst I'm a grumpy old man this is because I am a grumpy old man not because of the VM.

I write blog posts on here once in a while about my experience of VM the first of which was 4 years ago healthunlocked.com/meningit........

Please do feel free to have a look at them and if it would help please IM me and I can share my email address with you if you would like some virtual support from someone who has been through this in spades. When I suffered from VM there was very little support or advice and I felt very scared and very alone. I'm determined that no one else should feel the way I did so happy to help. You can also try the Meningitis Now helpline 0808 80 10 388 which is free to call, staffed by nurses and is excellent. I got my GP to call them about my VM and they were able to explain the error of his ways to him.

Hang in there and remember that if you rest and are patient you should get better and this is very unlikely to be permanent. All the best, Jonathan

[abidevlin in reply to Jonad724]

Hi Jonathan, thanks so much for your reply!

Finally there is somebody who is experiencing the seizures and the same memory loss! I thought I was cracking up. It's as if my mind goes totally blank - as you described 'Microsoft Windows' moments.

I seem to have gone slightly downhill this week, maybe because I've been pushing myself to be my pre VM self. I've therefore started a diary to record each day - headaches, the intensity, duration, whether painkillers have helped, the times I'm getting them. How tired I feel throughout the day, what activities I've done that day. Any memory loss, what it was I forgot (if I can remember!!). And any seizures. Hoping to find a link between it all. I'll at least have something with me when I next see my GP or the Neurologist - as opposed to "yes, I still get headaches everyday. Yeah, I'm tired. Yeah I get confused". I don't think my GP understands the intensity of it - nobody does.

I've had an appointment for the Neurologist on 28th July - but I'm on holiday in Greece, so have had to cancel and wait for a new appointment. I cannot tell you how much I am looking forward to my holiday - to be able to spend a week completely chilled out and relaxed and be waited on hand and foot!

It is difficult trying to recover from this and be 19 - my friends are out, enjoying themselves and making the most of the freedom we have at 19/20. Personally, now, I couldn't think of anything worse - the noise!! What has happened to me? I feel at least in my 70's with the grumpiness! I feel like I should be out enjoying my life and making the most before marriage, children and actually growing up but I'd rather finish work and climb into bed.

I often find myself thinking that I'll never be me again - I do have days where I feel like myself. I remember the first time I felt like myself - it was about 3 months after being diagnosed, I was taking a shower and I just realised "OH MY GOD. I FEEL LIKE ME AGAIN!" It was so refreshing, so comforting. But those days are very hit and miss.

I would love some virtual support - I think I would really benefit from it.

I only joined yesterday - day before, so I don't even know how to PM on here yet. But feel free to send me a message so I can get in touch

Thanks again for your reply.

Best of luck with the fitness and triathlons, good on you!

x

[Jonad724 in reply to abidevlin]

Hi Abi, I've sent you an IM with my email address. Feel free to contact me whenever you need to, happy to help :-).

[sopie in reply to Jonad724]

I too work in Health Care, and agree, doctors are taught or believe that VM is not concerning. I believe this is because some cases can be recovered rather well rapidly. It is the rare case as described in these post that is under appreciated. How do we get the attention of the medical community, that there are those of us out here? Reading these post, they all have so many commonalities and examples of symptoms and reactions which are so exact to each one posting. However, since each one of us see one doctor who often state they have never seen it before it goes underappreciated. I think we need to look at the frequency and somehow bring it to someone's attention.

[Jonad724 in reply to sopie]

Absolutely agree, Meningitis Now created VM awareness week last year with the Vocal about Viral campaign but we need more than this but the best medium to support has to be MN and their ability to raise awareness I think. I had to virtually have a stand up row with my GP, well as much as you when your 3 months post near fatal VM, to get a brain scan. This showed an acquired brain injury which he queried as being caused by VM!

