Meningitis Now
4,616 members1,520 posts

Advice please

Hi,

Since Sunday last week I have had headaches, nausea, lethargy, photophobia, fever and an intense burning pain in the back of my neck. On Wednesday my doctor told me she thought it was viral meningitis and that I should go home, keep hydrated and get plenty of bed rest. She also said if it gets worse I should head directly to A&E. It's been nearly a week now - I don't feel worse but I don't feel any improvement either. The neck pain was really intense last night but I couldn't bring myself to go to hospital because I didn't want to be turned away and seen as wasting their time.

From your experiences of VM, how long did your symptoms last? and do you have any tips on relieving the neck and shoulder pain? Pain killers don't seem to be working :( I'm tempted to call NHS 111 but again I feel so lucid, with no rash or throwing up, I'm not sure if I'm making a big deal out of nothing espiacally after reading what some of you guys have gone through.

Any advice would be much appreciated. Thank you.

12 Replies
oldestnewest

hi

I've never known a GP send anyone with suspected VM be sent home. That sounds ludicrous and dangerous to me.

if your still this sympomatic i would be without a doubt getting further help. You could be started on anti virals ot at least given decent painkillers.

I'm sorry your feeling ill. As far as no rash etc, my son didn't have the rash or any other symptom other then a temp and photopobia.

i don't think your in grave danger, because of the time frame this has been since onset of symptoms. but it certainly needs proper treatment and advice.

xxx

1 like
Reply

I think you should go to a and e. You won't be wasting their time. I had a ten day history without going to my gp and went on the tenth day and he immediately sent me to a and e. I was diagnosed with viral meningitis by LP and had to have 2 weeks of IV aciclovir. I'm still not well but am a lot better than I could've been. If you have got viral meningitis, you could have a strain that doesn't respond to IV aciclovir which does just mean rest and analgesia, but you need the hospital team to decide that. Hope you're feeling much better soon.

1 like
Reply

Sorry to hear you are feeling so unwell. VM can only be diagnosed with a lumbar puncture and you need to be in hospital for that. I was 5 days before doing anything (and ended up with a facial palsy too), but that day a friend got a GP to talk to me and she said to dial 999 for an ambulance - she was thinking stroke, but the hospital ruled that out almost straight away and an on-the-ball doc started meds for both bacterial and viral meningitis. After lumbar puncture BM was ruled out. I had a week of aciclover in total but a few days at home with community nurse coming in. Please don't think you are wasting anyone's time, but call an ambulance and tell them what you've said here. Good luck.

1 like
Reply

This is your life we're talking about. If your symptoms keep up one more day go get more help, from a infectious disease person, your body is screaming for help. Is there anybody you can stay with because you shouldn't be alone through this because it can get dangerous quickly. Keep a log of how you feel each day. To show the dr. The next time you see here which should be soon. Feel better, does heat or cold help? Also dark quiet rooms help. At the peak of the headache etc😊❤️

Reply

I would go directly to ER , contact a neurologist, & have a lumbar puncture procedure , you need to know ASAP , this is not an illness to take lightly . You need to know now so you can start your healing process !!! 🙏

1 like
Reply

Go to the hospital emergency now.... don't leave it any longer. Request full blood tests, lumbar puncture, CT scan of your head and X-ray of your chest area. Your symptoms are lasting way too long.

1 like
Reply

I was in the hospital for 15 days and out of work two and one half months that was 1 year ago

2 likes
Reply

Thanks for your advice everyone. It's really difficult not to feel like a fraud these days self-referring to A&E so your support means a lot guys - I will go and get seen asap xxx

