Ongoing jaw locking and pain

[Hopey1980]

I was diagnosed with VM in October 2016 and 7 months later my head still feels pressure, head aches and my jaw hurts and locks up. Anyone else have this problem? Try explaining to others I get the response "you should be over that now". I wish!

[Lisa4]

Hi I was diagnosed with VM 8 months ago, I too have pressure in my head, head aches and my jaw locks up on a regular basis. I've been to the doctors, she was very sympathetic and explained it's still early days and I went back to work very quickly and resumed normal duties far too soon. Be kind to yourself, call the help line they are great at reassuring you. The symptoms will go but you need to rest when your body tells you to. Remind people this is a life changing illness!

[Alibob]

Hi. I too am still suffering pressure headaches, and tiredness. I have been having cranial osteopathy which I feel has helped not only with the symptoms but also that the practitioner has really explained things to me about why I'm still feeling the way I am. If possible I would try this, it has helped. But like everyone who is recovering says, you have to give it time! Hope you soon feel much better.

[Jonad724]

I had near fatal VM in 2002 and I got to the point of wanting to physically hurt people when they said you should be over that now, I would have done too had I not been so tired! This is based on the routine recovery from non VM strains taking a few weeks rather than the months and sometimes years it can take to recover from VM. The medical profession in particular doesn't really understand VM at all so I got the 'you've been post meningitis for two weeks now so you should be better' routine from my GP. It took me having to push him on how many people he had treated with VM (none) to get him to realise that I was a better expert on my symptoms and after effects than he was. I too have some head pressure, a constant headache and other side effects although not jaw locking but meningitis is a traumatic event for the brain and so it can have odd side effects which again the medical profession may not understand although it's a job to get them to admit to it sometimes.

[MinkyD]

My daughter had bacterial meningitis last Novemeber and complains of her jaw aching and clicking, like it's not in the right place.

She mentioned this to her consultant (in Feb) and he said it was down to anxiety (along with the headaches, the back aches and other symptoms she was and still is having). I'm not so sure myself that it is anxiety, she seems more relaxed since the meningitis and surely, after having your brain and spinal cord attacked in a way that you almost die, you would have some nerve damage?

She recently went back to see the consultant who has now ordered a MRI scan, as she has left sided weakness and balance problems too (along with a blind spot in her eye).

[Mdroney]

Hi , 4 yrs post VM, I still have lingering symptoms if I push myself. I eat very healthy fresh foods only, lots of water & sleep 8 hours a night. I also exercise almost every day, with a yoga regimen. I drink a smoothie in the morning composed of bone broth protein powder, fruits, cinnamon, turmeric, & Kale. I am under chiropractic care, which has helped my nervous system tremendously. Dont give up, be good to yourself , Accept the new normal ! 🙏 Good luck

[Hopey1980 in reply to Mdroney]

Thanks. This helps knowing I'm not alone.

[Hopey1980]

Does anyone have a GP with experience with Meningitis? I know meningitis attacks the nervous system and it sounds like any type of meningitis leaves behind effects in the head area far longer than anywhere else. Even getting a simple cold literally feels different.

[abracad]

Finding a GP with experience of post VM patients is a bit of a lottery. But I now see it as our chance to give them that experience. And we should keep going back about our symptoms so they can check things out & advise treatments for them. Also it makes sure this is on your medical notes. For the Jaw, look up on utube "exercises for TMJ pain" Apparently the jaw is quite a delicate joint so you have to be gentle. Good luck.