As some of you maybe aware from my previous post I'm suffering from the E virus.. what one? I wish I knew! I've moved in with my partner so in the middle of changing doctors so hopefully they can help in some sort of way.Has anyone experienced a kind of headache that feels like an electric shock now and again? Mines on the left hand side near the back and catches me every couple of seconds and have done for the past 48 hours. My speech has changed and I'm speaking slower than normal. My scalp is also sore to touch.
I'm fed up with trying to get help from the doctors and hospital and being told the same thing. I really do feel like giving up.
Written by
Mooney1989
To view profiles and participate in discussions please or .
Sorry for the late reply, I haven't been feeling the best so kept away from a few things to get back on track. I'm normally fit and well so this encephalitis has hit me hard. Thank you for your reply. I really appreciate it
I’ve just read your previous post, and I’m so sorry to hear about the way you’ve been treated.
I hardly remember anything from when I had enc, but do remember my scalp feeling really sore - apparently I would rub it so much in hospital that I created huge knots.
All I can say is, please don’t give up - it’s really important to get the treatment that you deserve. I’m sorry that I can’t be of more use, I think the other members offered some great advice on your original post, but just know that we’re all here for you.
Thank you so much for your kind message, my scalp has been so painful it's unreal. I've had people move away from me thinking I have some sort of head lice 🤦 I cant get over the amount of support I'm getting on here then struggle to get it from hospital/doctors. I've been referred to neurology but been told there's a years waiting list Sorry for the late reply, I haven't been feeling the best so kept away from a few things. Thank you again for you reply.
I'm so sorry to hear that you are not getting the treatment that you need. I would encourage you not to give up especially if your symptoms are increasing.
aI have been a caregiver many times. I have taken two loved ones to the ER and ER said to take them home. I refused and told them there was something wrong and I was not taking them home and left. Come to find out...there was something wrong...one had a mitral value problem and the other had brain cancer.
Right now I'm having issue with my husband. I'm not sure if it's short term memory and the fact he always feels so tired or is the encephalitis coming back. Fortunately we do have a MRI tomorrow which will give me some insight.
I will keep you in my prayers and please keep posting.
Thank you so much for your reply and apologies for for my late reply. I haven't been feeling the best lately so kept away from basically everything. Sorry to hear what you have gone through with loved ones. Someone on my shift in work has been complaining of headaches and later found out he had brain cancer then a week later I started to get terrible headaches so as you can imagine the worse started to go through my head. How did the mri go with your husband? Hope he's alright? 🙏 the trumpet vines look lovely ❤️ we have just had 2 days of snow in the UK 😢 my chickens didn't like that one bit 😳 Take care
Hello Mooney 1989 so sorry to read your having such problems, may I ask how long is it since you’ve had Encephalitis? As I found during the first few years all sorts of symptoms were being thrown at me by my ‘control unit’ up stairs ie my damaged brain . They do repair them selfs but complain about it along the way. Stick with it you’ll learn in time to know what it’s telling you .
It's only been since January so still early days but the amount of of things that I've noticed that alas changed has been unbelievable. My doctors have now referred me to neurology but they have told me it will be around a year for the waiting list 🤦 thank you for you reply I really appreciate everyone's comments
The first few years are to say the least traumatic and you will feel away with the fairy’s but I can assure you it will get better . You will learn to cope with the ‘new you’ I’m not going to say it’s easy but quite obviously your a fighter and you’ll do great my new friend I’m here for chat whenever you want, if I had someone around who knew what I was going through when I had it it would have been so much easier. Your not on your own . One day we may even have a meet up and have a laugh .
Take it slowly and listen to that damaged bit of you it’s a great piece of kit and knows what it’s doing
Can't help I'm afraid with no similar experiences to report. When you really reach the end of your tether you could try 'Lion's Mane' extract - a traditional remedy from China for nerve problems (see Google etc.). I bought some but haven't tried it yet as it may interfere with anti-seizure meds which seem to be working ok at the moment.
Sore scalp may be dermatitis -related, try medicated shampoos, these work for me.
Left-hand side near the back? Again try Google to learn about brain areas and their roles.
If your GP can refer you to a neurologist they may help with scans etc. but medics don't relish dealing with insoluble problems and you may find diet, exercise may assist with mood and motivation assistance. Good luck. G2
Apologies for the late reply, my head haven't been in the right place so been feeling abit rough lately. Really appreciate your message thank you. My new GP has referred me but told me it's around a year for the waiting list... I'll have a Google later for the lions mane thank you!
I am so sorry to hear about the way you’ve been feeling- I wondered if you have already contacted the Encephalitis Society? They have been a massive help to me - they are so knowledgeable about encephalitis and always try to help. 01653-699-599 is the number in case you need it 👍 let us know how you are.
I did ring a few weeks back and got some information from them but I'll definitely ring them again as I think I need help with a few things. Sorry for the late reply, my head haven't been in the right place so haven't been feeling the best. Thank you for your comment
Hi Mooney1989. I know how hard recovery can be, as I struggled with some horrendous symptoms during my first year of recovery, too. I’ve sent you a message on Health Unlocked with some information which I think you may find useful . (Let me know if you don’t know how to access messages on here).
I'll take a look tonight really appreciate it. I've been off here for a few days as my heads been elsewhere but I'll reply to everyone and have a look at the message
Hi Mooney1989, please do reach out to us again if you'd like another chat, or more info. If memory is an issue then not sure if your partner or a trusted family member/friend could call in too, or we can email if easier to keep track of what is said/can go back to it. It's so good to read the supportive comments from the wonderful encephalitis community on here Our support team can be reached here - support@encephalitis.info or the number 01653 699 599, you are not alone! 🙂
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
then a week later I started to get terrible headaches so as you can imagine the worse started to go through my head. How did the mri go with your husband? Hope he's alright? 🙏 the trumpet vines look lovely ❤️ we have just had 2 days of snow in the UK 😢 my chickens didn't like that one bit 😳 Take care 
thank you. My new GP has referred me but told me it's around a year for the waiting list... I'll have a Google later for the lions mane 
How long has it taken to get back into work?
My Brain and Me video and Your stories 
Encephalitis Newbie - Seizures and Sports 
Post E, anyone not want to be here?
