Long term after effects of viral meningitis

[Moranmom85]

I was diagnosed with VM in April 2011. So 8 years later and I still suffer from daily headaches. Some days are easier than others but I go through "spells" where the headaches get really bad for weeks at a time. I also still suffer from extreme fatigue and now have anxiety. I was on Amitriptyline for years but the side effects were not worth it as I was still having headaches. I've also tried acupuncture. My Dr. Is sympathetic but at the same time slightly clueless. She never invalidates my symptoms but also can never tell me if this is normal. Any others still having the bad headaches and fatigue so many years later. The worst headaches for me come at the base of my skull or the top on my head and feel like hot lava is being squeezed into my brain. But I do also get headaches in my temples or behind my eyes that throb. The medical knowledge around here blows. I spent three days in the hospital after being diagnosed and was released as soon as they confyit was viral and not bacterial. The infectious disease specialist came to see me on my last day and told me I would feel better and be headache free in about 14 days. I really wish I could go back and knock him out.

[bekele]

I too was diagnosed with VM in2012.Daily headaches fatigue,just like you. i still deal with them daily.whenever I push myself as far as working extra hours or mowing my lawn,somewhat large,I always pay the price.I have to lay down,take 3 Ibuprofin and use an Ice pack.The headache subsides and comes back every 6 hours and I repeat the process.I rarely have a headache free day. Some things that i have heard is that the Brain needs 15 years to heal from a bout with Meningitis.My headaches do start at the nape of my neck as well.i tell you Ice pack helps.Buy a good bag ,fill it with freezable cubes that you can find in the stores so you dont have to worry about making ice cubes all the time.

[Rah2013]

Hello there. I understand your pain. I was diagnosed with VM in June 2013. I still have headaches, dizziness, fatigue, short-term memory loss, and agitation. Just this past weekend, I felt like I did when I had it in 2013. This headache has been here for a week now. It comes and goes. My head/brain feels like it’s swimming. At this point, I don’t know what else to do except rest and take OTC Ibuprofen when needed. It seems to help some but not as much as I would like. The heat, rain, and stress triggers it. I also was told that after 14 days, I should be back to normal. That couldn’t have been farther from the truth. I’ve honestly stopped going to the doctor and just do what I know to do. Of course I’ll go if things are out of the ordinary or I’m ill to the point of laying around. Doctors don’t seem to know as much about the after effects of this illness than they do about the illness. That’s my opinion. So this site is very helpful!

[kalirachi in reply to Rah2013]

Hello everyone,

I can fully relate to all the posts here, in September 2016 I was admitted to the Acute Medical unit of the Sussex County Hospital in Brighton with all the symptoms of meningitis. Before this I was always very protective of the NHS but the treatment I received was nothing short of appalling. After a CT scan an ECG and blood tests they diagnosed a stroke. A few hours later after having been admitted to the stroke unit they carried out an MRI brain scan and declared it wasn't a stroke. I was then seen by the infectious diseases team who said I had been infected with a virus or possibly some bacterial infection, meningoencephalitis, lyme disease, west nile virus or something they had yet to identify. Their main concern they said was neurological damage. They immediately started an infusion of IV antiviral and antibacterial drugs which lasted for 3 days. I was told a lumbar puncture would reveal what sort of infection it was. They then carried out the lumbar puncture but made a complete mess up of it by piercing blood vessels on the way in and contaminating the sample. 24 hours later I was discharged with a note of the discharge sheet that I had been suffering with chronic migraines. There was no follow up or after care either from the hospital or my GP. It took me 6 months to learn to walk again and I was suffering with permanent dizziness, tremors in my head, arms and legs and head splitting headaches. A follow up appointment 6 months later with a neurologist was pointless, he had no idea what was going on or what was causing my lasting symptoms. A further MRI brain scan with meatus (ears included) was negative, as was a full heart scan and a carotid artery scan. The neurologist was baffled, admitted he had no idea what was causing my headaches, constant dizziness and lack of balance and prescribed Amitriptyline. This made everything much worse. I then saw an ENT consultant who wrongly diagnosed BPPV for which I received a series of Epley maneuvers in the hospitals Audiology Department. As I didn't have BPPV these maneuvers increased the dizziness to extreme vertigo which was constant. I also found it hard to walk and it took several months to get back to just staggering around. Realising something was wrong the hospital then carried our electronystagmography and caloric tests which confirmed the virus had destroyed my left hand vestibular (balance) nerve. I was given a 12 week programme of vestibular exercises which made no difference, except to increase the dizziness and disequilibrium. A further 12 weeks was suggested and then another six weeks. Far from improving my condition became much worse. Utterly exasperated I complained to the NHS about this incredible example of gross incompetence which was now approaching 2 years. I was still completely incapacitated from the constant dizziness and disequilibrium.

