Having experienced the trauma of meningitis just over three years ago and it's debilitating after effects and having closely followed the posts of people on this very valuable forum it seems quite clear that one of the major problems we are experiencing is the complete lack of knowledge and understanding in the medical profession of the after effects of meningitis. Whether it's a GP or neurologist very few of them have any real understanding of what is actually going on with us, what symptoms are attributable to the virus, how long the symptoms are likely to last and what if anything is going to help to improve things. The situation is exacerbated by nature of the fact that there is virtually no organised after care or support available. Patients are simply left to their own devices and told they will recover after a few weeks rest. Would it not be a good idea for all doctors and neurologists to submit their findings on each patient to a central register where information could be logged and collated. If this site recorded briefly what symptoms each person was suffering from, what medications, supplicants and lifestyle changes they made and what improvement etc this had over a 3/6 month period. If enough information was recorded and fed into a fairly simple computer programme a pattern would form showing some very useful information. Right now it's just a case of the medics making excuses, attributing everyone's symptoms to anything they can pluck out of the air including the old favourites such as 'migraines' or it's 'all in you head' and so on. The prescribing of medications is a very random affair including the overuse of antidepressants which rarely solve the problem, they just allow people to worry less about what is happening to them. If enough cases were recorded what action people took themselves, what drugs or medications they took and what progress or otherwise they had made within a given period could well assist those we rely upon to see a way forward for all of us.
Meningitis after effects, a possible way fo... - Meningitis Now
Meningitis after effects, a possible way forward.
There is research going on, either not well publicised or not a lot being done.
That said I survived in 1980, wasn't warned of any long term effects at all and never had a single follow up,
Yes!
Well said I am now coming up to 2 years post pneumococcal meningitis and I have been left to get on with life. I have took early retirement as I could not take being tired all the time. I also had some family problems to deal with to.
It would be great. As survivors, I believe we need to come together in our towns or cities ... gather other survivors and start there. I was just thinking about this last night.
I live in a very small town but I've heard of some people close-ish to me that had meningitis. I think just coming together in a form of a support group would benefit. Making yourself known in your area.... work at it until the local hospitals/doctors think of you when they see a meningitis patient and perhaps hand them a booklet of a support group.
I so agree with you in every way. I am 2 years post BM and the daily grind of living with the consequences are difficult to bear. I live with a continual fuzzy head, apart from sleeping, and have lost most of my hearing and balance. After being so active beforehand my life has changed enormously with little outside support. I know I am not alone and I keep reading the same sort of comments, which is both reassuring and despairing. If meningitis is such a serious infection with many people and their families suffering from it, why isn’t more done to support us all. Like most of my efforts to get better my wife and I have tried to leave no stone unturned but we have been doing it alone and not with the help of many of the health professionals we have turned to in order to find answers.
That’s my rant and I make no apologies for it. It’s very dispiriting. My best wishes to you all.
So sorry to hear you are still suffering these extremely unpleasant after effects as in fact so many of us are. I often wonder how the doctors and neurologists who are so dismissive of this would feel if they themselves were experiencing some of this! I imagine they wouldn't then be so dismissive and basically disinterested when we try to explain to them how it is affecting us and how we are trying to cope without any understanding, help or support. If this central national database were to be put into action they could at least refer to it when a patient explains how they feel instead of just staring blankly at us imagining we are inventing the symptoms and that we are just attention seekers. If enough information was stored on the site it would also give them an idea of exactly what patients have tried to alleviate their symptoms, what is useful and what is not. It would also allow them to see how long on average it is taking patients to make some form of acceptable recovery. Right now it's a case of telling patients to be patient and hoping that if they see them again in another 3/6 months they will have somehow miraculously recovered by themselves! Patients that don't make any significant improvement after this time are regarded as having psychological problems and in many cases are prescribed antidepressants. Absolutely appalling and outrageous in the 21st century.
I thoroughly agree Kalirachi. I am almost 3 years post VM and unable to return to work due to massive insomnia. Sometimes I don't sleep for 5 nights and 6 days. From day two I progressively lose my sense of balance, my sense of logic, feel nausea, dizziness, extreme tiredness, loss of strength, my short term memory goes, etc. When I have a good night's sleep I'm absolutely normal and have to go a hundred miles an hour to try to catch up on some essential housework or section maintenance. I unfortunately don't have a spouse to assist me so everything is getting on top of me. I need to have a boarder to help pay my bills as our social system here in New Zealand does not pay me enough to cover basic bills. The downside is that then I need to look after /feed/do washing etc for the boarder which I have difficulty in finding the energy for. I also have elderly parents[ aged 87 and 91 ] which I need to take care of at times.
