VM...Can I get it again or have I already...?

[SylviaBourne]

Hi, my name is Alex Bourne. I was diagnosed with Viral Meningitis in June of 2014 at 25 years old. I was the healthiest I had even been in my life and had just completed my first marathon the Feb before I got sick. I was feeling tired, weak, very light sensitive the day before I was stricken with a headache that I will never be able to describe. I was in the hospital and was quarantined because it was discovered that I had shingles on my left side near my spine as well. I was kept in the hospital on pain medication until my vomiting stopped and I was able to hold down a little food. This is where the real struggle began. I stayed at my parents house, leaving my apartment empty because I was unable to take care of myself for a month. I struggled with extreme fatigue, sleep paralysis, nausea, and headaches. I was unable to work and unable to live on my own for the first month. I was then confident I could go back to work and move out of my parents home. I was able to do that for a little while until I got overwhelmed (something that did not happen much before my illness) and had to move back home for another ten days or so. I then decided I needed to buck up since my doctors told me that every individual was different on when they showed signs of full recovery. For a year I hid my symptoms for my friends, coworkers, and family. I did not struggle with anything severe but I had a very hard time working without feeling extreme fatigue , reading without major mental overload, listening to music without anxiety, crying for no reason, anxiety attacked, panic attacks, but I was slowly getting better. The next October I got married and was back working and feeling better, although fatigue was still a problem and headaches were still a daily occurrence, I was having hope that things were on the upswing. A year almost to the date after my VM diagnosis I was having a lot of problems again. I was having nausea, depression like symptoms, chronic pain where my shingles used to be, extreme fatigue after even just walking around the grocery store. I tried to hide it but I could not this time around because I was sleeping 11 hours a night and then another 3 during the middle of the day. I struggled through it thinking it was just symptoms of the illness I had a year prior and then in July I finally saw a doctor because I had this impending sense of doom that something was really wrong with my body, very similar to how I felt before. The doctor did not talk to me long and also gave me a depression test and then settled on that I had shingles again (internals shingles) and was still struggling with VM aftermath and maybe depression from chronic pain. I was then put on a myriad of medication that made me better in some ways but worse in others. I was struggling and really having a difficult time staying afloat because I just didn't understand what was going on with my body and no doctor would sit and explain it to me. I didn't know how I could still be this ill from VM and still to this day do not know if I have a reoccurring condition. I struggled for about a year and then I was having really bad fatigue even though my insomnia and nerve pain was better from the medication, I was still having bad headaches and balance problems and focus problems and many other things. I then was having hallucinations, scary ones, paranoia, all things that I had never experienced in my life, I am a healthy person with no history of neuro problems before VM. I contributed it to my medication which the doctors said that it probably wasn't, they said it probably had to do with my insomnia which I still don't know why I had them. I then got off all of my medicine out of fear and searched for a new doctor who would help me heal wholly even if they could not explain VM to me, I didn't care. I have learned everything I know about VM from the internet which is a little sad and lonely. I found a lady online who treats depression and other neurological illness through a wholistic approach with food and stress relief rituals. I have found a lot of health and relief from following her practice. I still don't really know what I have or if I do in fact have reoccurring meningitis but I do know with stress I have a lot of problems and I can try to say I am 100% better on this way of life with my new doctor but the fact is I know there is something still deep down sitting there that will come out if I get stressed or overwhelmed and I don't know why or what it is. I do know that VM is lonely and not taken seriously. If you don't have bacterial people dismiss you and doctors can't or won't explain what is going on with my body besides that maybe I am depressed and need stress therapy. Thanks for this group and giving me a feeling that I am not alone and that this is to be taken seriously. I am not living a life free of most symptoms but will never live without fear that they will strike again.

[Rodman21]

maybe you have Mollarets. I have it and your symptoms are familiar. Acyclovir daily for the rest of your life. Works great. Pain meds and anti nausea at home for flairs, and Topamax daily for on going headaches.. Life is good

[Keep-The-Faith]

There is a fb group called Meningitis Survivors & Supporters. It's good. I am in my 12th month still mostly in bed with VM..takes a looooong time to heal. I'm taking the natural approach cuz drugs mess me up.

[Binks84]

Wow, sounds a lot like me and what I have gone through. I’m a year post now. Also from shingles on my left side, down my backside and leg.

It is comforting with this group to know we are not alone.

[kalirachi]

Hi Alex, the reason why doctors won't sit and explain to you what is going on is that they simply don't have a clue. This might sound cynical, but unfortunately it's true. I have seen many specialists over the past 26 months hoping one of them could at least come up with some suggestions and proper advice. The common fallback they all use is anxiety and depression and then start prescribing all sorts of psychotropic drugs without having a clue as to what they are going to do and in most cases completely ignorant of the side effects which are often worse than the symptoms you are suffering from. I am still suffering from many of the symptoms you mention including constant dizziness, imbalance, fatigue, muscle aches, photophobia, phonophobia, some days headaches, the list goes on. Having been through, and still going through this awful period I now no longer suffer the disappointments of specialist doctors visits in the mistaken hope that they will provide some answers, I also now feel stronger psychologically knowing that I'll never give myself false hope by going to see another one! The only positive thing I have learned is that rest and more rest together with a healthy diet, keeping hydrated and whatever exercise you can do is ultimately going to assist your recovery. It really is tough going but stay with it and very best wishes.