Taking matters into my own hands. - Meningitis Now

Meningitis Now
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Taking matters into my own hands.

Hardy150612
Hardy150612

Soooo... I had viral meningitis back in Sept/Oct 2018 I have never got rid of the headache that kicked it all off and have been seeing my doctor at least monthly since and was off work for 6 months. Everytime I go to the doctor I feel like they think I am making it up and should be better by now. I tried to reduce all my medication before (when the doctor suggested I try reducing them to see if there is improvement) and ended up worse. My last prescription came with a note from my doctor saying to reduce my pain killers as they are not for long term use and need to be reviewed. I really don't want to sit through another condescending chat with them. So I have decided this new year to not ask for any further prescriptions

Has anyone else done the same? I add I have never been referred back to hospital aas when I asked I was told there isn't anything they would do for me.

Sorry for the long post..

19 Replies
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Nobody should suffer pain! Ask for a referral to a pain clinic. I had a constant headache for 2 months post meningitis, initially I took panadol but decided to live with low grade pain n only take panadol when it got worse. It made me miserable. Now I still get headaches but I go lie down n rest n they usually go away. Drs dont know about long term effects, you have to educate them. My GP laughs with me and tells me I know more about this illness than him! Ask for a referral to a Neurologist as well.

zakib5
zakib5
in reply to menchild

sorry to hear it.

My wife has been in hospital for almost 3 weeks now - She's 25 years old - and no history of illnesses. Neurologist came yesterday to talk to us. Honestly, I was very disappointed with the answers given by the Neurologist. I don't think the Neurologist have any idea about the viral meningitis.

She was seen by 12 Doctors for the last past 3 weeks. No one so far has confirmed she has viral meningitis.

Some doctors said, they think she has it and others said no, it's an odd virus. There's no confirmation after

- CT scans x2

- MRI x2

- Lumbar Puncture x1 (another 1 this week)

- blood Test x8

Currently she suffers from:

- headache (it's always there)

- Numb (she feels numbness face, leg and hands - it keeps coming and going)

Any suggestions what to do?

Am willing to go anywhere in the world solution.

Electricsooz
Electricsooz
in reply to zakib5

I am new to all this and it’s still early days for me. I have had problems getting a clear diagnosis due to an unusual presentation. My discharge letter just said ?Viral Meningitis. Sorry I can’t help you but it may help to know someone else out there also had problem with a clear diagnosis. I can see you posted a month ago, how are things now? Did you eventually get anything confirmed?

I just keep getting told one day it will go away. Which I live and pray for but with two kids under six and a full time job it needs to do one 😂

I have so far managed with some paracetamol today but I have been in bed 80% of the time which is not manageable for every day living.

I think I'll make an appointment with the GP again to discuss their note and see if there is another route I should go down. The last time there was a mix up with my medication and I was told I was a month ahead with my medication (which I add I was actually behind as the dose age had been doubled) the doctor said oh just ignore e that it's a mix up with one of the other partners and they didn't know about my case 🙈 I have already paid out alot on natural supplements, massage, osteopathy. I have tried meditation mindfullness but the damn headache won't shift 😡

Thanks for the reply makes me feel a little better knowing that it not all in my head, pardon the pun. Xx

Apparently cbd oil is excellent for pain relief dont know where u live or how to get it. In Aust its avail on script but wd cost $500 for a small amount! I cant work at moment so thats out! I am taking a whole cocktail of vitamins and natural remedies and headaches have reduced considerably but never gone for good. Sucks! You are not alone!

How are you managing your full time job? Do you find you have enough energy to cope with it? I have been doing little bits but find an hour a day is around my level. I can sit at home on my own and do maths questions ( I m a maths tutor) but when it comes to interacting with others, I CAN do it but boy does my energy drop massively the next day. I know we are all unique and so are our post meningitis symptoms. But it s good to hear from others who are in a similar situation to some extent. Keep going :)

sorry to hear it.

My wife has been in hospital for almost 3 weeks now - She's 25 years old - and no history of illnesses. Neurologist came yesterday to talk to us. Honestly, I was very disappointed with the answers given by the Neurologist. I don't think the Neurologist have any idea about the viral meningitis.

She was seen by 12 Doctors for the last past 3 weeks. No one so far has confirmed she has viral meningitis.

Some doctors said, they think she has it and others said no, it's an odd virus. There's no confirmation after

- CT scans x2

- MRI x2

- Lumbar Puncture x1 (another 1 this week)

- blood Test x8

Currently she suffers from:

- headache (it's always there)

- Numb (she feels numbness face, leg and hands - it keeps coming and going)

Any suggestions what to do?

