Meningitis?: Hi, my name is Adrienne. I've... - Meningitis Now

Meningitis Now

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Hi, my name is Adrienne. I've been having similar symptoms for 1 month now. One day I woke up with this foggy feeling with a severe headache. I can't focus anymore and I have stiff neck as well. The headaches are accompanied with this pressure around my head. It feels like a tight band is wrapped around my head. Its hard for me to get out of bed in the morning. I don't know what to do. My doctor thought it was migraines and that I have muscle aches. I was prescribed muscle relaxers and migraine medication. Neither work or make a difference. Next, I suggested I may have a sinus infection, so I was prescribed antibiotics, so far nothing has changed. I'm so scared. It feels like my brain is being squeezed really hard. I've been to the ER so many times I lost count. They just send me home with prescriptions for headaches. Any advice for me?

9 Replies

I don’t know whether it is meningitis or not. I too had a similar experience with numerous GP’s telling me it was migraines brought on by anxiety, I refused to accept that label as I knew it was something more serious.

I ended up paying to see a private neurologist, best £250 I ever spent. They wrote me out a comprehensive care plan on diet, exercise and most importantly medication, they also prompted my GP to signpost me to more appropriate services within the hospital that could help with my diagnosis.

There is hope, I am now post VM by 9 months and I’m back to enjoying work, driving and socialising again. I still need to take the odd day of relaxing but on the whole I’m in a good place.

Hope this helps!!

Hey there!

Very happy to hear that you’re back to enjoying your usual lifestyle again, I hope we all do soon enough..

Can you please tell us more about the care plan including diet, exercise and medication? It definitely differs from case to case but I would love to hear about the tips that helped you feel better..

How long exactly did it take you to start feeling progress?

Thanks a lot

Message is at the bottom of this thread 🙈

Hey Adrienne,

Unfortunately we all kind of have the same experience of being sent home with painkillers.. I’m still not sure why but.. anyway

You should rest in bed.. as boring as this may sound but resting in bed is really needed.. I’m still not feeling well.. I’ve been diagnosed with VM about a month and a half ago.. I’m not very happy because I haven’t felt better.. I wake up every day with pressure in my ear and unbearable headaches accompanied with nausea and dizziness.. I haven’t been going to work.. I live alone, I’m bored and I’m sick and I’m praying this all ends soon..

I’m not scaring you and I don’t mean to send you negative vibes I just want you to have an idea so that you don’t freak out.. at least I felt better when I read how other people experience the same things I do..

Good luck, I’m praying for you, praying for all of us


Okay I will start with the food. I have completely changed my diet to one which is a lot more healthier, fresh veg and clean meat, I try to avoid processed carbs as well. I eat a lot of sushi ( which I taught myself to make whilst off work for 3 month ). To you this list may seem normal but before I was unwell I could eat what I wanted and it wouldn’t affect me.

Exercise has been the toughest lesson I have learnt. Before VM I was at the gym 4 times a week, playing football 2 and golf. All that has stopped now.

When I had good days I would play football or golf followed by 3/4 days of a relapse, headaches, confusion and a vacantness to the world. I do a lot of walking to and from work which I enjoy and that doesn’t seem to affect me now l. So cutting out all heavy exercise has help my brain the rest.

My medication has been amitryptilin just for the headaches. Start on 10mg and now after 3 months I am on 50mg. At the start I found it knocked me out but now I am fine. It has allowed me to become me again and start doing the things I love.

Sorry if that’s all a bit jumbled!!

I’m happy to answer any more questions the best that I can 👍

Get a lumbar tap at e.r. Only way to tell, and I felt nothing. Sounds scary but not. They numb u up first. Next to your head and neck pain it is nothing!There r symptoms and precursor to meningitis. I was sick and they tested me for the flu.A couple weeks before I was admitted. Tell them u need to be tested with all your symptoms u r pretty sure it is meningitis. U r contagious if so, till treated . This should not be taken lightly. The medical profession seems to know little about it. Best of luck in care in your healing. With your description u r infected!

Before he ended up at the emergency room with VM my husband had been to his doctor countless times. He had the flu they said. Don’t wait until it’s too late. I thought our MD was fab, but he missed VM. With a spinal tap they can tell right away. Good luck!

Hmchs in reply to krussell39

Unfortunately many of us with Mollaret's Meningitis remain undiagnosed even after a lumbar puncture. The virus or whatever is causing the (viral/recurrent) meningitis does not always show up. I want to encourage you that you WILL GET BETTER. hang in there!

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

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