Meningitis Now

VM advise needed

I’ve just been discharged from hospital with VM however I have little or no advice about the recovery other than it should take 7-10 days. My concern is that I still have pounding headaches, very forgetful (normally a multi tasker) and feeling anxious.....feel like I have brain fog and very tired all the time. Why can’t I concentrate or take information in as I should, i find myself shutting of from conversations, but like brain overload, is this normal and how long does it last :(

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Hi. Sorry to hear you are poorly. Firstly it really frustrates me that hospitals discharge VM patients & say a 5-10 day recovery. I expect very mild cases of VM might would struggle to fully recover in this short period. I haven’t read of anyone who recovers in this time. Quite frankly not enough is known about VM and more research is needed. Every patient is different so I don’t think anyone can tell you how long it will take. VM seems to effect people differently. Some recover faster than others but I don’t know why. You have to listen to your body and you’ll get there in your own time. When I was given a recovery time all it did was upset me & frustrate me that I wasn’t better by those markers. My advice would be, lots of rest and self care. Don’t rush to do anything. Accept help where you need it. Eat well & rest as much as you need. Get fresh air. Enjoy the company of others but only when you have the energy. Don’t feel bad to say no or to ask people to leave if you need to close your eyes. Just take time. Don’t rush back to work and don’t put any pressure on yourself. Be kind to yourself. Have some CBT if the anxiety gets too much. When your body tells you that you need sleep, sleep. Give it what it needs. Take headache relief if you need it. Don’t fight it.

I wish I’d had this advice. I’m nearly 2yrs post VM and struggling. I didn’t rest and I rushed back to work. I put pressure on myself & my health to be better in the silly timescales that the doctors give. I pushed myself because I didn’t believe I should still be unwell all because I was told I’d be better in a few weeks.

I hope you are better in 5-10 days but if not, don’t punish yourself. Only you will know when you feel back to normal. Acceptance is key, or at least it has been for me.

Positive thoughts & wishing you well.

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The same as previous it will take time. I rushed back and suffered take advantage long as you can.

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Thank you :(

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Thank you so much, i think I’m in the same position I don’t understand why I am not springing back to normal, feel like people thinking I’m faking because I look ‘ok’ when inside I am clearly not, I sleep loads, can’t to the multitasks I would normally do, everything is too much effort in one hit, can’t handle lots of people talking sort of information overload happens and I feel myself shutting down. I appreciate you replying it’s so reassuring to know I’m not going mad! I don’t understand why people are not being given more information about this. Thank you once again I will take your advice and try to apply it the best I can x

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I totally relate. It’s the hidden illness & people can’t see the struggle. You are not going mad but I know the feeling! I felt like you and got frustrated with myself but also others because I look ok. I’m sure people think I fake it but I’ve learnt to rise above that paranoia and just accept my body is healing. Some days I function better than others. For instance I took my nephew to the cinema to watch a Disney movie on Saturday, I couldn’t watch it, it was 3D and hurt my eyes, I got really sleepy & wanted to close my eyes. I then spent yesterday resting & feeling fatigued. It’s frustrating but I guess unless you tell everyone then people will just see that you went to the cinema, you are okay. They won’t see the consequences. If I’d known that would be the effect then I wouldn’t have gone.

It helps to share experiences. Even just writing it down helps.

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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.

Kind wishes and best of luck

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Thank you. I’ve tried Craniosacral and it didn’t do anything for me. Lovely that it worked for Rosie x

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Similar yesterday, went for lunch with my daughter and partner for a change get out etc, I couldn’t stand the noise or the lights, felt my eyes burning, I couldn’t even enjoy playing a board game with them, my head wouldn’t take it, totally disengaged, normally I enjoy a social trip to the local, I had to leave, sat back at home on the sofa and cried, stayed there again till bedtime. It’s really horrible and sad that advice not given to help manage expectations and severity of VM.

