Viral meningitis

[kelpie25]

I apologise in advance for this complicated posting. I am looking for answers, rather than sympathy.

After 3 to 4 days of a headache gradually getting worse, my face drooping completely on the right side in the morning of day 4, on day 5 I contacted the GP surgery. The concern was, at age 67, I had suffered a stroke (I was 99.99% certain i hadn't) so was advised to call 999. Following the arrival of 3 paramedics, and about 25 mins of various questions, i was taken to the local hospital, where i was eventually admitted from A & E on 1 Jun. CAT scan was clear for a stroke, and a chest infection ruled out, with a chest Xray, as the source of high temperature (I wasn't even aware of this, i just felt lousy). 2 IV medications were started, which I later learnt were one each for bacterial and viral meningitis. On 2 Jun, i had a lumbar puncture (attempt 5 was successful, the main problem being scar tissue from 3 earlier spinal operations) and it was thought the CSF was clear, but the next day the report was it contained some protein cells. BM med was stopped, VM IV continued, but when transferred to a ward from the Observation Ward late evening, it changed to oral antiviral next morning. My discharge summary gave diagnoses of viral meningitis, labyrinthitis and Bell's Palsy (BP) (grade 5 out of 6). I was to be discharged late afternoon on 5 Jun. After several hours of (their) messing around, the microbiology registrar cancelled the discharge just as i was leaving. The virus causing my problems was varicella zoster (chicken pox) so i had to have IV antiviral for 10 days. I came home on the 8th Jun and community nurses completed the course of aciclovar three times a day until Fri morning. I have had no follow up OP. It seems the consensus is having had several high dose steroid courses in the previous 5 months, not actually ever getting off completely, for lichen planus, this was enough to reduce my immunity to a low level (i have been on immunesuppressants for 13 years for myasthenia MG). At no stage was i told the VZV dormant in my body since a 5 year-old, and abdominal shingles about 10 years ago, could resurrect itself and cause VM, or the other 2 recent conditions. Does anyone know how common this is? I'd always fought against steroids for the MG, as i considered them a filthy drug with numerous side effects, and my neurologist respected my decision. Ironically because of the BP, I had to have 10 days of 60mg prednisolone from 4 Jun! My face has amost recoveted, but i still have an almost permanent headache, which varies in severity, and am not sleeping properly, and constantly tired. I had to resort to a dictionary today, unheard of usually, etc Will all/some/none of this improve? I did have a brain/head MRI in mid-July but don't know the result despite several requests and using the PALS service who were useless! I'm now trying to view all my hospital records, as having requested a copy of the recent CAT and MRI scans ( as well as previous ones, just for comparison), I'm told they will be encrypted!!! I thought I'd take them to my next MG OP appointment.

i just want to get back to my previous health and mobility, which although compromised due to pre-existing conditions, i knew how to manage with planning and pacing.

Thanks for reading.

[StrawberryCream]

Hi Kelpie

Gosh you have been coping with such a lot. Having meningitis on top of your pre existing conditions will have been a challenge for your body to deal with. I had bacterial meningitis as.......I will say.......a mature adult and I think it is takes a toll on us in a different way to those a bit younger especially if we already have other health issues. Lots of Drs think that viral meningitis is not much worse than flu but there are a lot of people on this forum who have had viral meningitis and will tell you otherwise. It can take a long time to recover from and for some has long term effects. Ongoing headaches is a common problem. Unfortunately follow up is lacking for most post meningitis because of the lack of understanding about it within the health service. Have you contacted the Meningitis Now helpline as they are a brilliant source of support, understanding information and do offer some other services that maybe of benefit to you.

Very best wishes

[1251]

I am so sorry to hear of your health problems .I myself had meningitis last June and my health has suffered terrible .Headaches 24/7 only to be not taken seriously by doctors.I was so desperate I went to see a doctor privately and he has taken over he is fantastic .I am having all sorts of tests I can't name everything I would be here all day .What I am trying to say to you is you need to find a doctor some where who will take you on to get to the bottom of it.I wish I could help more and I wish all the best . 1251

[Vespalover]

I had the same as you. Shingles but within a week the zoster varicella virus invaded my spine and I had V.M. In hospital for 10 days. Released but still in tremendous pain, unable to look at light and unable to watch TV even as too much to track.

Went to a neurologist who did tests and I where I had to follow a ball on a screen with my eyes from left to right then top to bottom. Could not follow the ball. They tracked my eye movements and I was behind the ball in jerky movements. So he said I have a brain injury. Gave me some eye exercises. I also wear eye covers for sleeping which helps.

More importantly, I am on Acyclivir 3 times a day profolactically to stop any recurrence of the shingles/zoster.

It too me one year to be able to exercise without headache. I realised that stress or social situations which take a lot of tracking or brainwork give me headaches which can lay me out so I learn to listen to that and dial back stress.

Give your body time to repair. You have suffered a serious brain injury!

Good luck.

Ana