[sopie in reply to Jonad724]

Jonathan, I live in the US so do you know if there is email or website, to call would be difficult with the time difference. The US does not have Public Health, and for some of us it is almost impossible to go to a doctor, unless we are lucky enough to very good Private insurance. I would love to visit with the clinic you called, if possible via email.

thanks Sopie

[Jonad724 in reply to sopie]

Hi, Meningitis Now is a UK based charity meningitisnow.org but the resources are available everywhere. Hope this helps

[CMJ1]

Hi Abi,

I feel for you, I really do. I had VM in September 2013 and, like you, it took a couple of weeks after the symptoms started before I was diagnosed. As you'll see from everyone's replies what you are experiencing is completely normal post VM, despite what some medical professionals will tell you.

What people on this forum will tell you is that things do improve with time and it is true. Your body has been through a major trauma and needs time to heal and recover. It can be frustrating at times because progress can seem incredibly slow. There have been times over the last (nearly) two years that I have thought I was going mad because people would say that I looked much better but that didn't reflect how I was feeling. Two years down the line I am still suffering daily migraines, fatigue and some mood and memory problems but I can see how much I have improved and how much more I am able to cope with and manage on a daily basis in comparison with how I was just a few months ago.

I know it can be exhausting but be persistent with your GP and neurologist. Yes they are medical professionals with lots of training but that doesn't necessarily mean that they will have dealt with lots of cases of VM. Also, be aware that neurology is quite diverse and different neurologists have expertise in different areas of it. I was initially referred to a neurologist who specialised in movement disorders just because he happened to run a clinic at my local hospital. I wasn't convinced by what he had to say and pushed for a referral to a neurologist who specialises in headaches (my main complaint!).

Finally, get yourself as much support as you can. Like Jonathan, I totally recommend you contact Meningitis Now. They have been an invaluable support to me and my family over the last two years. I have contacted their helpline, had home visits from a community support worker and had counselling sessions funded by them.

You say in your post that you have had to return to work. It may be possible that you would be entitled to sickness benefits if you are really struggling with work and home life. I wasn't able to return to work and am getting ESA and PIP. Go and talk to your local Citizen's Advice centre. The forms are daunting but they will help you fill them in - and even if you continue to work you may still be entitled to PIP.

I hope you are finding this forum useful. Sometimes just to know that there are other people out there who understand exactly what you are going through is a help. But please remember that everyone is different and that one person's recovery time and symptoms may not be identical to yours - so don't be alarmed by some things you may read!

Most of all, take care of yourself...

Claire x

[abidevlin in reply to CMJ1]

Hi Claire, thank you so much for your reply

I know this will probably sound incredibly weird; I am so grateful for the positive replies I have received, but on the other hand, knowing that people are still suffering after such a long time is very daunting. I feel like I have such a long road to recovery ahead.

So sorry to hear that you are still experiencing the migraine headaches - I wouldn't wish them on my worst enemy. I know how crippling and debilitating they can be. So I send all my best for your recovery too.

Fingers crossed I will be seen by a good neurologist who is able to help me. I have found only one GP in my surgery has been willing to help me and understands somewhat the severity of this illness. He is now the only GP I will see and I am willing to wait days for an appointment just to see him. He is the only GP who picked up that it could be meningitis and sent me to the hospital; the only one who has twice referred me to the neurology department. He is a god send. And I am utterly grateful. But at the same time, I feel like I don't want to hound him, there is only so much he can do.

Have you found any painkillers that are helpful? During my worst times I was taking Codeine and Amitriptyline but find that I cannot take these now I am back to work as I find it very difficult to wake and stay awake in the mornings. So I am stuck with Paracetamol throughout the days which do not seem to help me in the slightest.

Also, over the last couple of days I seem to be having a lot of pain at the back of my head at the base of my neck and my neck is feeling slightly stiff - nothing compared to the stiffness I experienced when I was ill. I am a natural worrier (some say hypochondriac) and I'll be honest, the neck stiffness is worrying me. Did you experience any of that afterwards? I know that our recoveries will differ.

