Hi I'm coming up to 1 year post VM. It has been a very difficult year and I am still nowhere near recovered. I have bouts of severe headaches which can come on very quickly, often exacerbated by trying to concentrate or focus on something. it usually starts with neck stiffness then becomes a severe pressure like pain in my head. I'm also suffering with bad fatigue which stops me from being able to look after my toddler full time. I also frequently struggle with noise sensitivity. I haven't been able to return to work as yet. I do see some improvement over the last year but it's quite minor and very slow. I don't think it helps that I did push myself through these after effects initially to try and look after my daughter. I'm waiting to see a neurologist and I have also been diagnosed with chronic fatigue syndrome post VM.
I feel like I'm beginning to lose hope that things will ever really improve. does anyone else have any similar experiences?
Thank you
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Peacock1
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I'm sorry to hear about your slow recovery, that must be hard with a toddler to looking after. I'm only 10 weeks post VM so I can't relate to the time period as it's been much longer for you, but I too have headaches if I try to focus on something and extreme fatigue which results in me not being able to do much at all. One good day for every 3 bad days and the bad days seem to stretch out for weeks at a time.
Not sure if this is helpful, but with the fatigue side of things, I've been reading Dr Sarah Myhills new book on this area - she is a leading expert in the UK and there may be things you can take from her work regarding supplements, diet, tests. here is her website for you to look at drmyhill.co.uk which has some useful info.
I've also started seeing a Functional Nutritionist local to me who is running some lab tests which GPs usually won't do - particularly to look at Adrenal Stress glands and Thyroid - and interestingly we've discovered my thyroid is very under-active which my GP admits may hinder my recovery time - so he has started me on hormone meds to balance things up. It is expensive but for me I know my body is not right and if there are ways I can help it along then I'm keen to try, finances permitting.
I'm sorry you are having a difficult and slow recovery. Your symptoms are the same challenges I experienced during my recovery. However, i was able to take my time, as frustratingly slow as it was, because my children are grown. It did take all of a year before I felt pretty normal.
I hope you are improving with each day. Try not to push yourself too much, if possible. I hope you feel yourself again soon.
I'm 5 yrs post vm..... Recovery time was long for me too, still not 100% but we are all different...I tried to run before I could walk and it just set me back everytime..... I also have chronic fatigue......The info jcrome gave you sounds good I will check it out myself..... Good food, lots if rest is a sure winner..... You have had a brain injury and it takes time to heal..
I feel a bit like the grand-dad here but I am 12 years post near fatal VM and it took my a long time to come to terms with what it left me with. Rest is definitely the key here and listening to your body, if it says you're tired then you're tired. I took five years out of strenuous physical activity having been a triathlete before the VM and have progressively got more active over the period since. In 2012 I completed my first half ironman triathlon (1.2 mile swim, 56 mile bike ride followed by a 13.1 mile run) so there is a light at the end of the tunnel but it just, I'm afraid, takes patience. As Siobahn has said you have a brain injury and you need to respect what it has done to you. Good luck!
Things will get better, three years after a very serious attack of VM and finally feeling my self. I have posted some of my feelings at bumpyhighway.blogspot.co.uk...
Your circumstances sound really similar to mine. I am also coming up to one year post 2 weeks in hospital with VM, have three children (2, 5, and 7) and have been unable to return to work.
I am now seeing a neurologist who has diagnosed me as suffering chronic migraine triggered by the meningitis. I suffer daily headaches which are often really severe and leave me unable to do much at all. I also suffer from fatigue, concentration problems. poor memory...
The after effects of VM have turned my life on its head. I have gone from being a busy mum of three with a part time job to some one who is about to lose their job through ill health and struggles to manage household tasks without help. Any doctor who tells their patients they will recover from VM within 2-4 weeks needs to have a good look at these posts and at the Meningitis Now site.
There are some really encouraging stories from people further along the road to recovery though! I suppose we just have to try and be kind to ourselves and have patience.
Hi, post VM two years, left with CFS. Ask your doctor to refer you too the CFS clinic, it's a great place and the help is fantastic. You can also check it out on line, or give them a call. keep your chin up.xx
Thank you for the advice! I'm waiting to see the cfs clinic so I'm hoping that may help! I feel quite guilty about not being able to look after my daughter myself so just have to hope for a better future and be patient I guess!
Hi, my headaches have much improved thanks, seems to be the fatigue I'm mainly battling now! A step forward in the right direction though! How are you getting on? Any results from your diet etc?
Hi! Glad the headaches are improved - same for me really, the headaches only come on now if I look at a screen concentrating all day.
Unfortunately fatigue is still a big one - I have made subtle progress over the last 2 months but I am dragging myself around - my arms and legs are like a dead weight. I've gone back to work 3 days a week but it's a real struggle and means I'm useless the rest of the time.. hopefully I'm making progress but it's very slow! Gotta try to be thankful and positive though
Hi,
There is hope, I'm dealing with three bouts on VM, I'm eight weeks post VM, I have a condition called Mollaret's meningitis, Its not easy but you will get there, this time I was up and back to work within 5 weeks. I still have bad days but I remember I'm still here and still kicking so to speak. I don't know when ill get sick again, so I try not to worry about if and when. I try to live life as well as I can. VM is such an awful condition, very miss understood, but with the meningitis now and this forum, people are becoming more aware.
