Any Tips for a VM newbe......: Hi all i had... - Meningitis Now

Meningitis Now

6,775 members2,109 posts

Any Tips for a VM newbe......

TezzaMcCann profile image
7 Replies

Hi all i had VM in August 2012, and have been left with Many Symptoms Headaches, extream fatigue, Sluring, loss of Ballance (only really acceptable after wine lol), aversion to light, loud sounds, mass noise, Sight disturbances, decrease tollerance of alchohol, mood swings to name but a few!!!! I am trying really hard to Stay positive and look for solutions and/or ways to cope with these Symptoms...... Has anybody got any tips or suggestions of what has worked for them, however random or stange, all information would be greatly recieved.

Written by
TezzaMcCann profile image
TezzaMcCann
To view profiles and participate in discussions please or .
7 Replies
Jeffery profile image
Jeffery

Hi Tezza, I had Bacterial Men. two years ago and I have some of the same symptoms as you as well as deafness in the rt. ear, which is permanent. I have vestibular imbalance in both inner ears. This causes a visual/balance disturbance that has improved significantly over the 2 years. I find playing Mah-jong on the computer helped a lot with getting my eyes to track better. If I am tired my balance gets worse so I try to rest when I'm tired. Alcohol is pretty much done as it interferes with my meds. I get headaches so I limit caffeine and take 2 tylenol if it gets too bad. I am really watching what I eat as I am not as active as I was. I hope this helps you but time is a great healer. You either improve or you adjust. I have done a bit of both. Kind Regards, Jeffery

Canada3 profile image
Canada3

Hi Tezza, oh how I do sympathise with you, sadly as Jeffery has just replied, its a lot of adjustment ahead most probably. I cannot tolerate alcohol really, and dont take any meds either apart from paracetomol or NSAIDS. I did take anti nausea meds for about 6 months and also had treatment for dizziness for a long while so alcohol was completely out. Noise has always been an issue for me (I am 3.5years down the road of VM) and still is, I carry earplugs (and know ALL about varieties) as I am unable to tolerate noise especially cinema or noisy restaurants. Sitting at a computer for long periods was a really big problem for at least a year for me and I still dont spend hours at it. I am afraid that memory loss and fatigue are all part of the pattern too, and yes, you do have to make lots of adjustments. Having said all of that, it does improve and you must take your time, everyone is different and I hope your recovery is much quicker, but the brain is injured and it takes lots of time to recover, unlike a broken leg for instance. I found that if I didnt heed my fatigue and slept when I needed to, in other words, pushed the envelope. which I am fond of... I felt much much worse and it took me much longer to recover. So I learned, it was hard, but you have to listen to your own body I guess. The meningitis triust were wonderful so please get in touch, they really do understand and I had some counselling which helped me to come to terms with "the new me"... acceptance, I had to learn! If you look at their newly executed survey you will see that the majority of folk recovering from VM have those long term side effects that you mention. You are not alone and everyone here really understands the torment you are having trying to keep positive, we have been there too. Take care of yourself and good luck to you

Vespalover profile image
Vespalover

I had VM May 2012. Same after effects. Light averse (computer screen brightness dialed down), can't track fast moving objects (played Bingo for the first tme and had a relapse headache the next day), fatigue if watching an action movie or at a party. Intolerance for alchohol.

Light.

I found that light sensitivity was in correlation with stress. It got worse if I was doing too much. I would go to my computer and see what I would put my brightness at and that would often tell me how I am doing.

Tracking and concertration.

I went to a Neurochiroparctor. Did 2 hours of tracking tests following a static and moving cursor on a computer screen. Found that I track significantly badly when cursor moves up and down versus left and right. So scrolling on a computer screen is particularly bad. I go back today for exercises to improve tracking (and yes...I had a headache a after the tests).

Alchohol.

Used to drink Guiness. Loved it. 2 pints was my usual but now can not tolerate beer for some reason. Started drinking small amounts of wine. Now up to a glass of wine. Danger is though, getting dehydrated which was an awful symptom of meningitus. So I have a huge glass of water paired with my glass of wine.

I recommend sleep. Up untill 9 months after I was having 30 min - 2 hour naps everyday and that really helped with the fatigue. I realised I was fatigued because my brain was tracking and processing even if I was just sitting and reading or watching TV. The brain needs rest from it like the broken leg example above. The only way is to switch it off through sleep. I always knew if my brain needed rest as I would get this feeling of pressure. Like the feeling you get if someone talks about a very heavy or emotional subject...your head feels like it wants to burst and you don't want to listen anymore and want to shut them down....that is how it sign before the headache comes. Listen and recognise your signs. Be kind to yourself and do not over do it.

Ana

SilverCharm profile image
SilverCharm

These posts are very helpful. I am @ 2 months removed froma two week stay for aseptic meningitis. Still have some headaches, but thankfully, they have really backed off. None yet today.

What made me post is I have hit my head TWICE, really hard on things in my house for no reason. Once required 4 stitches and I bled everywhere and scared my 7 year old half to death. I was only 1 week removed from hospital. The second time was three days ago.

Does anyone else have some spatial difficulties.

TezzaMcCann profile image
TezzaMcCann

thank you everyone for your help...... all fantastic information, been able to define some of the symptoms i have been having but couldnt explain though reading about yours...... i am Two days in to no cafine or Carbs (so naturally i want coffee and a sandwich lol) i let you know if this has an affect at all...... im off for full day of tests on thursday so lets hope there are some answers. and i do love a nap.... thanks again XX

siobahn profile image
siobahn

Hi I had VM in sept 09, all the symptoms u described down to a t. My biggest help was deep breathing though this was no poss first year1/2. Pranayama, breathing yoga, but only when you feel ready, u will no as head won't allow, if u no what I mean.

It's a long road but with support u will get there. Do not put pressure on yourself it will only slow your progress, slowly but surely, I would at times get so frustrated with feeling so poorly I did myself no favours. B kind to yourself, b kind to your brain for its trying to heal. Take care x

Tiga profile image
Tiga

Vic on your forehead can help, thou watch your eyes, or ice sticks form £1 shop, also B6 and Vit c, will help with your body

write a dairy (journey) on how you feel, see if there are any triggers to how you feel sad or angry or happy. this way you are taking control.

You may also like...

Has any sufferers of VM had any success from seeing a neurologist?

Any spouses out there trying to understand/help your SO deal with VM?

(grandkids) he rushes off to bedroom to escape. I try really hard to be sympathetic but it’s so...

Tingling and numbness post VM

all reflexes which seemed to react normally. I'm really quite worried, and just wondered if anyone...

VM - when will “normal” return?

emerge after a lumbar puncture…. That was end of August ‘23 & it’s now January ‘24. Does anyone...

VM PERSONAL RECOVERY MARKERS

negative experiences in the medical field which really didn't help and took an awful lot of my...