Support after VM

Hi, I was diagnosed with VM just over four weeks ago and spent a week in hospital. Since then I have had on-going problems with headaches which vary from a background headache on some days to disabling headaches where I find even walking to the toilet difficult. My balance and coordination is not great. I also often feel nauseous and dizzy and sometimes actually vomit and faint.

My problem is that I have seen my GP several times as well as visits to the out of hours service when the pain has been unbearable. I have seen a neurologists and tests have shown that there is nothing seriously wrong. There seems to be very little they can give me to reduce the pain - I can't take NSAIDS and opioids are discouraged as they can cause headaches. I have found an increasing dose of amitriptyline has reduced the number of severe headaches but I am having to reduce this as it may be contributing to problems with my blood pressure and fainting. My worst experience was with a nurse when in hospital for another condition. Even though I was covered in vomit, crying in pain and struggling to even walk to the toilet she said it was "just a headache" and to be expected.

Most of the medical professionals I have seen have been understanding but I don't think they appreciate the impact it is having on me. Even though I have family and friends around me, I feel quite lonely and misunderstood. There are days when I can only lie in bead crying with pain and I am covered in cuts, bruises and even a burn due to my lack of balance/coordination. I am quite concerned that one day I will cause a serious injury but my treatment does not change. Does anyone have any similar experiences? Is there really nothing else they can do to help improve my symptoms?

11 Replies

oldestnewest
  • Please believe me this does get better, diagnosed with viral meningitis last year I am now slowly starting to get better ! It's a long road that no one understands however after reassurance from a friend who had it she was right ! Good luck and have faith you will feel normal again x

  • Heya. Sorry to hear your suffering in relation to the after effects of Meningitis. I know first hand what its like having had 4 Attacks of Bacterial Miningococcal Meningitis in my life time, The last hospitalisation was 2/3 years ago and like you has seiously effected MY like . The headaches for me are ranging in severity these days and Ive been able to manange this with taking Painkillers every day, which i guess has been helpful. The Memory loss is so disabling and frustrating and some days I can even remember peoples names when Im standing next to them,,,,, No laughing matter ..... As you mentioned Balance is an issue and like you I stumble. however Its under control at the moment , even thought when I walk I do sway side to side and can present as being under the influence of drink, when I am clearly not....

    Another area of concern as you said is I feel this is a silent type of disability as people do not understand and the Medical profession are NOT up to spead with understanding the after effects , hence the lack of support, in MY experience . I take life long medication Penicillin every day to control the chances of another attack, but theirs no Guarantee sadly and now being 53yrs of age Im sure I would not have the energy to recover.

    The most beneficial thing i did was to create a better work and life balance as this ensured I had more time to recover , hence i worked 2/3 days a week only, however Ile soon be not working at all as being made redundant.

    I would advice you to try to be positive as your able and talk to your Dr as much as you need, but dont always expect them to understand. I genuinely hope your symptoms settle down in time like mine have to some extent, and dont be afraid to communicate on the boards as in my experience those who have had Meningitis seem to be able to Empathise and relate to the issues. All The very best and feel free to further commuicate ............

  • You are not alone.

    I had VM 5 years ago with symptoms and experiences very similar to you. My now official neurological diagnosis is "you have headaches". It gets better over time. With the help of medication im about 90% ok.

    Unfortunately, it doesn't seem like there's a something that works for everyone. It took me 3 years to find what works for me. I think it takes 3-6 months unfortunately to decide if a drug works for you. Id also suggest acupuncture, it may or may not work, but ive found acupuncturists to be very understanding and helpful. At the very least it's relaxing.

  • Four weeks is very early days. This will take you a long time to get over and you will never forget it. We, who are writing these are of the lucky ones but that does not change how serious things have been. This took me about two years to really realise how ill I had been. That said there is a lot of help now avaiable both on here and through

    meningitisnow.org/meningiti...

    If it helps you can read my ongoing progress here

    bumpyhighway.blogspot.co.uk...

  • Thank you for your replies. It is encouraging to know that it will get better with time however frustrating this may be. Luckily I have found one GP to be very understanding so will stick with them. I have been told that I could swap the medication I take rather than reducing it so am trying that next week. There is also talk of going to see ENT to make sure there is nothing else going on there (I have had a problem with my vestibular system in the past) and waiting for blood tests to check my hormone levels just in case some of the blood pressure/fainting is this rather than the meningitis. I have also made an appointment with a cranial osteopath who appears to be very interested in my symptoms. At least now it feels like there are other avenues to explore however long they make take.

    Thank you for taking the time to reply to my post.

  • I can sympathise with you - my early symptoms were very similar.

    I'm 18 months post VM, and can confirm that 4 weeks is very early days indeed.

    I found that when I had an attack of pain / nausea etc, It would only get worse if I tried to press on through it.

    This isn't something that you can 'tough out'. You need to rest up and wait for it to pass, or you will only get worse.

    Recovery from VM is very slow, and sometimes feels like "two steps forwards and one step back".

    It is very frustrating, because I used to be very active, with almost boundless energy, but now I have think more carefully about what I do, and gauge my energy levels.

    Go slow, take time to recover.

    Eat well, avoid alcohol at all costs - it disagrees with amytryptylene. And try and get a little excercise- some gentle but enjoyable "me" time.

    I found that the amytryptylene is very slow acting. I take it at 6.00 to 7.00 in the evening to make sure it has worn off by morning.

    Watch out for depression- it hit me badly. Talk to your doc if you feel depressed, but cannot work out why...

    You will improve- but slowly.

