Post viral Meningitis

[jag65]

Just recovering from Viral Meningitis, and amazed at how little help, and information that is available. Have been left with severe headaches, balance problems, and the feeling of " Drunkeness " most of the time. Are these symptons normal ? as I am sure my doctors and family think that I am exaggerating

[rowenafly]

Hi yes it's normal for some and in most people it slowly wears off. Print out the fact sheet about recovering from this on the website and send it to people. They prob have no idea how serious this was. No one I knew understood what this can do. Try to get people to know how serious this is so they don't give you a hard time. I have taken a year and 3 months to be able to go back to work seriously. So don't discount the after effects, the can be real bastards. But everyone seems to improve a lot, but the stats suggest most people take a year for the radical side effects to abate. Take care and do lots of reading about it.

[Jonad724]

Speaking as a survivor of a near fatal attack of VM in 2002 I can safely say yes these after effects sound not exaggerated at all, I had them as well. The reason the medical profession doesn't take VM seriously is because doctors are told in training that its like flu and recovery is quick with few or no after effects. In the end with my GP I had to bluntly ask him how many people he had treated with VM, he did waffle on about it not being serious but in the end he admitted he had never treated anyone with it, I took in the Meningitis Trust, as it was then, downloadable leaflet and he then took me seriously. That leaflet is still on their website so show that to your family and also I try to post on here as often as I can about my experience of being a V M survivor so please a look at those in case they help as well. You can always get your family to direct message me and I'll happily explain just how bad this strain of meningitis can be and how I know from experience that it doesn't need any exaggerating! There's also a Facebook group called 'I had viral meningitis' which is also a great place to see the experience of others and you'll see that what you're suffering post VM is very common. Hope this helps.

[Gabr]

Hi

I had bacterial meningitis 11 months ago & yes your after effects are normal. I had severe balance ,co ordination & mobility problems which are still there but so much improved. As you say It is a feeling of drunkeness, as though you have had a few drinks but are trying to walk in a straight line but not quite managing it! In my experience it has got better but I notice it more when I am tired or in busy situations when there are lots of people around.

Be kind to yourself & allow yourself time to get over what is a really serious illness

I hope this helps

With best wishes for your recovery

[quaillady]

Hi my son had meningitis when he was 18months old totally out of it for 10 days didn't know if he was going to live but thank god he did but has left him with behavioural issues and had a mri on his brain at alder hay hospital and the doctor said that he could have a permament headache but because he was too young when he had meningitis that logan thinks its normal and he also has balance issues and we have had a major battle with our doctors over this hope this helps jenny

[Loftus in reply to quaillady]

This must be so upsetting. My heart goes out to you. Can you ask for a second opinion? I have met some super Doctors at Addenbrookes. There is a list of them on their website. My son had other difficulties which have affected his life. I know its becoming a cliche but I have found that addressing his diet has helped so much. Brain chemistry can be altered by diet for the better. The brain can recover and is more 'flexible' than once thought. Also your son's immune system has been compromised and is still dealing with the virus. If he had IV antibiotics his gut flora may need to be re-established. This is also where serotonin is produced. Improve his gut health and you may improve his mood and immune system. Felicity Corbin Wheeler (Revelation TV) is a nutrition expert and takes emails. You maybe able to source some info from her to help. I have heard that children can benefit from cranial massage for headaches. Do you think this may help? If he still has balance issues and is still a little chap you should be able to have OT Therapy to help with this. Research first on all the above. God Bless x

[Loftus in reply to Loftus]

Hi again- sorry just wanted to add that school was a prolonged nightmare for my fragile son. Attendance in the early years should not be a massive deal. Don't be 'bullied' into doing something that your heart says otherwise. If in his school years the school is making him worse - move him, or if possible teach him at home until he has the strength to cope with the outside pressures. x

[Mareski]

Oh they are quite normal, & although everyone reacts differently most of us have the same lasting effects after meningitis! I had my 1st bout of recurrent viral when I was 21, I am now 49, it took to many LPs which left my back completely scared so much now that even doing them under XRay they still hit nerves! But it took them almost 23 yrs till they finally pulled the virus out & officially diagnosis me with Mollaret's Meningitis! Also almost 8 yrs. ago I had a sever case of bacterial meningitis, that left me clinically dead for 5 mins! Doctors really have no idea the lasting effects of this horrific illness & we as survivors need to band together to show them how many of us all have the same or similar problems that do not go away! I am so sorry for this in your life! I pray the blood over you & all on this site that we may find knowledgeable docs & help in Jesus name amen!

[siobahn]

Hi all u mentioned are what I experienced... The drunk feeling was awful, check out info on vestibular system..... 3 years I

was still suffering with debilitating h aches, drunk feelin, dizziness & lots more...... So I really feel for u, my best advice is take things slowly, don't worry what people say, sod em!

Read a letter from my brain.... I can't remember who originally posted it but it is amazing, i gave it to my friends & family as like u said they do not understand but after reading it they realised w just what I was goin through.... I wish u the very best...

