Just found this site - thanks to all contri... - Meningitis Now

Meningitis Now

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Just found this site - thanks to all contributors.

Captainbeaky profile image
4 Replies

I contracted suspected VM back in November 2013.

After about 10 days of blinding headaches, I was whisked off to hospital for a scan.

The doctors were happy that it wasn't bacterial - but were concerned with it being a bleed.

Had a cat scan - nothing showed. The doctors considered a spinal tap, but decided against it ( and after reading some of the experiences here, I am glad they didn't do one).

I've been suffering terrible "pressure" headaches, light aversion, difficulty in choosing words, poor balance, panic attacks ( and irritability is bound to follow these symptoms!)

The doc has more or less said that he best we can do is treat it like a migraine, and given me lots of serotonin receptor drugs ( typical migraine drugs).

Christmas was mostly spent in bed. And while I have seen a reasonable improvement, it takes little to push me back over the edge into migraine-oblivion and bed rest.

Just when I thought that I was slowly recovering, getting a little more done each day, and only taken one day off work in two weeks.....

This weekend, some friends were going to look at an old fire engine that they want to buy ( they are firemen by trade, and also into classic vehicles). Had a great day, crawling all over the fire engine, checking out the engine etc for them got soaked!

Got home, pretty much collapsed into bed, to surface 36 hours later. Awful - truly awful.

While it isn't great to hear of so many people suffering this awful condition, it does at least make me feel that I'm not alone, and that it's reasonably normal.

It is so annoying though - I am usually so active, I miss my Mixed Martial Arts training - I am absolutely rubbish at it, but get 10/10 for effort. I want to carry on restoring my old motorbike, and my old car, I want to help out at the school( I am a governor) - and I love my job ( Engineer for Rolls-Royce aero engines) . But I am just incapable. Every time I use any spare energy, I end up in bed. It is so crushingly frustrating.

Work have been great, have allowed me to work shortened hours, and work from home where possible - and have been exceptionally supportive, and are genuinely helpful. This has been a great boost, but I want to work harder , do more not less.

I find this site just as I'm at my wits end, so it gives me something new to look at ( I have to be honest, a balanced diet has gone out of the window. My senses of taste and smell are still shot.

So it gives me some stuff to look at and work on - if i can spare the energy!

Good luck to you all.

Mike.

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Captainbeaky
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Gra661 profile image
Gra661

Yes my sympathy is with you it is a truly awful illness to have it was Jan 2011 for me and I won't dwell on what happened to me it's all in my blogs for you to read and I had all of what you describe.

What you have are the typical after effects of he illness as so nicely described by my own GP a very comforting soul but not really his fault, if you don't have experience of it then it's difficult. The help I received was practically zero from him apart from those immortal words it will take time. This site and the people on it with their blogs have kept my sanity in tact you can't meet a nicer bunch of people they will help you along the way to your recovery.

The best advice is to take your time yes I know it will have been said to you but it does work. Stop when you are tired, never overdo it this has the reverse effect, if you are tired then sleep it's your body telling you that you must rest and if you are in any doubt ring Meningitis Now they are there to help you they are experts.

Read all of the blogs that you can on VM we are all in this together and we will help each other with all of our experiences.

I will be posting another blog shortly of my experience that I had on a pilot project of complimentary therapy where I was lucky to be selected by the Trust.

Take it from me pace yourself with your recovery it works I'm not out of the woods quite yet but I'm almost there.

Keep your head up and do not despair we are all with you on your recovery.

Take care and your time

Graeme

rowenafly profile image
rowenafly

Hi hmmm yes. It's very early for you. Two months. I had 3 months off work. Then part time light duties. Then 7 months off work completely to do extensive exercise therapy. Off to the gym 5 days a week. And that was after 8 months. However, it's coming good. So.... After two months only I think what the others said is true, don't push it madly. The time for that will come but it's not now. I suspect you should take your drugs, get expert help from a pain specialist who knows about sensitised nervous systems. And let a professional guide the rehab. So I got a muscular skeletal expert who was a chronic pain doctor and he got me started. Very slow incremental exercise. But, like you, I rode my bike after 3 months and had headache for 4 days. Took morphine for it. Now, I can run and ride for an hour. So.....if u see what I mean about slow? Took 10 months or more after VM to do it. So, I think fear guides us to do more too soon. Like if I don't try now I will end up....disabled etc....I know I was really afraid. But, hang in there. I was in hospital 9 days and it was a severe case. So, take heart. You will get there. I was 43 when got it so not that young, and I have still returned to being pretty fit. Hope that helps you.

siobahn profile image
siobahn

I relate to all the above, my advice is slowly does it! I know how frustrating it is but I made the mistake of rushing my recovery and to my detriment, my frustration caused me anger and I slowed the healing process right down... U have a brain injury, it takes time, I know you most probably look ok on the outside but inside your brain is tired, it needs rest.......The best you can do us read 'a letter from your brain' google it, it was my saviour...

My thoughts & best wishes are with you...

Siobahn x

Captainbeaky profile image
Captainbeaky

Thanks for those helpful comments.

Forgot to say, I'm 42.

What struck me on the weekend was the suddenness. I had so little warning, and bang - out of it for 36 hours - I felt like I had gone back two months.

This is annoying, as I take care of myself, keep educated on health, am a trained masseur, and always look for the best recovery methods for injury etc ( hence the MMA training - lots of fun, great for improving balance, flexibility, cardio and agility). But nothing in my toolbox has worked with this recovery. Most annoying.

Most recoveries, you push gently ( or hard sometimes) to get yourself firing on all cylinders again. But I find that brain injuries are not like this at all.

I went to work on Monday, and went straight to bed afterward! I did venture from bed for some food, and started to do more digging into VM recovery.

Today, a bit tired in work - had a few long meetings, and I have trouble keeping up a dialogue at times. I thought I might crash again, I felt so tired, so I brought my laptop and files home, so I can quietly read through a pile of stuff ( boss is happy for me to work from home) but I had a nice rest, reassessed my energy level ( counted the spoons) and decided to spend about an hour working on the old motorbike in the workshop. Utter blissful simple, non- physical easy manual work. It was so nice to actually DO something - very happy and relaxing, and now feeling a bit tired.

In bed now. Checking mails etc,.

We have a dietician in work, and I went to see him today with a few of the diet suggestions I have seen for VM recovery. He is going to have a closer look, but is initially very supportive of a lower carb "paleo" diet.

Also, going to see my neighbour ( a homeopath) can't do any harm!

Yes, I found "a letter from my brain" - it does bring home how slow this process is.

I am also a bit peeved that there is so little info out there - I wish I had found this two months ago - it would have helped a lot. Also, the NHS guidance is naff.

Anyway, gripe over, I'm off to sleep - getting tired ( or is it the migraine medication starting to make me sleepy!)

Mike,

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