Husband diagnosed with VM, then told he never had it?

[CLF2014]

My husband has recently spent almost a week in hospital after being sent by his GP with suspected viral mengingitis.

His symptoms came on one day with a headache which grew progessively worse. He already suffers with cluster headaches so assumed it was an episode, but when he went to bed he ended up shivering with a fever, in agony with his head and a stiff neck. He was sensitive to light and the GP sent him straight to A&E.

He was given a lumbar puncture and prescribed IV Acyclovir, along with pain relief. Over the next couple of days his temperature was spiking at night then would settle during the day. He vomited and The stiffness in his neck, light sensitivity and his headache persisted to the point he was unable to function with the pain. He had been prescribed strong cocodamol and then oramorph which could have affected his headache.

Anyway, after having the lumbar puncture on the Friday and being told it was meningitis and he would have to stay in, he was then told on the Wednesday that his results had come back negative for meningitis?

I just don’t understand why he was treated for 5 days with IV anti virals if he didn’t have meningitis, and he’s been given no further explanation as to what it could have been? Has anyone else experienced anything similar?

[kalirachi]

Hi, your husband is not alone. I had a very similar experience in September 2016. I awoke at 3am with a skull busting headache, fever, constant vomiting, stiff neck and complete loss of balance; couldn't even stand up. My GP had me admitted to an emergency ward where they did a CT scan, an MRI brain scan and took tons of blood. In the evening they diagnosed a stroke. The following day they said this was wrong and thought it was a virus. They then started IV antibacterial and antiviral drugs. After four days they carried out a lumbar puncture which was completely messed up by a junior doctor. On the fifth day they discharged me saying there was no evidence of meningitis in the samples of blood and CSF from the LP despite the fact that it was contaminated with red blood cells when the needle pierced blood vessels during the botched procedure. I left hospital in a far worse condition than when I was admitted. There was no follow up support or aftercare whatsoever. At home I really thought I was going to die. It took me six months on my own trying to learn to walk again along with a plethora of other symptoms. Six months later I saw a neurologist who said he had no idea what was going on but thought it could be migraines and prescribed Amitriptyline which made matters far worse. 14 months later the hospital carried out more tests and discovered the 'virus' had destroyed my left vestibular nerve which explained the constant dizziness, vomiting and inability to walk etc. I still have many problems but now accept that the NHS is both unwilling and unable to offer any solutions.

[Starry in reply to kalirachi]

Gentle hugs. That sounds like a very rough ride. I empathize with the lack of care and after care a great deal.

[Amrita-A in reply to kalirachi]

What a frightening experience. I thought I was going to die, too. I did not have a lumbar puncture done because I had a feeling that it would somehow not be positive and no one would believe how sick I was. I was treated in the hospital for migraines and I know it was not migraines as I don't get headaches ordinarily and I had a fever, as well as all the other symptoms. I still feel horrible. What tests were finally conclusive about the vestibular nerve damage? Was the virus ever identified?

I hope you make a full recovery. Best wishes. xo

[kalirachi in reply to Amrita-A]

Hi, The virus was never found or identified. After the 'Epley' and 'Semont' maneuvers fiasco which went on for two months the Audiologist referred me to the head of the Audiology department when she realised these exercises were doing more harm than good. If somebody has BPPV they often work after a few attempts. The test carried out was Electronystagmography (ENG) and then Caloric Testing. These tests confirmed definitively there was 100% canal paresis (Vestibular Hypofunction) to the left side. In simple terms it means the balance nerve has been completely destroyed. Luckily the cochlea branch of the nerve was unaffected so my hearing was undamaged. Again it makes you wonder just how many people are wrongly diagnosed by ENT consultants with BPPV and have to endure what I went through until the penny drops and they realize this diagnosis is completely wrong. Although I still suffer nearly two years later from chronic dizziness and disequilibrium I certainly won't be going anywhere near a so called hospital consultant again!

