I was diagnosed with viral meningitis on 20 Aug 2019 but I'm very sure I've had it since 2 August 2019 as I had the same symptoms on and off.
I was discharged from hospital 1 week ago and told to rest.
I've had 1 day where I felt quite a bit better so I did a bit of cleaning. The next day my symptoms came back.
I've continued to have awful headaches, my lower back is really aching, like I've been kicked and when it's at it's worse it's hard to go to sleep, I find myself becoming very agitated, kicking out and not being able to lie still.
All the websites say symptoms only last 7 to 10 days!
I left a message at the hospital for the consultant as she told me to call if the headaches came back but I didn't hear back. I don't know what they can do anyway. I can't bear to be back in hospital with all the noise around.
So should I call the hospital again and see what they say or just continue to rest and see what happens?
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IrisRose
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I'm 17 years post near fatal VM so hopefully I can help. Doctors will tell you that you will be better in 2-3 weeks (in fact my GP told me I was better after a month even though I patently was not) but this is because they are taught in training that VM is no worse than flu. They are taught wrong. Like all forms of meningitis, VM causes trauma to your brain and so it is difficult to predict how long it will take you to get over it and some people, me included, are left with ongoing after effects however this is quite rare.
What you have already discovered is that you need to rest, then rest some more and then when you've finished resting go back for a bit more rest. If you ignore the symptoms it will just knock you back again, as you now know. That you felt able to do cleaning is a good sign (I couldn't walk or string a sentence together for 6 weeks) but you absolutely must pace yourself otherwise you will delay your recovery. I know modern life is lived at a much faster pace and people expect to be able to get over things and back to normal quickly, unfortunately VM hasn't had the same memo. y
In answer to your question, this is a bit like how long is a piece of string but take things slowly and build yourself back up again then you should be OK, but how long this will take is impossible to say I'm afraid.
I have the exact same questions , I went in in end of June 19 , I was sent home and told to rest
I went back to work ten days later and collapsed , my head aches continued and I felt dreadful , I told my doctor and was sent straight back to hospital . They gave me a blood test and then a lumber puncture which showed I still had the virus , gave me nothing but told to rest more
I am still suffering and not working , my arms ache in all my joints. My head hurts on a daily basis , some days worse than others
I went back to the doctors last week and was told to go straight back to hospital for another lumber puncture
I didn’t go , I can’t go through another lumber puncture just to be told I still have it
What’s the point , they don’t do anything about it , and the Lp makes the symptoms
Worse
Good luck Irishrose. If u go back the can only confirm u still have it by a lumber puncture
One thing I have learned by talking to people on here , is that it’s a very long slow and painful recovery
Yeah that 7-10 day B.S. is pathetic. More like 7-10 months if you're lucky and had minimal damage. Several years is more likely and definitely give yourself a lot more time/rest to heal. It's like you feel good and take 1 step fwd, then reality steps in and knocks you back 4-5 steps.
I had Viral Meningitis at the end of July, probably due to Mumps Virus. I developed Mumps on 3rd day of admission.
I agree with all the above comments.
Today is the first time I have been outside for 2 hours (6 weeks on)
and I am pleased with myself but now resting in bed.
I felt as bad during week 3 and week 4 as I felt during my weeks admission.
Like you the backpain is horrible now, but photophobia is finally improving. I cannot use a computer and struggle with some artificial light. I have slight tinitus and am still very tired.
Headache comes if have too much light /noise/ or concentrate too hard.
Trying to get comfy in bed is hard but getting better now too. I have audio books on low volume to distract my mind to get to sleep.
Pace yourself. Your brain and spinal cord are still inflammed . It's like a brain injury . Be gentle on yourself. Expect 2 steps forwards and 1 back all the time. Go at your own pace but make yourself do anything you attempt to do VERY slowly.
Most GPs who have seen VM understand. Hospital doctors do not see people in the community so just don't get it.
Use the Meninigits Now into pages to resassure yourself this is "normal" .
I believe I contracted viral meningitis around the same time as you. I’m still having lots of symptoms and I’m very tired and need lots of rest. I’ve noticed that if I do any sort of activity or errand my symptoms become worse. I do believe we will heal, but we need lots of rest.
Continue to rest! Read my other posts if you like. I was on bed rest at home for 3 more months. 7 to 10 days is a myth and most doctors have never actually experienced meningitis themselves so once the fever is gone they think you're A- OK! It's been 7 months and I still suffer fatigue and nerve damage . You will have your up and down days. CBD really helped me ALOT
I’m 6 months past hospital. Symptoms have all worsened and increased in number since hospital. If I could juice you one piece of advice it’s that no matter how badly you have cabin fever , no matter how much you want to get better, no matter how sick you are of being this way: YOU CANNOT POWER THROUGH THIS. I thought I could just walk it away, cook it away, read it away, kick it away, massage it away, think it away - I’ve tried all of them. Each of my best laid “plans” have resulted in a week in the bed. Time is the one and only friend you have and ***believe*** me when i tell you I’ve tried to befriend every other vm possible treatments - the diets and the yoga, etc etc. I had a career that was important, I’ve got 2 kids to take care of and I’m about to have to have my husband help me get up bc I’ve laid down in a position that I I cAnt get out of.
Welcome to viral meningitis. You don’t have it, it has you. The othe thing that’s going to change it or make it an better is time and a good neurologist. Mine is in his 70’s, looking down the barrel of retirement, and says I’m the 5th vm patient he’s ever had (I’m in the US). It’s just rare, they don’t know much about it, and so it is what it was. I was working on legislation at the state capital one day, the next yay I go to the hospital w a headache, now I’m home and haven’t driven in 6 months.
