Meningitis in adults

The story of our daughter Noortje.
Our daughter Noortje Nelemans moved into digs in September 2009. She had just spent her holidays together with her boy friend in Crete, Greece, in July.
They had had a wonderful time together. In September she continued her Social Studies at the AVANS College at Breda , the Netherlands.
She was a third-year student and had found a trainee post at a nursery for mentally handicapped children. She was responsible for 5 kids.
The nursery staff were very pleased with our daughter’s contribution.
She did very well and the kiddies loved her.
She turned out to be a very talented trainee. The right person in the right place, and socially fully aware and involved. Her future wish was, to find a suitable job, to buy a house and start a family together with her friend.
She gradually developed into an independent 21 year old lady.
Both on Christmas Day and Boxing Day she came home to have lunch together with her grandpa and her grandma. After New Year on the 2 January she came home and had dinner with us and stayed until 22:00 hrs. She complained of a slight earache. The next morning(Sunday) I rang her in the morning at 10.15 hrs. On the phone she told me that there was some blood that came out of her ear.
I was a bit worried and called the GP early in the afternoon. That particular day he was off duty and I was transferred to the GP Centre at the hospital. I spoke with a doctor’s assistant. She told me to give my daughter acetaminophen and nose drops. Her diagnosis was that her eardrum was damaged. That’s why some blood came out of her ear. A typical otitis media(inflammation of the middle ear)
We simply had to wait for 2 days. If her condition would not improve after these two days, she would have to be seen by a doctor.
Later in that very same Sunday evening our daughter rang us again and told us that her other ear was in the same horrible condition and that she had a terrible headache and a temperature of 38.8 degrees(Celsius). We transferred this once again to one of the assistants, and they gave us the same advice as early in the afternoon. Otitis media can occur in one or two ears.
On the following Monday our daughter still suffered severe headaches, although in the afternoon when my wife paid her a visit, she could still drink and eat and had even done some difficult homework. We, as parents, were not alarmed by her symptoms. My wife went back home by four o’clock in the afternoon. In the evening by 18.30 hrs we received a phone call from one of the other lodgers, telling us that it would be wiser to pick up my daughter and to put her in her own bed in our house, so she could be taken care of.
Then the other lodgers had not informed us of her terrible condition. Later we found out that she had vomited and had been delirious.
Once she arrived at our house she immediately went upstairs into her own familiar bed.
As she could still walk up the stairs and went straight to her bedroom, we did not get suspicious.
It may sound strange, but we still thought that she had a terrible flu together with an ear infection.
We put on her pyjamas, gave her something to drink and tucked her in, hoping she would feel better the next morning.
The next morning our 23 year old son found his sister dead in her bed.

We have such a huge sense guilt. Why didn’t we take her to the hospital on Sunday evening when both her ears were infected?
The provisional autopsy report says that she had developed a mastoid in her ear.
The final report will not come earlier than in June this year. We’ll have to await the results of the CT scan, the toxicological and neurological examinations.
We still believe that we could have rescued her, if we would have seen a doctor.
But doctor’s also have difficulties in making the correct diagnosis in these particular cases.
We think she died of meningitis or encephalitis, but we shall have to await the final report in order to know what bacterium, virus or infection struck her.
Why on earth did her merry, healthy, and warm life end so abruptly?
We shall never know.

Wil and Ans Nelemans
Vincent van Goghlaan 29
4907 PE Oosterhout
E-mail: wjnelemans@cs.com

My son has recently been diagnosed with Mollaret's Meningitis. This is a recurring meningitis and is very difficult to diagnose, as it presents itself each time as something else, like flu or chest infection, etc. Unfortunately, he has the rarest form of this rare disease, which leads to major fits and comas, after which he can be unconscious for several days. It has been mistaken for epliepsy but each time he has been tested and no epilepsy found. After four attacks over 10 years (starting at the age of 19), he was finally referred to a consultant, who immediately suspected Mollaret's Meningitis, and my son certainly meets all the criteria. Alarmingly, GPs and hospitals do not appear to be aware of this rare recurring condition and there is not a great deal of research or information available on the internet. Each attack is very distressing and the last attack led to him being diagnosed with meningo-encephalitis. Fortunately, he has made a full recovery each time and the information available suggests that the meningitis sometimes stops re-occuring after a number of years. Does anyone have any more information about this rare condition?

