My Plea

By Christine H.

The purpose is to serve as a plea. This is a plea for someone out there to HEAR, LISTEN, and use this information to ACT. This is the voice of one, the voice for many, the voice of all who are suffering from Mollaret’s Meningitis.

My name is Christine H. I am a 33 year old female with three young children. I am a registered nurse currently working in intensive care. My life was normal and happy. Historically, I was relatively healthy and free from any acute or chronic health care issues. Ironically, I was healthier than I had ever been in my life. I was working out 3-5 days a week at a local gym, and had made many dietary changes leading to significant weight loss. I was more active, and had more energy than I had ever experienced. One weekend, everything changed.

I believe life stress brought on this illness. I finished a shift at work feeling rough. I had pain in my shoulders, neck and head. I attributed this to the physical requirements of lifting patients. Later that night, I woke with the most severe pain in my neck and head I had ever felt in my life. It was a pulsating pain with pressure in my eyes. The pain intensified with any movement or position changes. I told myself, “This must be what a migraine feels like.” For three days I suffered hoping the pain would resolve. When it didn’t, and I could no longer take the pain, I reported to the emergency department. A lumber puncture confirmed I had viral meningitis. Fast forward, my spinal fluid tested positive for HSV II. I had been, and remain, an asymptomatic carrier to the viral disease, apart from its manifestations of recurrent meningitis.

Characteristically, it acts just as HSV II does, but without genital lesions. I have suffered from 5 bouts in 2 years requiring hospitalizations, and innumerous “mini flares” in between. I’m more often than not in a state of feeling viral. I run low grade temperatures off and on, I am nauseated, motion sick, off balance and have short term memory impairment. My attention span is shortened. I am in pain, and any activity as simple as housekeeping makes this worse. I am cold always, and the list goes on. The worst of it; my quality of life has changed entirely. Life is not the same. I struggle for energy to make it through the day. It takes any and all energy reserve to work to support my children. I am depleted. There is rarely any energy left for anything extra. I’m pushing when I should rest because I have to, and I will continue to do so until I no longer can. I have dedicated my life to my family, and to caring for others in their deepest time of need. Even in those times when I feel any moment I could collapse at their bedside.

I live in a rural area with limited access to healthcare, but inversely, I fear not enough is known about this disease either way regardless of my location. I wish for a Dr. to push the envelope. Push past the small amount of literature out there, stop with the “self limiting” nonsense. Help me. Help us. Instead of solely existing, I wish to live once again. I am lost and I don’t know what to do.

5 Comments

Marisa on May 10, 2018 at 10:11 am

Very, very well said. Your fellow sufferer.

David on May 12, 2018 at 3:37 pm

I to suffer with the same problems I believe that the best that we can do is hope for a better day everyday and then we can find natural ways in which to alleviate the pains that come with us. I have also additional serious head trauma problems and then is a nightmare to work everyday and have to get up with pain and go to bed with pain. I have found ways to tolerate it and to treat it so that I am not addicted to any man-made drugs and that I’m not addicted to any natural drugs. But there will always be pain. I pray that you will find your way as well.
Reply
- Christine on May 13, 2018 at 3:49 am
  
  Thank you for sharing. The pain is a nightmare. I will pray for you and all sufferers.
  Reply

Helene on August 18, 2019 at 3:21 am

I have never read someone articulate exactly, what i experience! The part about the pulsing pain made worse with every movement; yes! the worst pain ever (i just pray to throw up; does help!). I’ve now had this for 20 years. sometimes every 2 or 3 weeks!… I’ve also had multiple concussions, so hard to know what has caused what, but mine always correlates with herpes outbreaks when i’ve overdone (which is reall just “living normally” since i’m considered to also have Chronic Fatigue Syndrome–and now Environmetal Illness the last 4 years as well). I wish i could tolerate meds, but now react to all meds, supplements, etc. (tho often take a crumb; literally) of Tylenol to get through. for me, not overdoing, not drinking, and sadly not being in the sun (or even having sex) is key. i am still determined to find a way to do those things without getting the meningitis one day! So grateful that this rare site exists! Here’s to healing for us all!

Susan Scribner on January 23, 2020 at 9:52 am

I have had 5 episodes of reoccurring viral meningitis. I have had multiple tests which show I am negative to all viruses connected to Mollaret’s
My first occurrence was 8 years ago and it was extreme. It took about 5 days of low grade fever, head aches, and night chills to manifest itself. At that point my head was exploding and my fever was 104. I could not move my neck. It was excruciating.
My doctor knew I was expierencing headaches and thought I was developing migraines.
When my husband contacted him he immediately had me go to the ER.
I was given pain mess and eventually a lumbar puncture.
I was packed in ice to reduce the fever. It was frightening.
I stayed in the hospital for a week. I took 6 weeks off from work, but still suffered symptoms after returning. I am a teacher and a mother of four. Just raising my voice created a headache; stress, and noice also contributed to head pain.
I had the same symptoms 2 years later, almost the same time of year. It was during a severe North Eatern Storm. It was eerie how the symptoms built up so similar to my earlier bout of meningitis. When the weather promitted we went to the ER.
They chose not to do a lumbar feeling the risk was not necessary. They diagnosed a second episode of viral meningitis.
I was free of the virus for 4 years and hospitalized with a lumbar puncture confirming viral with no apparent causes.
Another 2 years lapse and I recently was hospitalized again with a lumbar and a weeks stay with no answers again.
Here is the scary part. I returned to work and in my weaken state caught a case of strep 6 weeks later. It morphed into a severe meningitis with fevers of 103.7 and horrible headaches.
I am home from work hoping to mend. I am frustrated with no avenues for help.
My primary care doctor is at a loss. Infectious disease doctor has no answers.
I have also had a neurologist who is puzzled.
I live near NYC.
I am hoping to find a specialist who will try and help.

My Plea

My Plea

5 Comments

Submit a Comment Cancel reply