Worried I may never feel well again?

Hi, I'm brand new to this site, although I am a member of other Healthunlocked forums which I've found to be vitally supportive and helpful. I'm hoping I may finally get some answers now I've plucked up the courage to join.

I have twice been hospitalised with aseptic meningitis, the last time meningo-encephalitis involving inflammation of the membranes and brain itself. I know I'm lucky because I didn't get bacterial meningitis, but unusually, this second time, I was particularly unwell because of neurological changes and I spent a fortnight in hospital on anti-viral medication and in renal failure, and to be honest, I have never really fully recovered.

They still do not know what caused the virus as nothing could be cultured, and I was cleared neurologically. However, I was left for around 9 months with an unexplained narcolepsy-type syndrome where I would fall asleep as any time or place, doing anything, and sleep deeply, for several hours without be able to be roused by any means. My memory has been greatly affected, my cognitive function is poor and I lose my train of though 4 or 5 words into a sentence. I have had to give up my job as a barrister because I simply became incapable of doing anything remotely cerebral after an 11 year successful career prior to this. I am exhausted, stripped of confidence and prone to catching every illness going too.

I just wondered if anyone had been affected in this way by viral/aseptic meningitis (rather than the more serious bacterial type) and if, having contracted it twice in 10 years already, whether I am likely to be struck down by it again? My fear is that if I am, is it likely to increase in severity each time? Part of me can't help wondering if it's more than unluckiness that has seen me diagnosed twice (both times by positive LP and involving long recovery).

Sorry to ramble, and thanks if you have got this far!

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6 Replies

  • Welcome to the forum.

    There are a number of people on this forum who have suffered from viral meningitis more than once, and others who will be able to relate to some of your after-effects.

    It is rare to contract viral meningitis more than once, though as you well know, possible. Often it is an unfortunate co-incidence with no known reason why this should occur. In a few rare cases, recurring viral meningitis can be due to Mollerets Meningitis. This is usually characterised by sudden attacks of meningitis symptoms that usually last between 2- 7 days, separated by symptom free periods lasting weeks, months or years.

    There are a number of people on this forum who have suffered from viral meningitis who, I am sure, will be able to relate to some of your after-effects.

    If you need further information or support do feel free to contact our helpline: helpline@meningitisnow.org

  • I had viral meningitis three times in 11/2 years. First in 2011 and then 2 times in 2012. I am praying I never get it again. I was told that I will have the virus inside me for the rest of my life. They now have me on acyclovir pills that I have to take two times a day. When I came home from the hospital each time (I spent five days each time) I came home with a pic line to disperse the medicine directly into my vein close to my heart. It is the pill form of this medicine that I am taking now. Hope you improve. Hang in there.

  • Hi, I'm so sorry to hear this. That must be so scary for you! Do they know what the cause of the virus was? Was it a specific virus, the thing that they say will always be in there? I know with me they thought it would be the herpes simplex virus as that is the most common cause, but I've never been symptomatic of it, and they weren't able to culture it from the spinal tap either time, so they were left scratching their heads. I still suffer from really intense headaches and photophobia, that never really went away. Will you have to always take the medication? X

  • Mine was herpes viral meningitis. They said that the virus in me had been dormant for forty years and that it can show its' ugly face whenever it wants.

  • I wonder if maybe it's just really good at hiding in me as they couldn't find it. It would explain the recurrence. I really hope the anti-virals keep yours at bay now x

  • So sorry to hear of all you've been through and hope you get lots of support from the forum.I myself ,had bacterial Meningitis but since then have been seeing a medicinal herbalist who is working on strengthening my immune system.Viruses and bacteria only attack when our immune systems are low through stress,overwork,not eating,drinking a good diet,lack of sleep.You will also find that any after effects will worsen with any of these things mentioned.By trying to give your immune system a boost,you will have best chance of a recurrence.Have you been tested for Mollaretts?There are a number of forum members who have this and sure they could help.

    So many of us have lost so much -I lost career as teacher through Meningitis and ME .When I do feel down,I feel bad for complaining as many loose their lives,but it is now my mission to try to ease the suffering of others if I can.

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