just got diagnosed again with VM after 3 years

[giuseppe1986]

Hello everyone,

as for most people finding this site has been a huge relief for me. I am typing this from a hospital bed after being diagnosed for a second time with VM (first time was 3 years ago in 2014). As happy as I am to read all these posts of which 90% could have been written word for word by me, I am more sad that so many people out there suffer as I do. The first time I got VM I was 27 years old and i took that first year of recovering very seriously. As most of you know, there is no real medicine. So I took it on myself to get my body at its best with supplements like zinc, magnesium, b12, vitamin d, k2, omegas, etc. I got back to my excersise regime including crossfit which is definitely not an easy task for people recovering from VM, BUT the headaches that i tried to accept finally got to me about 1.5 years in. I stopped it all and just pretty much let go. I stopped the supplements, I stopped the exercise, I got intense mood swings, and was constantly angry at everything... I let depression break me. It was clear my body needed rest. I suffered EVERYDAY from intense headaches that no painkillers helped with. I guess this was my main symptom that brought me down. It was impossible to function and deal with people, or even my partner when constantly feeling like my head was going to explode. To top this all off, I am literally in the worst occupation that someone in my shoes should be. A touring sound engineer. Day in, day out running from one festival to another, mixing bands at really loud volumes in smoky environments, constantly facing stages with strobe lights and all sorts of lighting performances, loading in/out gear from vans and trucks, sleeping at bad hours (and bad places), countless hours of sitting in vans, etc etc etc. This is the reality of my job of which uninformed people "envy". Little do they know what this lifestyle is really like! I know.. I need to find a new job, a new lifetstlye. The past year and a half I've moved to mostly working in studios to avoid dealing with all the things that come with "touring" and it seems to be a nice change since audio/music IS my life, and cant even imagine not doing it or replacing it with something else. Im not really sure what the point of my post is, maybe just me trying to feel part of a community.. I thought my suffering was coming close to an end as 3 years passed, but yet here i am again in a hospital diagnosed once again with VM. I know there is hope as most people try to promote on this forum. I know every person deals with it differently. Maybe the only thing i can ask of people is advice on fighting the headaches and psychological effects that the daily headaches create (depression, fatigue, mood swings). Have a good day, dont mean to bore anyone with my story, but it felt good letting it out.

[Amw41]

Let out all your feelings and do t apologise. This site helped me to vent which was a huge part of my healing. I hope you have the strength mentally to fight this. As it will pass. Just try and breathe. And rememeber this saying.

This too shall pass.

[hhiellen3]

Please know you didnt bore anyone: just so sorry to learn how VM has affected your life! I found this site because my son in law is battling VM: Having been dianosed in late August, sent home with no meds, then back in the hospital for 4 wks with neuro amd infectious disease drs trying to determine cause-to no avail-after three lumbar punctures, and a brain biopsy: Then 3 wks in rehab, and now he is home, and has neuropathy in his feet, balance is off, and needs to cath himself. Such a nasty disease, and that there are so many relapses is concerning! Your description of the depression that you had seems to be typical too! My thoughts and good wishes are with you! Get back, a day at a time, to that healthy lifestyle you were leading!

PS-to the community: How many of you were on a drug that suppresses your immune system before contracting VM?

[Dpark in reply to hhiellen3]

I was on leflunamide (for seropositive only RA) before I got sick the first time in March, 2016

[Planetvix]

Go back to your old regime. It worked and maybe instead of CrossFit do slower exercise like hiking and yoga. Every time I let go of things I get sick . Hope you feel better soon... slowly slowly x

[Dpark]

Thanks a lot for sharing - helps to know you're out there and there are others struggling with headaches that persist. I am 3.5 months into my second bout with VM and still waiting for HA/eye pain/light sensitivity/sound sensitivity to subside. Wishing you a quick recovery!

[Faith8990]

I am so sorry you are ill again. This site is so wonderful for venting and support!! I will say this, before ever having viral meningitis i dealt with migraines all my life. I researched that magnesium helped aid in combatting them and i have read on here that it assists with symptoms of VM. My friends that have migraines swear by B2. I have not made any progress with it but i found out right about the time i came down with VM. Im currently on zonegran/zonisamide daily for my previous migraines. I have no idea how they effect the meningitis headaches but when i was sick those felt like tension headaches. Best cure was a muscle relaxer. The said part about headaches for me in the US is if you say you have recurrent head pain they will do one mri, tell you its migraines and slap you on some drugs. Exercise definitely makes a difference but i totally understand the lack of ambition, I am there. I hope some or any of this info helps! Best wishes!

[Lippistix]

Hello. My 28 year old daughter has a story on this site, Rosie S' Story, you can find the link on the blog stories from the home page.

We found that cranial massage worked wonders for her after suffering, as you are for almost 2 years post VM. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a post to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it may be it's worth finding out the osteopaths credentials and experience in this specialised field.

Kind wishes and best of luck