Symptoms following Viral Meningitis - Meningitis Now

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Symptoms following Viral Meningitis

Maisie23 profile image
15 Replies

Hi. Wonder if anyone can help.

I had VM in January this year and am still suffering with the after effects. I have headaches, fatigue and memory loss.

I have been back to work for 2 months on a phased return.

I am finding my concentration very poor, and have great trouble with retaining new information.

In addition I have found when trying to read I can not seem to take in or register what I am reading. This is far worse when trying to read off a computer screen. I only seem to be able to read short phrases at any one time.

Has anyone any tips how to get round this as I am struggling to manage to do my job which is a stressful demanding physical and mental one. ??

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Maisie23 profile image
Maisie23
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15 Replies
rbwazmotown profile image
rbwazmotown

Hello - I was diagnosed 7-6-13 with VM and I am still feeling the exact same things you mentioned. I actually just had my 3rd Lumbar Puncture on 5-30-14 to see if it is coming back. Spinal fluid all clear but I still feel like crap. Just went to doctor (Neurologist) yesterday and what I am finding is doctors only know how to treat you if they see evidence of VM still in your system. They do not seem to understand why I am still feeling this way after almost 1 year. One thing great about this website is to read the other stories of the folks who have been dealing with this also. Reading their stories has really helped alot. One thing I have learned is that your body decides when you will feel better and you have to do the best to rest when you feel crappy or have headaches or nausea. I know this VM will make you feel like why am I still feeling this way after so long since the diagnosis. One common thing I have read from the folks here is rest, relaxation, and do not work yourself to death. I went back to work after 5 weeks and that was way too soon. I had the luck of having short term disability insurance to help but now I have used most of my vacation time going to doctors just to hear them tell me the same thing - we cannot do anything for you except provide pain killers and anti-seizure drugs. One thing too is that you might want to see if you can do less physical things at work and try to reduce your stress level. I know that is probably easier said than done but I know that when I came back to work and jumped right back into my job, which is very physical, it just wore me down. Remember, your number one job is to get yourself feeling better and you will but it takes time and everyone is different. Please read some of the other great posts by folks on this website, it will give you prespective and definitely know that you are not alone. take care and best of luck to you.

Jonad724 profile image
Jonad724

I had near fatal VM 12 years ago and suffered the same things you are. What I helped are anti glare screen on the monitor, you can get them for laptops as well or use a privacy screen, does the same job. As rbwazmotown said rest and reducing stress is the key, also have a look at other posts and also my blog, and don't believe the medical profession when they tell you VM is no worse than flu and you shouldn't have side effects. I was off work for 6 months so yours is a very short time really. Doctord are told it's like flu in training so they need re-educating! VM can take a long time to recover from and I have been left with a number of after effects but I have also completed two half ironman triathlons in the past two years so there is definitely light at the end of the tunnel. Good luck!

amyelizabeth profile image
amyelizabeth

I felt just like you. It was as if my brain was saying switch off, I can't take anything in anymore.My brain actually hurt. Sleep , even just for 5 minutes was the only way that gave me any relief . Very difficult to do at work I know.

Concentration is still a problem one and a half years later. I have to try and nod off for 10 minutes somehow.

Melski profile image
Melski

Hiya, I too had VM end of April this year, like you I suffer with the same side effects, something as minor as food shopping can wear me out resulting in needing a nap, There is not a day I don't struggle one way or another, I was discharged with no follow up. I went to my gp and asked for a neurologist appointment at my local hospital, they can check the fluid that surrounds the brain, this is a simple test, they just look in your eyes, also the meningitis trust helped me massively, they gave me a information pack that reassured me hugely. Good luck with your recovery and remember Rome wasn't built in a day. Get in touch with the meningitis trust

Melski profile image
Melski

Also meningitis in any form is a brain trauma, you don't get over that in such a short time, I keep being told " be patient " it don't help that I work in the medical profession n doctors seem to think that meningitis is a minor problem !!!

Maisie23 profile image
Maisie23

Thank you all for your helpful replies. I have been in touch with the meningitis now trust who have been very supportive. Hopefully I will have the opportunity to try complimentary therapies. I too had to push for follow up and neurologist appt which is in another 2 months time.

I am a health professional and have to try and aim for full time employment soon.

I too find simple things like grocery shopping exhausting. I sleep endless hours, but still keep trying to push myself. I was always very active.

I worry that these symptoms will not resolve and I will be left this way.

