Meningitis Now

PTSD mood swings meningitis

Hey guys

So i just thought i would write a post or rather ask a question!...

Has anyone realised/admitted/thought they had post traumatic stress disorder?...

Ever since the illness i cant talk about it without crying, i go over and over it in my head, what should of happened, why it didnt happen, why certain things wernt done, flashbacks, anger, mood swings, etc... i’m just wondering wether ptsd is something people are seeing as i just can’t shift this and have been trying to act hard/strong and not show/say i’m bothered :/...

Thanks for listening! 🤗

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Yes! Me, 100%. I feel this way, I just don’t even want to think about it.

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Hi JWire

Yea thats what i try to do to cope just ignore it like its not there when deep down it is!

Have you talked to anyone about it?

How are you with everything?

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I talk to my mom about it once in awhile but haven’t done therapy or anything. I’ve tried talking to my husband on occasion but it usually just frustrates me more bc i know he doesn’t get it and it’s not his fault. I take lexapro now which helps sometimes but I freak out so much now about stuff bc you just realize how fast things happen after going through this stuff!

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Yea i exactly no how you feel! Thats the same with me for some reason my mam just gets it, i asked her one day how she just knows and understands and realises and trusts what i say and she said i’m your mam i’ve known you all your life and i know you!

Its so comforting!

Also yes they try bless them but they don’t get it not all the time anyway, and yes it frustrates you doesn’t it. I aswell end up not speaking/discussing stuff as it just can get you worse/frustrated.

I’ve become so quiet and angry and people don’t get it.

Again i’m the same!.... ive had ecoli, mumps, all sorts of stuff and then meningitis that have all been miss diagnosed and just sent home with “you have the flu... rest for a few days with flu” so know i go mad and want to be seen straightaway and any tests done. Good job i have always forced myself to take it further and go ane or people around me who push me to go🤗

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Yes... I don’t cry much though... I have mood swings and the thoughts of this or that and then the traumatic dream alone with my hallucinations will not leave me I think about those hallucinations everyday nd try to figure out what could have been real was the nurse real was the room real all that crap it’s scary to think my own mind messed with me that much and I do think it’s ptsd

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Hey it sounds so familiar maybe i will try to talk to someone about it if they believe us ay! 🤗

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I think meningitis is difficult to diagnose, actually I know it is. They had real difficulty with my diagnoses and really compounded my health issue by not getting to the root of it quick enough. My Wife was really upset with the doctors. However, being angry didn't help me, in fact I was to ill to be angry.

Now, with hindsight I wasn't unlucky to be ill, I wasn't unlucky the diagnosis took so long it lead to complications... I'm lucky I survived. As we know it's a REALLY serious illness.

I can clearly remember coming home from hospital and googling meningoencephalitis (which is what I had). I read "high mortality rate" and in my still confused head I translated that as "most people survive" I googled "high mortality rate" and realised it meant the exact opposite. "Mortality rate is another way of saying death rate." WOW

I'm not sure I've ever previously experienced depression, but I was really low after that for weeks, plus I had a constant headache, I was tired, I couldn't really do anything.

For me, two things happened, firstly I had a meeting with the consultant who looked after me in hospital. The very first thing he did was shake my hand and congratulate me for surviving and said I was quite remarkable. Huh? Really me? remarkable? I didn't feel remarkable, quite the opposite. Then I had a routine appointment with my GP and he got out my file and he was like "Wow, you've been through the wars"

I started thinking, "You know what I'm something pretty special. I've survived and really serious illness that quite a lot of people actually die from!" OK, so things could have gone better with my treatment, but things could have been a lot worse.

I spend sometime thinking about that. OK, it hasn't really changed my life (well, other than I actually have one), I didn't have any sort of epiphany, but in my own little way, in my own little life, I was some sort of superhero! Wasn't I??

It does take time, it's not really an easy road, we all have ups and downs, but things do get better. I did find it easy to talk about things, I was interested in what I looked like in intensive care, did I have wires everywhere etc. But we're all different..

Good luck with your continued recovery...Take it easy, don't be too demanding on yourself and talk to people when you can..

Graham

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Hello, meningitis causes trauma in many ways, which is long lasting. Depression being mainly one of them, which could be what youre experiencing. Please have a read below of my daughters recovery from this vile illness. There may be something in it to help you.

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.

Kind wishes and best of luck

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Hello again, These are my 28 year old daughter's own words below which hopefully explains much to do with her VM recovery.

