hi all, my name is Bev I am 57 yrs old. I was diagnosed with meningitis on Friday of this week 8/9/23, I still don’t even know what variation of meningitis I have, but I that scared the stress will get me first!
Firstly is it normal to get from waist to knee of really bad aching/painful legs?
I keep getting red floating things in my eyes which comes and goes?
I have read a lot of other peoples stories on here and it all sounds so frightening, I honestly thought when you have fought the illness that that would be that, appears not!
I can’t get straight answers from the nursing staff about anything, hence why I have joined this forum, I suppose I just need a bit of reassurance!
So I would so grateful if anyone has any.
Keep well,
Bev
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Welcome to the club! ( JK). I had meningitis caused by the erhlichiosis bacterium in 2019 at age 64. I had neither of your notated symptoms, but if you are able to read and write after having such a recent diagnosis, you are doing pretty well, in my opinion. Once you get the diagnosis on what type you have, you will gain more insight on what to expect. You will hear this a lot, but my best advice is to rest and take time to let yourself heal. Wishing you a full recovery and please post on new developments.
Hi, I contracted Bacterial Meningitis around Christmas 2022 along with , Sepsis, Strep A, plus kidney failure.Lost the use of my left arm, still have dead spots over the rest of the body but have to plod on.
Still on antibiotics and and weekly dressings for self amputated toes.
Mentally it's a struggle but getting there through talking it out with family and NHS staff
Time is the healer with this and acceptance of the condition plus the confidence and belief that you will get through it.
Hi, thank you so much for your reply. I was discharged from hospital yesterday, so I definitely have viral meningitis but they could not find the strain! Do you happen to know if this is usual?
I am finding it very hard to sleep, I seem to have constant stomach ache and a headache which is awful, still got some photophobia, and I am very irritable, the tiredness is unreal but I can’t sleep. I know my problems pale into insignificance when you read some peoples stories, I suppose I am just scared. I know I will get through it, I just didn’t realise it can leave you with all of the above! My consultant told me I should feel completely normal in about four weeks!!!!
So happy you are home! I was first diagnosed with aseptic meningitis, which is a catchall diagnosis when a definitive cause hasn't been determined. Yes, there are many viruses that can cause meningitis. Because the test results for erhlichiosis takes two weeks, aseptic meningitis was the best guess for me. Fortunately I was treated with antibiotics during that time as a precaution. I wanted to sleep all the time, had a severe headache with waves of nausea, and I just wanted to be left alone. The big thing for me was how difficult it was to just "think." But don't become disheartened if it takes longer than four weeks to return to "normal." It is vitally important that you get a lot of rest to let your body heal.
Hi, I got referred to a dietician re my stomach problems having seen my GP who prescribed peppermint capsules and mebeverine for the cholic type pain which wasn't a great success. The dietician explained that the loads of antibiotics given to me has killed off the natural gut bacteria and advised pre and pro biotics along with flaxseed.
Best wishes for your continued improvement, Brian. You have had to endure a tremendous amount. I also had sepsis with kidney and liver failure and was close to death, but thankfully no lingering effects like you have had. My heart goes out to you. But your upbeat attitude will help sustain you through this, so cheers to you.
Many thanks for the Best Wishes, I have tremendous family support and loads to look forward to. Like yourself life was on hold for a while but here we are talking about it so good luck for the future.
Good morning Bev. I live in NY in the US. I know it can be scary but you need to take a deep breath and try to relax. You are someplace that you are safe and they are looking after you. I know that when I was hospitalized it was a long, scary few days. They did a spinal tap and confirmed I had meningitis and then whisked me off to an isolation room. They were growing cultures and waiting for results. Basically I have recurrent viral meningitis. I have had 7 reoccurrences and still no known cause.
You will know what to do after they figure out what is going on. Keep us posted. I think you will find that the only absolute rule with any type of meningitis is that no one has exactly the same experience. However, we can tell you about similar experiences and how we found relief. The most important thing right now is to just relax and let your body tell you what to do. After tests/cultures the doctors should be able to give you a more definitive diagnosis than just meningitis.
hi, I am so sorry it has taken me so long to reply! I feel worse now than I did when first diagnosed, the headaches could literally make me cry they are so painful, my doctor has been good but openly admits he has little experience in treating the aftermath if meningitis, he has just given me gabapentin to take but I am scared to take it as I take morphine for a back problem and he said himself they aren’t a great combination as they both suppress your breathing! My neck is hurting again, but you said you had recurrent meningitis, how long was it between bouts if you don’t mind me asking? And how are you doing now? Thanks, Bev
I'm sorry your recovery is not going well. I average 2-3 years between bouts. Last time was February 2023. Due to personal issues I was not able to put my care first and didn't go to hospital. I would have liked to only because they would have been able to test spinal fluid for more possible culprits of cause for my VM. But my mother in law was already in the hospital and we were making difficult decisions on her care. I could not leave my husband, an only child, alone to deal with that.
The headaches can be horrible! I had migraines before VM. They run on both sides of my family back at least to my grandparents generation. Probably further! I also had a doctor who doesn't understand after effects and recovery from VM. However, he was willing to work with me. He listened and we managed the symptoms I was experiencing. I was never on daily migraine meds but since VM it is vital. Migraines are much more frequent and with higher intensity since VM. I also have ongoing vertigo issues since VM.
