Bacterial Meningitis post 2 years and After effects causing me concern,, Advice Please ??

[iaveadream22]

Hello all.

I have been unfortunate to have Bacterial Meningitis 4 times in my life time 3 cases when around 17, 18 and 19 yrs and after tests it was found i have a immunity issue . I will always remember the pain I experienced and how ill I was, however i recovered. I then for 30 yrs took penecillin V 200 ml twice daily at drs recommendation .

Sadly just under 2 years ago I came down very ill with Bacterial meningitis again and was hospitalised and dipping in and out of coma state, and i remember all the symptoms , however I survived which im grateful.

Sadly the last attack was when i was 50 yrs old 2 yrs ago and this experience has effected me more then ever , eg Balanace issues , Memory Loss, hearing issues, and regular periodical head aches. The reason I have written this thread over the past few weeks I have noticed my balance is even worse and at times i look like a drunk due to stumblings or cant walk straight which is now a daily occurance . . Its so embarrashing and when people enquire I just say its the after effects of meningitis , , whats else can I say ....

The head aches are periodical and can be described as residual Head aches and both back and the front and leaves me feeling Tired, I work part time at the moment 3 days a week having reduced my hours after the illness. I guess this helps as i dont feel so preasurised .........

The memory loss is again embarrashing and upsetting also as i often feel inadequate when i can not recall simple informations , eg , the fruit Im holding in my hand eg Orange ,, then a short time later it will come to me . also peoples names in work which makes me feel stupid .

I Guess I have to continue accepting things could of been alot worse and im grateful for this , however its increasingly worrying having to deal with these issues. The after effects of meningitis can be hidden , but are significant due to damage very often to the brain. etc

I would welcome any replies and its getting me down ....

Thanks

[Jeffery]

I have similar issues and am also 2 years post bacterial Meningitis. I am totally deaf in the right ear and have vestibular imbalance to both ears. I call it the captain jack Sparrow walk. I too am rather down about the futility of physio and having to resolve myself to these issues. My ENT reminds me that it could be much worse so I try to focus on projects that I can accomplish to stop feeling sorry for myself and go forward. I am a 58 year old with 7 grandchildren whom I absolutely love. I have a husband who still loves me no matter what! Count your blessings. God Bless! Jeffery

[Lemie]

I got VM in March 2012. I still suffer from headaches and speech problems, I am in bed at the moment with all over body pain. It really does get you down, but like my son keeps on telling me just take it one day at a time. GP do not really understand the after effects, you just have to muddle through!!!! I am thinking about asking my GP to refer me too a speech therapist . Good luck with your recovery

[daffodil]

So sorry to hear of your suffering,but glad you can share with us,as we all understand what you are going through.I had bacterial meningitis exactly 5 years ago -10th JAN 2008 was when I was taken ill.

I have written a few blogs on memory loss and vestibular dysfunction after Meningitis,so hope they help.I suffer from vestibular dysfunction -use crutches and wheelchair,chronic migraines and visual distortion( eg wall and ground moving,tilting,bending,fluorescent colours),short and some long term memory loss.Although I have had ears tested twice,my hearing is normal although I definiteyt dont hear as well as pre Meningitis.

I totally understand your frustration and embarrassment.Re the dizziness/balance issues -do you use crutches,stick?I can only walk a very short distance on crutches,but they do really help in the house,as I feel more connected to the ground.I have very little feeling in my feet ,so often I dont feel them hitting the ground,so without the crutches I couldnt stand up at all.At least when you have crutches,walker,stick people will realise you have a reason for using?

I had vestibular rehab physio for over a year and had to stop as my migraines were so bad and the exercises made me vomit.I have what is termed" acute vestibular dysfunction",which just means my inner ears,cerebellum,muscles and eyes are not callibrated and working together.If it is only an inner ear problem the vrt exercises should work and the dizziness /balance issues should disappear.As they have not done so,I have been discharged from neuro otologist and am now seeing a neurologist for Migraine associated vertigo-look up MAV online-This is basically a trial of different migraine drugs and anti eplieptics.So far my migraines are much better but no change in vertigo and I reacted so badly to 2 of the tablets- topomax and epilim that I only tolerated them for 3 week trials.Mav is a very new diagnosis but doctors are realising that headaches can also affect balance and vision and that they are interconnected.You can even have MAV without actual migraines.It may be worth asking for a referral to neurologist?

My headcahes have been very much helped by taking preventative migraine drugs and I only suffer a full on attack 2-3 a month ,rather than daily.I do still have a background headche and the feeling that my brain reacts to lots of things - noise,temperature changes,wind,glare from snow,sun.I find wearing sunglasses if bright and also wearing them on computer helps.