Rosies own account of her post VM recovery:

I wanted to share my success story as I feel my treatments may help many others with similar symptoms that I had…..I had viral meningitis nearly 2 years ago, I suffered long term after effects such as head aches, stiff neck, dizziness, anxiety, depression, mood swings, bad memory, lack of concentration and most frustratingly mainly no energy whatsoever 😞I was stuck in a rut and didn't know where to turn to for help to feel better until my mum found this charity, Meningitis Now. I started having acupuncture in may this year as my mum spoke to a nurse that said it was a good thing to try for post viral meningitis which has been a huge help for my recovery in many ways and thanks to Meningitis Now I am also currently having complementary cranial osteopathy, I have had 7/10 sessions so far which has worked wonders and I honestly feel nearly 100% better, I throughly recommend both treatments for people suffering post VM after effects, it has been a long time since I felt back to my old self before I was ill, Meningitis Now have been a huge help and so supportive and understanding where as a lot of people don't realise that it can leave long term damaging effects, I lost friends that I thought were best friends that didn't believe I wasn't well and made me feel stupid and that I was probably just overreacting but it really was a relief speaking to the people at Meningitis Now and people understanding exactly how I was feeling and willing to help, I have attached my story that my mum sent to the website as I was asked to post it on here incase anyone feels it may be useful to read😊

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Hi Lippistix/rosie

Thanks for that it sounds so similar

Its so hard losing people/friends/people & doctors judging you as though things aren’t there i know.

I reached out to meningitis now about a year ago had someone come out and thought i was going down a track of support and progress but unfortunately i just was left on we’ll get back in touch and get info sorted for your work etc and nothing since; it took a lot for me to get the nerve to do it and so i was fed up of keep trying chase it up like a nuisance. Until this year where i have just come to a stand still and feel that gps aren’t taking things seriously like i ask to see a neurologist or something to speak to someone about my head, forgetfulness, confusion to the point of dangerous things happening, not getting my words out etc but i get referred to mind and speech therapy where theres a bit of help but then because they don’t know of meningitis and how constantly things happen you get remarks like sometimes we all do that.... not 24/7 we don’t! So i don’t know where to turn so again i called up meningitis now and got told i would get a call but again i am just left waiting; i don’t know if this is normal or not but again I don’t feel supported and my mood is terrible :/

How quick as it been with your dealings with meningitis now? And how did you know what treatment or help to get/need?

Thanks 🤗

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Hello, apologies for my delayed reply.

Rosie had a quick response from Meningitis Now, and we couldn't thank them enough for their support. I would say, dont give up trying, as it was well worth it for Rosie.

You could try finding an osteopath yourself, in your area, if all else fails with the charity. Someone who understands how cranial massage helps post meningitis sufferers. Some osteopaths will not realise how this alternative therapy can help, so it could be worth having a chat, so they can learn how it can help you and work together for some relief. It depends where you are. Fortunately for us there is an extensive list of osteopaths in our area. We are in west sussex, south of england, UK....We found a good guy who worked wonders.

Maybe now you've heard back from the charity? Like I said, if not keep trying.

Good luck, there is light at the end of the tunnel and Rosie is proof of this.

Best wishes xx

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Thank you lippistix; i will keep trying, i live in the midlands uk🤗

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Yes, the effects are very similar to PTSD

I’d suggest ringing Meningitis Now and talking to somebody neutral about it, and possibly arranging counselling

It helped me a lot

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Hey j

How long did it take you to get help? Every time i get the nerves to call and try i am always left waiting? :/

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Quite soon. Although we actually heard about the Meningitis now, (or Meningitis trust as it was then) from the local butcher.

If you don't feel up to picking up the phone please drop them an email and explain you do want to talk to someone.

meningitisnow.org/support-u...

Don't feel you have to do this alone.

I only set myself 2 goals after meningitis as it felt like everything else was falling apart, to leave the house EVERY DAY.. even just stepping outside for a few minutes. And to try and do something for myself that I enjoyed, at least once a week.

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Hi Jman

I emailed them a yr ago and initially it sounded like a great support to go forward with they said they would get back in touch and with how they can help/info for my work but they never did and as you can imagine i was fed up of trying to chase them up.

I then tried the other week and spoke to a lady on the phone who said she would get someone to ring me and again 2nd time round no one has been intouch :/

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Sorry to hear that, I really don't know why that would be:(

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My husband had SM and had a fairly quick recovery, so my response in not from a place of direct experience. What I think is, I am not surprised that you experience it like that. When experiencing mening. there a loss of control (trauma) and some of us turn (not consciously of course, or by choice!) into PTSD. Try meditation....it is like going to the gym for your mind.

My very best to you on your path to healing!

Michelle

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Thanks michelle 🙏🏼

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I am a Nam Vet and spent over 10 years as a clandestine operative. So PTSD is always near by. Its hard to tell if it is caused by meningitis or history. Bless you and yours.

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Thank you for your input 🤗

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I wish I could make things better for you. Just stay busy and find a hobby that you truly enjoy. Stay positive. I know its easy to say but you need to do it. Shalom

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I went to bed one night and 6 weeks later realized i was in the world. I hve flashes of things that happened during that time ,but don't remember anything. I have thought about PTSD because of the fear i have of getting sick again and just a feeling of terror dometimes.

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I get the same feelings there @faking 🤗

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Hello. I completely agree with you and made a post similar to this explaining my PTSD symptoms and my anger/frustration at the end of last year

Unfortunately it’s really hard to find people that understand becUse I feel like no one does especially the people around me

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Hi Fiona-bennet

I completely agree its such a hard thing to go through and get used to and to then have people not believe you as you look fine or one day you laughed or put on makeup etc. Its a sad world.

Unfortunately even some people close don’t get it but at least they can be more understanding or try.

How did you get on? What symptoms are you having?🤗

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