1 like
Reply

Let us know what happens next! 😊❤️

Reply

Hi, I had VM back in 2002 and waited a week eating pain killers from home suffering with the worst headaches I have ever had in my entire life and almost died because of it! But theres one thing I havent heard anyone mention yet on here that definitely comes hand and hand with meningitis and thats the part about the feeling of being electricuted every few minutes due to the infection in your brain and spinal cord affecting your nervous system? OMG that part was almost as bad as the headaches! I spent 32 days in the hospital because I waited and mine got really bad, they said if I would of waited1 more day they might not of been able to save me! I dont get how these doctors wright something so terrible off as something so easy that most people can recover from in just a couple of days! Then I cant help but look at how doctors treat people now a days... Makes me think things have really changed alot more than we think I guess! I bet your now wandering why someone who had meningitis that long ago is reading comments about this topic? Well I was healthy I thought all those years, hell I never get much more than an allergy problem since then! Until Jan 2, 2014 when I got sick! At first I thought it was a hangover lol from New Years but I couldn't get up for 3 weeks when a friend came by and took me to see his Dr. I found out I had high blood pressure lol ok.. And he also gave me antibiotics for pneumonia and bronchitis, I was better in a couple days and back to work! But like 2 days later the seizures started.. Like 20-30 a day! I went to the ER and they told me to see a neurologist but I didnt have health insurance.I own a small local bar in NY that is barely getting by and I'm married to a immigrant so I cant afford $700 a month for the cheapest insurance I can find plus theres co-pays and even if i close the business I cant get free insurance because of my husband! The hospital actually sent me home like 20 different times.. Gave me perscriptions for seizure meds but their like 300 bucks for 30 day suply what about the blood pressure meds im still not taking? Anyways so I close my bar, leave my husband and move to another state to try and save my life... There it takes a while to find a good primary to listen to all the medical issues because now there's many, I'm shitting blood, my by entire body hurts but it started in my right lower leg, and so on. They did an MRI and it came up with something about my PONS in my brain, I didnt really pay to much attention because they said it was nothing and that everything was fine. In that state I got diagnosed with Seizure disorder, Sleep Apnea, Underactive Thyroid, Peripheral Neuropathic Pain, Problem with function of Peripheral Nerve, Fibromyalgia, High Blood Pressure, I also have an unsolved problem of my blood oxygen level dropping to as low as 74% for no reason and I was a Diabetic for a week but it went away lucky! So this state got me on disability and health enough so I could go back home and keep the health insurance as well now but unfortunately the trip back to NY took more out of me than I thought and spent the first full month there in the hospital and thats where they did the 2nd MRI that talks about my PONS problem... Its actually called Chronic small vessel ischemia which basically means the white matter in my brain is dying and theres no cure. Stupid Dr's in NY did NOT tell me about this either, they said everything on my MRI looks fine I guess because they were doing it looking for signs of seizures not that my brain was dying off even tho the MRI results have CHRONIC SMALL VESSEL ISCHEMIA wrote clearly across the top off the test? Wonder why they didnt tell me both times now? So cold hits NY after only being there for 4 months and my body cant take it and im forced to leave and fast! So neurologist in new state orders a MRI and this MRI says Osmotic Demyelination Syndrome .. Both are PONS problem when I say this test I remember seeing something about the PONS on the last MRI but didnt Google anything about what the big words mean because they said everything was fine but here I see PONS again so I'm going to check them out! Small Vessel is your white matter is dying and you start to get all kinds of crazy stuff happening to you that starts with Dementia. And the last MRI we'll call it ODS is basically locked in syndrome I guess while my brain is going to dye judging by the other MRIs... But try getting a doctor to tell you the truth! When I asked this neurologist about this he said the only way this could be true is if a doctor had dropped my sodium level to fast but that didnt happen!!!! I asked him how do you know this? Tell me, what do you know about my history? You dont have any of my past medical records and when I asked you to get my medical records you wanted to start fresh? I dont want to start fresh.. I have to big of a medical history to start fresh! His office called me a week later telling me he left that practice and wanted to know if I wanted them to refer me to another doctor? I'm not sure if any of this is related to me having meningitis and it just took time or they or any other one of the many doctors ive see did something to my sodium but the problem in my PONS is becoming very real. Please dont wait on going to the ER if you feel your life is at risk ever and always remeber if you have a problem with your treatment to speak to a Patients Advocate. I find by just asking to speak to one when they are being rude gets me better treatment! Sorry so long and good luck!

1 like
Reply

So sorry to hear. Please read my daughter's story of how cranial massage has cured her of post VM symptoms. Rosie S's Story on meningitis now site! Wishing you well. Xx

1 like
Reply

Please give my daughter's story a read on this site. Rosie S's Story. Here lies sugnificant success (from what we know so far), for complete recovery from VM!

She suffered for near on two years before discovering meningitis now, subsequently trying cranial massage by visiting an independant cranial osteopath in her area.

All the symptoms you are experiencing are pretty much similar to what she suffered. It seems the key, and recent breakthrough, is releasing the spinal fluid which VM leaves a blockage for...and enabling it to flow again through your body, particularly your head.

There are some on this sight who have now given it a go after reading about it, and after just a couple of sessions, felt considerable relief.

I the last few days Rosie and I have been contacted by the media, news papers and radio to tell our story of this potential breakthrough!

We now feel we want to help as many poor people who have suffered this dreadful illness for which before now seemed there was no light at the end of the tunnel.

Good luck and please keep posed how you get on if you try this amazing treatment. Rosie coupled this with acupuncture, having alternate treatments once a week, now a couple of months in. Xx

1 like
Reply

You may also like...