10mons post VM

[Kellzlucky7]

I am tired of always being exhausted of being in pain, of the head aches, the brain fog, I have been having issues where I am forgetting where I am briefly. Vm has ruined my life I lost my job because if it. I'm in bed a lot always tired I'm severely depressed. It has affected my life in so many ways I just feel I can't come back from it. I hate my life and where it is.

[AHamilton11092016]

Yup that’s exactly how I feel everyday. It’s been almost two years since I’ve had VM. I described to my five doctors these exact words. I’m not going to lie to you it doesn’t change I’ve added seizures to the list about a year ago. Medicine they will prescribe you medication for everything you listed my count is 18 pills a day. None of it takes the pain away. My profession was military, I’m still in but they have given me medical leave since February of this year and all I do is go see doctors. I can’t drive it’s too difficult. Yes agree with you I hate what my life has become. I have bed accidents I can’t walk some days and trust me best friends bed and darkness. You will adapt. I lost my memory a total of 4 months combined even forgetting what things are called. I’m sorry this challenge came into our lives, you have to find something to hold on to and set pride to the side and ask for help. Medical marijuana is something I’m looking into when I am out of the military because on the outside people look at me and say you don’t look sick. On the inside it’s terrible my head pain my neck slurred speech seizures not being able to control my emotions. Those are real things that we are going through. If it’s a bad day and you can’t see or everything is ringing sounds like you’re hearing things in bowl underwater. Please feel free to contact me. Day one, 10 months or 2 years or even 10 years you are not alone in this feeling like this is completely normal.

[Kellzlucky7 in reply to AHamilton11092016]

Hi AHamilton. The Drs haven't really given me any medicine they keep telling me Ibuprofen. I go to physical therapy and soon a neurologist. I am so frustrated because like you said we dont look sick but we are. It's hard my children want to do things but a lot of the times I am sick. And they don't understand all they say is mommy your always sick 😔. I rarely have energy to do anything. And the emotions I never thought about lately they have been a bit out of whack I cry a lot, a lot more than I tell people because no one seems to understand what I'm going through I feel very alone lately. On top of all of this I have anxiety, vertigo and fibromyalgia I struggled with day to day life with those symptoms before I got the VM. Now it has made is so much worse. I just want to feel normal again. I am constantly scared and worrying sometimes the head aches and neck pain is so much I'm scared something might happen to me I know it sounds silly I'm just worrying but I always worry about Aneurisms these head aches these pains the constant sickness is different then the head aches I would get before the meningitis it scares me. I am only 35 but feel like I'm 60. I run out of energy and become fatigued very quickly and if it is really hot out It feels as though it drains me instantly and I move like a slug. I just want to feel normal again I dont want to be sick or depressed I dont want to take tons of medication. I can't understand why this happened. I remember when I was younger in my teens I was always afraid of getting meningitis how ironic I ended up with it. They told me my situation was rare. They explained to me that everyone carrys the Herpes simplex one (cold sore on lip) that it lays dormant in our ganglia and when the virus awakes it makes it's way to our lip and we get a cold sore. Mind you I have had one cold sore in ny entire life when I was like 8 years old. Well the virus decided to wake up but instead of making it's way to my lip it went to my brain and caused the meningitis. The Drs think it may have been because my then fiance at the time had a cold sore on his lip 2 weeks before I got sick. Great to know that the man who broke my heart also got me sick right. Now everything is upside down I lost my job which was the most I've ever made in my life really good money, I'm not aloud to fight or do karate anymore cause I am not allowed to get hit in the head, I can't do as much with the kids, control my emotions, my depression is so bad lately I just want to hide in my bed most days and not come out. I know I am not alone but I feel like it constantly. I'm trying to be ok and at one point convinced myself it was ok but it's not and hasn't been since I got sick. I now have tremors in my hands which has totally freaked me out, I get crawling sensations or feels like needles stabbing me all over. According to the drs it's my nerves growing back cause they were damaged, I forget where I am briefly. Does it ever get better cause it seems like we are stuck to endure this invisible disease without relief or having any improvement. I really am glad I can talk to others like me who understand what I'm going through cause I really do feel so alone in this.