Am willing to go anywhere in the world solution.

kalirachi
kalirachi
in reply to zakib5

Really sorry to hear your wife is going through this. Unfortunately it seems this is not that uncommon. I have also had a very similar experience in 2016 both in and out of hospital. The skull splitting headache and neck pain was unimaginable, and being unable to stand or walk was quite terrifying particularly when it became clear that the doctors and neurologists had absolutely no idea of what the problem was.

A CT scan, two MRI brain scans, a lumbar puncture were all negative as were ECG tests an Echocardiogram, a carotid artery ultrasound scan and numerous blood tests. Initially I was told it was a stroke, then no, it definitely wasn't a stroke, it was a serious viral infection probably meningoencephalitis that they couldn't find any trace of! Mind you it didn't help when they completely messed up the lumbar puncture by piercing blood vessels with the large needle on the way through the spinal column.

After five days and nights of this and still being unable to stand or walk I was discharged from hospital with a diagnosis of 'Migraines' and told I would recover at home in a couple of weeks with plenty of rest! I felt absolutely terrible and asked my GP if he could help or if not could I go back to hospital, he said the hospital wouldn't re-admit me and there was really nothing he could do.

Six months later I still couldn't walk but managed with help to get back to hospital for an outpatient follow up appointment with a neurologist. He carried out the usual neurological exam and confessed he had no idea what was wrong with me. All he could do was prescribe Amitriptyline which made everything very much worse.

Two years into this and after complaining to the NHS in September 2018 I finally got to see this country's leading Professor of neurology at a well known London hospital. He thought my lingering symptoms were the legacy of some viral infection possibly meningitis and that tremors I now had in my head, arms and legs and inability to walk properly were probably caused by PTSD which in his opinion was undoubtedly caused by the very poor diagnosis and treatment, or complete lack of it that I had received initially. His answer was to try and live life the best I could and to start on 50mg of Sertraline an antidepressant! I thanked him but refused the medication.

It took a long time for the penny to drop, but I then realised just how little the whole medical profession understands about viruses and their neurological effects. Fully understanding this ironically has helped. I haven't been near a doctor or a hospital now for 16 months and feel much better for it. I still have many of the problems but at least now I'm not pretending that there must be a doctor or a specialist out there somewhere who can help. I know there isn't!!!

Kind of how I am feeling too. Just thinking what's the point of continually taking pain meds if they aren't really helping and the doctors appointments are really just "oh right still the same? See you in a month or two" x

Hardy150612
Hardy150612
in reply to zakib5

I would twll her to stay put till she sees every specialist she can as once she's has been discharged that's really it and there's not much support. I hope she gets well soon xx

irene123
irene123
in reply to zakib5

Perhaps get her checked for Epstein Barr Virus, Herpes viruses such as Zoster etc, can cause these headaches... Natural anti virals are available such as Olive leaf extract, Sumbucus Nigra, through health Shops. Even though most Drs here in NZ rubbish them, they can possibly help. Also a Homeopath can assist here , if you can get a good one recommended to you. Good Luck!

Hello, VM dec 2015, wondering if this info might help with ur pain issues? I’m not a doctor, but was told this was my last pain prescription! I begged a naturalpath dr to prescribe me low dose Naltrexone 4 mg cap, I diluted the 4 mg cap to a 2 mg dose with distilled water & started what I call mini rehab at home. The compounding pharmacy suppling the LD naltrexone was excellent at helping my husband and I with dosing, and answering questions. The cost is 30$ a month for LD Naltrexone . It wasn’t easy, but without the LD Naltrexone I would have bought Street drugs since my pain issues had not resolved, the LD Naltrexone saved me, controlled most of my pain & gave me energy& a since of well being I hadn’t felt since the VM. I’m still using the Naltrexone 4 mg daily & believe I always will. Hope ur journey is safe and brings you the answers you require, you are your best Advocate .

Wishing you well in the new year, this may not be what works but it’s info & we need all the resources we can gather from others.

Sonnerkay

Im using it too! Just 6 months now and it is such a difference. I had vm in 2015. And headaches all the time. Could not live a normal live. Still very low key live but i have a live again. And one Ldn really helped with that!

Hi- I understand your predicament. I’ve had viral meningitis twice. The last time in 2015 and I still go through terrible episodes of what I call the “meningitis headache”. It is unlike a migraine or anything else. Advil doesn’t help it and the only thing to help is a prescription painkiller. However, with people misusing painkillers they don’t want to prescribe them. I have about 15 left from my episode in 2015 and that is it! It is scary to think I won’t have any once those are gone. I break them in half and hope the half doses are effective. I don’t think doctors understand the residual pain that goes on after VM. I wish I knew of a dr that understands this!

I feel this is the issue too. I have said to them I am going on their advice and if I need to reduce/change/stop meds then that's fine with me I would rather not have to take pills everyday and be back to myself I add. I thi k I am just getting to the over fed up stage now.