I'm sure you don't want to be told this, but you really need to listen to your body. Try to find what helps you and rest, rest, rest. If you rush things it will just take longer to recover. Don't think you will have recurrent meningitis. Most don't! And Even with 3 spinal taps I have never found my cause. Don't worry about cause either. Just concentrate on your recovery. It takes time, despite what most medical professionals say.
Remember to be aware of the holidays as headache triggers. Christmas lights, foods/smells and sometimes just over stimulation in large groups. Prioritize your health! Wishing you the best.
I should also add that in addition to migraines I also have constant neck pain. It has never gone away. I find ice helps me and use an ice bag very frequently.
Hi there,i found out i had meningoencephalitis not „only“ viral meningitis in march 2023. i had no pain or anything like that but a severe head pressure, felt sick and had panic attacs. I learned how to cope with my anxiety,was also at a psychologist as i was not sure from where these feelings come from.now i know. It takes time for your nerves to feel okay again i guess,every stress makes me feel anxious again and i need to ly down in a dark room ans relay.doctors told me it takes 3 weeks but it is now nearly half a year and i cannot meet many people at a time as it is still overwhelming.i have two small children and it is sometimes very exhausting for me.before that i was working a lot,was very busy and everyone asked me how i manage all this at a time! Now things are different,i can probaby to 30%of what i did before..but i am glad it did not hit me harder….i still think it is a very severe illness and doctors do not really know with what problems we are all coping as we are medically healthy again…! Take good care and avoid any sort of stress as good as you can!
Yes to all you are experiencing. Unfortunately, the medical professionals still look at menigititis as a simple virus. I had menigititis in 2015 I started experiencing symptoms at work of intense pain in my lower back to my legs, pressure in the front of my head, light sensitivity, sound sensitivity. When I got home I was in so much pain, I couldn't walk, a fever of 104. I had to been taken to the hospital, I was in a dark room and private room, I was there for 30 days. Have a family member or friend be your advocate at the hospital. Make sure that you tell them what you are experiencing. You will get thru this just listen to your body and rest and have patience. Sending healing thoughts.
Hi, I am sorry to winge on here but I don’t know who else to talk to, so I have now been out of hospital for two weeks and I am still in bed, I just have no energy, am shattered but can’t sleep, and if I do get half hour I have terrible nightmares, the doctor gave me Naproxen which has helped a little with the terrible headache, I just want to know if all this is normal, I know by reading other peoples stories that I am lucky, but I just feel so ill , is it normal to still be in bed , am I better just trying to push through, any advice would help. Thank you and take care all, Bev
Bev, I went from 3 weeks in the hospital to 3 weeks in rehab before going home. Most of my rehab time was spent in bed except for therapy sessions, which gradually increased from 1/2 hour a day to 1 hour in the morning and 1 hour in the afternoon. And in my last week I started to practice walking on my own. When I got home, most of my time was spent in bed because I was exhausted all the time and, yes, I often just did not feel well and had horrific headaches. My doctor did give me a prescription for the headaches. I don't remember what it was, but it helped a lot. We were living in a motor home at the time on the location we were building our home, and we were at the point of moving into our new house, My husband had to get all of our things out of storage by himself because I was in no condition to help. We had moved to a different state for our retirement, so we didn't know anybody to ask for help. I not only was not well, I felt so bad for not being able to help him. Within a couple of weeks of returning home, my husband would walk me up to the new house (150 ft away) so I could start unpacking boxes. I could only work for a half an hour and then I was completely exhausted. The next day I might have been too weak to do anything. Very gradually I increased my time in the new house, but it was a month before we were truly living in the house. I know this has been a long story, but it took many months to return to a somewhat normal life, standing while showering, walking up and downstairs without holding onto something, taking walks without feeling dizzy, and falling when I turned too quickly. But it will get better, so try to be patient, rest, and slowly pace yourself. I had no trouble sleeping (quite the opposite!), so you may want to ask your doctor about helping you with that.
Hi Tracy, thank you so much for your reply, and I really am sorry for what you are going through, I can’t believe you are still suffering so much after 10 months, I would like to keep in touch with you if I may, it’s good to talk to someone who has been and is going through it, so if that’s ok with you? Do you live in the UK.
Hi Tracy, thanks for your reply, I live in Shrewsbury which is in Shropshire, so we both live in nice parts of the country!
So at the moment I get headaches, the likes of which I have never experienced before, the doctor gave me Naproxen which does help a bit, I seem to have a weakness in the right side of my head, as in my right eyelid doesn’t open as much as the left, my ears will suddenly go like I have water in them or a sharp pain in them, the tiredness is unreal, but I can’t sleep, lying awake for hours through the night, and if I do sleep I have awful nightmares, get pains in my chest where I can’t get my second breath , and still get the odd bout if photophobia, .
My husband has been fantastic and he listens to me , but it is very hard to try and tell someone how you feel when they have never experienced it, and it is a horrible thought to think that some of these symptoms may last a long time. How about you? What do you feel?
Hi, remember if you live in the UK, and have been affected by meningitis, our nurse-led helpline, at Meningitis Now, can provide information and support.
We can be reached by phone: 0808 80 10 388 or email: helpline@meningitisnow.org (mon-thu 9am - 4pm, fri 9am - 1pm)
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