Usually I have about 1 day or less per week when I feel normal, and otherwise I can be anywhere in the spectrum in between. There is no predictability, hence I can't be relied upon for anything. My immune system is shot. I am at the moment fighting a nasopharyngeal/throat/lung infection for the last 2 weeks.
However, most people don't even know that there is anything wrong with me as I appear normal in appearance.
It would be wonderful to know how others have beaten this. Hence research is absolutely necessary!!!
Great idea! We need a data base for meningitis care from diagnosis through life time after care. And it would need to be able to be accessed world wide. Can we do it? We need to figure out how!
Yes, I'm sure it can be done it just requires the will to do it. Meningitis Now is a tremendous resource but it cannot be expected to do this it's for the doctors and neurologists to get together and agree something urgently needs to be organised. They are the people who have immediate contact with patients and must themselves be sick and tired of hearing desperate patients complaining of a whole plethora of very similar symptoms on follow up visits for months and often years after the onset of this illness. I realised just how bad the problem is when after seeing numerous neurologists who just nodded in disbelief at my continuing very debilitating symptoms I got to see this countries leading expert in London who was equally disinterested and dismissive and could only suggest trying to carry on life as normal and again suggested antidepressants! In frustration I did ask him how many patients he'd seen who were still suffering from dizziness, migraines, disequilibrium etc after two years and what these patients did to cope with it and how many eventually recovered. This clearly irritated him and the consultation was brought to a polite abrupt end and that was that. It's clear to me that the medics need to acquire some humility and admit they don't have any answers and at the same time keep an open mind for anything that might help them and more importantly their patients.
On this theme one of the Royal Colleges (Psychiatrists) news release today demanding tech companies share data on how young people are using their products and calling for a tax to go towards the work on it. I think this is an example of those dealing with things trying to link up and looking at prevention and causes. Good news I hope. And maybe a model to consider about data sharing.
I agree there should be more information out there. I was discharged after being in intensive care and not even given an outpatient appointment or sick note! I am a nurse and a few days ago I was assisting in a procedure for which I found myself comforting the relative of the patient instead of the patient himself. This man was desperate .... emotionally mentally and physically. He had been in hospital a year previous with sepsis. I was amazed as he started to talk about his symptoms which are the same as we all describe. He is a single parent with two young kids 4 and 6. He was also looking after his long term ill father. He talked about all the 'stupid' things he does. I told him that morning I opened my car door, pushed the front seat forward and sat in the back seat before realising you need to be in the front seat to drive. We talked about questioning our own sanity at times. He talked about depression over xmas thinking back to the fact that he was an hour away from losing his arm and that he had experienced suicidal thoughts because he felt he didn't have the energy to keep up with his kids. He did say that his GP was brilliant. The main point I am trying to make here is that although it is great to come on here and talk and to offer and receive support, it is nothing compared to actually meeting someone in person who has been through the same experience. What a release and how great we both felt after talking. Just having that recognition in person of what you have been going through and seeing it in another. Maybe, for some of us it would be really beneficial to get connected with people who have had serious infections in your local area and meet up regularly for coffee and a chat. 🤗
You are quite right, the value of social contact particularly with others who have had a similar experience cannot be overemphasized. What I am suggesting though is something quite different. So many people on this site have mentioned how little doctors and neurologists know about the after effects of meningitis and many of them admit it. When we leave hospital there is virtually no support or after care available. The first contact most of us are likely to have is some sort of follow up appointment either with our GP or with a neurologist. It is exactly at this stage that in explaining any lingering symptoms or after effects we may have that we hit a brick wall. My own GP and the outpatients appointment with a neurologist confirmed this, neither of them had any answers as to why after 6 months I was still suffering from a whole plethora of debilitating symptoms, and furthermore both of them had the humility to admit it! I was told by both of them to 'just rest as much as possible' and things should start to improve. This is 6 months after being discharged from hospital and finding it hard to walk a few steps with constant dizziness, no balance, hearing and vision problems and many other very unpleasant symptoms. When I saw the neurologist after a further 3 months he admitted again he had no idea of what was happening to me and offered Amitriptyline. Both of these professionals were quite honest and admitted they'd had virtually no experience in dealing with the after effects of meningitis. My own experience and that of others illustrates quite clearly why we urgently need a national or even international data base for the medics to access where they could log and record the progress and recovery time with regard to a whole range of after effects and symptoms. The site could also record any medications, extra vitamins, supplements or any other measures patients undertook to assist their recovery and what effect it had. If enough information was stored a pattern would emerge and allow them to see average recovery times (or not) from a whole range of symptoms and what if anything assisted that recovery. This has to be an improvement on what we currently have which is simply go home and try to recover at home or take this prescription for antidepressants and book another appointment in 6 months time!
