Feels like I was kicked out of hosp

[Anbymoul]

Hi all, I'm new here.

I was taken to hospital on this Saturday just past with meningitis and via lumbar puncture was also found to have listeria bacteria as well. Two days after (Monday) I started getting a low pressure headache because of leaking SCF and on Tuesday the ward round doctors started discussing a blood patch operation.

They recommended I have 24 hours of caffeine and ibruprofen to see if it made an improvement. I felt a very small improvement on the Wednesday (yesterday) but was still photo and phonophobic with a vicious headache when vertical and constant back/neck pain and nausea.

That afternoon without any warning the nurse in charge came into my side room and said I had to move as they needed the room, she offered me a bed on a ward and an eye mask for my photophobia. She was extremely brisk and rude and started to pull the blinds up in my room (even though it had been dark since I arrived due to my symptoms) and seemed to be trying to calling my bluff on the photophobia.

I said going on the ward would exacerbate my symptoms so that my only option was to go home.

I wasn't given any information about my symptoms moving forward or what to expect, I wasn't even told at what time I had last been given painkillers so that I could continue them at home- I felt like I was being kicked out despite being in extreme pain.

I feel very poorly treated and couldn't sleep at all last night (my first night home) because of the way I've been treated. They refused to give me any stronger painkillers to take home so I have had to try and manage my pain on over the counter medicines. I feel very alone, stressed and feel as if I have done something very wrong. This is not how I should be made to feel when recovering from this horrible illness.

Is there any advice you can offer me on my first few days moving forward and what to expect? I feel petrified reading some of the after effects I could experience as none of this was even discussed with me whilst in hospital.

Thank you in advance

Abby x

[misswinky34]

omg

absolutely shambolic

I'm so sorry you've been treated like that!

how terrified you must be 😨

how are you physically feeling?? Dreadful i Imagine. can you call 111 or GP for some help?

at the very least you will.need follow up surely?

where abouts are you? ❤❤

[Anbymoul in reply to misswinky34]

Thank you for your reply misswinky. Physically I feel drained, have a bad headache that kicks in when vertical, nausea, very stiff spine and sore neck and still photophobic.

They have given me the option of going back for the blood patch op if the leaking scf continues but no other follow up if I choose not to have the op.

Feeling very alone but thankful to have found you lovely people and the men now site.

I will call gp if I need to but it was the lack of info given for moving forward and what to expect that has thrown me. I am in West Sussex xx

[StrawberryCream]

Abby I am so very sorry to hear that you have listeria Meningitis and have had an awful hospital experience. Bacterial meningitis needs to be treated with antibiotics but I think you are saying that you were discharged with no medication? If so you really do need to speak to your GP surgery or if you are in the UK telephone 111 for advice. Also if you are in the uk I suggest that you ring the Meningitis Now helpline Freephone 0808 80 10 388 to talk through what has happened to you, and for information, support and advice. You need to be receiving the right treatment to resolve the Meningitis infection and to prevent it getting worse. Once the listeria infection has resolved you will still be recovering and that does usually happen back at home. The headaches, photophobia, lethargy etc will often take weeks and months to resolve and sometimes some after effect can be ongoing for a year or more. You will initially need plenty of rest to enable your body to recover. Meningitis is much more serious than colds or flu which usually last 7-10 days. Unfortunately lots of hospital doctors and GP's do not have a very good understanding of meningitis which seems to be what you have encountered.

[Anbymoul in reply to StrawberryCream]

Hi Strawberry cream,

Thank you for your reply, so nice to have some support.

I was given antibiotics and antiviral for 3 days when in hosp but they didn't give me anything to take home so presume I have finished the courses?-no information given so just have to presume.

I found you lovely lot and also meningitis now website which has been fantastic. I emailed the nurses on the site and they instantly contacted me with a fact sheet which has helped.

The hospital have offered a blood patch for which I have to decide by tomorrow if I want it to stop the leaking fluid; I still have a vicious headache when I stand so think it might be a good idea but I am less than keen to go back to them seeing as I was treated so badly when I left!

Thanks for all your support, has been invaluable at a time when I feel very alone and scared xx

Ps I am in West Sussex so will call gp/111 if I feel

I'm getting worse x

[Bonkitty]

Abby these symptoms may last a while and the best thing to do is completely rest to let the inflammation settle. Check out the Meningitis Now website as it gives good advice and describes the symptoms. I had lots of pain killers which didn't help relieve the pain and I avoided over counter painkillers as I am sure I would have taken too many.

You may need to be very patient as I said it may take a while.

Rest, rest, rest, try not to stimulate the brain : avoid light, noise etc .

I tried to get up and at my normal activities and made myself much worse so rest now and improve sooner. Xx

[Anbymoul in reply to Bonkitty]

Thank you Bonkitty, I'm a 100% or nothing kind of person so I'm finding it hard, but will rest like you said and let myself heal.

