In need of answers for viral meningitis and the recovery

Its been 8 days since my daughter who's 16 came out of hospital after contracting VM. It's been approximately 3 weeks since she experienced the first headache.

To be honest i feel really guilty because it was 5 days with persistent headache and continual vomiting before taking her to A and E where she promptly collapsed and convulsed on the floor of the see and treat area. Don't get me wrong i took her to the Dr's 4 days out of the 5 saying that this wasn't her normal migrainal pathway. I wish that the Dr's were not so preoccupied with stiff necks and septicemia rashes when looking for evidence of meningitis. My daughters aversion to lights and sound as well as the stiff neck come on the 6th day. This was the day that she was discharged with VM with the dr's saying that the symptoms can be managed at home. No chance the VM had different ideas, the vomiting and crushing headaches started again during the night and an ambulance was called. She spent the next 10 days in hospital experiencing convulsions that were not seizures, vertigo, temporary visual disburbances including loss of sight, partial paralysis and slurred speech. Her cognitive functioning, although humorous when replying to the the question where am i touching you? 'in my happy place' ( her arms), was not so humorous when the neurologist said my daughter was fine apart from the mental aspect, her words not mine.

At this point i do apologise if this blog comes across as angry, i am frustrated more. While she was in hospital i lost my dad to cancer, and i became ill myself with a kidney infection. Life cant get more miserable for us at the moment.

Anyway after 10 days she was discharged on anti sickness and a cocktail of painkillers. It now the 8th day she has been discharged and in that time the headache has lessened and the vomiting stopped. Until today when she vomited again, i am at a loss she has lost a vital stone in weight she she could not afford to lose - is recurrent vomiting something i should expect?. The headache reappeared but has subsided. I am so scared she is going to relapse although somewhere inside me tells me its not possible. She is still shaky and her speech goes between slurred and rapid non stop talking - is this normal? I have no idea what to expect during the recovery period apart from headaches, lethargy and sleep. Some days is better then others. She is so wanting to pick up her life and attend 6th form again.

It would be lovely to get some answers to my questions on what to expect post VM.

Thanks for reading this

Melinda

13 Replies

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  • Hi Melinda

    As I've been told a few times now, we're all different, so I can only really highlight my own experiences to see if anything overlaps with those of your daughter. Hopefully, thing will settle down in time - but I know that's a bit open-ended.

    I had VM in November last year. It was initially diagnosed (over the phone!!) by my GP as migraine. To be fair, that could have been because only a couple of months earlier, I had been diagnosed with migraine, following a misdiagnosis of epilepsy without seizures!!

    I couldn't just accept my doctor's decision, as the migraine meds prescribed did nothing. A couple of hours later, I rang NHS Direct, who arranged for me to attend an out of hours clinic. Once there and with a rising temperature, I was immediately taken to A&E at the nearest hospital, where I was initially monitored and then admitted. Once blood tests indicated some form of meningitis, I was given intravenous drugs - morphine for the pain and others to combat both viral and bacterial forms. I then had a lumbar puncture (which was excruciating and took 2 doctors 45 mins to perform). That gave a positive diagnosis of VM and I was transferred to the isolation ward of another hospital. The antibacterial drugs were stopped.

    I was in hospital around 10 days altogether. During that time, I had very severe headaches and a real aversion to light. My neck was stiff but thankfully, I didn't vomit once. My consultant eventually reassured me that I would get better. However, he said that I had suffered a particularly severe strain of the virus and could expect to be very unwell for quite some time. He was in fact, quite shocked when during an outpatient visit in late February this year, I told him that I had returned to work just after Christmas. He had expected me to be still off work, at the time of my appointment.

    My headaches gradually subsided to a point where they weren't a problem any more. That probably took another month or so. However, I do now seem to have more or less constant tinnitus and my left ear is certainly not as good as my right - not a problem before the illness. My GP referred me for a hearing test, where the audiologist confirmed what I had been experiencing. She said that it is likely that a blood vessel to my ear was probably affected during the illness, when my brain had swelled. She couldn't say whether it would get better - it hasn't yet!!

