I have Mollaret's Meningitis

Hello, I am very new here. I have Mollaret's Meningitis. I have had many, many attacks with varying severity. In September 2015, I had a very serious attack and felt it may kill me. I am gratefully still here, but the attacks since then have come every few weeks. My life is one of constant pain and struggle. I feel like a burden to those around me, so I have retreated from people to give them a break from this evil illness. I just thought I'd reach out to a community that may understand. I am still a loving mother of 3 kids, I still have passion and energy for what I create in the world when I am able, I run a community project to feed the homeless, I help run a large family company, I work hard to maintain a nice house for my children.....but I do this with constant painful headaches, lethargy, limb tingling/numbness, vagueness, heavy headedness confusion, hearing loss and fear.

I follow a nutritional plan, take lysine and try to keep my stress levels low.

Does anyone else struggle to keep positive through this? Some days it's really hard to keep a smile on my face. Today is one of those days....

12 Replies

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  • Hi Shining Star, not sure if this will be any help but it may be worth a go. I have had Meningitis three times in my life once at 18 and then again twice at the age of 54 within 3 months of each other. The hospital was not sure what was going on and there was a query whether it could be Mollarets. They thought it might and then thought it might not be but basically as I got well they said we will have to wait and see if it comes back again before being sure. Every time over the next couple of weeks that the headaches came it was frightening I sat there wondering if it was about to return. Finally I went to see a Doctor who whilst admitting her knowledge of Mollarets was limited she went away and researched the situation for me and came back with the idea of taking one of the medications they had treated me with in hospital. She then put on Aciclovir 400mg twice daily one in the morning and one in the evening. Now she explained to me that she had discovered some American doctors were giving this to there patients that had/might have Mollarets and some of the results were very encouraging. I do not know if it works but I take my wonderful tablets every day and since then I have had no full attacks (4 years). Sometimes I feel a bit weird and have headaches and a strange sensation around my nose and feel feverish, all things that preceded my full blown attacks, I then throw another couple of tablets at it daily for that day, kind of morning noon, evening and bedtime and thankfully I have always woke the next morning to feel fine. Now I genuinely don't know if they would have been attacks or not but for me it works and whether it has actually helped or not I don't know but I had to tell you my story just on the small chance that it might be something that helps you. I have an idea how you are feeling, don't give up, make someone make a decision on how they are going to help you, the doctors in hospital virtually tried to forget me and what might be happening it took an outside doctor just to even pay me attention and see how terrified I was. Best of luck to you Shining Star we are all with you.

  • I would like to invite you to our Mollaret's support group on Facebook. facebook.com/groups/MMsuppo... We have a bunch of people over there that know exactly what you are going through. It really sucks, but there are a lot of suggestions that work for different people you might be able to learn from. You are not alone, and others know what you are going through.

  • Thank you so much! I have felt alone with this and a bit like a guinea pig for the medical profession. I am, right now, recovering from a flare up. I normally bounce back pretty well....but this time....not so much. I know that dealing with situations powerfully sometimes takes relying on your community. I am pleased to know I now have one ☺ Again....thank you x

  • My flare ups used to look like the typical recurrent ones until a couple years ago. Then it started becoming more chronic. I now rarely have a day without symptoms. One of my challenges is that I acquired an allergy to acyclovir and valcyclovir. I spoke with Dr. Levin at UC Denver who recommended famcyclovir since I am allergic to the others because it is a little different. Many of us have had success with taking lysine as well.

  • You are not alone. Depression, fear and the unending feeling of illness has greatly impacted my life. My faith helps me hang on. I will pray that God helps you also.

  • Yes.....the fear is something I deal with too. I work on transmuting the energy into calm resolve....but it is not easy. I send you love, compassion and healing....wherever you are. Thank you for reaching out to me. I truly appreciate it xx

  • Firstly, sending good wishes to you. Your ongoing suffering must be really exhausting and trying!

    Can I ask how your mollarets diagnosis are made? I was diagnosed with VM January of this year, caused by an HSV. I have been plagued with headaches on and off since, however, for the last few weeks I've felt absolutely awful again. Severe headache, stiff neck, exhaustion etc, that hasn't responded at all with all the usual medication. I went to the GP, who looked at me as though I was wasting his time. He told me 'it doesn't come back' and that due to the time lapse, I should have recovered from this a good while ago now, as VM usually clears in a couple of weeks. I left feeling really misunderstood!

  • Yes VM usually clears between 5-14 days. Symptoms, however can hold on for a while longer. Good nutrition...lots of rest....keeping yourself hydrated.....avoiding alcohol and meditation can help. I was diagnosed with Mollaret's with results from the lumbar punctures taken during flare ups. Some...not all...showed HSV in my spinal fluid. I have had many....many (over 15) episodes of VM. Not fun. I am sending you healing light and compassion as you recover x

  • Hello! We have so much in common! I too am a mother of 3 kids, work full time as a RN, and am involved in many activities! I totally understand your frustration. I want to share with you that I have been taking Valcyclovir 1gm twice a day for the last year. My last episode was October 24th 2015. Since then I have been completely meningitis free!!! Coming up on almost 1 year. This has been a miracle for me. Talk to your doctor. I know there has not been a lot of research or studies behind it but it has saved my life. I am finally starting to feel like me again!!! Good luck!

    Hugs,

    Kari

  • Thank you Kari,

    I have just started the treatment you describe here. I hope for some relief for me and my family. Thank you so much for reaching out to me. You have given me hope. I send you gratitude and light xx

  • I had VM from the Shingles virus which I had across my shoulder. The virus passes the barrier into the meninges.

    It took me one year to get over it but still couldn't exercise without getting a monster headache. It took me 3 years to full exercise again without headaches. If I did too much physically or mentally I would be in bed for 3 days with a meningial attack.

    I learned that I had a head injury. i couldn't scroll on a computer for ages, couldn't watch action movies...I basically couldn't do anything that rquired a lot of brain power. I still have to be careful. Any physical, emotional or mental effort has to be done slowly knowing that if I over do it I will have a full blown attack again.

    A year ago the Doc put me on Acyclovir twice a day and that seems to help and there are no side effects.

    Basically, the shingles virus is present in everybody if they have had chicken pox. The virus lays dormant unless are immune system is low with stress or we are physically tired. So it has to be controlled and subdued.

    My advice:

    Ask Dr about Acyclovir as a profolactic dose.

    Hand volunteer stuff to others for the moment. You need rest for your body and brain to recover...you have too much stimulation.

    Hope this helps. Hiking the Appalachian Trail so sorry bit garbled!

    Good luck

    Ana

  • Thank you so much Ana,

    Yes....I have issues with my brain as well. I have just begun the medicine you describe here and hope to enjoy some hiking like you are now when I am recovered. I live in Australia. Thank you for reaching out to me....you have given me hope and made me feel less alone.

    Thank you

    Lisa x

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