Bonkitty profile image
Bonkitty

Hi Maisie23,

I had VM in March / April this year and I am still suffering with the after affects of headache, stiff and aching neck and spine. I have the same difficulties with reading and concentration as you are experiencing. I take 10 - 20mg of Amytryptaline to help ease the pains but I find these knock me out and I struggle to wake up in the morning. Today I am visiting work to test out if I can drive the distance and listen through a meeting as I may be starting back in 2 weeks. My job is also demanding and I too am worried about how I will manage but I plan to take things easy and rest much more and ask for help at work and accept that at this moment in time I have to look after myself in order to recover (not something that I find easy)

Hope you start to feel better soon. x

Maisie23 profile image
Maisie23 in reply to Bonkitty

Hi

I tried Amitryptiline too, but suffered side effects and it didn't help with headaches. Am now on 1800mg Gabapentin daily which seems to have helped a bit.

I hope you get on ok today,. reading the forum, makes you realise just how many people suffer similar symptoms too. It seems recovery does take a long time. Hope you feel better soon too x

Bonkitty profile image
Bonkitty in reply to Maisie23

Hi Maisie23,

Well. I managed to go to work for the afternoon, I think I was already having a relapse and so spent the weekend in bed in a lot of neck and spine pain. So I am back to resting (thank goodness the tennis is on to watch). I am to start phased return to work soon and I am already worried but I hope to work from home mostly until we break up for the summer holidays. Hope ths week is better for you. x

Maisie23 profile image
Maisie23 in reply to Bonkitty

Hi

That's not so good for you, hope you're now feeling a bit better.

My first week back to work was dreadful, I only worked 9 hours but spent the rest of the week asleep and with really bad headaches. It gradually got easier, and now I just about manage 24 hours a week.

Get plenty of rest and don't try to push yourself, that was the mistake I made

doll606 profile image
doll606

Hi, I had vm in jan this year, although I was treated for both when rushed to a&e as they didn't have time to do lumbar puncture as I was so ill. I was off for 3 months, went back on phased return, then did a month back full time and have ended up back off work as I did too much too soon and have post viral fatigue. Listen to your body and take plenty time to rest. I found it hard to accept that it wasn't going to be a quick fix and that there would be lingering symptoms, mine are fatigue , dizziness and also a lack of concentration. I think the lack of concentration is something people find hard to come to terms with as it wasn't there before but you are definitely not on your own, mine gets worse with trying to deal with too much at once. I try and break things down into manageable bits, a couple of tasks long, rather than have a big list of things to plough through for the day. Meningitis now were a good support for me. Knowing that others are going through the same things reassures you that you are not on your own and there's no quick fix but things will improve.

Take care

Maisie23 profile image
Maisie23 in reply to doll606

Thankyou. I do find the lack of concentration and memory problems difficult to deal with. Constantly comparing the way I am now to the way I used to be.

I will try deal with things a bit at a time. Everything you mention makes a lot of sense.

Hope you are feeling well

siobahn profile image
siobahn

Slowly slowly slowly.....

Read a 'letter from your brain' it helped me & my family understand things alot better... Try qi gong when you are able.

Breathing exercises

Suffocate yourself in selfishness, nurture your new self....

Maisie23 profile image
Maisie23 in reply to siobahn

Thank you

I will try, very hard to be selfish sometimes

Captainbeaky profile image
Captainbeaky

A few thoughts spring to mind on this thread.

One comment I read was that amitriptilene had bad side effects - just a thought - but I found that it was very important to take it early in the evening (6-8pm) not just before bed, so I would be clear in the morning. Amytryptylene lasts for about 10 hours...

Also - alcohol really disagrees with a lot of these drugs. I found a very bad reaction between amytryptylene and alcohol, so abstention is the way for me - and it seems to work.

I do not drink much - a heavy week for me would be 4 pints of beer! But I found that ANY alcohol really disagrees with amytryptylene.

Definitely read " a letter from your brain".

Also read about "mild brain injury" - as this is essentially the aftermath of VM.

One important thing - unlike other injuries, you cannot tough things out. If you have a bad day - take a rest. As soon as you get the early warning signs - stop what you are doing straight away and take it easy.

It is not a good idea to try and jump back into work where you left off.

Start with "light duties" and fewer hours. I was lucky, as my work is in a quiet office, and I could do as much or as little as I could manage. Ask your employer about light duties and limited hours as you slowly return to work.

Recovery from VM is all about you listening to your body and giving it what it needs.

Be selfish - sometimes it's the only way to make others realise that you really are ill.

Don't struggle through - rather than push myself too far, I had to close meetings early, or excuse myself. I asked people to talk quietly and slower than usual, so I could keep up.

It is very hard - especially if you are an achiever - a "doer" - a driven individual. It's difficult to step back sometimes. But part of life is about taking stock, so do exactly that - step back, take stock, and re calibrate your capabilities.

You will recover - but it will be slow. You will have setbacks, but they will be worse if you beat yourself up about it.

Lean on your friends a bit - they will understand your need to be selfish, and I was amazed how many friends pitched in to help when they realised how bad I was. How many friends would take the dog for a walk when I couldn't face daylight. How many friends cleaned my car prior to sale, how many friends drop by to check on me.

Lean a little - you'd be surprised how many friends a selfless person has!

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