Hi everyone. I'm sure I'm not alone in this, but after really struggling physically and mentally since coming home from hospital four weeks ago after vm some of my symptoms took a turn for the worse last night with a much stiffer/painful neck and pounding headache, which I've had for most of today. Apart from the difficulty in coping with the pain, it felt scary too because this is a new illness to me so I have no way of knowing what to expect and when to be concerned (thank God for you guys and the helpline!). Despite a good support network, I have felt really alone with this a lot of the time, and my experience in hospital demonstrates to me that the majority of doctors are totally clueless when it comes to vm! I'm guessing my experience and feelings are not unique.
Stay strong!
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CHB34
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I hope a bad day is followed by a good day. My headaches worsened after 7 weeks and now every time I bend over my head pounds and I feel nauseous. I think it is a long road back for some of us. I feel pretty alone in this, too. Good luck and good healing to us all!
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
Yes it's quite true, doctors generally are pretty clueless about the after effects and recovery process following meningitis. It seems they have been told that for most patients it's rather like recovering from a bad dose of flu and that in a few weeks you will have recovered. This might well be true for a very few patients who have had a mild infection but for the vast majority of us it's a long way from the actual reality. The trouble is when people are told they will be back to normal after a few weeks rest at home and they are not, they naturally start wondering what is going on. It would be interesting to know how many doctors themselves contract meningitis and why they don't inform their colleagues that the mantra they keep spouting about recovery in a few weeks is completely fallacious. Anyway that aside, good luck and hope you start improving soon.
Hi sorry that you have had to go through this it is a complete unknown rollercoaster road for us all and pretty misunderstood. After about 3months of being discharged and lying on the floor at work l decided to demand a specialist best thing l did just saw her again last week this was my second appointment in a year so you don't get mollycoddled but l'v had a memory assessment to and with that you feel less panicky about your symptoms. Anyway the short version take your time don't push yourself apparently two years is the main recovery time from a bad case of v.m. any symptoms after that will just have to be dealt with with drugs but l think there is still recovery time after this. I used to check what l was feeling was normal with everyone on this site it is a great comfort. Good luck don't push to hard.
Thanks for sharing your experience, it's really helpful and reassuring when you hear that other people have faced the same issues. I'm so glad you have finally got the help you need and deserve. None of us should have to be fighting for proper help and information when just coping with the illness is so hard.
My number one lesson that I have to learn is patience!!
Hi there x Can I ask: Was that a neurologist specialist you asked for and how long after your illness was it? I am worried about my memory and cognition.
Hi didn't directly ask for a neurologist l took ill start of December "16 started back one/two afternoons a week in February by about April/may l got so bad l phoned the hospital dept. I had my outpatients assessment at after my realise from hospital, they told me to come in and took another lumber puncture because of increased levels of something in that l got referred from there. Now 23 months later balance, headaches and memory are still a very strong issue better than they were though. local doctors don't help they don't have the experience thats why in desperation l phoned the hospital best call l eveŕ made. My memory gets worse when my head is bad or l'm tired but as l said l passed the memory assesment, some things stick somethings dont but l was told to be kinder to myself and not so unforgiving if l forget things, good advice for us all. Good luck
Thanks. I am month 13. My hospital care was bad so i dont think that route will workall i can do is try my gp. What hospital specialist or department saw you do you know?
Hi can't remember but think it was contagious diseases l was transferred between hospitals because of blood in my first lumber specimen will try and find an old appointment card. If your g.p. is good they might refer you even to the memory clinic it certainly put my mind at ease but it didnt come easy l had to keep asking for help till l got the right person and help. It did mean another lumber puncture but l was desperate. Good luck with your recovery l hope you get the help you need soon.
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
Hi, are you still taking antibiotics viral meds? Was your head throbbing like that when you were discharged?
I think the throbbing headache (like it will pop out the top of your head, especially when you bend over or bear down) is from brain swellingwhich can lead to dangerous encephalitis. I would tell them and get them to give you (another?) CT scan and anti viral medication if you haven't had any yet.
Thanks for the advice and your good wishes. I was given both antibiotics and antivirals in hospital, but nothing on discharge. I don't recall having a throbbing headache when I came home, it seems to come and go and it is definitely linked with concurrent neck issues. It's interesting, I have lived with the pain, exhaustion etc of ME/CFS for many years, but I can pinpoint a lot of symptoms that for me are uniquely vm related. I also believe a botched lumbar puncture has caused back pain in places I've never experienced pain before. Have other people had this?
I can't remember having headaches for the first few weeks after discharge though there was a lot going on in my head but then they came and haven't so far left just varied in intensity and as l said that's been 21 months. After my 3rd lumber puncture strangely l had a week of feeling great with no headaches or pressure ( puncture 2 was also a botched disaster) so l wouldnt be surprised if your l.p. had an impact on your back.
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
I have many bad days too. It is scary. I agree with you. I was put into the hospital for two weeks and they sent me home thinking I was fine but wasn't. I was rushed back to the hospital for an even longer stay. The side affects are awful. For me meningitis has left me profoundly deaf, with balance issues, dizzy and tinnitus. Doing the slightest activity tires me out now. I don't know what my future has to offer. I get very angry and depressed at times too.
I know how you feel alone, me too. If you would like a friend I'm here. I'm looking for some friends.
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