    Another thing I have found is that my core temperature, always previously around 37, now hovers between 34.5 and 35.5 - technically mild hypothermia. My GP was initially concerned when, as the illness subsided, my temperature didn't level out on reaching 37. He had me monitor it for a couple of weeks but essentially lost interest when it did level out at it's current level and didn't continue to nosedive. He says that my pituitary gland or hypothalamus may have been affected, as they regulate temperature. However, since it has levelled out, albeit very low, he's not unduly concerned - unlike myself.

    Unfortunately, over the last month or so, I have found that I'm quite irritable, dizzy, anxious about loud sudden noises and tired, along with an inability to concentrate to the level I could before. Very unlike me, I nod off most evenings while sat. I have also experienced severe headaches (with accompanying stiff neck and light sensitivity) on a couple of occasions in the last 3 weeks or so. Had my wife not been around to calm me down and have me wait a while (when it disappeared) I would have been off to the hospital, certain that it had come back!! I have been told that once eradicated by the body, the virus doesn't re-emerge. Once it's gone, it's gone. That said, it can be contracted a second time, just as easily as anyone else might get it. It's important to know though, that having had it once, doesn't make you more likely to get it again - there isn't an increased risk.

    The Meningitis Trust helpline are very good. They have been quite reassuring but, since we're all different, unable to tell me with any certainty that these problems will go eventually.

    I suppose we just have to wait and see!

    Take care

    Trevor

  • Hi Melinda

    I’m so sorry to hear that your daughter contracted this awful illness and the problems that you have suffered yourself. It must be so frustrating for your daughter being so young and wanting to return to her normal self and activities as soon as possible.

    Like Trevor has mentioned we are all different and do tend to recover at different rates dependent upon how severely we were affected and how quickly treatment was administered.

    It was January 2011 for me when I had V M and had the typical signs of a very bad dose of the flu until things changed very quickly for me. I woke one night to find myself paralysed on my left side and was already suffering from severe headaches the like I have never experienced before in my life. I thought immediately a stroke, but had none of the other typical signs. It wasn’t until the early evening the following day that I contacted my brother having collapsed a couple of times he came to see me and off to A & E I went. Then it was the usual things as you know by now endless blood samples, lumbar puncture and pain relief. To cut a long story short after treatment with anti-viral drugs I was discharged after a week.

    I was left to soldier on by myself no follow up appointments and no information about recovery or after effects. I did not suffer from any vomiting but must admit I had my very own share of what your daughter has suffered from. I’ve never taken so many painkillers in my life which didn’t seem to be doing anything for me, such pain it felt as though someone was sawing through my head very slowly, memory problems, emotional problems so many mood swings I couldn’t keep up with the direction they were taking me so many ups but mainly downs, concentration was shot to pieces, so physically weak, extreme fatigue and my speech was to be honest absolute garbage being absolute nonsense at times.

    These are the things I experienced that I can remember and I’ve probably forgotten others. It may seem to be very difficult for your daughter and family at the moment but let me assure that they do take a little time to sort themselves out. It took me until March 2011 before returning to work then only part time then full time in June. The headaches do relent; my memory has returned to about normal, my speech is much improved and almost normal now to be honest. Emotionally no more despair and my whole outlook on life have changed for the better.

    It does take time I’m afraid there will be good days and bad but concentrate on the good and believe me the good ones will wipe away the bad ones. We are all in this together and know what it’s like to go through it. I found it useful to read all the blogs on the site and try to understand what other people have gone through and relate that to what was happening to me and don’t forget the helpline they are there to help. The after effects do go but it’s gradual and it’s by sharing our experiences we all learn and cope until we recover.

    I hope this will in some way help and wish your daughter a speedy recovery.

