8 months post VM

[Lsthompson]

I was diagnosed with viral meningitis July 2017. Spent 2 weeks in the hospital was discharged without being told anything about recovery or follow up. I still feel so weak and tired and just want to sleep. I've continued with headaches but in the past few weeks my neck starting hurting and both of my arms hurt and are weak, hurt if I try to lift them, reach for something and even when I lie down to sleep. Pain in my shoulder blades. Being on both sides confuses me and I really don't know what to do. I feel like all I do is complain about how bad I feel but have no clue what to do or even what type of doctor to go to.

[Jonad724]

I'm 16 years post near fatal VM so I hope I can help. What you're experiencing is pretty normal when recovering from the illness and your experience of the medical profession is no surprise either. In training doctors are told that VM is never worse than flu and that recovery is in line with other types of meningitis with the patient fully recovered in 2-4 weeks post attack. Unfortunately this is rarely the case with VM although the presenting symptoms indicated I was nearly dead, they still discharged me after three days only to be rushed back in three days later with no discernible blood pressure and heart rate dropping through 27.

Feeling tired and wanting to sleep is very normal and can last for some time after the illness. Strange aches and pains are also reported to be an after effect although I didn't suffer them. I did suffer from continuous headaches and rapid onset fatigue and it took me about 18 months to feel any semblance of normal again. The real only way to recover from VM is rest, rest and more rest I'm afraid. It just does take a long time to recover from VM, and if your GP or family doctor tells you otherwise ask them how many people they have treated with VM. Most times they will waffle on about meningitis all being the same but if you push them then the chances are they have never treated anyone for VM and the long term recovery.

Things that some people report as helping are Co-Enzyme Q10 tablets which help to release energy and Lysine tablets (for the headache) but at the moment you have to listen to your body and rest when it says rest. It's incredibly frustrating but I'm afraid that's really the only way to go. I wrote some blog posts about my experiences of recovering from VM (Just click my profile and then click posts) and I am now a Meningitis Now Community Ambassador so happy to help and support as you need, just message me via this site and I'll happily share my email address with you.

Hope this helps and good luck with your recovery, Jonathan

[kalirachi in reply to Jonad724]

Excellent very informative post, thank you. I suspect because there is no follow up many doctors do genuinely believe that most people fully recover in two to four weeks after leaving hospital. It seems to me that anyone still complaining of their symptoms after this time is regarded as being some sort of neurotic or hypochondriac. Doctors quite definitely need educating in the after effects of meningitis and I suspect many other illnesses.

[Emilymads]

Oh sounds horrible and I hope things improve for you very soon.We have now been told it can take years to get over being so poorly and Emily continues to get headaches visual problems and the symptoms you have talked about.Some days I just feel she needs to sleep and keep her at home.

She doesn’t look well at all.Its a constant worry.

Fi x

[kalirachi]

I understand your concerns and frustration. I too was discharged in September 2016 after five days in hospital. I was told I was over the 'worst' and would recover in a few weeks at home with plenty of rest. Nothing could have been farther from the truth. I couldn't stand up without support and couldn't walk even a few steps because of weakness and trembling in my legs and feet and constant intense dizziness. I tried to get help from the hospital and from my GP and was just told like a child to be patient and rest. Realizing I was totally on my own with absolutely no help, advice or support forthcoming I very slowly taught myself to stand up on my own and then take a few shakey steps. I continued trying relentlessly and after a couple of months I could walk on my own to the end of my road and back. The follow up appointment with a neurologist was supposed to be 3 months after leaving hospital. This was put forward to six months with no explanation. I continued practising and trying to walk normally during this time. I also had constant dizziness, a trembling right arm, visual aura, hearing problems, and total exhaustion after the slightest exertion. When I did see the neurologist he remarked that I had a very wide gait and was very unstable on my feet. I felt like telling him that under the circumstances I was overjoyed at being able to walk at all. A whole bunch of tests and scans were all negative. I have seen numerous consultants who seem to be baffled by my continuing symptoms. I have now finally been referred to a specialist neuro-otology unit in London where they propose to continue investigating. Obviously I am hoping they might come up with some answers. In summarizing anyone with lasting after effects from meningitis must not suffer in silence. I have now learnt the only way to get help is to keep complaining until some help is offered. I still feel very angry that it's necessary to have to do this just to get a minimal level of care. Anyway good luck and I do hope you will be feeling better soon.

