Viral Meningitis- After effects

[Daver19021958]

Hi, I am Dave and live in Sydney Australia. I had VM last April 2017 and it took me 6 months to recover. VM was diagnosed via lumbar puncture in hospital. At age 59 I was fit and healthy and VM slammed me. I lost a lot of time off work. I have substantially improved since and keep active but if I get a virus or flu or I am tired I still get headaches and blurred vision and vertigo. I take diclofenac for pain relief which I find is very effective. My experience tells me that VM is anything but a mild disease but I am very grateful for many of the simpler things in life I often took for granted that I can do. My approach is to never give up and take a day at a time. I am very grateful that I found this forum as it been helpful for me to understand others experiences and what has helped them. Regards Dave

[NikkiGill]

Hello Dave, I am so glad to find another Aussie with post viral meningitis on this site. My daughter had a suspected case of VM 2 years ago. She was 13 at the time and I had never seen anyone so ill, and I thought at one point that I might lose her. She missed months of school; and while the acute, early-onset symptoms have mostly disappeared, she is still struggling. She suffers with chronic headaches, which at times are debilitating. While she is mostly well enough to live a relatively normal life, she has episodes of severe symptoms - mainly headaches, vertigo, joint pain and debilitating fatigue. As in your case, it seems to me that her VM symptoms return whenever her body becomes physically stressed, i.e. a lack of sleep or fighting another virus like a common cold. As we speak, she is going through another bout of symptoms and have missed 3 weeks of school. I have shed many tears in private! I believe most GPs have no idea what to recommend or suggest - I realise they generally don't have a lot of experience in dealing with meningitis; and most feel VM is "just a virus that will go away in a week or so"! We never got a confirmed diagnosis because our doctor was too inexperienced to realise what we were dealing with. My daughter was rushed to hospital twice; but by the time an ER specialist decided it was likely VM, her fever had broken and her stiff neck had gone away. I opted for her not to have a lumbar puncture as I felt the risks at that point outweighed the benefits - I was told that it was unlikely that the virus would be picked up at that stage! Well, we all know that meningitis in any form is a hideous infection that takes a long time to improve. I stumbled across this site in another frantic search for answers - at least in reading posts like yours, we know we are not alone and we know there is always hope and that some people even make a full recovery. I have found an experienced naturopathic herbalist, and my daughter has been taking herbal anti-virals which do seem to help in managing the severity of some of her symptoms. But I'm guessing that time will be the greatest healer. I wish you all the best in your recovery - here's to better health all round!

[Daver19021958 in reply to NikkiGill]

Hi Nikki, Sorry to hear your daughter is going through another episode. I also was not diagnosed for a number of weeks initially and was referred to ENT and Respiratory Specialists to no avail. Only after a referral to a Neurologist he gave a clinical diagnosis of VM but he was reluctant to send me for a Lumbur Puncture after all I had been through and felt that I was in the recovery phase. I was prescribed medication to settle the meninges nerves down but the side effects were horrendous. (He also checked my Optic Nerves in my eyes to ensure there was no swelling or damage- fortunately there wasn’t). As fate happens though in early June last year I was so ill I ended up in hospital and along with numerous tests including CT Scans I ended up having a lumbar puncture. This confirmed that I had VM.

I agree time is the biggest healer. It can be very challenging and frustrating for those supporting someone recovering from VM. My wife has been incredible but at times it has taken a toll on her.

Be kind to yourself and ensure you look after yourself and take a day at a time.

Please don’t hesitate to reach out and keep me informed of your daughters progress. It is therapeutic just knowing how others are journeying through their recovery and we can all be an encouragement to one another.

Please take care, never lose hope. God Bless and I will be praying for you and your daughter. Dave

[NikkiGill in reply to Daver19021958]

Thanks for your reply Dave! Yes - without hope, we are lost. I need to remind myself - and my daughter - to take things one day at a time. It is tough not think of What If in the Future! Give your wife a hug from me; I understand your and her journey. I will keep you posted... Take care!

[jenny2448 in reply to NikkiGill]

I am so sorry that your 13 year old daughter is struggling with this hideous illness. I thought i must have been the only auusie to survive this terrible illness. I hope your daughter fully recovers. I am a survivor and I find keeping a diary of how your day went, helps to look back on in a couple months just to see what triggers these episodes. I suffer bad headaches and sensitivity to light. I wear sunglasses everywhere which keeps the headaches to a bearable ache. I also find any kind of stress putts me back a couple of days.

I have a fantastic support system around me which is so wonderful. My husband quite often cries for our old life to come back.