Hope you are feeling better now x

[jos2017]

Hi, I am now on my 22nd day- Yes I am counting! My eyes are now ok through the day but I still prefer lights off at night. REST! I am learning that you just have to as I am beginning to have a couple of hours a day where the head and neck pain have eased. It's more frustrating when BOOM! the pain hits with gusto and you wonder what the heck did I do to trigger that. I am able to sit up on he lazy boy chair for longer periods of the day. I have developed the pounding in my ears especially at night when all is quiet. I listen to meditating relaxation from Joesph Clough (downloadable) and concentrate on my breathing. It's worked for a couple of nights. My Doctor has been good to talk to and I can ring the practice anytime and speak to the nurse on duty. I do agree the aftercare is lacking and the information is sparse. My doctor has said that although they can diagnose viral meningitis they are still a long way off understanding the recovery. It's confusing to be told it could take weeks or months to come right. At present I am trying to remain positive and focussed on the parts of the day that I feel ok. (even if it's the painkillers working) I take paracetamol and codeine every four to six hours. Yesterday I didn't think they worked at all and just lay on the couch for the whole day. This morning- well I am able to concentrate on writing this- so hope for a good day.

I do hope you can find positive moments even if it's for a very short period of time.

with love

Jos

[Anbymoul in reply to jos2017]

Thanks for your reply Jos, is so nice to hear from others in this situation.

I am sorry you still have bad spells and hope they ease off soon but your words of wisdom have helped me so thank you for taking the time to write.

I will keep resting and hope to feel a bit more like me again soon.

Abby x

[jos2017]

I am keeping a diary and add to it each time I record my pain medication (just in case I forget what I have taken and when i have taken it) I include the amount of water I drink, my pain scale, my temp in the morning and at night and have been adding my thoughts (grumpy ones, and my actions like moving, visitors etc) just to see if there is a pattern happening. I am a teaching Principal so it must be the NEED to write reports. LOL. I am from New Zealand and live in an isolated community of 100 people. The doctor is over an hour and a half away and as yet I have not been able to drive anywhere let alone walk out the door. So I am fortunate that I can ring him if I need to.

My thoughts are with you and hope to hear you are getting the support and care that you need.

with love

Jos

[Lorna26]

Hello, so sorry to hear about this mess. Absolutely awful. The same thing happened with me, I was kicked out of St George's hospital in London whilst still absolutely ill and wearing my own sunglasses to fend off the light! I went home as they wanted to and was sick and having terrible headaches before I called my family in Scotland who drove to London to take care of me. They took one look at me and took me right back to (another) hospital in London from where I proceeded to be sent around a few but was 4 more wks in recovery there, another 4 weeks on anti biotic and steroids at home with nurses coming in twice a day to administer and keep an eye on me. Then another 2 months regaining strength, learning to walk again etc.... I've continued to have many outpatients appointments to this day as they monitor by body getting a back to normal -- it's been 5 years.

Lesson? Please do not be put off. Meningitis is a terrible illness that takes a lot of time to recover from. I think you should be back in hospital or at the VERY least have people checking on you at home. I'm worried -- are you living alone? It's easy to underestimate how poorly you are if your alone. If in any doubt, please seek extra medical help and I trust that the next people you speak to will not be so remiss.

Good luck with a good recovery. So happy to hear you are resting up big style xxxx

[Anbymoul in reply to Lorna26]

Hi Lorna,

Thank you so much for taking the time to write. I am so sorry to hear of your meningitis journey and glad that you are back up and running again; what a terrible ordeal.

I am being looked after at home by my mum and my husband has taken the children away so I can rest fully. I am getting constant headaches when I try to sit up or stand and they (the hospital) have offered me a blood patch op to seal the hole caused by the lumbar puncture which is leaking spinal cord fluid, but I am not sure as to whether I am experiencing 'normal' post meningitis symptoms or a low pressure headache. The meningitis now site has a nurse phone number so I will call and speak to them tomorrow for advice.

It's so lovely to have the support from you and the others, especially at a point where I feel so deserted by the hospital.

Here's to health!

Abby x

[Lorna26]

Your health is your wealth! I had never heard that saying until my illness. Boy is it true! How are you feeling now? Hope you are getting better, day by day... I literally ticked them off and mini milestones felt like big deals to me. Hope you are chalking some up!

How are the headaches? I'm not familiar with that patch op you mention, have had a few lumbar punctures and know they are not pleasant and a side effect of them could be headaches whilst it healed.

Thinking of you, best, Lorna

[Anbymoul in reply to Lorna26]

Hi Lorna,

I had the patch op on Monday and it has worked wonders on my low pressure headache. I think it's only a few cases where the hole caused by the lp doesn't seal up fast enough so the leaking spinal cord fluid causes a low pressure headache when you're vertical. It meant I couldn't ait or stand for longer than a few minutes without the headache building like a pressure cooker. Anyway, that's all better now and I just have extreme tiredness and a sore spine.

I managed a walk to the park yesterday (not far- 5 mins or so) and back so feel good from that. No idea when I'll be back to normal as I don't seem to feel better each day.

I'm now stressed because I need help with the children and my husband goes back to work next week and my mum is being less than helpful - if she doesn't work she doesn't earn and money is extremely tight for her so I can understand, but she's not offering to help and it's falling to my inlaws who have now had the kids for two weeks and I feel so terrible about it. They live a couple hours away and I just want to get home and have some semblance of normality to our routine but I can't do it all myself. I'm finding it very frustrating not being 100%.

Hope your milestones are increasing as time goes by! Well done with your recovery, sounds as if it's all going in the right direction xx