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Recurrence of Encephalitis

dbrowncsuaedu
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I am wondering if anyone here has had a similar experience to mine, or if perhaps I just have a new case. I had a relative minor case (compared to many on this list) -- I just toughed it out with some anti-inflamatories for about a month, and the headache and spaciness went away. I thought for good. Its been four or five years now and all of a sudden, here it is again. Does it recur, or would this have to be a whole new case? Has anyone had such a recurrence?

Explore topics in this discussion:

Dizziness Seizures Multiple sclerosis West nile virus Fever Aphasia Encephalomyelitis Encephalitis Paralysis

12 replies

WendyStation

Hello dbrowncsuaedu, and welcome to Encephalitis Global. This is rare... not impossible, but rare... to have encephalitis more than once. What type of encephalitis have you been diagnosed with?
How are you feeling, now?

dbrowncsuaedu

That is what I thought -- that getting it twice would be a probability stretch. So, I am wondering if anyone else had the problem of it going completely into remission for years and then coming back in a milder form.

I am holding my own -- the headache comes and goes -- far worse in the morning.

Take care -- dave

WendyStation

Ah... what type of encephalitis were you diagnosed with, Dave? I'm not certain of taking anti-inflammatory medication for encephalitis?

dbrowncsuaedu

It was back when the west nile stuff was going around fairly heavily. I live out in the country and the chances of it be acquine was quite high. However, they never did further diagnose my case. Not sure why. Perhaps because it was not one of the most serious cases. Spinal tap determined that it was viral.

I got over it in about a month, which was about as expected from what we read at the time.

Joey_sMom

Viral encephalitis is the term commonly used when no antibodies to known types of encephalitis (such as West Nile or equine) are found.

Since a recurrence of encephalitis is so rare and headaches can occur as a result of many things, what testing did your physician do before diagnosing you with encephalitis a second time?

Vicky
Caregiver

dannon

Dave,
If you had West Nile Encephalitis, your body should be immune now to the West Nile Virus.
Its this fact, which would allow a doctor to tell if you were infected with the West Nile Virus (pretty much for the rest of your life) because you would now carry an antibody for it.

Encephalitis is deadly. some forms carry a 100% mortality rate.
If there is the slightest chance you have encephalitis, you need immediate medical attention.
-dannon

dannon

Dave,
While a test of your blood or spinal fluid can tell if you have fought-off the West Nile Virus, that's all it shows. It doesn't show that you had encephalitis from West Nile. Millions of people could show they have antibodies to West Nile and never even know they had been sick from it.
But if West Nile Encephalitis is what you had, there has been no findings so far that show that virus can stay in someone's system, and all the findings (I've seen) show that a person develops immunity to it after being exposed to it.
Again, if you suspect encephalitis - go directly to your doctor or an emergency room!
-dannon

dbrowncsuaedu

That is really why I am asking the question about latency and recurrence. I have had symptoms that I can only relate back to my bout with encephalitis several years ago. I was not able to get into my doctor and do not want to go to the ER unless it is totally necessary (there are downsides, as most of you know). My doctor said that because I had E prior to this that I could be susceptible to a recurrence. She is a GP, though not a specialist. I will see her this coming week for some blood work and other things, but I want to be very conservative with treatment. There really was no treatment before anyway other than just rest and anti-inflamants. I appreciate your concern and am keeping a close eye on things; but am feeling fairly good right now.

jancoen1

I got West Nile Fever 2 years ago and after the 2 weeks of serious stuff (dizziness, headache, blinding headache when light hits eyes, rash), the compelling fatigue, aches at top and base of spine, and headaches lasted another year. After one year of being OK, the fatigue, headaches, and aches at top and base of spine have come back. It could have been a reinfection (I had many mosquito bites - hadn't learned my lesson) but almost no infections reported by CDC in my state (CO) or just that, being a virus, it hides in your body and waits for an opportunity to come back. I too could not find information about recurrence of the disease other than the generally stated assumption that one builds antibodies and it would not be expected to come back. My doctor's (general physician) opinion was that it was not expected to return in its severe form.

IngridGuerci

In my humble opinion, the doctors, especially the GPs, know nothing about encephalitis and wouldn't really know about it until they got it.

Ingrid

Char62

I have had encephalitis twice, twelve years apart. The first was 19 years ago and it went undiagnosed and untreated. My head was so swollen I couldn't brush my hair. It was a long recovery but after 9 years I was able to return to work full time. Then, 7 years ago I was diagnosed with a roccurence of encephalitis but no spinal tap was done and again I received no treatment. I had seizures, parkinsonism, aphasia, and paralysis after the second bout. All of these symptoms have gone into remission or have completely disappeared. But if I start with a headache or head swelling, I take anti-inflammatories and power sleep.

Dan_

This may be a bit of a stretch, but the only recurring (and potentially chronic) form of encephalitis I know about is ADEM (acute disseminated encephalomyelitis). This, being an autoimmune caused E, takes a very special specialist to identify and treat properly.
However, if the headaches ever get significantly worse or you develop a fever or vomit simultaneously, you should get yourself to a doctor ASAP. Also, one thing to have friends and family look out for are changes in mood, behavior, etc. as things can be signs of a more severe E just beginning.
Recovery from ADEM is usually quick and complete especially in adolescent to young adult patients, but, chronic ADEM and multiple sclerosis are virtually identical. So please be careful.

.Dan

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