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Meningitis Now
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struggling with VM recovery

Hi, so glad to have found this site. I was diagnosed with VM mid March 2018 and like others still dealing with the after effects. My employers seem to think I should be back at work, fully productive within 7/10 days and I’m struggling not to feel extra stress. Headaches, fatigue, aversion to loud noises, aching joints & strangely insomnia are making me miserable. Like a lot of people on here I was fit and healthy prior to this and want to return to my normal life ASAP.

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Don't be so fast no stairs or lifting short walks so flat ground this will take 6 to 8 weeks then you can start doing more listen to your body if it hurts stop. Good luck helpman

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It is still early days of your recovery. Be kind to your body and do not over do it too soon. I am just 6 mths recovery and still have major complications. Just listen to your body is the best advice I was given. We all want to return to our normal lives but you will find what your normal is in time.

Good luck Jenny

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I had it in 2013 and I still don't feel like my old self, although i really haven't talked to anyone about it. I have arthritis in my feet and ankles and dealing with that. Used to have migraines everyday until I started having botox injections, now they are trying to ween me off out and I'm really afraid. Not sure if this helps you or not. I wish you all the luck, you are not alone. I just found this and it makes me feel a little bit better to know I'm not crazy.

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Thank you for taking the time to reply as it does help to know you’re not alone; or crazy! Every joint in my body aches and if I over do it I can barely function the next day. Headaches are blinding. My GP was at a loss as to why I feel like this 6 weeks on. That’s why it’s good to hear there are others suffering too.

Best wishes for continuing recovery :)

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You can listen to a lot of advice but most importantly listen to your body. It takes time to get over, rest and time are the key. Take care and prayers and thoughts for your full and speedy recovery.

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Thank you fir taking the time to reply to me. It’s reasduring to know I’m not alone :)

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I am a retired ER physician trying to connect some HSV 1 encephalitis cases to see if HMOs are giving the right treatment. I am sort of a "Hospital Cop." Chuck Phillips, MD. cphil49401@aol.com. I offer second opinion as I am retired but once the ER doc to the King of Saudi Arabia. After 50 years of Urgent Care and ER Care, I probably have seen it all.

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Have you ever seen someone get viral meningitis from HSV once? hsv2

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I felt exactly like you and was so frustrated why I wasn’t getting better quicker. Prior to my stay in hospital in November 2017 with VM I was used to being very active and busy. I’m yet to return to work, this is partly because of the level of demands I have at work but regardless of this after 2 months like you, I was flawed by the fatigue. My brain and body did not want to get in sync and I spent a lot of this time very annoyed. I have had two great GP’s who were great at managing my expectations. It does seem to take time for some and when I pushed myself too much I went backwards. After 5 months my fatigue started to lift, I had to push my body to move more and because this was the right time it seems to be going well. The main problem to me is the constant headache since diagnosis. I’ve been pushy to be seen by a neurologist at a headache clinic, this is definitely helpful if you can be referred if headaches are an issue for you. I’ve tried everything from medication, acupuncture, cranial osteopathy, cbd oil, vitamins, moxibustion and frozen peas on the head. If someone had said I’ve heard clucking like a chicken helps headaches, I would of tried it! I’ve now had a greater occipital nerve block which maybe starting to offer some relief. If you haven’t already I’d definitely call the Meningitis Now helpline. I’d never called a helpline before and was sceptical but they’ve been great, knowledge and supportive. They have a factsheet for employees regarding VM, this might be helpful to show to yours. Good luck with your recovery, stay positive, things will get better.

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Thank you so much for your comprehensive reply and taking the time. I do have continual headaches, always there and yes I’d try clucking like a chicken if I thought would help :) the fatigue is also my main issue and sometimes I do wonder if I’m just being lazy and try to push myself. Oh no: this is by far worse. Any exhertion takes me backwards and I think it’s just changing my mindset that I simply can’t do any of my normal activities; yet! Thanks for the tip on the fact sheet and this would indeed be helpful to my employers who really are not supportive and want me back to my busy demanding role.

