14 Months since Viral Meningitis: It is now... - Meningitis Now

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14 Months since Viral Meningitis

DSAM
DSAM

It is now 14 months since I contracted Viral Meningitis and I am still a long way from recovery. It is all very frustrating. I am unable to work and spend most of my time resting with short walks. My head has numerous symptoms which include fatigue in varying degrees, brain overload, sleep disturbances and insomnia, headache, foggy head and at times retching when I try to think quickly. My sense of taste has also been affected. Physical and mental exertion needs to be paced if I am to function each day. I am better than I was this time last year, however, I feel that I have plateaued and am no longer moving forward. I am terrified that I will not make any further progress.

17 Replies
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Hi have you been investigating for chronic fatigue? post viral fatigue is very common and symptoms you are explaining would fit the bill, speak to your GP for a referral. Treatment is limited but at least you can make sense of how you are feeling and how to prevent dips affecting your quality of life. Im 18 months post and i have very similar day but i do still manage to work its very sifficult to accept this is life now. I wish you well in your recovery!

DSAM
DSAM in reply to Tonixshack

Thank you for taking the time to comment. I will discuss this with my GP.

14 months post VM is really quite early in the recovery process I’m afraid. I had near fatal VM in 2002 and it took about 3 years for the after effects to subside and some of them remain although not as pronounced.

You are I am sure making progress but it may be so subtle that you don’t notice it Day to say or week to week. I found it useful t keep a short diary of how each week was for me and then compare it month on month and that way you can see if you’re improving or not. It might feel like you have plateaued but chances are you haven’t.

I was very active before VM and was training for a sea swim triathlon when VM hit. It was my fitness which saved me I’m told but I was advised to take 5 years off physical exercise to give my brain a chance to heal. Like you I felt I wasn’t progressing until I starred keeping a weekly diary and although the recovery was slow I did get better, it’s just not one of those illnesss where you suddenly feel better.

Since coming back to sport in 2007 I have completed over 50 triathlons, 2 half marathons and 3 half Ironman triathlons so it isn’t a life sentence. Even having been diagnosed with recurring VM (called Mollaret’s Meningitis) I am living a amended but normal life.

As my neurologist told me in 2002, the patient just has to be patient.

All the best, Jonathan

RestisBest
RestisBest in reply to Jonad724

I am post VM 2016 july 13th.

Yes, it's very upsetting at times. A recommend you to find a good cranial secral theripest . I have had over 10 sessions. It cleared alot of the foggy headaches.

I have just visited a Biopat! She has advised me alot of pills/ drops to start on. She told me that my body is very tired and run down. I believe my body lost alot of minerals because of VM and the drips I was on. So hopefully the new medicine will help with my fatigue and brain function.

Try not to over do it. You must respect your new boundaries, and then adjust them as you get stronger.

Zoeyjp
Zoeyjp in reply to Jonad724

My daughter has roseola meningitis I infected her brain the back of the brain, she's 7 yrs old And her progress is slow but she's getting better with therapy. It hurts because she was so active and now she walks slow and her speech is slow. I just can wait to have her back running and flipping soon. I'm concerned about her sight and how she looks at me. Its hard for her to focus.

DSAM
DSAM in reply to Jonad724

Thank you Jonathan for your detailed reply. Well done for your inspiring recovery! I will take your advice and start a diary. Two more years seems like an eternity at the moment but knowing that there is light at the end of the tunnel is positive.

Jonad724
Jonad724 in reply to DSAM

It may not take you 2 years to recovery, it may very well be quicker but I hope you will be able to see improvements week on week :-). All the best, Jonathan

DSAM
DSAM in reply to Jonad724

One question Jonathan: The worst aspect of recovery for me is the insomnia/sleep disturbances and the retching when I try to think quickly. Did you experience these symptoms?

Jonad724
Jonad724 in reply to DSAM

I certainly did, and occasionally still do, experience insomnia. When I was recovering I slept at odd times, really just when I was tired which was pretty much all the time to be honest. I don’t remember retching when thinking quickly but VM affects everyone’s brain in different ways. As effectively it’s pressure being applied to the brain the illness can manifest itself in a lot of different ways. It’s not until you have VM to that you realise just how little the medical profession knows about the brain and VM but there’s an awful lot of professional egos out there who won’t admit it.

For the insomnia try a few lavender oil drops on your pillow and bed clothes before you go to sleep. That helps me and if I do wake up I usually go off again quite quickly. Hope this helps, thanks, Jonathan

DSAM
DSAM in reply to Jonad724

Thanks for your reply and advice Jonathan.

Yes, it's difficult to emphasize just how long it takes to notice even any slight progress in recovery from this awful illness. I suffered with constant dizziness, intermittent hearing problems, tinnitus and major balance issues. After a year of pleading with my neurologist for a referral I finally got to see an ENT consultant. He was extremely impatient and dismissive and without any sort of thorough testing diagnosed BPPV and referred me to the hospitals audiology/balance clinic. I knew this diagnoses was incorrect as BPPV does not cause constant unrelenting dizziness. However acting upon this diagnosis the balance clinic carried out a series of Epley and Semont maneuvers over the next two months which simply made matters far worse. When they finally accepted this diagnosis was wrong they carried out proper tests which included videonystagmography and caloric tests which confirm 100% canal paresis to the left side. The recognised and favoured treatment for this is vestibular rehabilitation exercises. After three months of diligently adhering to this exercise regime which actually makes the dizziness and sometimes nausea far worse, the balance clinic has now referred me to a London hospital for further evaluation. It's now nineteen months since I was taken into hospital as an emergency with a skull splitting headache, very stiff and painful neck, vomiting, fever, photophobia, phonophobia and complete loss of balance. The hospital wrongly diagnosed a TIA (mini stroke), then possible meningitis. I was treated for both with IV antiviral and antibacterial drugs and then had a lumbar puncture which a junior doctor completely messed up having hit blood vessels on the way in. Because this was traumatic they couldn't confirm meningitis. When I was discharged I was told I either had a virus they couldn't identify or possibly 'chronic migraines'. Frustrating is not the word to describe all of this. My sympathies are extended to all of those going through this.

Sure sounds like the v/m I went thru! Sorry u had such bad care! I was blessed, tho they really don’t k is much and further help in recover. They saved me, and I guess that’s enough for them. Handed me walking papers and said good to go after 1 1/2 weeks in hospital on lots of continuous bands of liquid .

Hi if you started to do too much in the first 3 months you should have not lift or walk stairs you did not give your body time it heal the best I can tell if it hurts stop good luck helpman

DSAM
DSAM in reply to Helpman

Thank you helpman. Your advice is noted.

Hi there, i'm 8 months post VM and I also still have similar leftover symptoms, mainly flare-ups of muscle aches & spasticity, neuropathic pain, spots in my vision, and sleep problems. From what I understand, it takes a long long time for the body to heal after a virus has gotten into the nervous system, so don't worry, you're still healing.

Some things that really helped me are:

-Taking supplements, including liquid iron, vitamin D and omega 3s

-Eating 2 cups of blueberries every single day

-Meditation/mindfulness. You can download a free app called Headspace, it's really helped me.

-Laughing! I read a study about how laughing every day can help balance out the parasympathetic/sympathetic nervous system. I've cried so, so much since I got sick, mainly from feeling like my old body and life were stolen from me. So I started trying to make myself laugh every day. I look up funny videos on youtube and reddit and don't stop until I find one that really makes me laugh.

I hope this helps...you will get better.

DSAM
DSAM in reply to littlemizzmovie

Thanks for your comment and advice! I hope you continue to improve also.

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.

Kind wishes and best of luck

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