Im 24 years old, and i live alone. About a month ago I went to hospital with a severe migraine. I was vomiting, the migraine had been going on for over 12 hours, no painkillers eased it at all. It was my mum who made the decision to take me to the hospital. And thank god she did. They took me straight through emergency and pumped me with antibiotics via drip, unsure what was wrong, but hoping it would kill whatever what attacking my system. I'm grateful for their fast thinking. Several days later and still in hospital, the headaches were still agonising. I had CT scans (all clear) and 2 lumbar puncture within a day of each other. The 1st one a botch, bedside job that didn't work. The second was done properly. I was cleared for bacterial meningitis, but was told I had viral. After the headaches eased and drip after drip of antibiotics and painkillers, I was sent home. With no information what so ever. Over the weekend I felt pretty yuck. Headachey (but not so bad I couldn't handle it) and nauseous. Several days later I was taken to emergency with another severe headache and vomiting. They thought it was post lumbar puncture headaches. After another CT, they found a large blood clot in my brain. Venous Sinus Thrombosis. I was in hospital for a month. A week if that I was bed ridden and they weren't sure I would make it. I've been out of hospital for 2 weeks now, and still have headaches and nausea daily, often I can't keep down a meal. On top of all that, due to the location of the blood clot, I've developed a condition called Papaladima. It means the swelling of optic nerves and disks. My eyes are being pushed out of shape due to the pressure in my head. While I havnt lost sight, what I see is blurred and often doubled, I cannot focus on things for more than a minute or 2. This condition also causes headaches and nausea. I can't catch a break.
Has anyone else had other issues post meningitis?
Is there anyone out there who understands what I'm going through?
Does anyone know when this agony of constant headaches and nausea will stop?
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SammiiJane
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Hi Sammiijane, I'm sorry that you are still suffering. There may be others that can tell you more and share their story. I thought I'd contact you after reading your subject line. I'm sure the VM gave you the blood clot. My mum had BM and actually died as a result of an aneurysm, which was due to the BM. So yes, definitely meningitis is to blame. I do hope you find the answers you are after and hope that you get some relief very soon. All the best. Mel
Hello. Sorry you've had such a rough time. I can only comment on one of your queries and that's about headache continuing. I'm 2 years since VM diagnosed and still have daily headaches and my GP has told me another patient had them 4 to 5 years. Best wishes.
Oh honey, I am so sorry! 😢 You never know what damage will be left in the wake of meningitis; it depends on the case, and where the brain was damaged. It can be difficult to find symptoms to match yours, but I hope someone can help. I had viral meningitis in January, but it went undiagnosed for 2 months. Thank goodness it wasn't bacterial, or I wouldn't have made it.
My auditory nerves are badly damaged. For the first several months, I basically had what felt like nonstop migraine-siezure combos. I couldn't tolerate even the slightest whisper of a sound without severe brain swelling, dizziness, nausea, what feels like electrocution, and I would even pass out cold. I wouldn't even feel myself hit the floor. I couldn't handle anything moving in my field of vision. I couldn't tolerate anything touching my skin, face, hair, head...nothing, no matter how soft. (Haha yes, I was filthy). And of course the headaches. That's the one thing you'll see in common with everyone's experience on this site..."a meningitis headache is like no headache you've ever had".
The neurologist prescribed me a steroid, and I really think it saved me. I never did really improve much until the inflammation and swelling was finally medically addressed. There are unpleasant side effects, to be sure, but none as unpleasant as a swelling brain. Ever since then, I've been steadily improving. The only sounds that still make me sick are running water, motors, crinkly/clinky things, and anything through a speaker. Those sounds are prevalent, so I still have some healing to do.
But it's July now, and I have a lot of my life back. The migraines are over, so the sound-triggered nausea and siezures are easier to tolerate. Most of my cognition is almost back to normal. I can't work yet because I can't control the sound environment with my clients, but I can feed myself, have visitors, clean some things, bathe (hooray!), and read again. I still get overstimulated and overwhelmed, but each week I can see steady progress. I plan (haha) to be able to go to the ocean in august. It helps to have goals to mark milestones.