i had meningitis when i was five.. and have had problems ever since.. i am now 16 and i had the blood 1 ... the one you can lose linbs from and die .. my best friend died of it wen she was five.. please help support ppl like me and my friend to servive xxx

Hi
I am just recovering from bacterial meningitis at the age of 48. I have nothing but praise for the staff in A&E for their rapid assessment and treatment that I received. Although they did not confirm until I was admitted and had all the test that it was meningitis they acted very quickly in assesssing my symptoms and setting up the appropriate treatment. I can not thank them enough, as the doctors said I was very ill.I had no idea that it could have been meningitis when i went to bed with earache and avery bad headache. the symptoms developed very quickly but i thought it was a severe migrain. Although i didnt have a rash it was in my blood stream and because of the rapid treatment i have been very lucky. I like so many people I thought meningitis nly affected young children and students.

I would like to know what NHS follow up is usual (if any) when adults have meningitis. My partner developed hydrocephalus as a complication of meningistis & had a shunt to drain fluid from his brain. He sadly died 10 years later from cerebral odema.
He was very ill for the last year of his life & 9 months before he died was in hospital with meningitis-like symptoms but there was no referral to a neurologist.
Does anyone have experience of follow up (or lack of ) with shunts to correct hydrocephalus?

Hi Sheila,
Thank you for sharing your experience on this post, following your devastating loss.
MRF has a Telephone Befriending Network for anyone who has experienced meningitis and septicaemia. We are usually able to put you in touch with someone who has had a similar experience to your own.
If you would like to know more about befriending, please be in touch through our Freefone 24 hour helpline 080 8800 3344, or via the Befriender Network page on our website.

I totally agree with all that has been said my Son Andrew succummed to meningoccocal B meningitis in March 2008. He was a forensic science student at Sheffield Hallam University. Within 24 hours of the first symptoms we were turning off his life support machine. He was just 18 years old.I am a nurse myself and although we went to the GP surgery, we were told it was a viral infection and we went home and a few hours later Andrew collapsed. I called the Emergency Services they came very quickly and things were done quickly but it wasn't quick enough.It was a devastating loss for all and one we will never get over.

Hi I caught meningitis @ the age of 59 when on holiday I like others was amazed when Iwas told that I had meningococcal B type. my grandson had the disease afew years earlier @ 6 weeks old and I thought that it was a child's disease. I also had a cousin died of it when was18 months old in 1938. in my casemy neck was locked solid and my head hurt. the Dr. thought I had had a stroke.

Hi
My wife Barbara died aged 55 from Meningitis with Septicaemia just 2 days before Christmas 2007.
We both thought she had flu. She had no headache or rash. She died just 2 hours after being admitted to hospital some 36 hours after feeling unwell. This disease is so dangerous in that it can appear to be similar to flu and the speed that it can progress is awesome. With hindsight I now recognise that other symptoms she had at various points during her last hours where an indication of Meningitis and Septicaemia. These were a period of rapid breathing, rather dopey and very tired, a high temperature initially but cold on the second night and Diarrhea. Much later large bruise like marks appeared on her legs (not a rash though).
The shock of her death was immense. Both my children and I miss her.
It's such a dangerous disease and it is so important that people are aware of the possible symptoms. Keep on with your good work MRF.

