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Meningitis Now
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Feel like a fraud!

6 weeks ago, I had a sudden onset pounding headache. I took some paracetamol and went to bed. I woke up the following morning feeling awful. I drank a pint of water and had some more paracetamol, then projectile vomited it all back up. I went back to bed and slept most of the day, waking up at about 4pm. My head was still pounding and I was all hot and sweaty. I had some water and tried to eat a banana which all ended up being thrown up again. I work at a school, so put it down to picking up a tummy bug. By Sunday, I couldn't stand any light or noise and pretty much slept all day. I kept going hot and cold, head was still killing me and my neck started aching and getting stiff. By Monday morning, my symptoms had got worse and my husband took me to the Doctors. The Doctor said that I should be taking ibuprofen (even though I hadn't eaten anything other than the banana that I threw up) and sent me home to take some ibuprofen. As the day wore on, I didn't improve but became more lethargic. My husband took me back to the Doctors who then sent me to hospital. They said it was viral meningitis after bloods, ECG and MRI scan. I was sent home 24 hours later and told that my symptoms would improve and that I would feel better within 7-10 days!

6 weeks on and I am currently laying in bed with a headache and feeling really dizzy and totally fed up!

I admit, the pain is nowhere near as bad as it was 6 weeks ago and I have had days when I have felt fine. Monday and Tuesday of this week I felt great. I did a lot of travelling, then went shopping on Wednesday, by Wednesday evening, I was feeling exhausted and dizzy. My head, neck, back and fingers were all aching. Thursday morning, I needed to take my 16 year old daughter to enrol at 6th form. I came home after just 2 hours and went straight to bed. My husband is getting frustrated with me as I will be fine, and then will suddenly go quiet and need to rest.

My hands are really achy and stiff and get worse when I am tired. I went back to the Doctors 2 weeks ago as I was getting palpitations in my chest. I had more bloods taken and another ECG. Every thing came back clear and I was told that my body is still recovering.

My husband and I have just had an argument as he wants me to go back to the Doctors because "I am not normal". We had visited my parents and whilst I was there, I began to get the dizzy, headachy feeling. On our way home, he asked why I was quiet. I explained how I felt and he said I need to go back to the Doctors. I have said that I don't think its worth it as I am still recovering. I am beginning to feel like people think I am putting on feeling this rough. I am due to go back to work in 3 days and am dreading it as my line manager isn't very compassionate! Sorry to drone on, but I feel like crap and just wanted to write how I feel 😢

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It is quite astonishing that the hospital was able to definitively confirm meningitis from blood tests, an ECG and MRI scan. Normally they would carry out a lumbar puncture to arrive at and confirm this diagnosis. I would certainly have many questions to ask and certainly would not accept this 'perfunctory' diagnosis. I would certainly book an appointment with your GP and not be palmed off with the usual generalised cliches and sweeping statements they love using to stop patients 'wasting their time'. Good luck and best wishes.

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The hospital consultant said that as my temperature was only raised slightly, that everything pointed towards viral meningitis and to do a lumber puncture would confirm but not fix my symptoms and would potentially make me feel a lot worse. I decided against it, but now wish I had it done to "prove" that I am still recovering.

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Yes, all very frustrating and sounds all to familiar. I was told much the same in that everything pointed to a viral infection 'probably meningitis'. I was then told a LP would confirm this. I decided to have it carried out as I didn't want to leave hospital still not knowing what was wrong with me. Unfortunately it was a completely botched and failed procedure carried out by a junior doctor who had never done it before. Because the sample of CSF was contaminated with red blood cells where the needle pierced blood vessels on the way in it was a wholly pointless procedure. I was extremely lucky not to have been permanently injured. I was then discharged with the neurologist contradicting the diagnosis of meningitis as there was no empirical evidence! Instead he wrote 'possibly chronic migraines' on the discharge papers. Although my LP was a disaster, for many people it is carried out properly, and having a definitive diagnosis of meningitis at least goes some way in allowing people to accept their illness and take a positive attitude towards recovering. It's difficult enough getting any help or support when you leave hospital even if they have positively confirmed meningitis. When as in my case,they call it chronic migraines because of their incompetence, trying to get any support or aftercare is a complete and utter waste of time!

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Hi,

Your symptoms are EXACTLY how mine started. The pain was excruciating so I was on codeine which really helped.

Personally it sounds as if you’re over doing it. I was told by the consultants in hospital that rest is THE most important remedy. I’ve been off work for 4 weeks and have pretty much done nothing (I have 2 very little children). My husband and family have done everything and I can’t honestly thank them enough as I personally believe this is how I’ve been able to fully recover.

You can’t go back to work still unwell, you will become even more ill. Get yourself a sick note from the Dr and tell work you’re still unable to come back.

Best of luck and I hope you get better very soon.

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Thank you for your reply. I will try to get an appointment Monday after work.

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I had near fatal VM in 2002 and I was also told I would feel better in 10-14 days in fact my GP told me I was better after 3 weeks. Doctors are told in training that VM is not serious and that it has the same recovery period as other types. I had a major battle with my GP who had to admit in the end that he had never treated anyone with VM before. I would suggest downloading the VM leaflet from the Meningitis Now website and take it to your doctor and get them to read it.