[Starry]

Could it possibly be that they were communicating unclearly and meant it was negative for bacterial meningitis (but still vm)? Hospitals, at least in my experience don't take it seriously once bm is ruled out. Odd they put on an iv antiviral rather than iv antibiotic until the lumbar puncture result showed given it was suspected meningitis.

You are entitled to ask for your hospital medical records under gdpr. Perhaps they may yield more information?

[kalirachi in reply to Starry]

Hi Starry ,many thanks for your reply. Yes they did in fact use both antiviral and antibacterial, Aciclovir and Ceftriaxone. They then said that although they could find no trace of any bacterial or viral infection they firmly believed it was a virus which had now left my system. The infectious diseases team were suggesting not just meningitis but possibly Lyme disease, Weils disease, West Nile Virus and a few others! On the discharge papers they settled for 'Chronic Migraines' which was again completely wrong and a 'cop out' basically. Mind you this saga just continued. A year later an ENT consultant at the same hospital wrongly diagnosed Benign Paroxysmal Positional Vertigo for which a series of 'Epley' and 'Semont' maneuvers were carried out. This had a truly terrible effect over several months until they carried out ENG and Caloric testing which revealed Unilateral Vestibular Hypofunction, almost certainly caused by the virus. I've never suffered from a nervous disposition, but the very thought of ever going back to this hospital brings on paroxysms of trembling!

All the very best to your husband and I hope he starts feeling better soon.

[Starry in reply to kalirachi]

It was me had vm (I'm not the original poster) and yes i totally empathise my treatment was sufficiently poor I'd be scared to go back to that awful hospital too, came very close to making a complaint. For a good while after I even had ptsd like symptoms and panic attacks.

Take care xx

[Amrita-A]

I think doctors just do not have enough experience with VM. I think it is far more common than we are lead to believe, judging by the new number of people joining here every day. I think it is misdiagnosed frequently. I hope your husband makes a full recovery. Good thing he was on the antivirals at any rate. Best wishes. xo

[CLF2014]

I thought the same about them putting him on antivirals, nothing was confirmed but on the Friday a couple of hours after the lumbar puncture they said meningitis and he would be staying in. He was kept in on antivirals until Wednesday when they said the results from Friday were negative for meningitis and he could go home? It’s just really confused me.

He had all the symptoms and the pain wad excruciating for him, cocodamol and oramorph were given which intensified the headache. In the end only IV paracetamol gave him any relief. His temperature was spiking every morning and he was pouring with sweat most of the time. Had to wear sunglasses inside to help his eyes with the light. Vomited liquid. He was obviously very poorly and had recently had chicken pox a couple of months ago, so I think it’s related to that which has caused VM but I don’t understand why they would say meningitis after a lumbar puncture and CT scan, keep him in for 6 days after being going to A&E on the Thursday then change their minds and send him home non the wiser.

[kalirachi]

Judging from the number of people reporting similar experiences it does unfortunately seem to follow a pattern in hospitals generally. Discharging patients after they have been extremely ill without any proper diagnosis is totally unacceptable. Even worse is the total lack of concern about what happens to them once they have been sent home feeling far worse than when they were admitted. The whole system should be reviewed as a matter of urgency. At the very least GP's should be encouraged to follow up on their patients. When I was discharged feeling far worse, I asked my GP if I could be readmitted as every day I seemed to be deteriorating. I was told they would not re-admit me unless it was life threatening....no follow up visit, nothing, just left on my own to recover or perish! Totally disgusting way to treat people. Animals get better care from the vet.

[July23]

At lumbar puncture pressure is measured which differs between BM and VM . Then sample is sent for analysis of white blood cell content again this differs between both types of meningitis. These results are back within hours of L.P. While you wait for results you have IV antibiotics and antivirals just incase.

Then it takes days to see if there is any sign of the specific virus but they only look for viruses they can treat (herpes manly) . After that it is purely symptom management.

Occasionally they told some CSF for later examination incase of extreme symptoms or very far viruses.

There are national UK guidelines, to which all hospitals adhere for diagnosis and management. These are determined by NICE and are on Meningitis Uk website.

Hope that helps.