[AHamilton11092016 in reply to Kellzlucky7]

Trust me talking to someone and living it daily there’s no reason to not feel alone. I get that card all the time oh my gosh you’re sick again so I guess next weekend we’ll hang out....I’m like um yea thanks for the support of understanding nothing. My body feels like needles too and when I brought that up they prescribed Lyirca to me. It doesn’t help. When you speak to the neurologist don’t be alarmed but soon doctors may say well VM is in your body and its out. No side effects. Not true. If anyone brings up conversion disorder, say thank you for your time but I need someone who believes me. That’s how VM works you have something going on and somehow this virus awakens and they do just give you ibuprofen. Not a cure at all. Heat affects me and cold too. I’ll get blurry visions and I feel like I’m blacking out. If you cry cry I was very embarrassed in the beginning cause I forgot my birthday which lead to forgetting where I was. They say you have to stay calm...live a day in our shoes and repeat that. It’s difficult the tremors started at six months with my shoulders locked in the position. Now it’s full blown seizures. The crawling sensations start at the head and it doesn’t help to scratch before you know it, it’s all over and your pain increases. I’ve seen three neurologist one was very straight forward and said these are like cluster headaches but chronic and there’s nothing you haven’t tried. Whatever happens when you see doctors don’t make them down play any of your symptoms if you feel it’s real. If you’re suffering from memory loss don’t let them put you on Topamax it only makes you forget even worse. Two years of trying everything and anything I’m here if you need any advice and I wish I could punch you ex in the face cause I was a teacher and I got it during flu season so they thought that it was the flu until I kept getting worse. Doctors really don’t understand why someone can get it and bounce back and there are people like us where it turns our world upside down. I’m 33 and I got it when I was 31. I feel like I’m 60 as well.

[Kellzlucky7 in reply to AHamilton11092016]

How did you get yours? And do they know why you started getting seizures?

[AHamilton11092016 in reply to Kellzlucky7]

I live in Florida it was the beginning on November in 2016 I taught a maintenance class of 18 people. I did not know at the time we had 8 cases of VM on base. I believe I taught one of the students it can be transferred by just sneezing or coughing or touching something they did. November 9th I felt like I was having a stroke to be honest the 10th I felt like I was hit by a car and the 11th my eyes were bloodshot my husband said I think you have pink eye I was like crap let’s go to the doctors. With a LP done they said I had VM and sent me home saying there was nothing they could give me. My tremors started when the pain was bad, I had one doctor call them pain spasms in 2017. I asked why I am getting worse the neurologist I see at UAB said because my body just can’t handle the pain so it responds in a way to say hey something isn’t right. I’ve had 6 MRIs two EEGs everything came back negative. They have said I have I have a TBI caused by an infection. My jaw will lock up and I can’t speak. The worst part of VM it can come back so I keep a diary to make sure I’m not experiencing similar symptoms because I believe my body won’t be able to take another hit. Fatigue was 6 months after with head pain from hell and vomiting all the time I see spots that tells me that my head pain is going to get worse. Listen to your body I did not rest I kept working then they put me on 4 hour work days which by the time I got home at noon I was in bed. Whatever you do don’t push yourself through it, it only makes any sort of recovery worse. Some days I can’t stand loud noises some days I can listen to music and I cry because it doesn’t hurt that bad. I chased every doctor I have tried all their pills. You can too but you also have to look at what cost. I stopped because it hurts to hear we are sorry Amie there’s nothing we can do so many times before you go deeper into depression. I just want you to try to find some relief for one symptom not try to find a miracle drug that will make you pain free. They say now my nerves are over active and there’s blockers I do I am on 10 weeks of Botox but only last 8 weeks. The problem is when the pain is masked when the drugs wear off your pain will come back full force. I call it being hit by train people ask it it worth it I say any relief even for a few hours is worth it. Mentally you need to prepare yourself cause nothing stops the train and your mind will go to a dark place. But you’ll fight it, and be strong for your children. And then you will seek out a different treatment that will last longer. Just don’t forget to live life to the best of your ability.

