4 weeks in so far

[Caroline-T]

Hi All

4 weeks ago now i experienced the headache from hell (i rarely experience headaches) this was a blinding shock type pain that ran from my right temple behind my right eye towards the bridge of my nose it was such a sharp and sudden pain it would make me clutch my forehead and screw up my eyes i rang 999 and i'm still in hospital during the past 4 weeks i have had a lumber punch i.v antibiotics i.v paracetamol oramorph ct scans mri scans an x.ray to the chest and i have lost count of how much blood they have taken within a few days of my entry into hospital they diagnosed me as having Bacterial Meningitis scared is not a strong enough word to describe how i felt on Monday last an HCA came to my bedside to check my obs as i moved to present my arm i experienced a very sharp stabbing pain in the left side of my chest the pain was sharp and sudden much like a stitch type pain the HCA called the ward nurse who thought it best that a Doctor saw me he suspected a blood clot and an x.ray was immediately requested which didn't show a blood clot but did show up a little fluid in the bottom of my left lung this was not enough info for the Doctor to make any decision and so he requested a ct scan this showed up some abnormalities in my left lung some swollen lymph nodes i have googled this and it has come up with Sarcoidosis a condition that can apparently appear after an infection like Meningitis i was having terrible trouble breathing and this has now eased a little the Doctor wants an ultrasound scan done on my lung tomorrow (Monday) i just wanted to ask has anybody else experienced lymph node swellings in the lungs? and may i add prior to the original headache that put me in hospital 4 weeks ago i was a total coffee holic i have absolutely no interest in coffee now and have gone over to drinking tea which is very strange for me as i have never liked tea equally my taste buds are all over the place for example eating a mars bar is like eating chocolate dipped in curry powder it's awful on the up side i am feeling better stronger and looking forward to going home very soon i hope

[beech]

Have you actually asked the doctor if it might be sarcoidosis? Of course, your symptoms could well be indicative of numerous conditions, such as a chest infection, so s/he will be looking at all possibilities.

A positive is that you are best placed to be getting thorough investigations and immediate treatment for whatever is happening, but I’m sure you are very worried along with feeling pretty awful following the BM.

The strong medications you’ll have been given along with the original infection knock you sideways for a long time and upset what your previously normal body flora and fauna were - oral (and systemic) thrush can be a result of the industrial strength antibiotics you’ll have had which might be upsetting your tongue and mouth (and stomach) and alter tastes and give a lot of pain - you can be given a mouth medicine like Nystatin to help with that - again, ask a nurse or doctor about what they can do to ease that discomfort. It starts to work pretty quickly, but the fungal overgrowth can take a long time to be put right - probiotics can help. I’m guessing you’re doing a bit of research of your own, so look into that.

Good luck with your recovery - you’ve been very ill, so it will take a while to heal. 🤕

[Caroline-T in reply to beech]

Hi Beech

Thank you for your reply i was given a bottle of Nystatin 2 weeks ago and have finished it the really good news is that they intend to let me go home today but not before doing a few skin tests etc... so i will ask for another bottle to take with me i have researched the subject of Sarcoidosis but when the Doc came to see me earlier i could not for the life of me remember the word (never had a memory prob before so i will be working on that one) i will mention Sarcoidosis when she returns to do the various tests prior to release i will be booked in for another endoscopy and another ct scan of the lungs and abdomen as an out patient which does mean i can walk out of the hospital on the same day my journey has not been a pleasant one with the thought in the back of my pained mind that my lights were going to go out at any time a very frightening time indeed and i feel absolute empathy for anybody going through similar I hope we all get better very soon

[beech in reply to Caroline-T]

My daughter at 16 had BM some time ago, so my knowledge is that of a mother rather than sufferer. But she did have problems for a good year afterwards with systemic fungal infections, which with conventional medicine plus complementary treatments did stop. But she was prone to colds turning to bad chest infections that laid her low for a few years. Again, those did cease in time. She avoided the worst of sepsis issues, but had an acquired dyslexia and short-term memory problems, the worst for about 5 years which have largely receded and don’t affect her as an adult. So whilst that isn’t a set time-line, allow yourself time to recover, and do what you can to protect your health and have as good a lifestyle as you can.

I felt the fear of recurrence and general worry about her health far more than she did, as ‘fortunately’ she was largely unaware the events of becoming unwell, other than the irritation at her limitations afterwards, whereas I witnessed it all. At a psych evaluation she had afterwards she said she didn’t feel the need for counselling or that she was suffering from trauma, but she thought I probably did and was!

It is natural to have fear after coming so close to a possibly dreadful outcome - please do ask for help if it is holding you back from living your normal life. You will probably feel very tired and have lost your energy and ‘sparkle’ for some time - eat well, sleep when you need to, avoid stress if possible, and just take as good care of yourself as you can. You will get there, but how long that will take is an individual thing.

I hope the scans and tests rule out any big problems, and that you can keep away from the hospital - but do use your GP if you’re not well, it is better to overreact than soldier on if you could do with medical help.

Best wishes 🙂

[Caroline-T in reply to beech]

Thank you for your reassuring words and yes i bet you must have gone through it watching your Daughter experience such a nasty controlling disease when i was diagnosed my first thoughts were to let my Daughter in law know as she is pregnant due in September and already has a Daughter aged 16 months i suggested she rang 111 and speak to them for advice they suggested she contacted her doctors to obtain some antibiotics for her and my granddaughter to take just in case...so they were prepped up in the event of and luckily escaped the whole incident i am feeling tired and a little distracted when completing tasks i will start something and before finishing i will start something else i am aware of a little short term memory loss and a slight imbalance when walking but i am determined to get back to fitness i am a community carer and want to get back to doing what i enjoy doing but yes i will take it one step at a time and at this present moment enjoy the sun my only sadness is the taste of chocolate i bit into a mars bar the other day and you may have well of dipped it in curry powder i hope that side effect doesn't last too long

[beech]

We (the family, her boyfriend and close friends she had been staying with in the few days leading up to her becoming ill) had to take the prophylactic antibiotics, but very luckily she was the only one to be ill. I’m sure you can imagine how 16 year olds socialise and are very close to each other physically, but fortunately she was the only case in our community. As to why, and how, who knows?

I’m glad your DIL and granddaughter were ok -it is definitely an odd disease, but most definitely better to be safe than sorry.

I hope you regain your strength and we’ll-being before too long - make the most of finally having some better weather to be able to go out walking and enjoying the outdoors after the hospital.

And most importantly, that you get your sense of taste back to be able to indulge in chocolate - you deserve it! 🤗