    Graeme

    Gra661

  • Dear Trevor and Graeme,

    Thank you so much for your replies, they have given me hope. Like you both say its recovery is individualistic as is the illness. My daughter was given antibiotics which were stopped once V M was confirmed. She had a plethora of painkillers and anti sickness,tablets, and was put on a drip more times than i care to remember, once they found veins because they had withdrawn or collapsed.

    The good thing is that she is out of hospital and not in any imminent danger of it returning. Thank you for that reassurance. I now understand that she is now experiencing the after effects which is a blessed relief because i was panicking somewhat.

    Fatigue is a big issue at the moment... Missy woke up this morning saying that she felt 'normal' had her breakfast and the accompanying anti sickness and then promptly fell asleep for a few hours. We are a little dependent on the anti sickness because of the reemergence of the vomiting yesterday. The clarity of her speech depends on whether she has people around her. I likened the rate of speech flow between a 33 - 75 record speed. Her mood swings are not so bad as they were. In hospital it was absolutely awful i felt as though i was a really bad mother most of the time and spent most of my time reading my book or on the bed holding her as she felt she was going to fall off the bed. Thankfully this has stopped. Cognitively she doesn't appear to be developmentally delayed any more but i know that this can change depending on any one day.

    Once again thank you both for sharing your stories it has made me feel more reassured.

    Kind Regards

    Melinda

  • Hello. Sorry to hear of you and your daughters dreadful time.

    I am 18mths, post meningitis; I am also alot older at 52 and I am mother too.

    I have struggled with my speech, memory and up and down weepy days. Part of the course.

    I must say the hospital letting you daughter home, so quickly and without follow up, is really not acceptablel, I was a Hospital ward sister,peadiatrics before i retired due ill health.I also had drastic weight loss; however, I saw a nutritionalist, she got me High caloried and high Protien drinks, called PRO-CAL. Insist your GP or Hospital take action, regarding weight loss and poor appetite. Lots of luck and, just take each day as it comes, do not beat yourself up, your daughter, like all of us,we were all unfortunate. This too will pass in time.

  • thank god she has a mom like you, it will take time but you will get threw it!!!!!!!!!! mood swings will be normal, just take each day as it comes, and one day it will be the past x

  • Hey Melinda,

    I had VM in April. Was in hospital for 8 days. Released with coctail of pain meds. Same experience as your daughter. I am just now gettig back to normal at 6 months.

    A great friend of mine was a head injuries nurse and she told me it will take 6 - 12 months to get over it (not 2 weeks like the Doc's!).

    I vomitted a lot and could only eat my favorite foods for a while. I also vomitted with one particular medication so I had an anti vom med to counteract it. Got off that painkiller and all OK now vo wise.

    On a day I feel good I have to try and not do too much because when you do, you then have 2 days in bed with the VM headache again. trouble is you don't know what is too much till you have done it!

    If I have too much stimulation like friends over or a difficult conversaton, it feels like I have just run a marathon as it seems that emotional strain is as bad as physical strain. Though at 6 months I am OK now on that score.

    I found my core temp dropped just like the 'trevjohnny' and I have to wear a wolly hat to sleep in......not very attractive but I am snug!

    Remember she is trying to fight off a virus so she has to have plenty of rest and good nutrition just like you would when getting over the flu, although this is way more serious.

    She needs to drink plenty of fluids as you do when fighting off viruses as her body has a lit of toxins to get ride of.

    Good luck and don't rush.