I was given an appointment with this country's leading expert who is a professor of neurology and neuro-otology in Queens Square, London. It quickly became apparent my notes and medical history had not been sent him by the hospital in Brighton and he had no idea of what had previously transpired. After a brief consultation he suggested the total mishandling of my case together with the continual misdiagnoses and inappropriate treatments had significantly exacerbated the symptoms which was a very relevant factor in my poor recovery. All he could suggest was an anti anxiety and anti depressive drug called Sertraline. He said I certainly didn't seem to be anxious or depressed and in fact despite what had gone on I still had a very positive attitude, but this drug 'might just help'. I politely thanked him for his time and vowed never to see another doctor again as they clearly have no idea at all of how to treat the plethora of after effects from meningitis or numerous other neurological problems.

[Barbaustralia]

Yeah medical people are the worst

[IRHONDA in reply to Barbaustralia]

I have had it 4 times in Hospital and been treated so well all 4 times they knew what they were dealing with, I went in not knowing what it was they ordered the tests immediately on every account and the last time I went in 2014 the neurologist ordered more tests and found I had Mollarets and he told me to get to the hospital immediately no waiting as it can kill me, so all I can say is praise each time here in Australia at 3 different hospitals out of the 4 times I had it so I cannot complain, then with the mini bout I had in Feb, my doctor tore into to me for not going … so I am happy to be in this country after reading all the comments from America and England, I believe I am in the right place to look after me, and each time it never cost me a cent ! 7/10 days of Hospitalization and a Private Room.

[Emerald8888]

Hi that is exactly how I explained my headaches to my neurologist .... Hot lava. Same places. I constantly feel a weight in my head but when those severe headaches start too it is just too much. No amount of pain killers, I've packs, hot water bottles, darkened rooms help. I would have cycles of being knocked out exhausted for weeks. I was on Amitriptyline for a year 60mg - nothing. My Neurologist has told me that because you are walking around with constant headaches which themselves bring on sensitivities like photophobia and phonophobia , even trying to concentrate and maintain information is difficult. It is a build up of all the sensitivities from the headaches you are dealing with that makes you feel so exhausted. This made total sense to me. He has given me different options which is good, the trouble has been the length of time I've waited to see him. I am now on an anti epileptic medication called Topiramate which I have only just started and will let you know over the coming weeks if that works. There is also an option to start beta blockers which are supposed to help but I can't as I am asthmatic. My Neurologist mentioned being referred to a chronic pain clinic or a migraine clinic as options too. These are held at local hospitals. Have you seen a Neurologist? Ask your GP for a referral. Also big news this week for migraine sufferers that a new drug out is helping migraines. They've just started it in Scotland and it is getting rave reviews. They are trying to get funding for it in England - I can't remember it's name and I can't imagine my head pains going on as long as yours. I hope some of this helps, best wishes. T

[Emerald8888]

PS ... If your GP isn't helping go to your local A & E when your head pains are really bad. With your history they should call the Oncall Neurologist there and then or at least make an appointment for you. T