Good Luck to your daughter and just stay strong for her. Jenny

[NikkiGill in reply to jenny2448]

Thanks Jenny! It's been a long road and even though my daughter is still very unwell at times, I know when I look back that she has improved. I know from reading so many posts on this site that time does seem to make a difference. Thanks for your tips - keeping a diary is a great idea. Look after yourself! Nikki

[Emilymads]

Hi .. I’m glad you are on the mend and so positive about it all.It is a horrible and sometimes life changing virus and still a struggle here with my daughter and the effects it has left her with.This forum is great was recommended to me by a friend and I’m glad it does help to be in touch with others who have been through this and continue to try and stay strong and positive about it.

[EimsD]

Hi Dave in 51 and am 5 weeks post diagnosis. Still getting tired easily but think it is slowly improving. I can understand that you feel slammed. it's hard to explain unlessyoucd had it.

Just a word about diclofenac. It's been discontinued for use here due to heart related issues. Used to take it myself due to spinal stenosis and lumber sacral issues. It worked!

But maybe worth checking?

[Daver19021958]

Hi, Thanks for your message. I use diclofenac only as a last resort and maybe only a couple a times a month. I find it can be harsh on the stomach as well so appreciate your advice. I use panadol/Osteo as the first approach as I have severe arthritis damage in my neck as well.

Please take care and trusting you have a speedy recovery. Dave

[TarLus]

It seems as though most have the same symptoms. It’s such a sun that we all struggle daily and there is not too much that the doc can do for us. Anyone experience more pressure and pain in Your head and neck when it rains?

[jenny2448]

Hi Dave

It is so good to see someone from australia. Congrats you are another survivor of this hideous illness. I had vmeningio/ encephalitis in august/ september 2017. I was in hospital for 4 weeks. Ever since I have suffered many different ails but you mentioned headaches. I have been seeing a physician to try to find something for the headaches and sensitivity to light. At the moment he is trying a high dose of prednisolone. He said the inflammation may not be gone. Today is the best I have felt for some time. I am interested to see what Drs you have had and what are the best treatments.

[Barbaustralia in reply to jenny2448]

Pregnosone made me so sick gave me cataracts high blood pressure crazy horrid I hope u do better

[Daver19021958]

Hi Jenny, I use diclofenac but sparingly when headaches are really bad, fortunately the headaches are getting less frequent. I was seeing a Neurologist and he said this was an effective treatment but rest and time to recover was the key.

[spouseM]

Hi Dave, sorry for your illness. My husband had VM as well, last September. He is recovered, fully as far as we can tell. He used cranial sacral massage....I believe this really helped him. My very best to you,

Michelle

[Daver19021958 in reply to spouseM]

Hi, Thanks for your concern and advise, I will check this out.

[Claudeminh]

Hi dave I’m in Melbourne and five and a half years post vm. Had a severe version too but yours is extremely severe with the encephalitis component.

I’m left with chronic migraine and nerve pain which is the weirdest pain thing ever. Not painful anymore just like having chills along limbs and body. Mostly nerve pain controlled but if I’m really tired, it returns. I advise getting an ongoing neurologist to monitor recovery. Worth paying for. Take the drugs they suggest. Makes huge difference. Also see if you have migraines( yiuneed disgnosis) and if you do, take the preventative drugs. Also the things that help are rest, gentle exercise, low inflammatory diet and the drugs. These are good for me. You can read my posts as I have been through it for five years and talked a lot about it here. If you need too you can message me as it feels so weird being the only person who had it if you can’t find anyone you know.

[NikkiGill in reply to Claudeminh]

Hi Claudeminh, my daughter has post-VM neurological symptoms too. She gets tingling when she's very tired; and sometimes she gets her words confused - she says the word she thinks of and the word that comes out of her mouth are different. It really scared me the first time she mentioned this; but in-between she is fine in this regard and it seems to happen only when she's very fatigued or has a really bad headache. I also noticed that prednisolone helped her but she was told to only take it for 5 days, so I am reluctant for her to take it again. I guess it can't hurt to consult a neurologist - we have not yet been referred to one! Look after yourself...

[Barbaustralia]

Hi Dave

I am in sydney too and found the hospital experience awful

How are you now

[Juliano_Martins]

Hi Dave and all - my name is Juliano and I also live in Sydney - Australia.

I also had VM last Jan/Feb and it took me a while to bet back to "normal". I still suffer from mild vertigo and headaches (specially on the forehead) every now and then and sometimes it feels like there is intracranial pressure. Really annoying. I sort of went through all the symptoms most of the people here have gone and I am glad I am feeling better now (I even started riding my motorbike again which is superb).

One thing that disappoints me is the lack of interest of some doctors when we complain about out struggles after VM. They just keep saying the symptoms are expected and recommend me to take care and rest, drink water etc...

Anyway, just wanted to share my experience here.

Cheers!!

[Daver19021958 in reply to Juliano_Martins]

Hi Juliano, Good to hear you are much better. I am substantially better however after 2yrs and 6 months I can still have some symptons again if I get the flu or a heavy cold but they pass off very quickly.

Great to hear that you are back on your motorbike again. Take care. Dave