[dobguy1]

I had VM 12 years ago and diagnosed with Aids. I was almost dead when I.went to the hospital. I still have post.symptoms even now. I get anxiety and depression and go to the doctor and they say I am fine. My HIV is undetectable and my cd4 is over 1000. That means I am totally healthy. But I have sensitivity to light, I pay around a lot and feel like I can't do anything right. It feels like it I try something I.will fu+- it up so I just hang out. Prior to having VM I was an electrician and always working. I was also in the US Marines. But now I feel like I can't control what I think and sometimes I'll ruminate on one thing like forever. Like all day thinking how do I fix me or what can I do. Then I get tired and say screw it and take a nap. I have enough money to chill out but I keep thinking I have to do something more. It's like I'm not who I used to be and my thinking gets all weird but I know it's weird I just can't change it. It's like.screaming in my head just wanting to.get out. Hopefully your post VM isn't like.that but yea....it suxks.

[Kellzlucky7 in reply to dobguy1]

There are days where I feel like that to. Wondering what I can do to make it better constantly feeling like I need to work cause I need the money but I know physically I wont last. I was very active before I used to work and drive a truck selling and delivering snacks all over the city in the very rough areas. From 9am till sometimes 5 or 6 go home make dinner clean the house went to the gym would do karate. Now being out for 3 hours walking with the kids makes me exhausted sometimes if I do 4 hours of running around I can feel it later that night and know I will be sick the next day. Then I end up in bed all day the next day. I'm worried if I do try to get a job and push myself I will get sick and miss work. The constant worry and struggles yes I feel like I'm constantly battling with myself and screaming on the inside for some answers or some type of relief. Stress makes it worse. When I used to argue with my ex it would make it really bad the head aches the neck pain not being able to think it was like the begining symptoms of the meningitis all over again with a dash if the flu it would take me a day or two to recover. The heat is awful it was 83 yesterday and so hot that once I go outside I can feel the heat it drains me instantly I cant catch my breath I feel fatigued to a point where I almost just fall over. It feels like I was awake for days with no food or water and my legs get that burning sensation when u work out and then i have to sit or kneel wherever i am because if i dont my legs will give out or i will pass out. Everyone thinks I'm fine no one seems to understand which makes it all the more frustrating and harder for me to keep my cool without snapping at everyone. My emotions and depression are all over the place it's just awful. This has literally ruined my life in so many ways. I'm trying to act like I'm ok but deep down I'm lost confused and constantly feeling sick and exhausted im 35 and I feel like im in my 60's. I want to feel like me again but i know that will never happen i have to accept and work with what i have now. And should be thankful it didnt get worse or I didnt die. But it's hard to think like that when every day is a struggle.

[Starry]

Huuge hugs. I empathize a lot with the exhaustion and fog and memory issues. Im also at risk of losing my job. I will find out in the coming months.

Have you thought about telling your gp how depressed you feel and getting some talking therapy? It can help to relieve the sense of isolation.

I got put on low dose pregabalin and though i usually react badly to meds it did seem to help my anxiety and disrupted sleep, but medication does vary a lot by individual I know.

Be gentle with yourself. You've been through so much and are trying so hard for your kids. Thinking of you x

[Kellzlucky7 in reply to Starry]

Thank you I hope it gets better for you too. I see a psychiatrist and they are putting my on cymbalta for depression and nerve pain. Haven't started it yet a little nervous my body has never done well with antidepressants. I am also on meclizine which is more for my vertigo but it take the edge off a little with the anxiety. I haven't worked in almost 10 months now since this happened. It is very lonely I will agree the isolation is an issue. The constant feeling of being lost and tired just sucks. I hope you dont lose your job and that things work out. Keep in touch.

[Starry in reply to Kellzlucky7]

Thanks Kellz

I'm increasingly philosophical about it. A little bit of me hopes I'll be made redundant in the restructure as then its out if my hands and i won't have to face "failing" on health grounds. But it will all be what it is.

I recently joined a local fatigue/ME support group and that has helped reduce my sense of isolation somewhat.

Good luck with the cymbalta. I had very bad experiences in the past with numerous anti depressants a decade ago when my marriage broke down and caused a depressive episode so do very much empathize with how you feel.

Xx

[Lippistix]

Please give my daughters success story a read!

meningitisnow.org/support-u...