[Jwire]

I’m sorry you aren’t feeling well. It’s going to take awhile. Sounds weird I know but make sure you are staying well hydrated, drinking lots of water and cut out pop, take vitamins daily, if you need to nap.. nap, go to bed early. Don’t push yourself. It will put you right back. Try the chiropractor if you haven’t. 2.5 years post vm I still get neck aches but I go to the chiropractor and it helps. Praying for you!

[Lsthompson in reply to Jwire]

Thank you for sharing. This site has been so helpful and is helping me feel like I'm not losing my mind and that I'm not the only person having such difficulties in recovering. Oh and I am a true believer in prayer thank you very much!

[spouseM]

I am so sorry you are experiencing this. My experience is with my husband, he had vm and made an easy recovery. One thing he did was go to cranial sacral message sessions. This particular type of message helps move the csf around...during the swelling of the tissues while you were under attack from this disease, you may not have a good flow of this fluid, so experience problems with that. I wish you the very, very best for a full recovery!

Michelle

[Lippistix in reply to spouseM]

Its good to hear this worked for your husband too! It's pretty much cured my daughter, she is much better now. Rosie still has the odd session when she feels the need, if she gets a headache or stiff neck, but over all, she is off painkillers and antidepressants and lives a normal life after suffering terribly for 2 years. I will say that we have an amazing osteopath who understands post VM and helps sufferers with his cranial massage technique....nice to hear positive news!

[spouseM in reply to Lippistix]

I am so glad to hear of Rosies' recovery! When east and western medicines come together, there is such strength.

[Lsthompson in reply to spouseM]

Thank you for your reply. Where or who does cranial sacral massages? Very interested in trying this.

[spouseM in reply to Lsthompson]

It is done by some that are massage therapists.,,but keep in mind it is a special branch of this. I have a friend who is an accomplished massage therapist and dose not do this. I would put in a search on the web (google)? and insert cranial sacral massage and the name of your town. If no one comes up for that specifically, contact the massage therapists in your area until someone can give you a lead. My very best to you!

[SUSIEDE]

Hi, I was in hospital August 2017 with VM and I totally agree with what everyone else is saying. A Doctor said to me 'we are very good when your between the sheets but once you leave hospital we are lacking'. It was only because I got emotional when I saw the Doctor and said no I wasn't OK they did more tests which have raised more issues, but at least they are dealing with them. I could not walk when I came home but have had a course of physiotherapy which helped. I still walk outside of the house with a stick. Fortunately I have not suffered headaches, but had terrible joint pains, I still have a stiff neck at times. Be blunt and forceful with your Doctor and tell them you want help. Good Luck and I do hope you get the help you need.

[EriktheRed in reply to SUSIEDE]

I'm in the US and ya the docs are not that helpful after your released... I had VM in October of last year... Just wish my hearing in my L ear would come back and for the neck and headaches to go away...

[jenny2448]

I have had meningioencephalitis in August September 2017. I have had terrible headaches across the eyes and up the back of my head. I have recently had another MRI and have new problems in my brain. I dont think it will ever end at present. I feel helpless when it come to my health. I couldnt walk or swollow properly and sensitive to light. My eyes have changed and i have had to surrender to this disease. Make sure you get plenty of rest and seek help from your gp. Lots of luck!!

[Lsthompson in reply to jenny2448]

Thank you for your reply, I also have some new issues show up on a MRI of the brain, they have found lesions on the brain and they are not sure what this is from as it wasn't on past MRI's. I've lost so much faith in our medical system and doctors and fee like if all the doctors would actually meet and talk with each other they might could figure it all out.

[Lippistix]

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