  • So sorry to hear of your daughters struggle with VM and being discharged so quickly was a disgrace! I am 11 months post VM and was also wrongly diagnosed by more than 1 GP only to take myself to A&E on day 3 when I was vomiting non stop and with a temp of 40 degrees I also had the rash on my legs,stiff neck and aversion to lights. I was severely dehydrated and in a very bad state when they admitted me. I was diagnosed after a lumbar puncture and put on IV morphine ,anti virals and antibiotics as it took them almost a week to rule out bacterial. At only 8 days after being discharged your daughter still has some way to go before she is back on her feet. Take it very slowly my GP told me it is different for everyone but some people expect to be unwell for up to a year after VM depending on the severity and it sounds like your daughters was very serious. Did she have an MRI and CT scan? Has she been seen my a neurologist since she was discharged? I did have daily headaches for months afterwards and I still suffer with the imbalance and vertigo feeling and many other symptoms but I have seen a neurologist and various other specialists this year (which is ongoing) and they put my mind at rest. If you feel like your daughter should see someone then go to your GP and ask and if they won't refer you see another GP. What I have learned is a lot of doctors have no idea how VM really affects people afterwards and that some people need ongoing care and treatment. I am lucky my GP suffered with it herself so she is very helpful. I did find that some of the medication made me vomit more when I was really sick I think it was oramorph so I don't know if your daughter is taking that. Lots of sleep is good it will help to heal the body and also try not to do too much when she does feel better as that was my mistake which just puts you back in bed for a few days. Also mood swings are normal. Coming off all the medication causes mood swings as well as the recovery from VM.

    The thing I have found most helpful is the huge amount of vitamins my doctor put me on since I came out of hospital here is the list. Some of them are pricey but they work. It's important to have good quality vitamins I am not a doctor just a patient but if you ask about this list of vitamins in any good health food/vitamin shop they will probably advise you to get them. You don't have to get these brands they are just the ones I use.

    Solgar Vitamin C Esther 1000mg (twice a day)

    Biocare Vitamin B complex (Twice a day)

    Solgar Magnesium (helps headches and stiff neck among other things) (1 twice a day)

    Dr Udo's super high potency pro biotics (very important to repair the gut after medication like morphine and repairs the immune system) (1 twice a day)

    A womans multi vitamin (I use Natures plus) (usually 1 a day)

    Solgar Flax seed oil capsules (Helps repair the gut and other things) (usually 2 in the morning)

    There are other immune boosting things like Elderberry extract which I found quite helpful it's meant to kill the virus in your system so it might be worth trying and it's not a drug it's natural. My heart goes out to you. I am a mother of two little girls and I would have been distraught had it been them and not me in the hospital.

    Good luck with the recovery

    Hannah x

  • Thank you all for replying to my posts. My daughter is trying to run before she can walk but her body then gives up and she sleeps for hours and hours. Her speech is still unpredictable and we have narrowed her memory loss to about 6 weeks before her illness. Vertigo and balance is ok at the mo, but i am very aware that these can be just round the corner.

    The trouble is 16 yr old girls just want to be on the go. It really doesn't help that its her birthday in 4 days and shes determined to go to the cinema with her friends regardless of the after effects. I have taken something from all your posts and you all have been so helpful.

    Thank you Hannah for your list of vitamins i will be going to the Drs later asking for these. We need to get some build up drinks because of the weight loss. Bless her she has had alopecia since she was 3 and never wore a wig. That is until she was 16, she then decided that she wanted wigs to play around with her appearance. Her favourite is a long blonde one which was custom made to fit her head, unfortunately due to the weight loss the wig no longer fits. As you can imagine she is trying everything to put weight back on!!

    My main worry is her temperature control. Its been quite chilly outside yet she is saying that she is overheated, although in doors where its around 18.5 degrees she claiming to be cold. Has anyone else had this phenomena?

    Bless you all

    Melinda

  • Hi Melinda

    I have found my temperature has been up and down but I put it down to medication that I have been on. I am usually a cold person and have been feeling very overheated recently (not that I'm complaining in this weather) if your daughters body is still fighting the virus that could make her temperature go up and down. Your GP probably won't prescribe any of those vitamins (although you could ask) most NHS GPs don't even mention vitamins in the recovery but you can buy then all online at amazon or at a good health food shop. I forgot to mention Elderberry extract is an amazing immune booster and has also been proven to kill virus' I swear by it and give it to both my daughters in this cold weather. A good quality one without added sugar is best I use Lewtress Elderberry extract.

