3 years post VM: Hi everyone, About 3 years... - Meningitis Now

Meningitis Now

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3 years post VM

EmilyPepperell
EmilyPepperell

Hi everyone,

About 3 years ago now I was told after my week long stay in hospital and numerous tests etc that I had contacted viral meningitis. I made a good recovery and was back to work after a couple of weeks. However I was given no information about long term side effects of my condition (or any information about meningitis for that matter!) And I am still getting really excruciating neck pain and migraines at least once a month. My doctors have been very dismissive and have only just agreed to put me on a migraine relief tablet. However, this is all I've been offered and the tablet is not a preventative so I just have to live with the fact that I am going to get these migraines for the rest of my life! It's really affecting work and my social life, does anyone know if this is a normal long lasting side effect or have any idea of how to get the doctors to take me seriously?

14 Replies
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Hi,

So sorry to hear you are struggling. I had VM this time last year and also started experiencing frequent migraines afterwards as well as headaches and neck pain and I have found that cranial osteopathy has really helped. I still get incredibly tired but from reading through these posts that seems an on going theme. However, it’s wonderful to be able to pass on some positive feedback regarding migraine and neck pain. Take care.

Thank you so much for responding I will look in to cranial osteopathy!

hi, I am 7 months after viral meningitis. I am having cheonic headaches and migraines. I have still get a headache everyday but with porphelectic treatment and botox my migraines r headaches are less severe and I get big headaches twice a month.

EmilyPepperell
EmilyPepperell in reply to amk2

Thank you for replying it's good to know I am not on my own!

Hi, I had VM in February 2018. It took 6 months off work and nearly a year to return to normal working. Severe headaches lasted 2 years and I have been left with vesibular migraines ,photophobia and visual vertigo. I never responded well to tablets but felt accupuncture did help with some symptoms. I take a high strength magnesium supplement alongside turmeric.

I hope you find some relief soon, you are not alone. Stay safe and well.

Hey! I’m exactly 3years post VM too. I still get debilitating fatigue, photophobia and neuropathy. Just wanted you to know you’re not alone in this and I too feel like it’s not taken seriously and have to be your own advocate. I would keep pushing the doctors as there must be something more they can do for you, ie Botox etc

All the best x

Thank you it's so reassuring to know I'm not on my own!

Hello Emily, Your post certainly strikes a chord, in 2016 I spent five days in hospital with suspected VM. Numerous tests including a CT scan, MRI scan,blood tests and finally a lumbar puncture failed to confirm this. I was told it was a stroke then told it wasn't, just migraines apparently! On leaving hospital although I was unable to stand unaided or or walk a few paces for nearly six months with no aftercare or backup support whatsoever. The dizziness and migraines continued along with acute sensitivity to both light and sound. Six months later I saw a neurologist as an outpatient who decided I was suffering from migraines and this was the cause of my symptoms. A few more visits to neurologists, ENT consultants and other specialists made it quite clear to me they had absolutely no idea of what the problem was and just concluded 'it must' be migraines. In desperation, two years later whilst still experiencing constant 24 hours a day dizziness, migraines and severe imbalance I saw a professor of neurology at a top London hospital to try and get to the bottom of what was happening with me. He was as lost as the previous specialists and suggested I took a drug called Sertraline which he explained was an anti depressant and although I certainly wasn't depressed 'might' he said, make things a little easier! I realised then that as far as the brain is concerned the medical profession are still in the dark ages. Anything they cannot understand is either migraines or depression. I can't blame doctors for their limited knowledge and understanding but it would certainly be refreshing if they were honest about it! I have not seen another one since, although the dizziness and migraines persist I certainly feel a lot better for no longer having to listen to all the facile platitudes and advice about getting enough rest,not eating certain foods etc. I hope you have better luck than I did in trying to find a solution!

Thanks I hope you manage to find some relief, I am now on sertraline funnily enough to combat the depression that has come with this condition! A lot of people have suggested cranial osteopathy so I'm going to give that a go next

Hi Emily,

My daughter contracted VM Sept 2018 (almost 15 at the time) and has had daily headaches ever since. Cranial Osteopathy helped in the early stages so also suggest that.

Since November last year she has been seeing an Acupuncturist, whilst I had taken her to another Acupuncturist prior, she didn't get the results she has had with this one. She has gone from an 8/10 pain level in both temples and straight across the forehead to a 6/10 on the right hand side only with treatment and chinese herbs he has eliminated the other pain.

He specialises in Neurological conditions and is determined to remove her pain completely. I agree with you that tablets are just masking the problem. We went through all mainstream drs first including a pain management specialist referred to us by the Neurologist, however, the medicine prescribed caused a seizure so we ceased under his direction and then I sought alternatives to get help build and fix the body rather than mask the pain.

I do hope you find relief very soon.

Thank you for sharing. I am about 1yr 8 months post VM. I unfortunately still have on and off migraines. It usually depends how much work I am doing and I MUST stay hydrated. For neck pain I do yoga and that helps to keep my muscles lose. I also have done some weight training to help with building strength and muscle which has helped with fatigue. At times I do have to take OTC medications such as Advil id I need relief from a headache And that usually works.

To be honest I don’t believe the medical community knows/ understands enough about post VM, it it looks like you have gotten some good advice here. Good luck on your healing journey.

Hello, I am 6 years post viral meningitis and I still have chronic migraine ( more than 15 a month) and a stiff , painful neck plus the fatigue that goes with the migraine . It has totally affected my life and work etc. The way forward is to get referred to a neurologist / migraine clinic as they fully understand the situation . I also went to a CBT group at pain clinic to teach me how to live with chronic pain .

It does slow me down but doesn’t stop me from doing the things I love ... I have climbed the 3 national mountains since having meningitis .

I look at it this way ... enjoy the good days and put up with the bad days !

A healthy diet helps massively : green smoothies, turmeric, acidophilus , vit D and B12, magnesium ( I rotate these and don’t take all at once or at same time)

Good sleep is essential .. my neurologist suggested a day light lamp for going to sleep and waking up in winter.

I have physio on my neck and acupuncture helped especially with raising my energy.

Exercise also helps .. again the neurologist suggested Pilates and I have been doing this for 18 months and it has been very helpful for my neck and spine plus I can do it when I have migraine too. Walking , swimming and step aerobics are my regular forms of exercise and running on a treadmill more recently ( I can’t run on the ground or jump like in star jumps as this aggravates my neck)

I trained myself back into listening to music and prior to lockdown I was able to go to concerts .

Every day is its own day and I am massively affected by the weather / air pressure . Some months are better than others so as I said I enjoy good days and put up with the bad ones and rest it out.

I also had no information but having spoken to many post VM people what I have seems common.

Oh .. I had daith ear piercings , on in each ear and they really reduced the intensity of the head pain .. I couldn’t believe how that worked!

I hope this helps and you can work out how to handle your head and neck pain.

Take care x

Thank you so much for your reply, I've tried the piercings and no luck there unfortunately, I will look into the things you have suggested though, thanks! I used to swim regularly which did help so now the pools are open again I am looking to start up again, glad you managed to find some relief!

Hi Emily. I am also 3 years post VM and still have regular Migraines and cluster headaches. I was prescribed Sumatriptan which works well if I take it as soon as I feel a migraine coming on. Like Bon Kitty I put up with the bad days and rest when needed but luckily have more good days than bad and my energy levels have returned. I found Yoga really helps my neck and shoulder stiffness and pain and recently I have been doing more strength and resistance training too. I think any exercise makes you feel better. I also take many supplements which helps boost my energy.

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