  • I completely agree with Captainbeaky's advice. It is a very frustrating illness and the recovery from it can be so slow. I was diagnosed with viral meningitis at the end of October after being admitted to hospital with the worst headache of my life, it felt like the top of my head would explode as the pressure was so bad. I was only kept in hospital one night and was assured by the consultant that I would recover during the half term school holiday (1 week and 2 days) and be ready to go back to school after this (I am a primary schoolteacher).

    Unsurprisingly I was nowhere near ready to return to school and can't really remember much of the first few weeks, I was in so much pain. My own doctor was very supportive and assured me I would not be ready for work until after Christmas. Being an optimistic and positive thinking person I really didn't think it would take that long. Every week I would expect to see a measurable improvement in my symptoms and would feel upset when I didn't seem to be getting better. By mid December I felt I had a break through and started to feel much more like my old self. I launched myself back into life and was exercising and beginning to do some school work ready for January.

    Finally I returned to work in January in a phased return only doing 3 mornings the first week. Unfortunately after the first week, the headaches which had all but gone, came back with a vengeance and I was suffering constant painful headaches. I ended up being signed off work again and I was sooo disappointed. I now realise that I did too much too soon and did not listen to what my body was telling me. It was a hard lesson to learn and was a very emotional time. The doctor said just to rest and recooperate but after another month had passed and I still had chronic headaches I was feeling very low, fatigued and frustrated. My doctor then prescribed Amitriptyine for the chronic pain and so I began on a low dose of 10mg and increased this each week to 50 mgs. I have now been in 50 mg for one month and it has helped to some extent. I still get frequent headaches but they are mild to moderate and generally don't last all day. I am now hoping to try another phased entry to work after Easter but do feel quite apprehensive about it.

    So as you can see it can be a slow process recovering from VM and mine is still ongoing. I think it is important to try to stay positive and not to push yourself too hard and make sure you do things that you enjoy. I have been getting Cranial Osteopathy thanks to the wonderful Meningitis Now and I was recommended to try Restorative Yoga which is for people with chronic conditions or recovering from illnesses and it is just lovely!

    Take care everyone.

  • Thank you Captainbeaky and Autumn 2014,

    It is reassuring to know it is not just me as I have found my usually helpful GPs quite dismissive.

    I had to come off amitriptilylin due to my blood pressuring becoming extremely low on it which was a shame as it seemed to help my head. I have however given up asking my GP for advice. A neurologist said it sounded as if I was having non-classical migraines with some tension headaches and I am waiting for a follow up in clinic. Despite this my GP seems to think I am fine and wasn't supporting me so I ended up back at work. I knew this was not a good choice (I am an early years teacher) but when your GP thinks you are exaggerating because bloods etc come back normal there is not much you can do. I then had a week off and am now on Easter holidays. I need to see the GP again to discuss better pain relief and/or a sick note but am dreading it. All the doctors I see seem to think I should be over it or I am exaggerating. The problem is I am often ok (nothing more) when I do see them as I have had to cancel some appointments (on the really bad days) as I have been unable to get out of bed. Are there any other tests they could do now to prove/support the diagnosis? I didn't have a lumbar puncture as my bloods ruled out BM and they said they were able to diagnose on symptoms.

    On the positive side, the osteopath is wonderful. I do a pilates/yoga mix with an instructor who is very good a rehabilitation (I suffer from another condition and they have been excellent with that) and have found this to be a good form of gentle exercise when I am able to do it.

  • Hi KaylaP,

    I am 12 months post VM and still struggling with constant severe headaches. I am a teacher and I am still nowhere near being able to return to work. My GP has been supportive and he can see that I am unwell. I made sure I went to see him on very bad days so he could see exactly what I was saying. The neurologist says I may have locked in migraine and he is investigating further with MRI scans. The meningitis caused my neck and spine to dislocate and this has complicated my recovery adding another headache into the mix.

    I have tried to return to work but no one will let me as I am really not fit. So I have accepted my situation and patiently waiting to recover. I am beyond fed up about not being able to do anything but if I push it ,I end up in bed for the week.

    My advice would be: keep going to your GP and take someone with you to help stress your case...my husband or my mum comes with me to tell him what they are seeing and how worried they are. That is what the

    GP is there for so don't worry. As you know, if you go back to school too soon, you will crash and go off again. You are allowed 18 months off. I also went to Occupational Health ( work should referr you) and they told work that it can take 18 months and that I was not fit for work. Also contact your union and ask for their help as they will support you in return to work / stay off sick meetings.

    This illness is not to be messed with, it is your brain and if it hasn't recovered then it hasn't recovered. I was a neuro nurse prior to teaching and I know that 12 months is not long in terms of brain recovery. Look after yourself and take all the time you need, work will not be there looking after you when you are I'll in bed!

  • Hi bonkitty and thank you for your advice. I am sorry it has taken so long to reply as I have had a really bad headache/migraine the last few days and am only just able to look at the computer screen! I saw my GP again this week who is not convinced about the viral meningitis causing the headaches which is frustrating as I still do not believe they are being treated seriously and I am still relying on those strips and paracetamol. My partner could not come with me this week but I have made an appointment when he can attend next week as I am still not happy. I am not allowed to return to work until I have seen the neurologist. The last few days have been a bit of a set back but knowing I'm not alone has really helped me to keep pestering the GP and seeking treatment.

  • Hi KaylaP , I am so sorry to hear you are unwell with headaches and getting no joy from your GP. Definitely keep pestering your GP. Yesterday I went for MRI scans of my head and spine and hopefully the neurologist will have a plan to sort out my headaches. If you contact Meningitis Now, you can have access to a support worker who will help to explain your illness to your GP and to work. That support might be good for you to try. My neurologist thinks my constant headaches and other symptoms are a result of brain inflammation and he is thinking I have locked in migraine which is common after VM. So I would see a neurologist too.

    Take care and I hope you get sorted soon. X

You may also like...