With love

Siobahn x

[chrisdunn]

Sorry but this is normal. I had real problems with coordination, for example putting a top on the milk, also problems with my sight which was a little like being drunk and some what like tunnel vision. You must remember your brain has taken a real beating and like any muscle will take time to heal and may never be quite the same again. I have had a slight character change in that I now find it harder to keep my cool. It may be of help to have a look at my blog which shows my progress bumpyhighway.blogspot.co.uk...

[Captainbeaky]

This sounds so familiar - I get the headaches, light aversion, extreme tiredness, trouble concentrating. Luckily, by balance seems to have righted itself. Character change - yes, I find it difficult to empathise with people now - perhaps this is because I feel so miserable myself.

I will relay all this onto my GP on Thursday.

[Katkinson]

Hi, sorry to hear this, but it really does sound typical. Everyone's recovery seems to be different, but from the symptoms I suffered it all sounds very similar. I had viral meningitis in October 2011, and still get a lot of the symptoms now, only not as severe. If I overdo it, I pay for it. Difficult with children too. I also had a one year old and a three year old when I was diagnosed, and I think my recovery may have been slower due to be a mam. Initially it feels as though there is no light at the end of the tunnel, but although symptoms continue to reoccur the period of feeling well seems to gradually increase over time. I had to leave an active job I loved and still suffer with headaches, dizziness and fatigue now. It's important to pace yourself, although I'm terrible at this.

One thing I found very helpful was physio. I visited a neuro physio and he suggested because I'd been immobile for so long after the illness nerves around my spine particularly my neck were compromised. After two visits where he carefully manipulated and massaged my neck I can honestly say the headaches and dizziness dramatically improved.

I would like to wish your wife a full recovery, it may take a while but hope she gets there.

Good luck.

[iluvdogs]

hello: i have had viral menengitis for 6 months now and people don't understand why it is taking so long to get better. finally i am starting, but i have balance issues. the nuerothapy in my feet were really bad, but starting to get better now. my brain feels fuzzy. i was lucky and never suffered with headaches. i wish you well, but it does take time. i think i still have a couple of months before i feel like myself. lots of luck.

[Loftus]

Jonad has sent you such a great reply. I hope you do as he suggests. x

[Captainbeaky]

Hi there,

Sounds very similar to my symptoms:-

A truly stunning migraine headache,

Poor balance.

Memory loss

Tiredness

Feeling cold all the time.

And delirium ( when at it's very worst)

Not had any foot problems to speak of.

My experience is the same - the medical profession isn't really aware of how debilitating the recovery from VM is.

We did find that migraine medication helped to reduce the headache symptoms, but have a whole array of their own side effects.

The neurologist called the symptoms "minor" and prescribed a trycyclic antidepressant to help with the headaches. There is no way I am taking amytryptylene....

If this is "mild" then I truly am lucky.

I reckon that the medical profession get so many people complaining about this symptom and that problem, that perhaps its difficult to really understand what the patient is going through.

I managed to keep going to work in spite of the symptoms - so perhaps the doc is wondering what the problem is....

The recovery is slow - don't overdo it - rest at the first sign of symptoms.

I overdid it 10 days ago, ignored the early warning, and it's set me back badly. Headaches have returned and I am now very very tired.

So I'm taking it slow...

There is no magic pill unfortunately, only rest and common sense stuff.

Do eat properly, take vitamins etc.

try and get a little gentle excercise - walking the dog helps me.

I'm about to start swimming again - ill report back on how that goes.

I find I need to carefully manage my mental state - try and make some time for yourself for a change...

Good luck.

Mike

[betezel6]

No, your not exaggerating because I've had the same symptoms for many years. I had Bacterial Meningitis when I was 13 months old and now I'm 66 yrs. old and it's still with me. Just keep trying and don't give up!

[Melski]

I have has viral meningitis 4 weeks ago and this feeling of being drunk all the time is horrendous, I even fall up my carpet, it's good to know it's not just me who has this constant feeling. I so far have had no trouble with gp or work but am sure they won't be as understanding when I won't be returning to work as soon as they expected.

I have asked for information leaflets to enclose with my sick note so they have some form of understanding !

[betezel6]

I have had severe headaches, balance problems, coordination and memory problems for many years. Late afternoon is when my symptoms get worse...time to slow down. Many years ago I was told that I had MS so not much help. I took meds for one month and then I stopped because I didn't look forward to giving myself an injection every day. My bacterial meningitis is still with me after many years and I'm going to find out about a vaccination to see if that will help me.

[NorthLeedsJohnny]

I was only saying to my wife and a friend while out walking yesterday that I still have difficulty keeping in a straight line. I had VM in 2011. It took several months for the headaches to subside to a reasonable level. However, I now have impaired hearing in my left ear, constant tinnitus and this (in the scheme of things mild) balance problem. Added to those, my core temp has dropped by around 2°C, so I feel cool most of the time too.

My consultant told me that I'd had a particularly severe strain of the virus and it would take a long time to get over. The headaches and general feeling of being run down and without energy did take some time but, apart from the more or less permanent problems mentioned above, I'm just about back to normal. It takes time