Thanks again and continuing recovery to you :)

Lynne

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Hi, I had meningoencephlitis in Feb 2016. Having this illness is like having meningitis AND encephlitis at the same time. I am still suffering from migrains and fatigue. I have to say your employers are being so unrealistic about your condition. If you don't have a good neuroligist please find one. I think most doctors and people don't realize what debilitating illness this is. Good luck and pray you feel better in the coming days.

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Hi take it easy for at least 8 week no stairs no lifting walks on flat ground listen to your body if it hurts stop you can tell when your body is ready good luck helpman

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I had near fatal VM in 2002 and I think the best advice I could give you is to change what 'normal' means. Your employers probably think you should be back to normal in 7 days, 14 at most, because that's what the medical profession says should happen. They've probably Googled it and assumed it was correct. Unfortunately the medical profession also thinks that VM is never any worse than flu and that's wrong too. It took me about 8 months to be able to work at anything near the level I was before and even then not to the speed I was before.

You have to remember that VM is a brain disease and it can have all sorts of different after effects primary among which is tiredness and ongoing fatigue. Everybody's recovery from VM is different so what I would suggest is to get your employers to ring the Meningitis Now helpline and ask about recovery from VM and then maybe they'll be more understanding. If that fails PM me and I will happily let them know my experience and that of many other people who have had VM. I'm a Community Ambassador for the charity so there is some provenance there to be able to help.

Please do though take it very easy, rest when your body says rest and when you feel like doing something then rest some more. Good luck, Jonathan

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Thank you so much for your valuable advice. I will use this a starting point in my discussions with my employers: a large blue chip company with a vast Occupational Health department. It’s difficult to explain how you feel when their perception is from mr Google.

Many thanks

Lynne :)

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No problem, the occupational health dept will have doctors on the payroll somewhere and that’s where the 7 days is coming from. Always a good question to ask OH is how many people with VM and post VM recovery have they experience of or worked with. My hunch Is they’ll waffle about meningitis being all the same but be persistent, at a time when that’s the last thing you want to do I know, and actually get them to tell you a straight answer. If they say they haven’t been you can ask them from where the evidence to support their assertion has come from and then get them to ring Meningitis Now. The medical profession rarely admits they are wrong to protect the professional ego and that they know more than you do. When it comes to VM believe me they don’t. I have worked with enough doctors to know and I had to go through the same process with my GP and my company at the time. If I can help by talking to them please PM and we can go from there.

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Hi, whilst I suffered (and will continue struggling with the harsh consequences of) BM since mid-February this year, what I do believe is that many people (myself included until February) are simply ignorant of meningitis and it’s long-term consequences. Until you’ve had it or known someone close to you who has had it then it’s difficult to understand unless an effort is made to understand it. Perhaps this should be related to your employer. Hopefully your GP is understanding and helpful. Mine fortunately has been brilliant. Have you spoken to anyone at the help meningitis helpline? They are a small charitable group who might have some further thoughts. Take care and remember you getting better will take time measured in months not weeks.

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Thank you for your kind, wise words :)

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I am 8 months out and my immune system is still low. It took 5 months and a relapse befor I was what you would call better. But I still suffer bouts of fatigue. So don't be so hard on yourself.

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The meningitis now website has a good fact sheet you can print and give to your employer.. I am exactly 1 year post VM. I was in hospital for 7 days and off work for 8 weeks after. I went back briefly on a phased step up and felt exhausted but luckily for me my husband was relocated with work and I was able to leave. My GP was great and very supportive. He prescribed Sumatriptan for the frequent headaches which has really helped and I also do gentle yoga which has helped with balance and neck and shoulder pain. Since December I have been feeling pretty much back to my usual self and now working on increasing my exercise and stamina. Be kind to yourself, eat healthily and rest as much as possible. x

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It’s giid to hear a positive outcome. Thank you fir taking the time to reply to me; much appreciated :)

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Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

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I am looking for Kaiser cases wherein the standard presumptive treatment for VM of coverage with acyclovir IV in ICU every eight hours until PROVNE NOT NECESSARY is being withheld since the MDs share profits with the plan. We have four damaged young women - two dead and two hurt from this (all in Northern California). And if I can find even one elsewhere - Atlanta, DC, Denver, Portland, or Seattle - it all goes federal where we need to be as criminal cases spanning 20 years. Chuck Phillips, MD - cphil49401@aol.com - past Kaiser physician but also reporter for life. Whistle blower to the feds.