Please don’t struggle on, and do rest rest and when you feel better rest some more. I’m a volunteer Community Ambassador with Meningitis Now so please message me and I’ll happily share my email address with you. Good luck, Jonathan

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Hi,

As a mum of two small children and trying to work 3 different jobs when I became ill in February 2018 I too tried to soldier on. I too had a bad botched lumbar puncture but was lucky enough to see a private neurologist who clinically diagnosed meningitis/ encephylitis. Whilst the hospital agreed it was a virus I was told to rest for 6 weeks. I couldn't drive, walk or function as a mother let alone work. My mum had to move in to help but she too became frustraed that my symptoms varied through the day. I also tried not to look ill and constantly be in bed as my youngest daughter becane very upset seeing mummy ill. It took 6 months before I went back to work and quickly realised 4 hours a day is more than enough. Mindfulness for health is a great book of breathworks online offer the online course. It helps you learn to accept everyday as it comes and learn that you need to adjust from what used to be normal. Learning to pace yourself means on good days you don't go crazy and have weeks recovering. Nobody knows how you feel except you and when you know you are really poorly and not fully recovered it is hard for others to understand. I look well know but within a few hours I can go from well to bed ridden and on morphine. I still have extreme exhaustion if I don't pace myself, left sided numbness and nausea. I have seen many unsympathetic GP s until last week. She said allow 12 to 18 months for a full recovery. If you find a good GP or im happy to give my neurologist details work have to be sympathetic with a phased return to work. I think it is way too soon for you to be working so I hope you can get some help or phone the meningitis trust for help. Sending you best wishes and hoping you recover well x

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Take it easy and listen to your body. I was off work for 8 weeks after VM in May 2017. I went back on reduced hours on an a step up over a number of weeks but found it exhausting. Luckily I had a very understanding GP. He advised it could take up to 18 months to recover fully. Fate stepped in my husband was relocated with his job so I had to leave. Best thing that could’ve happened as I didn’t have to struggle on. Now 15 months on and feeling pretty much back to my usual self. It’s a very frustrating journey but you’ll get there xx

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I can sympathise with your frustration. Everyone is different and recovery will take a variable amount of time. I remember being in hospital asking the consultant whether I would be able to attend my study day next week. How naive I was! The advice you get varies greatly, I’ve been told I’d feel better after 6 weeks, 6 months, 2 years. You read posts on this forum and judge yourself against others recovery timelines. It’s so difficult to make plans. You’re defiantly not a fraud. Take comfort that you’re having good days, that’s brilliant. Try and remain off work until the good days outnumber the bad if able. Good luck with your recovery!

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Hello MadBolly. Sorry to read that you are still feeling so rough. Here is a link to my daughters successful treatment of cranial massage and acupuncture which helped her enormously post VM.

meningitisnow.org/support-u...

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Big hugs, you are not a fraud. Xxx

Don't feel bad about not having the lumbar i had an unsuccessful manual one followed eventually by an xray machine one and have been left with nerve pain, and my time spent in hospital was awful as i was not looked after well once bacterial was eliminated. Also they dont always manage to id the virus if its an unusual one even with one.

Recovery can be protracted for some 20 odd percent of vm sufferers take over 6months apparently. I was off 7 months after mine and have developed probable ME as well as experiencing persistent neuro effects. I am pretty sure trying to do too much too soon because it wasn't taken seriously by the hospital staff contributed or triggered it, so go extremely slowly with little mini goals. Its been 13 months and i still cant manage more than 4 or so hours of activity, and no sport type exercise at all.

If you are suffering dizziness then perhaps you could see if you can get a ent or neuro otology appointment to assess your fistibular system, there are retraining physio exercises to help apparently. There is a good detailed vm fact sheet on the MN resources download page that is worth a read.

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I went undiagnosed for 5.5 months—a long time of going from doctor to doctor, suffering with multiple symptoms, not being able to function normally and wondering what the heck was wrong with me. When I was diagnosed, the neurologist said that the risk of a lumbar puncture was not worth it to confirm the diagnosis, particularly because I was showing signs of improvement. Once I read the Meningitis Now fact sheet and saw the posts in this forum, I realized a.) the diagnosis was correct and b.) I was not alone. I hope your husband will read all these posts. But more importantly, I hope you will realize it may take a long time to recover. I have to constantly remind myself not to push—and to eliminate all that is not necessary. In fact, I had to take a leave from my job.

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Hi,

How was your return to work?

I am 3 months today since I got sick. I also feel ok sometimes then suddenly feel horribly sick. I feel really fragile and my heart beats fast over nothing. I shake now. I never ever feel rested and if I had the chance, I'm sure I would sleep for hours during the day, yet strangely I have insomnia in the night. I recently went through a period of more than 2 weeks where I did not have one moment of feeling close to normal. In fact, the thought crossed my mind questioning if this will be the end of me. I have not returned to my doctor as I don't have the energy to go through the experience of not being believed.

My friends also don't seem to believe me and think my problems are emotional. They definitely are not. I don't tell anyone how I feel anymore because of it.

If you read the posts and replies, you will see that it seems that no one on the site recovered in 7 - 10 days.

I hope you feel better soon. Keep us posted.

Amrita xo

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Hi, work was fine in the end and my line manager was more understanding than I thought she would be. Thankfully, I am part time and my manager has been letting me go early. I have been back to the Doctors who said that I will feel rubbish for a while. Basically, viral meningitis is like having been beaten up by a heavy weight boxer in a small room and that although the boxer has now left the room (the virus has left my body), I am left with all the injuries. She has taken more bloods to check that my aches and pains are not from rheumatoid arthritis or similar. I have been told to carry on taking ibuprofen 3 times a day.

You say you feel shaky and like your heart is beating rapidly, I also have started feeling like that. I also feel like not telling people how I am as no one seems to truly understand. We must stay positive. Please keep in touch and feel free to vent your feelings to me. You are only a few weeks further down the line of recovery than me, so it will be good to know what to expect. Thank you for replying to my post.

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I'd love to stay in touch, and I'm glad it is ok. Do pace yourself, if possible, as I definitely delayed healing by trying to do too much too soon.

Talk to you again.

xo

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