In a strange way, it’s almost reassuring to read your posts. I had my second attack of Meningitis in Sept 2018 (first attack was Viral in Oct 1994 from which I made a full recovery). But this time it was Bacterial and I was lucky to survive. But have been left deaf, wheelchair bound with impaired eyesight and incontinent. But the worst thing is neuropathic pain in my legs and body and swelling. These have been worsening and are now almost unbearable. I’m on medication, Pregabalin, Baclofen and a Butec patch but nothing eases the extreme discomfort. Hospital Pain specialists have recommended Paleo Diet, Supplements and Exercise. I’m already exercising as much as I can. Nobody seems to be able to do anything or suggest anything to ease my discomfort. As this was affecting my mood, antidepressants were prescribed but the effect was awful. Just felt drugged and absolutely spaced out. I’m in touch with Meningitis Now but they cannot help me. I have become desperate as GP and nobody seems to be able to assist. So it is reassuring to know I’m not alone.
How honest your writing is and so good to hear from someone working doing this every day, and who sees both sides. I think he, and they, were lucky to have you there caring for them and that you gave each other that moment to talk and open up and as people. It's healthy to think about and question your sanity without stigma or fear but it surprises me how difficult it is to talk about freely or without judgement. I realise we don't know the impact we have on others and what a crucial difference noticing and a smile or ear has.
Words like 'recognition' really jump out as it's at heart about being seen, heard and validated and that goes a long way. The meeting up regulary thing is so important - as you break through that initial awkardness and get to know people 
This just popped up in my feed so apologies for the delay.
There's some great clinicians, medicine and support but it's not known about or inaccessible when needed. And this knowledge is patchy across geography. As patients we know a lot and the good clinicians/professionals learn from us as we do from them. I think there's a role for some kind of mandated collection or resource that can collect or access the information. Properly! Sometimes this is just informal recognition by individuals in systems to link things together themselves, in addition to or as part of their existing roles. I'm not sure who would do this or who could be approached as it's so fragmented and responsibilities and accountability are a little blurry.
I've thought of this a lot and the amount of information and data sloshing around that's going nowhere. It could be so powerful and underpin great care. Before illness and in my professional role I tried to get some in some services such as the NHS to share information about death and injury, without extra 'burden' to clinicians, and to improve outcomes and to help resources and time to be spent more effectively. In prevention. We got an outright and even outraged 'no'. 'We're too busy' ironically, when this would help resource allocation and free up time. And a lot of ignorance and misunderstanding from people who are educated and experienced, and professionals in fields I believe should know better! It seems only some areas/projects/teams/private or chosen tech companies have rights to this data and delivery of 'service improvements'. When this is not transparent to even people within the NHS, or aligned professions, let alone patients or users, it's very frustrating.
Only a week back in a hospital appointment out of area I found out that some different inaccurate information had found itself onto the NHS 'spine' for my record and it was pure chance that the second receptionist present had recently had refresher training in the IT system, so was kind enough to actually listen to me when I asked why this keeps happening despite my many attempts to correct it and reminders of my up to date and accurate details. And that I'm fed up with results and letters going 'missing' and delays and the shrugged shoulders or the suggestions to write and complain again. To whom? Between us we identified (after nearly six years of trying to find out) that when some are accessing my details 'locally' they're not doing it properly, so it doesn't update the main NHS database 'spine', but noone knows, or seems to check, so therefore don't rectify this. And of course as a patient I have no/little ability to change or edit these, despite many attempts to do so. That's as simple as being trained to go in, update details and close the screen and then go back in to check.
As an example, the MHRA use the yellow card system to record meds effects and interactions and patients are encouraged to use it. One GP once said 'oh don't, I'll get into trouble for prescribing contra indicated X to you'. Illuminating!
I'm not sure how to go about this - but I love your idea and think it's got promise. The phrase 'personalised' is used a lot. This would be it, and to learn what's going well, or not, and apply this elsewhere. There are some things happening like this, but it's linking it to where it's needed that needs some focus, and some senior input to get this focus to convince enough others to get it done.