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My heart goes out to you Lynne, it is really hard to feel like that, and to not have others understand. Unfortunately it seems that few people are in the know re this disease. I first fell ill while out of the USA, in Dec '16, returned to my Central New York home as planned that month. My PCP Primary Care Physician had no idea what was wrong. Months later I had a neurology appointment and a 'probable diagnosis' It's been quite a journey, with several flare-ups. Right now I am hoping to find a doctor who specializes in Mollarets.

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I was just wondering if you're in the Mollarets meningitis support group on FB? It's a secret group, that is full of great people.

I recently joined forums and support groups to share things I found that have worked so well, I consider some miracles.

Graviola tea has literally saved my life. After over a year and a half of 24/7 head pains, head pressure, and headaches, brain fogginess, light sensitivity, fatigue, etc. I came across Graviola tea researching something to help my lymphatic system (hoping to somehow flush lymphatic system and boost immune system).

Ordered teabags off Amazon, two days after drinking, to my total and complete shock, I woke up with no headaches, pain and pressure gone. Within a couple of weeks all other symptoms significantly decreased.

After two months, I felt completely back to normal. I cut back tea to just a cup or two a week. Two years with no pain, no symptoms (unless I run out of tea for over a month).

I also take a couple of things on and off for brain and energy: gotu kola, grape seed extract, and apple pectin.

I try to keep my immune system up with echinacea and dandilion roots (I prefer teas, so I just add to my graviola tea and steep medicinal teas 10 minutes).

And milk thistle before bed to keep liver from getting overloaded.

I search out others living with meningitis, especially mollarets, hoping these can help others.

I've already gotten some great feedback from others who are thrilled with these and that they are feeling normal again!!

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Hi Lynne,

I was just researching Mollaret's Meningitis so that I can give some information to Occupational Health/my employer so they are better informed when I came across this site and read with interest the experience of others who have been diagnosed with Mollaret's Meningitis. My first episode of meningitis was when I was 18 and am now 51 having had 8 episodes of viral meningitis (one probably misdiagnosed as cervical spondylitis) in the interim. My most recent admission to hospital was in May 2018 when I was admitted for 10 days and received antivirals IV. I was not diagnosed with Mollaret's until 2010. Over the years I have come to know it better and what works for me in managing it, or should I say how I want to be treated by the medics and with the support of an excellent neurologist who provided me with a detailed letter outlining my treatment which I now take to hospital with me to give to the medics, treatment is better. One aspect that is helpful is that I don't have to endure the range of invasive tests (lumbar puncture/MRI/CT) I used to have or the misdiagnoses that accompany the test results such as TB meningitis and beginning a course of 9months TB medication!

That said, whilst I understand the course Mollaret's takes better now, each episode can vary as can the length of hospital stay. Usually, I am off work for around 4-5 weeks and have a phased return over the next two slowly building up my strength as I go. This time, has been different and I have found that fatigue, some headaches and generally feeling unwell from time to time has impeded my progress and I remain off work. To an outsider I look okay but there are times when I have a good day followed by a couple of days of feeling wiped out.

I see in previous blogs people have mentioned the response they get when they mention viral meningitis and how it is viewed as less serious than bacterial. Certainly, the impact of bacterial meningitis can be catastrophic if treatment does not come at the right time. I too have experienced that response from people when you say viral and you know they have switched off and it's as if they are thinking 'well you're lucky, it's only viral'. This said, there are still residual effects that affect many, not least the fatigue but for me it's the fear of not knowing which headache is the one to worry about and prepare for potentially going to hospital or the way it affects my speech when I struggle to talk and find my words and my concentration and memory. However, I've learnt to give myself time to recover. Educating those around you helps when they understand better what you are dealing with that they cannot see. Everyone can see a plaster cast but not everyone is receptive to recognising how tired you feel or that it took you two hours to get ready before going out to the shop.

Take time, be kind to yourself, rest and don't be rushed by others who think they know your condition better than you. Good luck

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Thank you for your very comprehensive reply and it is good to realise you’re not alone :)

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