Anyone else suffered similar after affects ... - Meningitis Now

Meningitis Now

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Anyone else suffered similar after affects to VM?

Seacalm
Seacalm

Hi,

I'm 14 months post VM and really struggling with what at present I believe to be after affects. I have just been away for the weekend with my family and could compare how I was this time last year going to the same place. The positives are I can walk for more than 5 minutes without being exhausted which I couldn't do last year, I could barely walk to the car . I feel I want to go swimming but getting in the pool makes me very unwell with the movement of water,lights reflecting on water and the business in the pool. I sat on the side crying and couldn't look at the water not helpful when you need to supervise to kids! I can't drive very far and seem to be getting worse as a passenger. Daytime sunflight flickering through trees and cars moving fast make me disoriented, I have to cover my face with dark towels to block all light out, I feel sick, faint, funny tongue pressure in lower back. It is just as bad at night in the car with headlights. I can't look at any flashing or moving lights indoors or outdoors or watch t.v. it is really affecting my quality of life with my family as i spend alot of time in a dark room on a bed. Does anyone else have similar issues?

14 Replies
oldestnewest

Hi there,

I just posted my own story. If you haven't read it I think you could relate to it.

I have been going through a similar situation.

From reading other stories everyone's

Symptoms are different in there own right.

What I personally believe is that people who come here for help are individuals that are well in tune with their bodies.

A Illness like this causes even more problems to us because we're so sensitive to the changes it's made to our sensors. Like vision and sound.

My anxiety manifests from the vision disturbances and sensation changes in my body (blood pressure).

I know some people wouldn't get anxiety from it and would react differently, but that's just me. Which Is causing even worse symptoms as anxiety exacerbates them and can even create new ones.

It has also been clearly stated that meningitis can cause a variety of emotional changes such as anxiety and depression.

I think it's really important to stay positive. Easier said than done. I've been very depressed lately.

But know you aren't alone. That helps alot.

PeterrB
PeterrB in reply to PeterrB

I also forgot to mention that supplementing vitamins is crucial. I would say vitamin C and fish oil has given me the best results. If you have the money IV vitamin Infusions are very good. But very expensive.

For stress management I've found GABA and L theanine to calm my nerves. GABA is also very good for cognitive function. If you feel confused and lost for words like I do it works quite well. Especially for memory recall.

I've also been having cranial adjustments by a chiropractor and also Kinesiology.

There is only so much Western medicine can do until you are all out of options.

As you are still suffering on 14 months I think it is imperative to find something that's going to help you.

As some reassurance I still feel sick and disoriented in cars. But everyday it's getting better with the therapy im getting.

Rowi
Rowi in reply to PeterrB

What you describe, Seacalm, is not unlike what I experienced. I am 13 months in. I agree with PeterrB: I have been helped by supplementing and alternative medicine. Still not 100% but getting there. I think you can search for my posts to see my suggestions. Don't give up, but do also give it more time and patience.

Seacalm
Seacalm in reply to Rowi

Thank you for your reply. What supplements do you take. I take 1000mg vitamin c, 200 mg magnesium and b complex. I have tried accupuncture which helped with numbness and a light of photophobic but made my headaches worse. Glad to hear you are improving.

Rowi
Rowi in reply to Seacalm

I take the supplements you do, but about 600 mg of magnesium. You'll need to build up to that amount. Don't do it all at once. Also, make sure to divide the dose into two or three doses a day. It's especially helpful before bed. You'll want to make sure you get enough calcium in your diet (not supplements necessarily) if you up your magnesium (soy-based products, dairy products, etc). I take 3,000 mg of vitamin C. (Some people take a lot more than that. I took about 8,000 for a while, but everyone is different.) I also take vitamin D, which is good for your immune system. For a while I was taking vitamin A, vitamin E, Omega 3 (EPA-DHA), and blue vervain for insomnia. Also selenium. When I was really bad, I felt that limiting my salt helped.

Some people on this site have been helped by acupuncture, but it wasn't helpful for me for this. However, sometimes with alternative therapies you get worse for a few days after treatment. I found osteopathy and chiropractic to be more helpful. The yoga and other gentle exercise is good.

Seacalm
Seacalm in reply to PeterrB

Thank you for your reply. I have been searching for alternatives for the past year. I do take a range of supplements including high strength vitamin c, magnesium and b vitamins.I've tried accupuncture and cranial sacral therapy. I practise mindfulness daily and yoga and pilates when my head allows as some days I can't bend down due to the pressure in my head. I am due for another mri to rule out any other causes.

I am glad we are not alone and I feel grateful I have my life and all my limbs. I just feel sad on some occasions for the things I used to do with ease that seemed so little like being in a car or going swimming.

Hi, I’m about 19 months on & I remember reading somewhere that it can take 2-3 yrs to fully recover.

I’ve also been struggling with head pressure/headaches, disorientation & fatigue.

It does improve. It felt like The symptoms would last forever but they are getting better now.

It’s hard especially when you have children to rest & look after yourself. I’ve finally started listening to my body when I start getting the first niggles in my head & sitting down to rest.

Have you tried cranial oesteopathy? I’ve had 8 treatments so far & i feel loads better.

Good luck -x-

Seacalm
Seacalm in reply to mand34

Thank you for replying glad to hear you are feeling better. I hope it continues for you.

try and wear your sun glasses as much as you can, even driving in the night it will help and it will lesson it won't go completely but it will change and Im sure you will be able to live with it eventually ive had 4 cases and one really bad mini bout in Feb, which is going to take a while to leave I can see that now, but I know it will so please take care and be positive as you will improve for sure, we have to believe in our selves and with the tongue , yeah it took me nearly 2 years to get my taste back after the bad bout I had in 2014, but it came back have lost it a little at the moment from the feb attack but only a small amount, ... keep watching and reading here for tips there is a cranial head massage that you can find a big help its really good, not so expensive either ..

Seacalm
Seacalm in reply to IRHONDA

Thank you for replying. I wear sunglasses alot but they dont seem to help in the car with the sun flashibg through trees i need complete black. I weae special photo epilepsy one when faced authors than an hour of artificial light at work. It's frustrating not being able to look at moving water in a swimming pool or the sea. I tried cranial message but she only held my feet as she felt my meningiges and system were over stimulated at that was at 10 months!😕😕

wow you do have things quite bad im so sorry that your being effected so much, I must admit after 5 times now I am getting used to it if you can ever :( ....I hate the lights at night - so wear sunglasses.....I wear them in the shops as well as I cant stand the lights in those big shopping centres, I do tend not to put lights on in my home I use those battery candles so they are much less glare on the eyes, be strong and be positive don't let it get to you please, you have kids so your still young, you have years ahead of you so you must learn to deal with it now try everything that works for you and let your family be aware what works for u and what doesn't, I cant stand a lot of noise either I need a lot of quiet time, god I hope you can be strong, its a a shame you cant go swimming as this could be stimulating for you try it with the dark sun glases on "? keep trying I do hope you get a lot better take a lot of care of yourself ...

Yes it's awful but intensity lessons but still brightness there after 5 months so sick of doctors talking about anxiety nutbnot helping I don't think cognitive behaviour therapy helps but sunglasses do

The light is super bright in australia

Keep cool with ice cubes as this helped me

I got new sunglasses 😎 and really high quality and made a difference

That's great news . What make are they?

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