Husband suffering from SEVERE headaches one week after diagnosis of Meningitus

[ashleyryan8]

My husband was hospitalized a week ago for Meningitis and treated for Bacterial since his white cell type leaned more towards that. He had 2 Lumbar Punctures and they determined meningitis. No doctor in the hospital could tell us anything about the disease or what the next step is. We were discharged a week later and have been left with no answers, no follow up info and no were to turn for these horrible debilitating headaches and now violent vomiting and pain. He is on dulodid, percoset, toradol, Motrin 800mg, and zofran. We do not want the cocktail of pain meds we want to bottom line answer.

Can anyone help us with what they went through post LP, post Meningitis diagnosis? He has awful anxiety as well that it will onset again any moment and that is scary as well.

Thanks.

[TanP]

Hi there!

Im afraid I dont have any more answers than you seem to. I was discharged from hospital over a week ago after thankfully a stay in hospital. I wasnt given any aftercare or follow up advice and have been searching for answers since.

My headaches continue, i've slept 16 hrs most days since discharge, i have aching in my limbs that comes and goes and huge anxiety that any of these or a new symptom could be the return of the bacterial meningitis.

To try and ease my anxiety i have returned to my GP who has ordered blood tests follow up. No prescriptions or further advice other than to rest, keep hydrated and eat "good" healthy food.

I have been reading about hearing tests and other follow up that should be offered. Would be great to understand what I should be pushing for?

Hope you get the answers we both so obviously need, lying here in the dark sensitive to noise and sound isnt fun!

Stay strong.

Xx

[shellmegandaisy2013]

Hi guys I’m so sorry got all that’s happened at such a scary time I wish I could tell you that for something so serious there’s much more follow up but there just isn’t, my daughter was 2.5 when she got menginococchal septicaemia type B, my daughter was treated very much the same the doctor who saved her life had his head on books to check he was doing the right thing I was visited daily by student nurses and doctors asking questions because it was so unusual, she was in hospital for over 4 weeks due to complications. there was no real follow up bar the hearing and sight test which I had to wait until the preschool offered didn’t get to see a specialist or anything the headache should stop it’s usually a side effect of BM my daughter got reactive arthritis, cellulitis and osteomyelitis which made her knee swell like a ballon and she couldn’t walk properly, I ended up doing a lot of research to find out what when how and why. because of where meningitis forms on the brain it can cause pressure that causes the headaches due to the excess fluid being sent to help protect the brain, meningitis research foundation were amazing for information about how they diagnose to what’s used to combat it, even information on how to recognise the symptoms, you can ask doctors and nurses but they don’t tell you much because they don’t know much sad I know but unfortunately the truth for many, the anxiety will improve over time even as her mother the fear of it coming back was awful took me a while to stop so I can’t say that will go because there’s no guarantee it can’t resurface under different circumstances, if you’ve received antibiotics for 7 days via hospital then you should be ok the recommended dose of antibiotics is 5-7 days dependant on type etc the bug that causes meningitis is most prominent in May and November this when the bug thrives the most. I do suggest if he’s still worried to go back and tell them somethings not right they should of done an mri/ct scan to check if the meningitis has caused other damage other than that asking for a referral to the neurologist via your doctor is the best thing you can do to get some form of follow up, hope this helps a little, feel free to ask me more questions and I’ll do my best to answer any you have if it helps, all the best to you and your husband and hope he’s well again soon xx

[windhorsepixy]

You have full right to answers. They should be able to tell you the specific type of meningitis. I can't believe they discharged him still in such pain, etc. Is he not still on IV antibiotics ? All pretty strange to me. My husband had meningitis which started from listeria - ( bacterial). I had to hook up his IV antibiotics every 4 hours around the clock for 4 weeks AFTER the week in hospital. He was NOT having headaches or vomiting when he was discharged. He lost 20 pounds that week - so he was very weak - That was 16 years ago. He was diagnosed with Parkinson's 3 years ago. It is my belief that it is at least "Parkinsonism" - given a kick-off by the Meningitis. So please be fully informed of what has happened & that he gets all the care he needs. Bless you.

[SHS7]

I would second that you need to insist on a neurologist to follow up and track progress.

Also I’m not sure if this would apply to your husbands case but my mum was given a high dose course of Predniserone (a steroid) 60mg for 6 weeks to be reduced by 10mg per week. The reason given for this was to prevent meningeal scarring.... I’ve got this in my mums notes from the first time she got BM and they have just put her on it again after her second episode of BM. This time round it was only after I reminded them that she might need it as she had it last time. At first they said ‘no, she already had IV steroids for a few days’, but then changed their minds the next day. I don’t really think there are a lot of specialists with this type of thing so it pays off to come on here and do other research into what could help as sometimes they need a little reminder/nudge in the right direction.

[Caz5]

Hello,

As others have written it is not unusual to be discharged from hospital without a clear picture of what happens next. I was taken in ill Xmas eve 2 years ago. I was in hospital for two weeks and off work for 4 months. I was advised to contact my GP for further care but my first appointment was not great.

The turning point was seeking an appointment with a GP I had confidence in and taking my partner with me (as he had been with me through the onset of meningitis and the trip to A&E he had information that I was completely unaware of as I had been so out of it). As I understand it, there should be a follow up with a neurologist and a hearing test as a minimum.

It is a challenge to take on the medical 'experts' when you are suffering headaches, anxiety and fatigue.

I would suggest talking to the Meningitis Now helpline and reading through the factsheets in the resources section of their website and then writing questions down for your GP. And if you have time find out about local community resources such as neurological rehab team, a local Headway group, community volunteer organisation who can help with transport to appointments.

Good luck and keep in touch. xx

[bexiiee_b]

Hey - I just skimmed through the replies but I wanted to get in touch and say that the LP results will be a while, they'll be doing cultures to determine exactly what strain it is and the best way to treat. They usually go straight onto antibiotics to treat herpes virus as that's the most common type.

I learnt this from when I was hospitalised in 2012. It's horrific, but I've been fine ever since!

I hope things get better soon

[ashleyryan8 in reply to bexiiee_b]

Thanks and glad you are feeling better!

[Runnerma]

Hi! Unfortunately, many healthcare providers don't know much about or how to the many after effects of bacterial meningitis. I contacted it in Dec 2015. I had to insist on referral to a neurologist. I ended up getting a jerk who made me feel like I was losing my mind. I did find a young neurologist who is helping me work through the issues (balance, hearing loss, anxiety, problems with recall) and is very supportive. Meningitis can result in an injury to the brain that can have temporary or lasting effects. Stress of any type makes any things worse. Sleep is a good thing. Be persistent, as positive as you can and patient. Recovery takes time!

[ashleyryan8]

So we are getting some light at the end of this dark dark tunnel. We spoke with an ID doctor who mentioned Mollaret's Meningitis. Basically since my husband has now had this awful disease within one year 4/16 and 11/17 he can qualify for possible MM. The ID also said he thinks he had a Cyst on his brain which ruptured causing leakage into his blood stream and inflaming the meninges. The reason we never saw the cysts was because it had already burst causing the leakage. This causing the aseptic diagnosis. I think this is a start in the right direction of trying to find treatment and how to cope.

After being in the hospital with my husband and seeing the lack of compassion and care I have decided to pursue a career in the nursing/medical field. Google, and UptoDate were my best friends when trying to understand this whole ordeal.

Thank you to those who responded. We are still following up with Nuero, ID and Audiology.