The memory problems are very frustrating and mean I have great difficulty remembering short term.I have just read your blog,but have had to take notes to reply and I would have forgotten in space of seconds what you had written!Do look at my blog and there are many great websites with tips on memory loss.I also have been doing a brain training course online which has definitely helped me,but you need t do as often as possible and I had a big break from daily practice and my brain score has plummeted,so much so that I cant remember what it is called,though its on my memory problems blog!! Re names and finding the right words,I often have a total block,forgetting my kids names,friend etc or just not being able to find the right word,so my sentence grinds to a halt.....

The problem with meningitis is that unless you are very seriously affected,and I thank God I survived and do not have severe after effects like loss of limbs,sight,hearing,Doctors just say you are cured or in my case it would take a very long time to feel well again and you are discharged.Thankflly I have a bvery supportive Gp so she referred me for further tests re balance and headches.Ihave also mentioned my memory and she said to come and she would do csome tests,but I have not done so as Iam frightened of being told I have memory damage.I do know that the cerebellum(the part my brain which is damaged re balance is also where soem short term memory processing is done).Howver I have no real overview of my current state of health,so it makes applying for DLA difficult,as doctors dont seem to want to admit the damage was through Meningitis.I also have ME/cfs and other chronic health problems,so everything has been b;amed on them!

On the bright side,we have been blessed to survive and we can all support each other.The Menigitis Trust services are a lifeline to many of us and I think this forum has been a real plus ffor many of us.Sometimes ,just knowing that others understand is enough to get us through the pain and suffering.It is just a shame that the medical profession dont seem to understand the need for after care if our after effects are hidden.

Oh- your immunity problem - have you ever consulted a herbalist or homeopath?I am seeing a herbalist at moment.She reckons that my whole life of ill heath is due to too many antibiotics for tonsilitis,ear,chest,sinus infections.Antiobiotics ,though they have saved those of us who had BMyour gut lining,lead to a leaky gut,so you develpo allergies and digestive problems( most of our immune system is in the small intestine and bowel ie probiotics).So if you are prone to infections the first thing you should do is take probiotics to replenish the good bacteria.I have one for small intestine and the normal acidiphilus for colon.Also high dose vitamin C ( 1GRAM a day0,vitamin B complex,vitamin d ,in addition to a low dose multi vitamin and mineral.I also take an anti oxidant which helps with immunity.Happy to give you details if you want to try.

Try to keep your spirits up-we are all here to help.

[Peeyushk in reply to daffodil]

Its true herbal and ayurvedic meds help a lot tilo increase immunity. But u shuld hav a smart and experienced doc. for that.

[tantanmics]

I had bacterial meningitis 5years ago and still suffer with all the affects you have mentioned above. I wish I could tell you it gets better but 5years on and I am still on chronic medication because I am unable to function without them, I truly hope it will be different for you

[Dene]

iaveadream22

My Mrs is exactly the same

Balance problems. Severe memory problems. Mobility Problems.irratable angry

Hands problems holding/using things. problems understanding simple commands

severe fatigue tiredness. she can sleep anytime.

just trying to follow a tv programme is a big problem trying to follow / undestanding it makes here worse

concentration she has non

reading a news paper is a no no she cant do it. she cant do her meds the routine/times she just cant follow it

neuropathy nerve problems. she's had a carpel tunnel op to try and help her hand its not worked

a nerve test has shown this.her whole arms shoulders her back the back of the neck are affected with nerve probs.

she has no felling in her hands fingers. severe muscle wastage.bladder problems.

she repeats many things.she asks for her meds all the time even 10 mins after taking them shes forgot etc

Deafness where hoping to get that looked at asap she cant hear you on the mobile phone if shes out with her sisters and i ring her

the tv she has it turned up loud you can hear it down the street

it all impacts on her 24hrs a day and lots of this has got worse rather than better in the last 2 years since she had BM

shes 50 she still finds many day to day thing very hard or impossible

GP / Neuro consultant say many probs stem from frontal lobe brain damage MRI's have shown

have you had MRI's ? get Gp to refer you if not

i know attending many of the wifes visits to physio re-hab psychological tests etc etc

doing daily tasks like shopping trying to do her meds etc have been diagonised as not helping her condition so she dont try and do it any more

even doing re-hab work with picture cards name remembering etc have had to be stopped it all made her worse

i dont know what your work is but that might be making you worse ?

Good Luck

[Peeyushk in reply to Dene]

My dad ia going through all the above and he is not able to sit also. I beleive floriquinoles like levoflox, ciprox does a lot of damage rather than a benefit. It depends on case to case though.