Meningitis in your words

Elizabeth Roberts' story

  • Location: USA
  • Categories: Viral
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Headaches
Elizabeth Roberts

September 1st, 2019 I woke up feeling extremely weak like I had never felt before. I knew I was sick so I went to the walk in clinic... somehow they thought I had a urinary tract infection.

To this day I cannot remember what I complained about but it wasn't anything related to peeing. I took medicine and then the following 4 days I developed a massive headache. I would take over the counter medication but it wouldn't take it away. I called the doctor, they said to stop taking the medicine for the UTI because I didn't have one!

I continued to go to work but was in very bad shape. I could barely walk and drive but I did it, I pushed through because I thought I just had a very bad migraine. My hands would get pale and purple and I showed some co-workers but they didn't think it was concerning.

"I begged him to take me to the ER."

On September 5th, I went to the doctor again and begged them to help me. They gave me toradol and said I should feel relief for my head in a couple hours. 4-5 hours went by, my head felt worse, i was in bed with 2 big blankets on me and my husband hugging me. I begged him to take me to the ER.

The ER doctors were surprisingly very good and thought it was meningitis. They said they'd do the lumbar puncture (LP) as a last resort after testing. They drew blood, scanned my brain, blood pressure everything was fine. They decided it was time for the LP. At this point I was running a fever and they were giving me medicine to lower it. They came back and said I had meningitis and put me on antibiotic via IV. When they figured out it was viral meningitis (caused by enterovirus) they stopped the antibiotic and focused on pain and fever management. I couldn't stand to open my eyes and just laid there.

I was in the hospital for 5 days and everything they gave me (steroids, morphine and percocet) still didn't help with my headache. I was well enough to be discharged and I was told in about 5 days I would be perfectly fine. I could barely walk, I struggled with speech, I hated the light, my neck was stiff as a board, my joints from my hips to my ankles hurt, fatigued beyond belief.

6 months later, my neck is still stiff /painful and I get 2-3 migraines a week no fail. I have seen a second neurologist and I've been told I don't have brain damage. He prescribed some pain meds as needed and physical therapy. The PT people say my neck, back muscles are extremely tight and stiff. I have good range of motion but the tightness is causing all kinds of pain. I also have extremely week neck muscles and arms. I am hopeful that this will help with some issues. Also grateful that I did not give up and keep searching for answers. I don't feel like my pre-meningitis self but I am definitely finally starting to feel a little better. I have accepted this new normal but continue to look for answers on why I feel bad.

Elizabeth Aurora Roberts
March 2020

Detailed information about the after effects of meningitis

Many of the after effects of meningitis aren't immediately obvious. In this blog, Support Manager Cat explains how we can help.
Stories that inspire us to create a world free from the diseases.

Whether you are living with the after effects of the diseases or coping with the death of a loved one, we are here for you.

Provide a lifeline for those in need
Provide a lifeline for those in need
£6/€7.20/$8 pays for a 30 minute call from a trained support officer.

They listen to the issues faced by someone struggling with the impact of meningitis, and provide detailed information and support.
Membership and support

The MRF Membership and Support team are here for you for any questions you might have about meningitis and septicaemia and their effects on you, or your family and friends.

Tel: Helpline UK 080 8800 3344 Ireland 1800 41 33 44