New to community & this is my meningitis story - Meningitis Now

Meningitis Now

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New to community & this is my meningitis story

Rayvenjade profile image
5 Replies

In October of 2014 I became ill with what I thought was the flu. My temp was 102.9 for about 24 hrs before going to an urgent care facility. I live in the US.

While at the facility, I was taken to a room & was asked to submit a UA. Not long after a nurse came in & stated I had signs of a kidney infection though I had no symptoms. They wanted me to have an IV dose of antibiotics before sending me home on the oral Rx. I remember after the IV started I was so cold. The nurse brought me a blanket & I woke up in the ER of a hospital with a tube down my throat. I recall hearing my temp spiked to 107.6 & stopped breathing. I don't remember anything except how cold I was. Once revived, they removed the tube & that's when I noticed the headache. I was taken to ICU where a nurse never left my side. They put in a central line in my neck. I remember them telling me my kidneys were shutting down, my heart rate irrational, & bp wouldn't stabilize. I wore my sunglasses while in ICU. The headaches were monstrous, I didn't want food, my temp was 101.2 & I felt awful. I was pumped so full of stuff I swelled! Once stabilized I went to a regular hospital room & after a couple of days was told about the numerous tests & the results of them.

I was diagnosed with meningitis! Wth?!? Where did that come from?

I was given a book of paperwork for my PCP- my regular doc with an appointment. I spent a total of 5 days in the hospital. I was also told my iron level was so low my red blood cells were exploding. I took 1000mg of iron daily for a little over a month & pain medication for the headaches. I also learned my hypothyroidism was gone!

The headaches finally subsided in January.

When I get a headache now it's really bad. I've also learned that I have memories missing. This I find very disconcerting. Is that normal with meningitis? Memory loss & bad headaches are the leftovers from that experience. I also lost about 8 lbs on top of the 9 gained from all the stuff pumped in me in ICU, which I lost before leaving hospital. There isn't much information on meningitis that I found. I barely remember the spinal tap.

All I know is my doc told me I was very lucky to be alive because my viral load was off the charts. She said if I had been at home they wouldn't have revived me. It took from October to January for me to fully recover.

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Rayvenjade
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5 Replies
Chicagogirl profile image
Chicagogirl

Hello Rayvenjade

I contracted meningitis encephalitis in Sept.2016. Mine was West Nile virus. I also ended up in the hospital for six days. I lost 15 pounds in that time and I have NO memories of getting to and staying in the hospital. Im glad I dont remember the lumbar puncture! I ended up in acute rehab for 10 days and then outpatient. Sounds like you were lucky to make it to the hospital.

It sounds like you are recovered ? Im interested because I still have balance issues, weakness in my right hand, and some retinal damage. I hope u r doing well and Im trying to get some idea of how long recovery takes.

Regards

CG

Rayvenjade profile image
Rayvenjade in reply toChicagogirl

It took me months to recover. October to January of 2015 for my energy level to come back & headaches to subside. I have recently learned that I am missing some memories as well.

I can't imagine the west Nile version, Chicagogirl! Hugs! I'm sure it's been awful! I slept so much I don't remember balance issue......I'm a klutz by nature so I'm not sure I'd have registered it to the meningitis. I hope you get better completely soon!

Hugs!

Rayvenjade profile image
Rayvenjade in reply toChicagogirl

I just had a memory recall! I did have balance problems from severe anemia.

Chicagogirl profile image
Chicagogirl in reply toRayvenjade

Wow. I had no idea anemia could cause that. I assume it is gone now? Good for you 😊

Rayvenjade profile image
Rayvenjade in reply toChicagogirl

Oh yes! Anemia has horrible side effects.

When I left the hospital, recovering from the meningitis, I was on 1000mg daily of iron. It took about a full month to reach normal levels. I was then told to take the one iron pill daily until my cycle stopped completely due to menopause.. yeah, I'm still taking an iron supplement but I'm on my 3 Ed month without a cycle. I've gone up to 5 months without, then it showed up again. I haven't been regular in about a year now so it will be stopped completely soon I'm sure. My cycles when I have them are very heavy & last 5-7+ days.

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