Meningitis Now
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1 Year Post Meningitis - Horrible Brain Fog

Is this normal? I have made peace with the fact that this will be a slow recovery but struggling with the fact that I am floating through my life. SO hard to focus and get through work and I feel as though I am missing out on my little boy growing up. Its hard to be present when you feel "drunk" and out of it every day. The fatigue is also so bad everything is exhausting. I used to be a very active person, hiking, running and working out. I can barely get through a short walk without feeling faint and dizzy. But again the brain fog is what is puzzling to me this far out. Please help! No one in my family understands why I am not "back to normal".

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As soon as I saw Brain Fog, I knew exactly what you were getting at.

Everything you mention describes a lot of the issues I had/have.

I am sorry I can not give you an instant fix.

You will start to get better or find a way to deal with these issues in time.

It is 3 years later for me and im still suffering.

The brain fog, as you call it, does ease but on some days makes a slight return.

I still have concentration issues which also has an impact on speech and memory.

Fatigue is one of my biggest issues.

I still suffer with other issues as well and found this site a great comfort.

Lots of the symptoms I have told my specialist about, they do not know why, yet I have since found others here with the same symptoms.

I do not know if my post is any comfort to you, but im here if you need to chat.

Regards.

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Your reply is comfort enough. Not being alone in this helps. Thank you so much! May I ask how were you when you got sick?

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Hi :)

Do you mean before I was taken to intensive care?

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Yes.

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I was never a particularly active person, maybe it's worse if you have been, you'd notice the difference more. For 12 months post meningoencephalitis I was in a "fog". I put it down to the anti epilepsy tablet I was taking. But after that period things did improve (once I was able to stop the meds). I can absolutely remember not being able to put thoughts together in the way I used to.

I'm 9 years on now and it's very difficult to know if I'm better or worse at things, if I forget something, is that to do with the illness? Was I usually this out of breath doing some activity or another? I don't know. For me, it was a continual, slow improvement. Actually, not really continual, there were times when I thought I wasn't improving month on month, but over time I was better. IMO 12 months is still early on in the recovery process.

I imagine outwardly I probably appear no different, but internally (head wise) I do have my doubts. Things are different.

Like I say I'm 9 years on from it and my view is that I'm lucky to be alive and not unlucky that I have partial hearing loss, tinnitus and fatigue more easily. BTW friends and family can't understand the problems you have. For me, I had no outward signs that I was still "ill". In most cases its a very serious illness and any recovery at all should be looked on as a positive thing.

Graham

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Thank you Graham. Its tough. Specially when even Doctors dont seem to have a clue. I def have tinnitus and the vertigo that comes with it. It seems to happen more so when I push myself. That and I start feeling faint and like I might pass out.

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My neurologist insisted that I rest and sleep as much as possible the first TWO years post diagnosis as my body and brain required. If I got sleepy, he told me to nap. He INSISTED I nap. He explained that this was my brain's chance to heal. He also told me that the majority of healing takes place in those first two years. So, basically, he gave me the permission I needed to sleep when I felt the need to do so. That gave me the freedom I needed to be able to call in sick to work when necessary. It also allowed my family to understand that if I said I needed a nap, to allow me to take one, as it was "doctor's orders". I do believe that the advice was good advice. It's now been two and a half years for me, and the side effects are much less. Concentration is better. The brain fog is better. The neurologist still tells me to get plenty of sleep, that my brain is still recovering. Keep fighting! Each day is a new day.

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Thank you so much! It makes total sense. I guess we are just so eager to get back to "normal" that we want to speed this up.

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Hi there, please read my daughter, Rosie S's Story on this site. She, like you was in a terrible state post VM, but after having some cranial massage sessions, from a cranial osteopath, she is pretty much cured and feels back to her old self. It's the only thing that worked for her after trying antidepressants and varied painkillers. This has been such a recent breakthrough, that she has been in local newspapers and now a radio station would like to interview her in order to spread the word. Wishing you luck with your recovery. Xx

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I am in the US and cannot seem to find anyone who knows what cranial massage is. They have cranial sacral? is that the same? I go to acupuncture and a chiropractor and that helps with other aches and pains but not so much with the brain fog.

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Craniosacral therapy (CST) is the same thing. It is an off shoot of osteopathy in the cranial field. Cranial osteopathy has been taught to non-osteopaths under the name cranialsacro therapy...hope this helps!

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Thank you! I tried it twice so far and it has not touched the brain fog. How many sessions did she have?

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The manipulation regulates the flow of cerebrospinal fluid, which it seems VM creates a blockage for. My daughter is now on 9 out of 10 sessions booked with a cranial osteopath, but she felt relief quite early on.

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Rosie my daughter wrote this note below to the peer group she joined for VM on a Facebook forum:

Hi, thank you for accepting me into this group, I wanted to share my success story as I feel my treatments may help many others with similar symptoms that I had…..I had viral meningitis nearly 2 years ago, I suffered long term after effects such as head aches, stiff neck, dizziness, anxiety, depression, mood swings, bad memory, lack of concentration and most frustratingly mainly no energy whatsoever 😞I was stuck in a rut and didn't know where to turn to for help to feel better until my mum found this charity, I started having acupuncture in may this year as my mum spoke to a nurse that said it was a good thing to try for post viral meningitis which has been a huge help for my recovery in many ways and thanks to Meningitis Now I am also currently having complementary cranial osteopathy, I have had 7/10 sessions so far which has worked wonders and I honestly feel nearly 100% better, I throughly recommend both treatments for people suffering post VM after effects, it has been a long time since I felt back to my old self before I was ill, Meningitis Now have been a huge help and so supportive and understanding where as a lot of people don't realise that it can leave long term damaging effects, I lost friends that I thought were best friends that didn't believe I wasn't well and made me feel stupid and that I was probably just overreacting but it really was a relief speaking to the people at Meningitis Now and people understanding exactly how I was feeling and willing to help, I have attached my story that my mum sent to the website as I was asked to post it on here incase anyone feels it may be useful to read😊

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Thank you SO much! I feel just the same. Starting to get a bit depressed because I am in a fog every day. My life is just passing me by.

I will keep with both the cranial sacral and acupuncture to help heal.

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I've had viral meningitis 7 times. I've had the brain fog since 1997. Chronic fatigue. I'm currently experiencing dizziness, lymph nodes swelled up in my groin the size of a jelly bean feels like it's on fire. Extreme muscle cramps in my legs and back. I've been dealing with this for 20 years now and still have no idea how I got it in the first place. Problem with being treated is there is not enough studies that have been done on meningitis. Doctors just want to pass you off to another doctor and so on.

It's ruined my life!

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