Constant dizziness following viral meningitis

[kalirachi]

I would be interested to know if anyone has been suffering from chronic and continual non relenting dizziness months after supposedly recovering from viral meningitis. If so,has anyone discovered a cure or at least anything that helps to combat this.

[Hidden]

I’m the same. Had VM at the end of 2017 and the dizziness/headaches/vomiting seems relentless; getting worse if anything. I have butech 10mg patches which help with the headaches but I’ve not found anything to help with the dizziness. I’ve been prescribed antihistamines, travel sickness pills and other pills that are used to treat vertigo and labrynthitis but nothing has worked. I’m pretty much housebound and have fallen at home a few times.

And the fatigue... I could sleep for 20 hours everyday.

I have secondary breast cancer and developed VM after having a brain tumour removed. I feel worse now than when the tumour was in my head.

Let me know if you find anything that helps.

Anouska x

[Lippistix]

Hello, Yes dizziness is one of the symptoms post VM. 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

[Hidden in reply to Lippistix]

I can’t find your daughters story on here anywhere. I’ve come to the end of my tether, trying to get answers from Doctors, oncogists etc for so have had one session of cranial osteopathy and am going back on Wednesday for more. No initial results as of yet but we spent most of that first appointment talking over my history and what-not.

[Lippistix in reply to Hidden]

Hi love, so sorry to hear you are still suffering. Im looking for Rosies original story which Maningitis Now published on their site, for you. In the meantime, here is Rosies account in her own words, which is pretty much in her story anyway...

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😊

...Hope this helps. Persevere with the cranial massage, all i can say right now, today, is that from november 2015 when she contracted VM, she is now cured completely, with barely any after effects now. So dont lose hope, even though you feel at the end of your tether.

[Lippistix in reply to Hidden]

Hi Anouska, i found the best way to get to my daughters story is to google search 'meningitis now Rosie S's story' it should come up first on the listings

[Hidden in reply to Lippistix]

Hi! I finally found your daughters story and found myself an osteopath who does cranial osteopathy. I had 3 weekly sessions of cranial and on week 4, yesterday, he introduced acuncture. This morning, for the first time since having viral meningitis, I woke up and the world wasn’t spinning! I got up and didn’t vomit and was able to take my dog out for a walk. Something I haven’t been able to do as I’ve been too dizzy and wobbly to leave the house alone.

This evening, my son and I are going out for dinner. He is 22 and has pretty much been my carer for 6 months.

Thank you so much for sharing Rosie’s experience with us all. Cranial osteopathy and acupuncture have certainly worked for me!!

Best wishes

Anouska xx

[sonnerkay]

Hello, I had VM in dec 2015, due to dizziness, & balance issues I no longer drive, I have hiking sticks for walking to give me mobility. Some days the world just spins, nausea, and fatigue. Claritin is the only thing that helps a tiny bit, I don’t have allergies. ENT’S, Neurologists, DR’s don’t have answers & don’t offer any solutions.

Bright days=worse, sunglasses help

Nose level & straight ahead at all times= helps

Bending head down/up= worse ( get on knees or mechanics rolling stool for accessing cupboards)

Pressure in left ear= worst days....No pressure a lot better days less dizziness

I dance 3 mins am by bed (stability) to help fatigue the dizziness

Every 5th-6th day dizziness worse for a day then relents & I’m better

If I ever figure out how to treat this effectively I’ll be on this site telling everyone & hoping they also get relief

Take care & keep searching u are ur best advocate

Sonnerkay

[Hidden in reply to sonnerkay]

Cranial osteopathy with acupuncture have worked wonders for me. I had 6 months of severe dizziness and vomiting. After 4 sessions with the osteopath my life feels back to normal!! Please try it!!

[sonnerkay in reply to Hidden]

Thank u I will try this & see if I can improve my situation. Small town so difficult to find trained person to deliver, looked at before & couldn’t find anyone in 150 miles. But will try.

Sonnerkay

[Ladybug8]

I had spinal meningitis when I was 18 months old, now at 40 years old I thought living with constant headaches dizziness fatigue ,loose train of thought can't sit still or lie down too long sore back neck! Neck cracks and back cracks so loudly it horrible well only just learnt life was not like this for a person who hasn't suffered from it, I thought everyone went trough this much pain and felling uncomfortably i thought it was normal! : (

[elden]

Many people describe a sort of "drunk" feeling following VM. I experienced this and still have some lingering issues (Nov 2017 was when I had it). It's strange - it gets worse for me when I'm inside a supermarket store. I can't pinpoint the cause (fluorescent lighting? walking around and scanning with my eyes?), but it's very strange. I had some tinnitus issues for a few weeks as well, so I'm wondering if the VM affects the processing of signals from the inner ear (a key component of the balance system). If so, that would explain many of the dizziness/woozy feelings people have, but I don't believe anyone has actually studied the biology here, the only evidence we have is from polls and anecdotes on forums like this.

[NikkiGill]

Yes, my daughter is almost 2 years post VM, and still gets bouts of severe dizziness, as well as headaches and fatigue. Nothing helps for the dizziness - it comes and goes. Interestingly, just like Elden said in a previous reply, she always feels worse when inside a supermarket or shopping centre! Wondering if it's the fluoro lights? It does help to read that others go through similar symptoms - it's a pretty scary condition to live with.

[Kitsismimi1 in reply to NikkiGill]

Hi NikkiGill,

How are you feeling these days?

I was desperate for some help and information as I an just now at 7 months post VM and for the past 8 days have had severe dizziness, it’s scary and unsettling.

Also having head pressure in the front of my head and so tired.

Up until last week when this started I was feeling pretty good overall.

Feeling scared and miserable.

Any advice would be helpful!

Thank you!

I hope you are ALL better at this point in time.

Jaime

[Subarugirl]

I have had meningitis 4 times. The latest one at the beginning of Jan 2020 was the first time I’ve experienced dizziness. It keeps coming and going for the past 6 weeks.