    Best of luck Hannah X

  • Hi All,

    It has been two days since I was discharged from hospital post VM.

    This is my second episode of VM in under a year.

    I was in hosptial for two weeks, and while in there I was on anti viral drugs and pain relief.

    As a result of the two bouts, I have speach problems and left sided weakness which may not resolve itself.

    I have now been diagnosed with Mollarets meningtis, which is, I've been told a rare form of the condition.

    I feel scared and unsure of where this condition will take me next, but I'm here, I'm alive and as healthy as I can expect to be.

    Sharon P

  • Hi Melinda.

    I read with great interest your message and have total understanding and sympathy of what you and other sufferers have and are going through.

    As with other comments, we all have different strains of viral meningitis and differ in symptoms and after effects. What has become apparent to me since my own experience is there are definite similarities.

    I wanted to share you my story along with those of others and hopefully this will help you in assisting in your daughters recovery.

    I was admitted to hospital in February 2012 with suspected meningitis. Turns out after having treatment for bacterial meningitis over 9 days the outcome was a severe bout of viral meningitis. The after effects have been very strong, ranging from bad head and neck spasms, blurred vision and a degredation in eyesight, lack of concentration and memory loss and severe fatigue amongst others. Prior to contracting meningitis I was very active at both work and socially (regular runner). I found that as time went on I had very very little energy, constantly out of breath and struggled to walk even the shortest of distances. This caused me to become depressed in myself. Knowing how active I was to becoming someone who struggled to get out of the door. I have had numerous discussions with my GP about this and although very sympathetic informed me to continue resting and that eventually I would get back to being myself again.

    Following a visit a few months ago from a medical consultant who went into great detail about my past, right back to leaving school, through my work history, right up to the point of contracting meningitis, he informed me in his belief, my body had had enough, was exhausted and unfortunately meningitis was the outcome. He continued to inform me that the after effects would heal, however, I would need to change my lifestyle considerably. A change in work being the strongest advice. He then proceeded to inform me that although the after effects of the meningitis was a very strong contributor to my lack of energy and tiredness, my mental state tied in with my physical state needed joining back together again. It is great to have the physical aspect back to normal but also he said you have to have the mental attitudes back to normal too.

    With this advice he recommended what is known as "Human Givens Therapy" Their website is hgi.org.uk. I have had a few sessions of this and although it doesn't help with recovering my memory issues, eyesight & neck pains it has helped me through deep relaxation techniques to overcome frustrations that occur.

    I have also recently been given a Gold Bond Status for the Meningitis Trust to run the London Marathon in 2013 for them. This is a massive honour for me to represent the charity that is very close to my heart and it also gives me a massive personal goal to aim for. Through setting my sights on such a big achievement, this has forced me into more exercise and although amazingly tough at times has increased my energy levels immensely.

    I still get bouts of severe tiredness but I have learnt when to rest and my fantastic family and friends have known when to let me rest!

    The most positive outcome for me since being diagnosed with meningitis is that I discovered the Meningitis Trust. I have a completely new outlook on life. One where I want and need to help people that have directly and indirectly suffered with this horrendous disease. They are truly incredible, amazing and supportive people. I have discovered not only what they have offered me but what they have offered and offer so many others. My recovery has been enhanced incredibly since my involvement with the Trust. I am an active volunteer and have recently been given the Volunteer Team Leader role for Warwickshire. The joy, the reward and the pride it gives me to represent the Trust I struggle to put into strong enough words.

    I still have severe short term memory issues along with the others I mentioned earlier. Only this week walking out of the kitchen and immediately forgetting what I was cooking. Just one example of an issue that hits me regularly. Very very frustrating but I am learning the steps to deal with it. However, my brain is more and more active and this is so important to keep developing alongside the body fatigue we experience. I really cannot thank enough the Trust for helping me and supporting me and having real faith in what I am trying to achieve.

