Hi all and so grateful I found this forum. I have gotten so much out of reading many of your posts and caring responses. I got diagnosed with VM January 4th, 2018. Went to hosptal with horrible headache that woke me from my sleep. Felt so ill and exhausted. Neck hurt too and felt flu like. After a CT scan which showed nothing they did a LP. They said I had BM. They put me in isolation. But after the culture came back in the morning they said VM and encephalitis from herpes 1, the cold sore virus. Apparently only 1 in 500,000 have that happen. Later they determined only VM as I didn’t present with more symptoms. I was on IV for ten days in the hosptal with Acyclovir. I would ask about recovery and they said not to worry. It’s like the flu.
I felt doctors knew very little about VM and said I would recover fully. I would ask about after effects as still had headaches and fatigue and neck aches but they kept saying all is well, and in a week or so would be back to normal.
Been over 10 weeks (know that is a short time and i am very patient now especially after reading some of you are years out) and thanks to this forum I know my fatigue and headaches that come and go will take quite so time to go away.
My question is this...has VM changed your personality? I used to be very outgoing and even enjoy chatting with strangers and enjoyed seeing friends and my family. I have four kids who are adults and enjoy seeing them but mostly keep to myself. I avoid large groups now and don’t feel much like socializing or talking. Only see one or two friends. Never was like this. Maybe part of it is to conserve energy but truly feel like I have changed. Not feeling depressed just like to be alone much more and quiet. I don’t like to make any social commitments as I don’t know how I will feel. Mostly just that I don’t want to talk, more than being tired.
My friends and even some relatives don’t understand what is going on, why I don’t want to get together much anymore. Neither do I for that matter. I am a different person than I used to be.
And last thing, the month after hospital I came down with the flu and pneumonia. A few weeks later a sinus infection. I used to say that I never got sick. Wow. Not true anymore. Feel like my immune system isn’t as strong as it used to be.
Thanks for any input. Sorry so long.
Going to my first neurologist appointment Monday for a follow up and going to tell doctor to let patients know about this supportive forum. The only place I have truly found answers and support.
Thank you.
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Love2hike
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I can totally relate to wanting to be alone for the most part. Looking back I think a lot of it had to with the fact that Post VM I found myself getting very overstimulated very easily and that would be extremely draining on me and put me in a foul mood. I found my solace in a quiet room with soft lights. Thats my happy place. Loud/talkative people/noises/lights just sucked the energy right out of me. Im not sure if thats how you are feeling. Perhaps theres some PTSD in the mix as well. Glad that you are feeling comforted by the Forum : ) : ) : )
I'm 6 months post VM and I am currently experiencing this. Busy rooms or streets quickly drain me and quickly annoy me for some reason. This "overstimulation" feeling is also how I describe this weird thing that now happens to me when I laugh-- I SWEAT! Even if something makes me sort of happy, like hearing a song I love, my palms will start to sweat and it's like my body is overreacting for no reason.
Thats me all the way. Could be depression but I have been that way for 10 years after VM. All tests came back neg for brain problems. Sensitivity to light and developed teeth grinding. I do see to outgoing,now I have to force myself to leave the house
Same as you, VM caused by Herpes cold sore virus & on IV acyclovir. Reading your post is like I’m reading my own thoughts. It’s reassuring that we have this forum but it also frustrates me that we can relate to each other and experience similar things yet the medical profession don’t recognise this and help/do more. I just don’t understand why. It’s sad. Like you, I was a very outgoing personality but since VM (2yrs post) I’m not the same person. I panic in large crowds. I find it hard to find my words. Meeting new people is challenging, still enjoyable but more effort required and it’s exhausting. I find I sit back and listen more in larger groups rather than join in. I’m much better one on one. It’s tough but I guess we just have to adjust to the new version of us. We have to find a way to cope and to see the positive. I’m a much calmer person most of the time.
Anxiety is responsible for the change in personality I think so things like yoga, meditation etc can help.
Thanks so much. Same thing as me. Agree. Been meditating again more and running a bit and hiking although I do get headaches when I try to do too much. Really miss being able to hike all day and feel fine the next day. Now my head hurts and tired. Yes anxiety for sure. Sometimes feel depressed too which I hardly have felt before and now every so often. The brain is a powerful organ. I sit back and listen more now too. Yes adjusting to a new version of us. I too am much calmer which I do like. Thanks so much. Helpful.
Hi sorry you aren’t feeling great it’s a rotten nasty virus that’s for sure! I have found since Emily has had this she is a very different little girl it’s hard to watch really.She spends so much time alone now and because she missed so much school her constant worry about her grades has left her feeling so anxious she doesn’t eat well and sleeps very little.Her personality has changed without question.I really hope things improve for you x
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story 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 is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
I am post 2016 July VM. It was the herpes simplex virus. Did not know what was coming my way, after leaving the hospital. I received the same medicine acyclovir and penicillin on Iv drip.
In short it's been a very long journey with lots of sleeping to help. I have stopped drinking and smoking. My social life has totally changed, as I prefer the peace and quiet. I believe I was depressed and shocked for some time. But I have a daughter and a wife to give my love to, which helped me out of the dark.
You are just doing what you need to do to help your brain recover from a serious trauma. Give yourself plenty of time, it gets better.
I lost hearing also, and was supplied hearing aides. I am trying to use them more often. But my brain crashes from too much stimulation/ noise. It is getting much better with time.
You are not alone.
It has not been so long since your attack. I can assure you it will be alot better for you.
I suggest also to seek cranial sacral therapy as well. It will ease most of the head aches and relax you.
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