Can anyone help me with how to cope with my... - Meningitis Now

Meningitis Now

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Can anyone help me with how to cope with my after effects?

Flecky profile image
7 Replies

This is going to be quite long, hopefully I haven't missed anything....

I was admitted to hospital at the age of four or five with viral meningitis. I was in hospital for about two weeks. I was later diagnosed with glue ear, which, on top of my genetic hearing difficulties, causes me to constantly struggle to hear much at all. I'm now seventeen and during the past year I've been to the doctor in an attempt to find the source of some of my health problems.

I have daily headaches that are so bad I had to be scanned in case of a brain tumor. The pain is an awful stabbing that changes place, and sometimes it's so bad that my face goes numb and drops on either side, as if I was having a stroke. My balance is bad, and I struggle to walk in a straight line. I often walk into walls even though I am focused on the open doorway, much to the amusements of my friends. I occasionally have sight problems including blurred vision and those streaks of light that you may get if you stand up too fast. I'm ill with colds frequently, so may immune system may have been compromised somehow as a result of my VM.

Despite the physical effects, I could cope with what VM has done to me. However, I have developed psychological problems which I fear may have been caused by illness. I have depression on a scale that isn't justified by environmental factors. This year has been the worst of them all, and I'm afraid it's getting worse. Due to the insecurity and depression, I suffer morbid jealousy which is ruining me. I have a relationship that I have always wanted, it's absolutely perfect, and I am terrified of losing it because of a condition that I cannot control, even though I know my mind is being ridiculous. I have anger problems too, and all of this has built up over time. I've tried to resist it but ended up internalising my emotions, and occasionally have burnt myself just to snap out of a destructive state, which I never want to do again.

I finally realised that my meningitis may be causing these problems this week, after years of suffering without knowing why. So, after finding the Meningitis Trust website, I've signed up to seek help and advice, and find anyone else who has shared a similar experience to mine. I know my after effects have lasted for a lot longer than many of the other sufferers I have read about, and I had it a young age, but hopefully someone will be able to help me.

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Flecky profile image
Flecky
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7 Replies
Tiga profile image
Tiga

ok have to tried to find a doctor that can do movement for your inner eatyoutu.be/ZqokxZRbJfw also look up en.wikipedia.org/wiki/Epley..., i had this done and with in 48 hours all was ok

these tags words you have used fear - depression - afraid - insecurity WE HAVE all had, we fear the illness will come back, and with right diet and out look you can fight to stop this.

Depression can be so bad, you want to scream and shout, hon this is normal, you could try calms from boots chemist, or go to someone and talk to them, or call the meningitis hot line which is 24 hour Freephone UK number: 0808 80 10 388* Helpline@meningitis-trust.org

you say you have a relationship that I have always wanted, it's absolutely perfect, and I you terrified of losing it, by fear of losing someone you can push them away with out you knowing, put in to writing the fears etc leave it for a week, so back to it and re read it, till you know what you can say, use a tag word, when you are feeling low or angry say something like FROGS then the person will know you are having a bad day

daily headaches too many painkillers can bring them on as well, try rubbing VIC into your temples or buy ice sticks from boots or £1 shop

sight problems including blurred vision, this can be bought on by stress and depression, make a note when they happen, what you are doing, see if there is a pattern

anger problems internalizing emotions, again this is normal, but try not to use VM for every emotion you have or if you are feeling a bit crap, it can be so easy to blame an illness, one thing you must remember you severed it, you got threw it, many do not, you are the winner think like winner, when i feel low i say out loud (ok passer buyers may think i am nuts ) HELL i beat VM< i kicked ass, i will live my life so up yours

well good luck on your new path of kicking VM ass

Flecky profile image
Flecky in reply toTiga

Thanks for replying Tiga :)

I only guessed that any of my problems may be related to the meningitis a couple of days ago and I've been researching like mad for similarities with other survivors and ways to get rid of my problems, which may not happen for all of them. In a way I'm lucky that my boyfriend is schizophrenic so he understands that I can't control myself emotionally sometimes and he's being really supportive, which many people would have given up on by now. I know not all of my emotional difficulties are related to the illness directly, I think they've just come with frustration at not knowing what was causing everything else. I think I'm just naturally a jealous person, but the insecurity may have pushed it a little further to being overly irrational. The thing is, I received no after care at all in the 13 or so years since I was ill, so things have worsened because nobody's helped me control them. In fact, my doctor told me to take painkillers every time I have a headache because it's "just stress", but as you said, the amount of painkillers I was taking has been making the pain worse. Hopefully now I'll find ways of coping better than I have been.

bansale profile image
bansale in reply toTiga

It sounds like you could really use someone to talk to on a regular basis because depression can be harder to overcome than any physical illness. Last October I came down with fungal meningitis after receiving a tainted steroid shot for back pain but depression is something I've been dealing with for nearly 20 years. It's been a long process of trail and error to find the right medication combo that helps. As far as the headaches go, sometimes if you've been taking high doses of medication for too long, it will actually begin to work the opposite way and make the headaches worse. I remember seeing a story about this very issue on the Dr.Oz show. Good luck

becc profile image
becc

You describe symptoms I had, headaches (I also had a brain scan), loss of balance. I had to give up my job. Then I was referred to ear nose & throat and diagnosed with chronic ear infection (althouh I had little ear pain but I did have poor hearing). They burst my ear drum and put me on medication to keep my sinuses clear (pressure on these had been causing blurred sight, headache and muscle loss in face.

It took years to reach my diagnoses but maybe you could pass on my story to your doctors. I was treated in Edinburgh. Obviously it may not be the same for you but surely worth a try.

X

bevcarlydave profile image
bevcarlydave in reply tobecc

my vm is nearly a year on with daily headaches ,forgetfulness , depression and snappiness hope your feeling better x

Tiga profile image
Tiga in reply tobevcarlydave

sorry to hear you still have daily headaches, if you are on pain killers this can make it worse, sounds mad but true, have you thought of B6 and B12 this will help with mood swings and for forgetfulness. also try from £1 shop or boots chemist ice sticks, to help with headaches, well i hope one of these helps you :)

Flecky profile image
Flecky

Thanks again everyone for your replies and sympathy.

For those of you who suffer depression, I recently started taking L-Tyrosine to try and combat it. It actually seems to work, improving my mood overall. It doesn't stop depression, but makes it easier to get over things that upset me (which seems to be everything). It's an amino acid and you can buy it from health food shops, like Holland and Barrett. I also bought DL-Phenylalanine, which I haven't tried yet. Of course, follow the instructions when taking it. I hope this helps :)

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