I wish you all the best, but most of all I wish for you patience - and lots of it. I’m so sorry you’re amongst us, but I’m glad you’ve found the group bc it really helps take the edge off.
I completely understand what you are saying. Time is the healer and this requires a huge amount of patience.
Sharing our experiences and our srategies for coping with the recurrance of symptoms here has been invaluable here.
Can I ask how your neurologist helps?
I'm the UK there is no specialist follow for VM because there are no neurological treatments of which I am aware.
The listening ear of a good General Practitioner (GP) is the best we can hope for. The GP might prescribe medication for symptom management. In my case this is just occasional codeine and laxitives and sick notes for work.
I guess this is just a difference in our health care systems ?
Do you ever have vision problems? I am 4 months post viral meningitis and still have many problems. My neurologist confirmed the viral meningitis through a lumbar puncture and found that the EBV virus was the cause of it. I dealt with it at home because my neurologist told me their was nothing he could do for me. Ive had vision problems, numbness, balance problems, and just not feeling like myself. I feel weird all the time like a a constant brain fog that wont go away. I havent really been able to drive as much as I want because of the crazy amount of floaters I get and I feel like im still moving when I get out of the car. It has made my summer pretty bad but im starting to adjust to this new me. You are definitely right in saying that you cant power through it. Hope you keep feeling better as time goes on.
I bring up my recovery with my gp every appointment (probably around 6 so far) since I have been out of the hospital.
He always gives me the impression that there isn’t much to do for me to speed up recovery, but we have worked on conditions that made recovery more difficult for me. For example, I would have bad headaches after waking up in the morning. We decided to check for sleep apnea and a week later I started sleeping with a cpap machine. It didn’t make everything better but my head aches were less severe and less frequent in the morning. Then we decided to check for allergies because I would also get headaches from pollen. I started taking medication for that and my frequency of headaches decreased.
Again, I don’t think any of these things sped up my recovery (I’m still noticeably recovering) but my recovery has been much more bearable than it would have been otherwise.
One thing that helped me was writing down thoughts, experiences, and feelings about the current state of my health every week. When I was incredibly frustrated with my recovery I would compare it to where I had been and it helped me realize that I was in fact trending upwards.
Btw, even now my head and or neck will hurt when I lean, stand, lay, move etc. in certain positions such as when I get out of the car too quickly. And my memory (which I took personal pride in prior to vm) it still not the same. But I’m so much better.
Just the other day I was on the phone and I realized that I sounded so different and more energetic than usual. It literally felt like a switch was flipped. I’m almost 100% sure it had something to do with my brain physiologically recovering in some way. I’m not a doctor, but I’m telling you- it was like night and day.
It will get better. And you are most likely trending in a positive direction. Not losing sight of that has helped me tremendously.
Thank you for that. I am 3 months post VM and wondering if this poor memory and inability to concentrate for long or multi task is the new me. I am nervous about how I will manage to work next month.
Your words make me realise it will continue to be slow and steady progress for much longer.
Thank you all for sharing your experiences. I have been left confused and wondering when I would start feeling better. My symptoms started on August 3. I wasn’t diagnosed with VM until August 9 when I went to the ER because the headache was so bad I couldn’t take it anymore. I spent 2 days in the hospital and was sent home. I was told it would take 2 weeks and then I would be back to normal. I took one week off work and then worked from home for the next month. I’m still getting headaches, body aches and extreme exhaustion. I feel like a prisoner. I am ready to get back to my normal life. I was a runner before VM. Running helps me with my mental state and being locked in the house is very depressing. Hoping for some relief soon.
Thank you for sharing your stories and advice everyone. It's sad to hear that we are all feeling the effects so long after diagnosis and especially that 'they' say it only lasts 7 to 10 days. More research and awareness is definitely needed.
I ended up back in hospital on 1 September as I was uncontrolably shaking and felt so I'll I could hardly walk or function.
Following another lumbar puncture they could see from the initial results that the viral meningitis had got worse. They kept me in isolation in case the rest of the results and blood tests showed anything else. In the end no other infection was found. I was discharged on 9 September.
The consultant was sympathetic, said that the inflammation in the lining of my brain was causing the pain in my head and ears and that I would feel exhausted for up to a couple of months.
But for the past couple of days I've had bouts of vomiting and diarrhoea. I haven't had that since the symptoms first started so I feel like I'm back at square one.
The symptoms started just over 6 weeks ago now. I'm so fed up of having head and ear pain, of feeling sick, being exhausted, feeling agitated and especially sad that I'm not able to spend quality time with my toddler. I've missed so much time with her. We couldn't go on our family holiday and I can't bear to be outside in the sun (photophobia). It feels like I've lost so much time.
I can't even contemplate going back to work. I also teach yoga and mindfulness so I'm normally a positive, motivated person but my old enemy depression is rearing its ugly head.
I have an appointment with a private neurologist tomorrow but I don't think I'll be able to get there. It's half an hour drive away and even though my husband will be driving I feel too ill when I'm in a car. I think it's the motion.
Breathing techniques normally help and mindfulness practice but it's so hard to concentrate with this pain.
I know I'm not dying. There are millions of people in a much worse situation. But how is there no medication or something else to make this go away?
I agree with all you Nindeman say and symptoms are almost identical.
For me the garden and yoga are also my places to regenerate so I have to continue looking back at how far I have come from 23 July and not focus on where I want to be.
I am adjusting to a new normality and if it improves that's great but I just need to accept how I am.
Next Sunday I will try to walk 5 miles of the Meningitis Now Five valleys sponsored walk as their website helped me so much.
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