I think I might have mollarets: Hi, I'm... - Meningitis Now

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I think I might have mollarets

Emsy2009 profile image
Emsy2009

Hi, I'm wondering if I have mollarets. I had VM in March this year. Since I came out of hospital I've suffered with weakness especially in my left leg. Pins and needles and a bit of numbness that didn't last long in two of my toes and my thigh. Prickling all over my body and now burning at the back of my calves. Sensitivity to certain sounds, heartbeat in my ears and the feeling they need to pop and balance issues. I have not had too many headaches but around 6 weeks ago I suffered with horrible neck pain that lasted a few days it stopped my from sleeping and didn't respond to nurofen. Then a couple of weeks ago after being at a concert the next day I had to stay in bed for 3 days with neck ( not as bad as original I could bend it to touch my chin on my chest) and spine pain and an terrible headache that went up the back of my head to my forehead. Now I am back in bed again after having a neck ache which is always just on the right hand side, a pain that runs down my right arm, pain in the bottom of my spine again, and a worse headache than last time, again up the back of my head and my forehead. Feels like I have lots of pressure too and it's worse when I bend down. Any ideas? Have I just done too much?

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I have hsv MM. I know those feelings all too well. For over a year and a half suffered from 24/7 pains and other issues (nerve issues, head pressure, eye pain, sore neck, etc).

I found the only thing that helps and keeps me out of hospital is mainly graviola tea.

I had been taking a few supplements for brain and energy: gotu kola, grape seed extract, and apple pectin. And a couple of things for immune system: echinacea and dandilion roots (teas or supplements). And I took milk thistle, one before bed to keep liver from getting overloaded.

I found neem capsules and neem oil completely stopped my hsv outbreaks. But was crippled with all of the meningitis symptoms and excruciating lymphnode pains.

I was researching into relief for lymphnodes, and I stumbled across Graviola/soursop tea. I ordered 30 organic tea bags off Amazon. And started drinking two cups a day steeped 10 minutes and sweetened with raw honey and creamer.

I wasn't expecting much, hoping for even slight relief for lymphnodes. To my total and complete shock, I woke up a few mornings after drinking to no headaches, no head pressure, no neck pain.

Within a couple of weeks all symptoms decreased significantly.

After two months, I felt more normal than I ever expected. I cut back graviola tea to just one or two cups a week, I usually add a tea bag of dandilion root to my graviola tea.

I cut back all supplements to one week on, one or two weeks off, and cut back applying neem oil to once a week before bed anywhere a a hsv sore had ever been present.

Been outbreak free and symptom/pain free for two years. I share these things hoping to help others living through similar nightmares.

If I go over a month without graviola tea, head issues start coming back. And I drink daily again for a couple of weeks.

If I go without neem capsules and neem oil for too long, I get the hsv itchy tingle, I jump back in gear and start taking and applying daily for a couple of weeks. And sores never surface!!!

I have mollareas meningitis. I have had meningitis many, many times. I was finally able to see an infectious disease Dr that is having me take medicine every day forever. I'm just recovering from my latest but of meningitis. Hopefully this will help.

I was diagnosed with .Mollaret's in 2010 and this followed at least three years of attacks and battling with doctors. The usual connection is that there is a period of relative recovery rather than a follow on from the initial attack which is sounds like is the case for you. Unfortunately recovery from VM (Mine was near fatal in 2002) can take some time and for me at least the attacks are interspersed by what passes for normality for me now. If I'm honest it sounds like you're doing too much and the key to recovery from VM is all about rest, rest and rest, when you think you have rested enough then you need to rest some more. I'm afraid it's the illness that just keeps taking unless you give it the time it needs. I hope this helps, best of luck, Jonathan

Hi, u have endured thru a traumatic brain injury (VM) ur body and brain symptoms are the residuals of VM. Pain, numbness, tingling, noise, lights, balance, confusion, pressure, etc...is the hypersensitivity of nerve impulses. Dealing with “Overwhelm “ was my greatest challenge. Allow urself enough time to adjust, don’t push ur limits, Adapting is the new awareness as u transition to a new place. I found ear plugs helped with noise sensitivity, sunglasses helped dampen bright lites, avoiding crowded places lowered stress, walking sticks gave confidence for balance issues, prism glasses for vision issues, but time was the answer for healing, it’s been 3 years, and I’m stable, will never be the old me, but the new me is so much better than just after VM. Good luck with ur journey wishing u well, use anything u can to enable a better, easier recovery.

Take care

Sonnerkay

Thank you for all of your replies, I think I have done too much, I seem to have been left with this feeling that I'm always on the brink of another episode. My neck is now painful all the time and I feel so much pressure in my head. I think as I didn't have this when I first left hospital and was doing more I thought I was over the worst of it. I am going to give cranial osteopaphy a try I think.

Hi Emsy,

I am at about 19 days from the onset of VM and I am shocked at how little I can do. I'm an active person and don't do resting very well. It seems to me that periods of up and down, really down, are typical. My brain is definitely not functioning and I have many other symptoms, which worsen with fatigue, fatigue being one of the biggies. There have been some very good suggestions offered. I hope you feel better soon. I hope we all do. Definitely a life changing experience for me so far.

Best,

Amrita

Sulane64 profile image
Sulane64 in reply to Amrita-A

We seem similar, i just posted today after 5 weeks of the shock of having this. Yoga, ah whats that? Yes, I can roll over in bed! I have enough energy to get up & think how exhausted I am or try to remember what I was thinking & wish I could tend to the flowers or go to yoga or walk. Do you know how you contacted it?

Healing Thoughts,

Sulane

Yes try the graviola tea...I was told this works and it does! I wish I had found out about it sooner

hi you had it in March, so your just getting all the things that we usually get they take around 12mths to pass can take up to 15 for me sometimes 2yrs for others, it just doesn't pass it lingers on and little things will crop up , hopefully you havnt got Mollarets ...

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