[IRHONDA]

omggggggggggggggggggggg that is terrible when I get it I am hospitalized for 7/10 days each time … you need to be on medication for this, it wasn't till my last bout that they did more tests and found I have the vm that can kill me if I don't get the meds into me quickly what fools .. this is very bad... you need to get your own neurologist please do that...I don't know how you stayed at home with it as I have had 4 full blown bouts and quite a few smaller ones but I had one in feb which was just about full blown and im still suffering from it... yes I have the same either the pain at the very top of my head or into the neck and very rarely goes...something u tend to live with although sometimes is a lot worse than others … tinnitus … eye problems … headaches ...anxiety....very tired, so many different things we are left with it can be crippling at times and all u want to do is go to sleep and sought of dream dream and dream sometimes life sucks … but we have to get up and get on with it or we throw the towel in so many times I have wanted to after 4 bouts but im getting there we can if we make ourselves take care best of luck don't go back to that hospital that sent u home please x

[OlamanaMartel]

I had v/m 2017sept, I still feel I have a mild version of it all symptoms except vomiting and not as much dizziness, and rarely passing out. In bed mostly and worn out after doing anything at all and ready for bed after any simple task.finally got an apt with a neurologist at the hospital that treated me for my v/m after being led on by one who had treated me in the past, and then told me after making me wait for months that he would no longer take my insurance. Would have been nice to have told me up front , and I would have been I there by now! It’s been a long over a year and a half being ill, and the anxiety u mentioned is just setting in. I just was thinking it was a few issues that would normally not cause it for me, but nice to know it is just another part of this miserable way of being. I have enough patience for many, so I guess I will just hang in. I also have 2 wonderful partners to help care for me, so I am truly blessed. Your words were one of the first things I read this morning, and see I may have the symptoms for the long haul unless this neurologist is a miracle worker, so I guess I need to get used to it all and b blessed it’s no worse than it is and I have 2 to care for me and no one to care for. Bless us all with our pain and struggle.

[Jonad724]

I had near fatal VM in 2002, like you was in hospital for three days and was discharged because it's 'only viral' despite the fact that I nearly died in the early hours of the morning before. Three days later I was rushed back in with heart rate dropping through 27 and no discernible blood pressure. As my neurologist said I was 'checking out of hotel life'.

I was told by my GP that I'd be better in 14 days and long story short I was off work for nearly 6 months and I had to in the end confront my GP, at a time when I didn't feel like it at all, to finally admit he hadn't treated anyone with VM and that the 14 day estimate was what doctors are taught in training.

In terms of after effects, I have an acquired brain injury which has led to intolerances to caffeine, alcohol, cocoa and latterly nuts. I have a permanent headache which varies in intensity and I was diagnosed with recurring VM in 2010, again after a battle with my GP who told me I couldn't have it (Mollaret's) because it is so rare.

I would have happily punched the lights out of any medical professional who said that VM is like any other type, doesn't have an long lasting after effects and is always the mild version of the disease. Fortunately we now have Viral Awareness week and the actual impact of VM is much better known.

The good news is that, even with after effects, it isn't a life sentence. I have completed several triathlons, two half marathons and three half ironman triathlons since coming back to the sport in 2007.

I still get pain behind my eyes when the headache gets worse, I'm prone to fatigue and quite a few other after effects. It might be worth printing off the fact sheet about VM from the MN website and taking it to show your GP, it worked with mine. All the information is also on this webpage meningitisnow.org/meningiti... and the fact sheet is here too.

Good luck and take care, Jonathan

[Rowi]

I'm sorry you're still having headaches. Some people on here have been helped by osteopathic work. I would make sure s/he comes recommended by someone if you can. I've also posted some things that have helped me, chiropractic being one of them. If you poke around on this site, you will find other suggestions. Perhaps some will help. Good luck.

[11765]

OMG I got VM on 6-29-2017 I still have headache daily. Some severe some I just deal with. I also developed narcolepsy which is really a challenge at times. I get "crazy brain" alot. I ask the same question ..." Does it ever end?" Thanks for posting.