I am having exactly the same difficulties and regardless of what I try it always results in a painful relapse. I am currently having a relapse, very painful headache and neck. My neck dislocated due to the pressure. I manage to get up and about for a week or so and then crash down again. I am 10 months post VM and although I have kept positive, I too am losing hope. Very bored of being housebound which is getting me down. I too am still off work and getting very worried about that.
How are you doing now? Have you had any improvement?
Hi, I'm sorry to hear that you are still struggling too. My neck stiffness and severe headaches have improved over the last couple of months, I'm finding activities that I used to struggle with before no longer bring on the headache although I still struggle with concentrating for prolonged periods. The fatigue is still quite severe buts does vary from day to day. Similar to you if I do too much it brings on a bad relapse where my symptoms become even worse. it's very difficult learning to readjust your life and not being able to do the simple things you took for granted before the meningitis. I'm hopeful that things will improve but I think that it will unfortunately be a very slow process. I'm still not back at work either. Is fatigue a problem for you? I'm trying a treatment called the Perrin technique for my fatigue, it made me worse the first couple of months (which is to be expected apparently) however I'm beginning to feel like I'm picking up a bit although I'm only 10 weeks into it. I'll report back on the forum if it works!
Try and remain positive, I know it's very hard, I'm sure we will get there eventually!
Bonkitty I just had my first relapse. I thought I was getting over VM finally. I had a very painful LP way to late performed my an inexperienced doc and had added back issues but was determined to get back on my feet. I started feeling better for about a week and got out in public for about two days then boom. I relapsed hard and the neck pain was terrible! The fatigue, the aches, the pain running from my neck into my back. And these doctors all act like I'm crazy. All of them say "you should be better after ten days." Then I come here and am comforted to see it is not just me! I purchased a TENS unit from the drug store (has the electrodes that massage spots likenaround your neck and back.) I will put that on my worst spots and lay on a heating pad and it is like pure heaven. A back brace has also helped me a lot but I could be having more issues due to the guy that stuck me 4 times before getting my back numb for the puncture. Good luck to you, I just saw you post and it touched me bc I know how you feel!
hello, i suffered from a severe case of viral meningitis last february and i can definitely relate to you. i was left unable to walk, stand, complete full sentances and really do anything for myself and at the age of only 16 i can safely say it has been a massive struggle, not only physically but mentally and emotionally as well. i still have physio twice a week and i also see a councillor as i suffer from very distressing nightmares and can hardly sleep at night, i am only now begining to see light at the end of the tunnel and begining to feel that little bit more normal. i still have several on going problems, i can no longer smell, taste, hear out of one my ears, i struggle with major fatigue and severe back pain almost all day everyday but i am now begining to feel more positive about things. many times i felt like all i wanted to do was give up as i believed things would never get better and if i've learned anything its that things do get better and will continue to get better you just have to take things day by day, each day is another step forward and you musnt give up x
Hello! I'm so sorry to hear that your having a slow recovery. I have been diagnosed with mollaret's meningitis which is pretty much a reoccurring meningitis. Last year my recovery was quite quick and after a month and a half, despite the headaches, I was back in school. This year however is very slow. I have been seven weeks in bed and this is the first week that I can read a little. The goal for me is to weaken the virus so it won't be as strong the next time which is breaking my heart as I have my final year exams this June. I have quite similar after effects to you, only light sensitivity instead of noise sensitivity. Last year my headaches stayed for nine months or so... I think the best thing to do is to lie down and rest when your body tells you. This year I'm suffering from chronic fatigue which is disheartening as I can't walk from my room to the kitchen without collapsing... But I know I am definitely improving and will eventually be back to myself again! I suppose the best thing to know is that your not the only one so there's plenty of support... The meningitis helpline are very useful and these forums are really helpful too. Finally, don't lose heart! The one thing meningitis has taught me is to make the most of the time I feel well. Though the recovery may be long I seem to come out as a super optimistic and confident person because who knows when I'll get it again! I hope this helped and don't lose hope! Get better soon! X
I am exactly 1year on from VM and I feel exactly the same as you. I saw a neurologist yesterday. I am to have further MRI scans. The neurologist is putting me on medication for severe migraine, I'm not sure what yet. He also talked about Botox to ease the headaches too. As you may have read in my previous posts, the membranes caused my neck and spine to dislocate so that adds another layer of difficulty.
The past year has been awful and I too cannot do much at all. Fatigue wise I feel better when I stop taking Amitriptyline as that makes me sleepy, however the headaches worsen. I have also started eating foods from the Paleo diet. That is eating clean, unprocessed food. It is not eating grains and low dairy. I am not doing it strictly as I find that too hard but so far it seems to be helping. I take raw coconut oil, a 1/4 spoon in hot water (add a little cold water as the oil gets very hot) and I fry using it. Coconut oil is good for the brain.
Otherwise I am just resting. Last week I had four days in bed in severe head pain.
I am sick of resting and being housebound, I feel I am going stir crazy and like you I am losing hope.
I have noise sensitivity and I carry earplugs around which help.
I am sorry I haven't given you the hope you were looking for but I am suffering along with you. I am reminding myself that the advice says it takes 18 months so we can still improve in that timescale. Yet.
Hi Peacock1 I’m sorry to read this. I feel like a bit of a fraud as I was only in hospital one night . They sent me home cause I lied and said my hubby was there( we have separated) I am not sure they would have let me home if they’d known. Anyway I’m 2 weeks in and the dizziness is really a problem.
I’d love to hear how the neurologist goes . Lots of love and strength to you xxx
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