Many thanks for your response. This certaining raises and highlights some interesting and challenging issues, much food for thought.
Hi everyone, again. This site here is invaluable. Basically, I'm trying to solve this alone. A quick description of my case. The rest you can read above under my name.
VM almost 3 years ago. Still severe and chronic insomnia, and all it's subsequent conditions such as dizziness, motor unco-ordination, slow thinking, short term memory problems etc.
One of my problems is that here in New Plymouth, New Zealand, a town of 70,000, we have only one neurologist available for 1 day of 8 hours, per month. That Dr has to come up from Wellington approx 300 kms away, just for the day.
My lovely GP told me" Good luck on getting an appointment with him!" A huge waiting list, which I can't even get onto due to demand, and the fact that I am now in the low end of the urgency as I'm unable to work again yet. If you work , and especially if you're in the higher earning bracket, you get put further up the list.
Time makes no difference. Then, we have to pay something like NZ$200 for what can be a quarter hour appointment. Then, having a friend who did finally get an appointment with the neurologist, she never got a report , nor suggestions as to what to do about her MS. Her father drove down personally to Wellington a month later to collect it, to find out there was no evidence of any report or attended appointment. He then tried to arrange another appointment for her down at Wellington, to which he was told that they would not accept any patient from another District Health Board.
So. Its evident that we here in NZ have to "go it alone".
As a [now ]ex-lab tech and ex-teacher I've figured I still have some problem solving capabilities....
So far I figured that
1) my Pineal gland was affected by something at the time during the meningitis.. This was demonstrated by the fact that when I paid for a Melatonin Test post meningitis, it was shown to be extremely low at it's supposed peak at 1am+- 1 hr. Melatonin is the sleep hormone.
2) My cortisol level was extremely high at that time , when supposed to be low. Cortisol attacks melatonin. So I started taking an Adrenal support mix of herbs, later followed by a Melatonin supplement. You guys in USA,UK,the Netherlands and Australia are lucky that you can get melatonin over the counter. Here in backwater New Zealand we can only get it on prescription from a doctor, and then we have to pay for the 'controlled drug' through the nose[$250 per month at my prescribed level]. Most of us on the breadline don't have insurance, or that kind of money.
3) My hair mercury level [self paid test- DDI, or Doctor's Data Incorporated Lab,USA]]was high at the time. Mercury comes from tooth fillings, sewage,fossil fuels, large fish such as shark and tuna[those fish at the top end of the food chain] ,etc. When a body is subjected to fever[like as in meningitis], weight loss, or even menopause, mercury and other heavy metals are liberated from various places within the body. The body then has to reprocess this flood of very toxic elements. Mercury affects every body in different ways according to your genetics. Sometime it relodges in the brain, pancreas,liver,bones,and almost any organ. And it can affect their function. These heavy metals usually show their levels through excretion in the hair fibres.
4) Therefore, by extrapolation.....it's also very likely during this fever and weight loss from meningitis, other accumulated poisons[ such as pesticides] are also liberated from the fatty tissues, which the body also has to deal with. These can also affect the brain,liver,kidneys etc and in fact lodge in them impacting on their ability to function. Unfortunately that DDI test doesn't show pesticide levels.
So, I'm on the lookout for a pesticide test at present.
At present I'm on mostly organic foods. Vegetables are grown in my garden, eggs from my organically fed chickens, milk from the organic dairy 6 kms away, fruits fresh and frozen from my garden] , low mercury fish from our local coastal fishing boats. This is to avoid extra pesticides and heavy metals.
I try to increase my intake of cruciferous food[cabbage,broccoli, rocket, mustard greens,kale etc]
I try to eat more alliums[onions,GARLIC, leeks,spring onions etc]
I take 11 mg melatonin per night. 6mg is slow release, 5 mg is fast absorbed. Also with the slow release capsule is 50mg 5- HTP, and 10 mg Vitamin B6. This is a Natrol brand, bought in the USA.
I take a dose of Malcolm Harker's Adrenal support daily. Also I take some Malcolm Harker's Sleepwell nightly, and I assure you, I have no financial interest in the company!
I have only one coffee per day. This is in the morning.
I try to have at least a 20 minute walk per day.
I try limit my exposure to EMFs and WIFI [ it's programmed to be off from 11pm to 7 am.], and cell phones.
Cut right back on any alcohol.
So far, my sleep has improved.
When I have a good night of sleep, I am perfectly functional. So I know my post viral meningitis insomnia, is causing my dysfunction. I just have to fully beat the insomnia.
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