Living in the Shadow

Living in the Shadow

In the spring of 1997 I had completed my first triathlon sprint. I was young and fit and full of life! I was living alone and woke up a week after the event feeling fine. At work, a headache began as did a sharp pain in my back. By the end of the day I was hardly able to walk home. That night I went to the emergency department where I had a fever, sensitivity to light and difficulty moving my head and neck. They performed a lumbar puncture, CT scan and blood work among other tests I can hardly remember. The resulting diagnosis was meningitis. They moved me to an isolated room until they were able to determine if it was viral or bacterial. Days of rest and nothing are in the petri dish ~ it must be viral. Wow that was terrible ~ I thought. Happy to get over that and move on as quickly as possible!

Spring of 1998, I completed another triathlon sprint. Feeling great it was my celebration of life and health! One week later ~ guess what??? Yes! It happened again! I was back in hospital with the exact same symptoms! The only difference was the treatment. They did not think I could have meningitis again and so left me in the waiting area for 8 hours. Thinking it was just a headache and I would eventually either go home or perhaps the headache would go away. After vomiting for hours and becoming almost paralyzed from my brain swelling they took me in. They gave me a LP ~ actually they gave me 2 because the first person was new at it and missed. So not a fun moment! Seeing the clear fluid and no bubble or blood they were sure I was fine. However, when the results came back, they were pale faced and apologetic. I received a quiet room and they had to determine how many people I may have infected over the 8 hour period if it was bacterial! days later they determined that it was in fact Mollarets Meningitis. The recovery period for this was much longer. I was in the hospital for 3 weeks with seizures, uncontrolled fever, vomiting, sensitivity to light and headache. When I was sent home I relapsed. But instead of going to Hospital again, decided to just stay home and stay in my own quiet and dark space.

Spring of 2001. Oh the recovery took so much longer but I was feeling happy and healthy and wanted to celebrate my health with another Sprint Triathlon ~ Kind of just to see what would happen. Guess what? YES! It happened again! Not one week after this time ~ but 2 weeks after. Strange coincidence? I don't know but ~ here is what I do know ~ I did my last triathlon that year and have spend the last 15 years ~ living in the shadow of this orphan disease. The Neurologist told me that I would get headaches and that might be something I have to live with but the recovery time ~ every time was long. I was not myself for about a year after the event. I found myself living in a cloud with memory problems and confusion. I was put onto antiviral medication which was not a proven therapy but worth a try. At that point I would try anything. In October I was still weak and a very kind a and loving man married me. He knew what he was getting into and loved me anyway!

Having children and Mollarets Meningitis - The chance of having a healthy baby with a fever as high as meningitis goes was a frightening thought. The doctor said we would likely lose the baby. SO ~ I left my job and stayed home, got pregnant and did NO exercise. Delivery was by C section. We tried labour but my son was stuck and in jeopardy. So, instead of doing a spinal they decided not to risk increasing spinal fluid in case there was a chance of a cyst rupturing and brining on the meningitis.

My second child was born 2 years later and by C-section as well. Both boys were healthy and I have had a glorious 15 years with no reoccurrence!

November 2016, Living in the shadows. I was just in hospital again. Blah! I had a headache / migraine for a couple days and one morning woke up with my left arm feeling heavy and numb. My doctor was concerned and advised me to to go the hospital. Thinking that my symptoms were so different that it must be something different ~ they did a CT scan and angiogram, and blood work. The result was 0 brain tumour and 0 bleeds on the brain. Diagnosis ~ migraine!

I am still awaiting an MRI to rule out MS but at least I got to go home. After 4 more days of weakness and headache, I am just happy to be home.

This is what living in the shadows is... every day I am not in a hospital bed is a gift! Everyday I am in my own home with my crazy family ~ a gift! I celebrate days that I can do things and be an active participant in life.

Thank you for reading my post. Reading others encouraged me to share and it was so nice to know that I am not alone.

7 Replies

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  • I can relate to your story. Thank you for sharing. I'm curious if you still take the antiviral medication?

  • Yes, I do. When I experience pain or tingling, I double my dose. So, right now while I await the MRI, I am on a double dose. :) I can say that if it has been responsible for having no other bouts then it is worth it. BUT, in all honesty, I totally quit impact sports like running on that last episode in 2001. My Dr. was not sure if it played a part for sure but I just did not want to risk it. I'd pretty much do anything not to be laying in that hospital bed again.

  • Hi, a terrible disease to battle, but that you are doing. Have to stay tough. My spouse is eight weeks in with viral meningitis and gets a little better every day. Fatigue and heavy head seem to be the main symptoms now. May I ask what antiviral you are taking? I will check with her doctor and see if this might be an appropriate medication for her. Thanks Jergen

  • I am sorry to hear of your wife's illness. My heart goes out to her and your family. It is such a long road. I have been taking Valacyclovir 500mg per day ~ doubled during an event. The medication given while in the hospital was even stronger and I remember getting a sense of relief within days. Once the right antibiotic was given in the hospital, I was home about a week later. That was 15 years ago~ so I do not really remember which medication I was given at that time but my daily anti viral of Valacyclovir has been my saving grace for the past 15 years.

    I hope that info helps and might be useful for your family.

    All the best.

  • I take a Valtrex 1000mg in the morning and at night and have been meningitis free for 13 months. My first episode of viral (Mollerettes) meningitis was in May 2012. I have had 5 episodes since then. It has been very difficult but it seems my recovery time has shortened after each episode. After the first two, which were only 3 months apart, I was off work and in physical therapy for a year. After the last episode in October 2015, I was able to go back to work after 9 weeks. I am a Registered nurse working 12 hour shifts so I need to have my strength back. I have suffered so much from meningitis that my doctor at one time was pushing disability. I am a mother of 3 and I love my job so that has never been an option for me. The antiviral medication has saved me and I encourage anyone who has molleretts to talk to their doctor about the medication. Unfortunately you need to become your own advocate as most doctors I have seen know nothing about this rare condition.

    My heart goes out to anyone still suffering from the after effects of meningitis. Please do not give up hope as it can and will get better. It just takes a long time.

    Blessings

  • Living thank you very much for the information and sentiments. Yes, after 15 years you have traveled a long road, but you have fought a good fight. I will check with her doctor and see if Valacyclovir might be added to her meds. Sounds like it has indeed been beneficial to you. With warm regards, Jergen

  • Glad that you have a positive attitude, and were able to have a family. I know from personal experience that it's not pleasant and a worry to live with the after effects. You sound like a bright person who can work out a programme to adjust your lifestyle to cope. good luck sorba

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