The most important thing is to rest as much as you need. Your brain will tell you when it's had enough activity. My healing progresses faster when I rest more, believe it or not. Don't worry about doing too little, your sheer maddening boredom will motivate you to keep trying. Ask your neuro if he/she thinks a steroid could help you. Eat really clean food, avoid sweets and cold food/drink, and try to keep your blood sugar from going too high or low. It's tricky, but reduces brain flareup. And for Pete's sake, drink more water! No matter how much you drink, it's never enough because your brain will use it all up. Just drink more!
I hope your suffering is almost over; but even if you have a few more months, just know that there will come that day when you still don't feel great, but it's good enough for you to be thrilled to be where you're at. The torture WILL end, maybe even overnight! I wish you the best.
I was diagnosed with VM on 6/30/17. I've recently returned to work ( financial reasons) at the dislike of my family. Thinking I was over VM and its symptoms. My head is still hurting and very extreme at times. With sensitivity to light, sounds. Blurred vision at times. I'm trying to get a little advise from persons that have had VM. Should I be working? My head (temples) are throbbing. I'm waiting on my appt with neurologist.
Im so, so sorry dear to hear this. What are they going to do to relieve the pressure? There are many issues that can occur post meningitis. Headache and nausea are all part of it. But this condition you have doesn't sound like its resolved yet. Take good care luv, your in my prayers.
Oh yeah, also cranial osteopathy and craniosacral therapy (both are types of gentle medical massage) have helped me leaps and bounds. Do you have access to a highly skilled MT?
Sorry, that's a question for your neurologist. Mine didn't even know what craniosacral massage even *is*, so he lost a little credibility there. Even if he thinks it's not a good idea, he ought to know what it is.
Just remember after care is so bad in aus for me and a few others i have read about its non existent. You will also find viral is downplayed a lot most people get it and its like the flu. I was told one more hour without care and i would have been dead. Insist on further testing if they wont listen go elsewhere trust how you feel. Sounds to me you wouldn't have had that bleed if they had treated you correctly to begin with. I was 1 month on picc line antibiotics 1 month in and home hospital care. From adelaide. Xx
I'm going trough similar things after bein hospitalized two months ago for 10 days. The first severe migraine was on June and lasted for 12 hours. Didint go to hospital the first time due to circumstances but was hospitalized two weeks after that with high fever during the migraneattack.(Inspite of a migrane medication and visit to the doctor 3 days after the first ceisure).
I was cleared for bacterial megnitis, too and also had CT scans (all clear) and 2 lumbar puncture. Was cleared for herpes and other treadable viruses. Still had my third severe migraine at the hospital that lasted for 10 hours. (That felt worse than giving a birth without painkillers..went that trough 6 years ago, too...).Even the best iv painkillers in hospital didint ease the pain at all.(I wad already having oxycont for the side effects of my viral medication and got morphine, tramal and whatever they had iv, but still the pain didint ease..)They kept me in hospital yet another 6 days, but didint have any migraines after the one and was cleared on any treadable viruses and sent home with 4 weeks of sickleave..
This all happened two months ago and, as my nickname says, still feeling weird. The first 4 weeks were horrible with nerve and memory problems but 'woke up' about 3 weeks ago. Didnt feel the same as before but much better than the last 2 months..'Went to sleep' again from time to time but finally understood the 'retarted and anxious' state where I was the past 2 months.
But now. The nausea, which was the first sign of my viral megnitis, is back. And had a migraine attack (Not as severe as before but still)last saturday. (WTF? Can the virus be there still...?)
Was also sent home from hospital with nor instructions neither with a check out time, too. And the day they sent me home, all my white bloobcells were still very high.( If the normal is 100, I had 1000000000000000).
Dont know what to do..Should I have a another check out for .....Did they find out the virus you had? It sounds so familiar with all the violen vommitting and attacs that last several hours that I I think we are having the same virus.Im very sorry to read from your condition and freightened of whats still ahead. Im 35 years old now.
Sprry for my 'rough' launguage. Currently living in Finland and there is zero forums about viral megnitis at my mother launguage. Very pleased to find this one.
Forgot to say: The thing that apparently saved me for any brain injury ws my ADD medication. I am wery lucky I got the diagnose 2 years ago even thoug I didnt like the medication then and dont now.
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