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encephalitis/meningitis relapse

I had viral encephalitis seven years ago (although no virus was traced). I was in hospital for 2 weeks and it took 2 years to recover. For last three weeks many of the symptoms have returned - weak neck, headpain, facial pins and needles/numbness, constant nausea, ear sensitivity and sensations.  i am terrified - the thought of having to go through all of htis again is too much. I saw a neurologist last week who said that he thought it was meningal irritation triggered by a virus. That put my mind at rest and i had two good days. However i've felt terrible today and yesterday. I wonder if any of you kind people have any advice or experience that might help me. Thank you so much, Fiona
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Avatar universal
recurrent encephalitis/meningitis could be on-going neuro Lyme disease.
Avatar universal
Hi Fiona,

I am recovering from an encep. virus myself, so they say.  I have been since Nov. 7th of 2006.  It has been a long haul and I don't really even know if that is what happened either as no L. Puncture was done at hospital day I went to ER with baaaad migraine and neuro is only going on my description of what happened to me then.  It has been a painful and long recovery.  I am starting to have more better days than bad ones....but if I over-do it in any way (which is live the life like I am used to in the past) then I pay for it dearly.  I am at a loss.  I can't see myself living like an 80 yr old woman like this for the rest of my life.  I am frustrated as I know this can be a long recovery.  I just thought I would tell you that you are not alone.  I hope one day I can get back to my normal self.  Take care and I hope you feel better soon.
Avatar universal
Thanks for that info Patsy. There is some overlap in symptoms, but also quite a few distinguishing features. But it's another thing to add to my neurotic checklist!!!
Avatar universal
I sympathize with you, and i think it helps to know that recovery is supposed to be long and difficult - they say about 2 years to get back to normal. Like you, I am a very active person (go running every day and cycling) and also have a v demanding job. At the moment I'm incapable of doing anything other than obsessing on my symptoms. I tried to go into work yesterday, lasted about 3 hours, and then felt sick and faint. I am now going to go back on medication for chronic pain (low dose anti-depressant) whcih certainly helped me when i was originally recovering. Thinking of you. Fiona
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I have a neurotic checklist as well!!  LOL!
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Hi Fiona,

What pain meds (low anti-D) did you go on before.  I am considering going on something.  My doc is wanting to put me on Amitripyline.  I guess it is the "old" "earlier" version of a SSRI but will make a person sleepy.  Maybe I need the sleepiness to help me sleep or make me go to bed when I am tired.  Anyhow I thought I'd give it a try.  Hope you are well.
Avatar universal
Our symptoms definitely mimic one another.  So far, I've not been able to get an official diagnosis.  I am tying to get in with an endo right now.  I keep thinking thyroid, adrenal dysfunction, hormones.  All my neuro tests have been normal.  In addition to the pressure in my head and fullness in my ears, I occassionaly feel as if my nose and lips are numb.  Lately, I have started to experience disturbing internal vibrations escpecially while resting.  Im sorry to hear of your disturbances and hope your find a resolve in the near future.  I hope you will keep me posted if you find the magic doctor and I will do the same.
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Oh my goodness I'm so glad that I am not the only one still suffering (not that I want any of us to be suffering!).  I had viral meningitis a few months ago and I can't believe how horrible I still feel.  I'm currently in graduate school pursuing my doctorate and most days I still feel like I'm swimming...literally swimming. I'm dizzy, disoriented, exhausted, sick to my stomach, suffering from a constant headache, and have memory difficulties. It's hard to believe that I am going to have to push through this whole business.  I worry at times that I may not be able to complete my program because of the difficulties, fatigue, and the physical costs of the stress of the program.  Does it get better???
Avatar universal
I had encephalitis, viral meningitis and shingles in October following a bad bout with H1N1.  I am still not back at work (teacher) and just had a terrible weekend with fever, severe head pain and extreme fatigue.  I refuse to go to the ER because I don't want another lumbar puncture...... it was more painful than giving birth three times!  I am going to see my primary tomorrow to see what is going on.  I am on Tegretol and it seemed to be working okay before this happened.  I was trying to find out if you can get a relapse of my three illnesses?  Thanks for any info anyone can share and hope everyone starts improving.
Avatar universal
How amazing to see that I'm not the only one out here suffering.  I became ill in November 2009 and returned to work parttime in March 2010.  I was never told what happened to me as all my head scans and lumber came back clear, but on process of elimination my doc believes its viral encephalitis.

I'm on 5mg of Amitripyline each night and it has definitely controlled the continuous headaches and doesn't make me too sleepy.

I seem to suffer from the symptons when I get tired and am now in the process of trying to manage my fatigue.  I suffer from insomnia, dizziness and it has definitely effected my ability to concentrate and do my job.  The brain skills I had before have definitely been altered and I hope for them to return, but memory and multitasking are definitely off the agenda for the short term.

I've been told 12-24 months for a full recovery and to learn new habits to deal with everyday situations... like being in a room of people which tends to freak me out a bit... like I'm in my own water bubble and nothing around me is really focused.

My doctor is amazing and is doing everything in his power to get me back to 100% again, but sometimes you need to reevaluate and if changes need to be made, then you just have to make them.

I really hope that there is no chance of relapsing, as the thought of going through this again would be a nightmare.  We are all lucky to be here and its good to know that your not alone.
Avatar universal
Ow God I was so releaved to find this site. I had Viral Meningitis August 1 of 2010.  Took a week to get back to normal and then two weeks to the day the headache started agan and my neck is bugging me. I wanted to cry. I have three children ages 10,6, and 22 months. I hate this. One day I can be fine and the next I have to lay on the floor all day. They did the spinal and a ct scan. The spinal a week later came back viral. Is this going to be something I just have to learn to live with until it finally goes away?
Avatar universal
I was diagnosed in Jan of 2007 very much of the same as mentioned, but
I can't help but notice no one has mentioned reoccurance in a seasonal sense. I seem to have a harder time in the late fall and winter seasons. Is that true for anyone else? Not sure if it is more the stresses of the time of year or???
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