Thanks again for the reply good to know that I am not alone in this silly journey xx

I'm 18 years post near fatal VM this year and so I hope my experience helps. First and foremost, the medical profession is taught in training that VM is no worse than flu, there are few, if any, after effects and you should recover in 2-3 weeks which may explain your doctor's attitude.

I had very similar battles with my GP who was refusing to sign me off work as he said I was 'malingering'. In the end I asked him how many people with VM he had treated and after a lot of bluff and bluster he finally admitted that he had never treated anyone with that strain of disease 'but it's never serious' was his parting shot.

I could barely walk and talk after the attack and was rushed back into hospital three days after first being discharged 'because VM is not serious and you would be better recovering at home'. When I was rushed back in I was pretty much 'checking out of hotel life' as my neurologist told me. Fortunately I had access to a Harley Street Neurologist through my BUPA health insurance and he was a recognised expert in the treatment of meningitis. I was taking pain killers for 8-9 weeks after the initial attack but he told me that the problem with that is after a few days the brain stops producing it's own pain killers and so when the tablets wear off the headache is worse, it's a vicious circle. I had to come off the pain killers and just suffer until my brain started producing them again. I'm not recommending you do this without medical supervision but it may be something you end up doing.

What I did with my GP was to take a copy of the Meningitis Now fact sheer on VM which you can get here: meningitisnow.ams3.cdn.digi...

and it clearly says that recovery times can be slow and not everyone makes a full recovery or may have to change what 'normal' means. It's not necessarily a life sentence though as I have done things after VM I wouldn't have done before like three half ironman triathlons, three half marathons and several other races. I live with some after effects including intolerances to caffeine, alcohol, nuts, cocoa and phenylamine (which is found in sports and diet drinks). I live with a headache which varies in intensity and also I was diagnosed with the recurrent form of VM (Mollaret's) in 2010 after being told by my GP that I 'couldn't possibly have Mollaret's because it is so rare'. Spotting a theme here!

I'm now a volunteer community ambassador with Meningitis Now with a specific interest in VM so if I can help please do PM me. I also wrote some blog posts on this site about my recovery which you may find interesting. Just click on my profile and 'post's if you'd like to see them.

Take care, Jonathan

Jonathan,

You are music to my ears.

My episode started with what I thought was a run of the mill migraine (which I hadn't experienced since early high school) fast forward to the next day I couldn't open my eyes more than a slit and generally felt awful. I had to call my mum to take me to the GP which is literally across from my house. Thankfully the GP I saw was on the ball and pretty much diagnosed it right away and sent me to hospital for all the relevant tests. When I got there - now I admit I am a stubborn bugger when it comes to lying down to things!! - I couldn't sit up or even have the bed up slightly, but I shuffled myself to the toilet and back, because of this the nurse in charge said oh she's at it when handing over to the next shift!!!

The consultant then came in to say I definately had VM and was being admitted, by this stage I was flat out no pillow nothing and pretty much stayed in that position for a fortnight. A junior doctor did try and discharge me three days in and luckily my mum was there and asked if they would be ambulancing me home as I couldn't be upright to make the half an hour journey home. Neurology then stepped in advising that it was an error and I had to stay put. As soon as I managed to sit up - and I mean as soon as a Dr saw me sit up for 5 minutes one day I was discharged with no further follow ups.

My GP sounds just like your now though not knowing what is happening and basically treating my headache as just a headache.

I have a job where by I sit infront of 4 computer screens for up to 12 hours a day and trying to get through to my doctor that I the lights ect make it worse blah blah blah seems to fall on deaf ears.

Anyway I have ranted enough thank you for your lovely reply. I hope I am on the road to my new 'normal' soon x

No problem, it's good to rant, you may have seen my blog post 'Oh no it's Angry Dad' so I understand the need to vent. You can ask your employer to make reasonable changes for you with screens, privacy filters for example cut down the amount of light getting through and I find the really helpful. If they won't see if there is a 'night shift' function on the system (Windows 8 & 10 has this) which tones down the blue light which also makes it easier.

I was discharged from hospital because I could stand up, the fact I had two male nurses holding me up didn't seem to make any difference and I was out in three days. As I mentioned I was rushed back in three days later and one of the few things I can remember of that ambulance journey was the paramedic saying to his colleague who was driving 'you'd better put the lights and noise on Dave, we're losing him'. I remember trying to say to my wife 'please don't let me die' but by that point my speech was still very difficult and I passed out again apparently.

If I can help at all though please PM me and I'll happily share my email address with you, thanks, Jonathan

Dear Hardy150612, My doctor prescribed Klonopin for the headache. It worked the first time I took it. Maybe it could help you. Good luck on your journey.

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