David Hollobon

I had meningococcal septicaemia in Jan 2008 at age of 42 and had a horrifuc experince which left me with post traumatic stress.Despite dispalying almost every sign of the disease and being rushed to hospital by ambulance I was seen by one very young,nusupervised dr and told I had flu and would be much comfier at home!Despte my protests and worsening symptoms I was left alone and unmonitored for 3 hrs with no buzzer to call for attention.y hubbie had to drive me 25miles home and drag me to bed.My last memory was of desperately trying to phone my husband on mobile as he was sleeping downsatirs but not being able to see.I woke up 7 days laterinITU having been on life support.Thankfully I had fitted and fallen out of bed thius alerting my husband
He had had flu so it was assumed I had the same and I do wonder if Id not mentioned this if Id been observed and not sent home.

We could have sued as I have suffered loss of balance and cant even stand up so am on crutches and wheelchair but deciede to take to Scottish Public Servisce Ombudsman who fully upheld my complaints about hospital misdiagnosis and malpractice and have orded various changes wich will help every patient who passes through casualty and also healp alert medical staff as to the difficulties of diagnosis.

Everything above is so true, I had bacterial meninigitis 4 years ago aged 46. I had no rash, and had gone to bed with cold symptons and an earache and woke up a week later in intensive care. My life saved my husband who had found me collapsed and incoheherent. Thank goodness it happened at night when he was home, as probably his speed in calling the doctorswho then sped me to hospital 25 minutes away, saved my life. Lets remember the trauma and stress our families our put through whilst loved ones are fighting this frightening illness.

I was lucky enough to survive meningitis and septicaemia when I was 54 (5 years ago). The paramedics thought I was having a panic attack, the medical staff thought I was having a heart attack. It's so vital to be aware that this dreadful disease CAN affect older people. I feel there should be regular awareness campaigns for older people - I think most of us are, by now, aware of the signs of meningitis in young people and babies, but how many adults would tragically put their symptoms down to a bad case of flu??

I was not very aware of the after affects of meningitis. I had it last year and remember being so surprised when I was told what I had in hospital.I remember over hearing a conversation in High Dependency about another patient who would be having his leg amputated. I felt so terribly sad for him, not realising that could have happened to me. I always used tocheck the children if they had a rash when they were young but did not think it would happen to me!

Hi

My husband Jon died at the aged of 38 from Meningitis. He went to bed with tonsilitis and woke me at 4.30am being sick and falling over. I rang an ambulance and he was taken to hospital however they could do nothing and his life support machine was turned off at 9.38 am on 26th July 2006. I still cannot believe that a healthy adult could be struck down so quickly and die so suddenly. It was 2 weeks after our daughter's first birthday and the day after he died I found out I was pregnant with our 2nd daughter. He had everything to live for and not only did I lose a wonderful husband but my children will never know or remember their father. Whenever I tell someone what he died of they are so shocked as they expect this disease to only affect babies and students.

Hi Lesley, thanks for your post. It’s very true that whilst the age group most at risk from meningitis and septicaemia are babies, followed by teenagers, adults can also get the disease. There are twice as many cases of bacterial meningitis and septicaemia in people under the age of 25, as there are in the over 25s, and that’s why you tend to hear about it more in young people and children. However, although the disease is rarer in adults, when it does strike it tends to be more severe. We have run campaigns in the past highlighting the disease in adults, and we also produce specific adult protocols as well as child protocols for hospital doctors treating meningitis.

Paste this link into your browser for symptoms information:
http://www.meningitis.org/symptoms/young-people

It’s important to remember that a rash is usually only found in meningococcal disease. Other types of meningitis and septicaemia can occur without a rash, so the absence of a rash doesn’t rule out meningitis or septicaemia in a person with other symptoms above. The early symptoms can be difficult to distinguish from other illnesses like ‘flu, so tell someone if you’re feeling ill, or keep an eye on an ill friend or family member. Contact us if you would like copies of ‘Get It Sussed’ (aimed at teenagers and young adults), ‘Race Against Time’ or symptoms cards (both for all ages) that you can keep in your wallet.

 

I agree we need more awareness about the symptoms in adults. My 17 year old daughter is recovering from Meningococcal disease. We were lucky to have caught this eary but she still spent time in ICU on a ventilator but some of the symptoms she had I was totally unaware of.