    I can't say how long it will be before your daughter fully recovers but hopefully it will help that you and your daughter are not alone and that the after effects are known by others who can support you. I have not been able to go back to my previous employment yet and who knows when I will. I am however, focusing on what I love and what I want and need to do. That being supporting others through my work with the Meningitis Trust.

    I can be followed on Twitter @WarwickCastleDH where you or anyone else contact me and or direct mail me. The Meningitis Trust is at meningitis-trust.org

    Please take care, I hope your daughter is getting better and hopefully my comments will aid you and others around.

    Very best regards

    Dave

  • Dear Melinda1

    (Had VM 2 years ago, v ill, recovery long, poor treatment/advice from some professionals)

    I like to be succinct and not prosaic....

    -your daughter has suffered a brain trauma...( and that is the KEY piece of info that few professionals share.)... Her brain has been traumatised by a virus; swollen, hot etc and, consequently, will take time to get back to normal...which it will....everyone's recovery time is different. Is not BM but is a very serious illness.

    -she will recover, but may have post viral symptoms

    -she doesn't know how poorly she is, or has been, but you do....continue supporting and recognise it can take a long time to recover....she will think ok but find her energy levels/tolerance dropping quickly so be aware and on hand to help.

    -vitamins, water, rest/ sleep and good diet are essential

    - play memory games when possible and she is ready....really does help cognitive function

    -be aware noise and pitch will affect her, possibly for a very long time (tinnitus is an after effect, it does diminish greatly, but if stressed or too noisy will be less tolerable)

    -contact the meningitis trust ... They are an amazing support group

    - share VM info with her friends, colleagues, teachers, family etc as few people really understand how debilitating and serious this virus is for some people.

    - continue to be her advocate and challenge professionals, if necessary, to get her the right support

    -follow blogs and queries on this site - good info and advice shared

    I wish you and your daughter well. X

  • Hello All

    Its been a year since my daughter had viral meningitis, and i thought i would let you know how she and the family are getting on. It took a few months for her to recover, the headaches subsided before the vomiting. Once she stopped vomiting it took a while to regain her appetite but she did eventually put back on that vital stone she lost. Initially i was concerned with her temperature control, as she was always hot this took about 3 months to settle down and become less bothersome, not to her but i did not like my girl walking around in short skirts and t shirts in the middle of Jan (not the type of dress code for the cold English weather). There are a few things that still are not 100% but these are little annoyances rather than big troubles.

    She gave up sixth form and her A levels - biology, chemistry and psychology - we were expecting bad results as her memory was affected. She took this hard as she was an a grade student. The decision to quit was made after the government decided to change the curriculum yet again and demolish modular exams. One exam now taken at the end of the year, her memory isn't up to that. Therefore she decided to go into the police force by enrolling into a uniform services course at the local college. She has no problems as such with fatigue which is good as the course has a grueling fitness regime. Her speech still is rapid at times and she does talk continually, we have accepted this part of her and although sometimes a little annoying, it generally makes us laugh. My even tempered daughter who threw about 6 tantrums in her entire 16 yrs is finally back as well, although she does have the odd shout at her sister.

    All in all although we went through total rubbish with the VM we have come through it relatively unscathed.

    I do need to say that VM is not something that should be dismissed. Recently my other daughter had a severe headache and stiff neck , unable to move it completely, and photo-phobia, thanks to her sister i was able to be more assertive with the GP's and the hospital staff. She received antiviral and antibiotics for VM. the results from the lumbar puncture where normal but the drs have not dismissed VM although the GP has. She is better, the neck still sore and headaches mild after 10 days, however i think its a virus because i now have the same symptoms. My point is no one should be fobbed of with a diagnosis they are not happy with. I don't know whether Shan has VM but at least i did something about it unlike her sister who was fobbed off for days and then suffered immensely because of it.

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