Normal MRI? Balance, tired: Hi I am 3 months... - Meningitis Now

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Normal MRI? Balance, tired

greenocean
greenocean
9 Replies

Hi

I am 3 months post viral meningitis from shingles. I am still not back to work full time as I am exhausted and have “balance” issues. When I am tired I start looking a bit drunk. I had a recent MRI and everything looks fine. So what is it then? Does anyone else have these symptoms or a normal MRI? How long did the symptoms last? thanks

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Sunny308

Do you take any anti virals like lysine, red marine algea and other natural supplements from a health food store? Definelty helps and prevents

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Jonad724

I'm 17 year post near fatal VM and yes this is normal for the post recovery period. Unfortunately doctors will tell you that you will be better in 2-3 weeks and then seem baffled as to why you're not. That's because they are taught in training that recovery from all types of meningitis are the same and if they have never treated a case of VM then they have nothing to the contrary to go on. They will do tests for routine things that cause the symptoms you are experiencing and most times they will come back normal.

After 2 months I was told, despite barely being able to walk and string a sentence together, that I was back to normal and just 'putting it on to get out of work'. I'm afraid recovery from VM can be a slow process and requires a lot of patience and rest, two things I wasn't very good at before. If your doctor tells you it's not the recovery from VM causing your symptoms ask them how many people with VM they have treated before? I did with my GP and I got the usual waffle about how all types of meningitis are the same and therefore I was better after 3 weeks. You may have to be persistent and keep asking them, doctors don't like their professional knowledge being challenged, but I would put money on the answer being none.

You can tell them that there are several dozen reports on this site of VM recovery taking a long time and the symptoms you are experiencing being normal. Far from being the 'mild' form of meningitis, VM can kill and can seriously debilitate as well possibly taking a long time to recover from.

It's difficult to say how long recovery will be because it is different for everyone. VM though causes trauma to the brain and it's not until you have a brain illness that you realise that the medical profession understands about 10% of how the brain works and the impact of non-impact brain trauma.

As Sunny308 said some antivirals can help, Lysine helped me with the ongoing headache, but the key thing is to rest, rest and when you have rested, rest some more.

My MRI, which I only had when I told my doctor I had BUPA, showed I have a slight concave impression on the front left quarter of my brain but this was 'nothing to worry about'. Having seen an eminent neurologist (thank you BUPA) he told me that this would have some after effects but these would be difficult to second guess as to what they would be.

I am a volunteer Community Ambassador for Meningitis Now, with a specific interest in supporting people how have had or are going through VM, so if I can help at all please PM me. I also wrote some blog posts about my recovery, just click on my profile and then click on 'posts' and this should bring them up. I hope they help and my virtual door is always open if I can help further.

Take care, Jonathan

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Debcorn

I’m the same about 3 months post VM, I have dizzy spells, stuttered speech like my tongues tied and ear aches

All worsened when I’m tired !

I also got vm through the shingles virus but I have questions like ... “ should we avoid people with coldsaw s ? Will I get it again ?

Also I am tired a lot !!! But slowly getting better , very very slowly but I’m improving , hope u r too x

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Gm23

It took me around 8 months to get over the ‘drunk look’. I couldn’t speak or walk properly and I was constantly exhausted. Still am in fact! And it has been 15 months for me. I had a flare up again 2 weeks ago which definitely was nowhere as bad however was diagnosed with Mild VM again honestly I forgot how horrible it makes you feel. Hope you get better soon! And definitely get plenty of rest :)

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Pinkladytracy

I am 4.5years post VM and it’s left me with neurocardiogenic syncope - I collapse and have balance issues and left me with ME / chronic fatigue and my MRI is normal, I had to see a cardiologist after 4yrs of trying to work out what’s wrong and I had a tilt test which then explained what was wrong - something to think about if it doesn’t clear up ! Good luck with everything x

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Vmzoster

I’m 8 months out. Still get dizzy a lot and sit down to avoid fainting. Some days better than others. When my brain is tired I have a lot of trouble finding words and feel like I had 2 glasses of wine. My balance is pretty good but not as great when tired which happens easier and earlier than before. I have tons of trouble concentrating and sticking to task! My brain is like “Squirrel, squirrel squirrel!”

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Bonkitty

I had VM 5 years ago and it took 2-3 years to get to a point where I could start to recover. I had permanent migraine / headache and loss of balance. All scans come back as normal but a good neurologist understands these problems which are caused by brain inflammation and pain. The balance was easily rectified by physio therapy to retrain the brain. I still lose my balance when the migraine is severe or when I get tired. I climb mountains and go bouldering and this helped to rectify my balance by walking/ climbing on uneven surfaces.

Most physios have a balance programme .

I was off work for 19 months and now I have been back at work for 4years on reduced hours. I still have chronic migraine and tiredness but I am generally back to doing normal things and I have climbed Britain’s 3 national mountains. So rest up , check out physio and take care x

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Vmstein

I’m 7 months past dx and although the stuttering, balance, changed handwriting, and some other verbal symptoms are better, the fatigue is still absolutely crushing and most days I can’t do more than sit on the couch and *maybe* cook dinner, although over the summer I was stopped from even that after almost setting the kitchen on fire in a brain fog. My memory is also just shot, and I still get little dizzy spells. I cannot drive and haven’t since March 15th. One good thing I can say is that they were able to pause me on our car insurance so we are saving a little money. I have 2 kids, 9 and 12, and they just want their mommy back - desperately. But I just can’t. Not even to go to a movie. My mother just took me to the grocery for the first time in recovery about a week ago (I’ve been using delivery service.)

Just as everyone says, as much as you want to scream, “It’s not FAIR!!” - and it’s not - this is where we are. Keep reading the posts on here - it’s the only thing that has made me feel better about my condition.

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greenocean

Thanks all

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