3 months Post Viral Meningitis

Me20 days ago

I am new to this site, please bare with me. I am 3 months post VM, hospitalized for a week. I am a Kaiser patient and as you know when your hospitalized you never see you PCP.

A little history on me: I was diagnosed with Lupus, Reynaurds Phenomenon and Fibromyalgia 19 years ago, Lupus has been in remission for 10 years. I also suffered from severe migraines years ago which i went to ER and received Demoral.

Over the last 6-8 months i had recurrent migraine like headaches, none that made me go to ER, like i used to years ago, but still bad enough to stay in bed. On Aug 6th, I went to Urgent Care about the headache, told it was a migraine and given Imitrex, and follow up with my PCP on Monday. The headache worsen, but still not as intense as a migraine, it just felt different, I explained that to my PCP so she gave me a Toradol injection. I wasn't sure if it helped or not because i was so fatigued from the pain i just wanted to go to bed. She didn't put me off work so the following day I went to work feeling very strange, i was speaking strangely, not making any sense, still with the headache, so i left early. About 4 hours later i got the most excruciating pain ever at the top of my head and left eye, i immediately thought OMG, i have an Aneurysm. Immediately went to ER, they said its just a migraine. Gave me Toradol, didn't work, tried Morphine, still didn't work. They asked me what pain medication have you had that has helped with the migraine, i told them Demerol is the only med that works. They don't give that any more. About 3 hours later, I started hallucinating, my husband demanded they do something, this is not just a migraine, so they did a spinal tap. Yup, she has meningitis so she will be admitted. I was in such pain that i wanted to take a hammer to my head and knock myself out.

My pain was so excruciating, they tried morphine and Toradol, didn't help. Then diladin (not sure how its spelled), which barely touched the pain, so they added Norco every 3 hours, these meds actually made my headache worse. I was told unfortunately that is a side effect. Really! My left eye was bulging in the hospital, it went down but still feels strange at times. I had nausea and vomiting for a week, loss of appetite, extreme thirst and fatigue beyond belief. I still have sensitivity to light and searching for the right words to say. My sciatica was bad while i was in the hospital and I had to be catheterized due to not being able to empty my bladder, and went home with catheter for a 10 days.

The VM exacerbated my fibromyalgia, i live with pain daily but I am so terrified of that excruciating pain to return. After about 3 days home, my toes were numb, then it went to my soles. I experienced this for a month. It has subsided, however my Nuero wants an MRI of my back. My doctor now diagnosed me Severe depression, Anxiety and Panic Attacks, so they placed me on Ativan. With my job being so extremely stressful, sol I ask to be placed off work. I don't get that, why should i have to ask! Don't they realize what i just went through? They told me i should have recovered in 2 weeks, as most people do, however some may take longer. Well i am taking longer.

I am glad I found this site. Reading these post has made me feel that i am not alone. More important, i am not making up what i am feeling. Living with Chronic pain all these years hasn't been easy, but i have coped with it You cannot see that I am in pain, so others don't believe it. But now having had VM, I live in fear of that pain returning. The headache remains on the top of my head, not as severe, but its there.

I have acquired severe depression, anxiety and panic attacks since the VM and now taking medication for them. Its difficult to not be depressed after experiencing such excruciating pain when you've lived with fibromyalgia pain every day for 19 years. I didn't think the fibromyalgia would get worse but it has.

7 Replies

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  • They say VM can't be treated because it usually resolves on its own but don't lose hope maybe one day u will be better just have faith and just think you will be okay soon don't think your sick will be forever okay? :)

    Okay, my physiotherapist said that this bacterial meningitis can't be treated i was really sad i wanted to cry but I can't do that in front of my parents because i really wanted to be like any other people they can walk properly they can use both hand but me no I can't because of my sick but then Again i don't believe what physiotherapist told me because i will be strong enough i'm still hoping this can be cured someday just have faith in God and God will help and guide me/us. It's just the miracle can cured this sickness :)

  • Thank you and I will keep all of you in my prayers.

  • Hi , sorry to hear about your illness. I'm 3 yrs post VM & at times still have reoccurrences . You need to find a dr that is familiar with meningitis. Rest, nutrition , & exercise is paramount in managing this disease . You will get there ! It's just a process. Listen to your body! Over-doing it will def cause set backs . The Paleo diet will help with the proper nutrition needed, gentle yoga is also a huge help. YOU need to take control, Dr's just don't get it! Be careful with all the Meds , as you can be adding more side effects to your already compromised immune system. Get through one day at a time!!! 🙏 Will keep you in my prayers !! 🙏

  • Thank you, I do have faith and trust in God. It's the doctors that frustrating.

    I have so many conditions, Fibromyalgia, Reynaurds, RA, now Osteoporosis, these alone are tough to manage.

  • Hiya Msjo16😍! It's delightful to "meet" you😋! Welcome to the site ! I did write up a reply to your post, but it ended up being awfully long, so I was wondering if you had an email address I could send it to (?) If not, I'd be happy to post it here; just let me know what's most convenient for you😍

  • My email is msjolady55@gmail.com

  • Wonderful😀!!!, thank you😊!! I'll send the email right now😍 Let me know if you don't see it the next time you check your mail😉. Happy Halloween🎃!!!!

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