Head pain

[Anniemalgal]

Hi!

I’m a few weeks out of hospital after viral encephalitis and what I’m suffering with the most is head pain that starts at the back of my neck when I sit up or stand or do anything upright.

I have to spend most of the time lying down but I’m scared this is going to cause more problems with weakness etc.

I had a week in intensive care and 3 further weeks mostly lying down and then after a week out of hospital I had to do another week of bed rest as the neuro was concerned it was a LP headache. My MRI is clear and it is not a LP headache.

Any advice?

I want to push myself but sometimes when I walk the pain is so severe I feel like I’ll throw up or have to dive onto my bed to reduce it. Sometimes I’ll get up and walk a little and it won’t hurt at all and then other times I’ll get up and it’ll be excruciating and I don’t understand why.

[Ocean96]

Hi Anniemalgal

Firstly, so sorry to hear you haven't been well, and thanks for sharing your story.

You've been through a lot but look how far you have already come!

I had Autoimmune Encephalitis and I experienced similar pain around my neck into my head. My neurologist initially wasn't sure but he concluded it was neuropathic pain and could be caused by the treatment or even the after-effects of the encephalitis. However, I definitely want to say it did get better with time! Everyone is different but my neurologist put me on a painkiller specifically for neuropathic pain for a short period of time and I rested a lot. However, when I push myself too much I can feel it coming back so I'm learning my limits bit by bit!

My best advice would be not to push yourself too much (I'm guilty of this too) and it's very frustrating figuring out your limits. Take it day by day, week by week, and keep a diary of when you get this pain so you can link it to triggers if any as this would be helpful for your doctor and you!

Lastly, I would mention neuropathic pain to your doctor and see what they think.

It sounds really hard and I was in a similar position and it's very upsetting when you don't know why! Keep going you are doing great!

The Encephalitis Society is a great support when things are difficult and they are great information on their website about pain after-encephalitis- encephalitis.info/physical-...

Heres also a link to the society youtube channel which I find helpful in knowing I'm not alone! - youtu.be/QmaPeMhicPY(Not working as expected?)

All the best

[jmeg24]

My mom has viral encephalitis and had head pain for quite some time. Her doctor put her in high doses of magnesium and ribloflavin and that made a big difference for her!

One thing we’ve learned is encephalitis is not a quick recovery. My moms doctor told her a year before we start to see real improvement. That was hard to hear but also helped ease some of our fears. Hang in there!! I hope you start feeling better soon!

[catalfie in reply to jmeg24]

I had encephalitis 9 years ago my nerves in my brain were damaged waiting for nerve block in my head has anyone had this and did it help

[NewWalkingBoots in reply to catalfie]

Hi. I had viral encephalitis 5 years ago and get a lot of neuropathic pain. I’ve never heard of this treatment, nerve block in the head. I’d be interested to know more.

[NewWalkingBoots]

I had viral encephalitis 5 years ago. I get neurological pain, facial mostly but it spreads when I’m tired. Gabapentin helps. Although I can’t offer any advice regarding your headaches specifically I just wanted to say that I ‘pushed’ myself in the early stages and I regret it now. Perhaps the pain you are feeling is just your brain’s way of telling you to rest.

Rest, rest and rest and take it slowly.