You picked up on something I absolutely hate in your post. When people tell me I look better, I look more myself, I've bounced back to normal. At those times, I wish they could see inside my head, experience the headaches and the feeling that I'm somebody else entirely now. But I just smile, say thank you and reply with 'Oh, I'm getting there'.

I've never heard of PIP - what exactly is it for? I doubt I will be entitled to anything, I am back in work, driving, leading an almost normal life despite the pain and issues I experience.

My GP did inform me that I would probably benefit from some kind of counselling - did you find this helped you? If so, in what way?

Thanks again for your reply

Abi

x

[singlemomof2]

It has been over two years and I am still having problems with it. Doctors don't get it, my legs hurt, I can hardly get going in the mornings, it is hard to work

[sopie]

I understand all to well. Single mom of 1 and years of doctors not understanding, And family, I believe felt I was not pushing myself enough and perhaps exaggerating the headaches and extreme extreme extreme fatigue And the confusion. It is so hard to not see your child's activities because after working, and doing the have to do's in order to survive and pay the bills, that all that is left is collapsing in a bed, trying to block the ringing in your ears, the pain in your back/neck and the spitting head aches. My daughter is grown now but I know she resents the missed times I wasn't available, after all I didn't have cancer, or some strange deformity that others could see. She only saw my absence.

Perhaps with those of us talking -----someday the right doctor will read these comments and realize how much research and understanding to this very real diease is needed.

Your not alone, and many of us on this site understand so well. My first hospitalization was in 1994 and so far last was 2009. While I still have the headaches and various symptoms to some degree, I only found this site about a month ago and it has after all these years, finally allowed me realized I am not crazy, lazy, or a failure. That helps so much, and I only wish the Doctors who treated me, the friends who left me, the family who couldn't understand I was trying to do my best would read your posting and the others and see, it wasn't just me. Most I pray the doctors who ignor or say, "Mollarets Memingitis," what is that? I have come to believe many doctors believe if there isn't volumes of research or literature about something, or if they haven't treated it before or know about it, it just doesn't exist.

Hang in there and be good to you. My best advice, do not push yourself, only time, rest and believing in yourself can be your best answer to getting on with the after affects of V M,

[Bonkitty]

Hi Abi and my VM friends,

I am writing this from my bed, once again in bed, day 3 of most severe migraine headache where my head feels so swollen I think it will burst and my neck aches so much giving me a further frontal head pain. 15 months on. I am taking heavy weight medication: Amitriptyline , topirimate and pregabalin which are knocking me out but so far are not controlling the pain.

When / if I ever get through this I vow to campaign to raise awareness about the after effects of this illness.

As my VM friends on this site are aware, I am usually the one giving such positive advice but the pain and disability has now totally got me down as I cannot work, socialise or do anything without it leading to debilitating headaches. Much of my pain seems to come from my stiff neck and when I move it side to side so this stops me from driving and causes problems shopping and even socialising, eg talking to people and turning my neck. Any of those things will set off a headache that will last for weeks. With this comes a numbness in my left leg and foot.

I wondered if any of this is familiar to anyone else?

It is very early days Abi. Take care. Xx

[Jcrome]

Hi there,

I had VM 11 months ago and unfortunately it does take a lot of time to rest and recover. It took me 6 months to return to work part time and a further 3 months to return full time. For the first 6 months I was often stuck on the sofa and felt like I went backwards as much as forwards. But it will get better. I'm still not 100% but I'm back to being able to do everything I normally do - I don't feel completely better and sometimes I'm dragging through but it has been a very gradual and subtle process. I would say that I've not been able to measure progress in weeks but rather months and months. Try and be patient, eat well, support your body with supplements, and keep your mind occupied. I wrote a blog for family and friends whilst I couldn't work which helped. I still find the mornings tough - I used to be an early riser but now I am very slow and achey in the mornings. I guess that is going to take a fair bit longer to heal!

Anyway keep going, you will get back to normal but unfortunately there doesn't seem to be a way of speeding it up - other than resting whenever you can.

Joe