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I live in Memphis Tennessee. I had surgery on my lower back and gotten bacterial meningitis. It's been 4 months and I have a lot of problems. Insomnia is one but i haven'read about anyone having this issue or vein athropy that I have. I go to a lot of different doctors and had lots of test and they say everything is fine. I feel crazy. I wish there was a doctor who knew about this and or a support group. Although maybe in a support group all you would hear is a bunch of moaning and complaining. I just like hearing of stuff people tried to help. When I used to exercise I would feel alive. Now I feel worse when I do or no change at all. Ringing in the ears, memory issues, fatigue, no appetite, And many many more problems. I'm microdosing magic mushrooms. It seems to be helping some days with depression. But this insomnia is the worse.

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Hi take it easy for at least 4to6 week try not lift anything or stairs I found if you over do it you will get headache and body pains listen to your body if it hurts stop and rest good luck help man

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Thank you x

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I too can relate to everything previously stated. I still find noise a problem and have difficulty focussing. There needs to be more info out there to reassure people. Don't put pressure on yourself. Take care.

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Thank you x

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You must rest let you body tell you .when I came out of hospital with menicoccal septisem I thought I could get get in with things I struggled for 2Year because I kept pushing myself the worst thing you can do .For the passed year and half I have been nearly demobilised with chronic headaches and fatigue.You don’t get any information on how to deal with this illness no one want to know. If you over do it your in real trouble take your time to get better and vitamins that your body needs I do wish you all the best for a recovery take care 1251

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Gosh I’m so sorry that you have struggled so much :( thank you for taking the time to give me your help and advice it is appreciated and I hope you get some restbite too x

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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.

Kind wishes and best of luck

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Thank you so much I will have a read x

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I also am 7 months since VM. I totally agree with AlliG ~ the doctors simply do not understand enough about this. They tell you "5-10 days" because by then the virus itself should have run its course. However, this does not address the multiple long-term side effects of having had the virus. My infectious disease docs pretty much washed their hands of me after the medications ended. Thank God my primary care doctor (I am in the U.S.) absolutely believed in me and what I was saying so is taking everything seriously and monitoring me closely. I was at least 8-12 weeks before I could stand any bright lights and I still can't stand any flashing lights. I am very sensitive to sound so loud music is out! On top of all that I was diagnosed with breast cancer and am recovering from a bilateral mastectomy. I am very grateful that I do not need chemo and radiation as I am not sure my body could handle either one right now. I still feel utterly exhausted every day from the meningitis!!

This site provided me with the most help in that I knew I was not alone and that his crap is real!! So know that you are not alone. We have all been there (or are still there) one way or the other.

It will get better but it is a slow process. ~ Peace

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Thank you so much for taking the time to reply and As I’ve already experienced briefly you have all given me so much more advice and support from then the GPS! I am sorry to hear you are not well and wish you lots of luck as you recover too. It’s a horrible illness that’s for sure :( take care

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I know it’s frustrating to not bounce back like you think you should’ve but please ease in to things. When I first came home, I literally had to take a nap after taking a bath. I could bathe, comb my hair, and then not even get dressed. I napped in my towel. Sleep as much as your body needs you to and drink plenty of water and try to eat as well as you can, I know i was so tired I hardly ate which couldn’t have been helping at all. Prayers for patience and healing

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Thank you you are right I was the same it’s horrible as so unlike me too, I still have the headaches and the tiredness along with brain fog.... am slowly improving but clearly not within 7 days as per GP. I appreciate you replying thank you

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Hi. May be what I will write now can help. I had VM last year. 20 days in hospital. My conclusion from all what happened then and during recovery is that the cause of the symptoms is not so much VM itself but spinal puncture. Really. I have studied all possible medical reports and beetween words we can conclude that symptoms after VM can be caused by spinal fluid leak. Spinal cord heals for about 41 days - not as doctors tell us 2 weeks- according to one study done many years ago (I can’t remember where I read that unfortunately). Doctors don’t say that to patients. A friend of mine after having puncture done 9 times while VM (!!!) now suffers from epilepsy and other brain disfunctions. She wanted to sue the hospital for that but was informed by lawyers that it’s very hard to prove that it was puncture not VM. Headaches are her everyday companion too. After VM - VM headache and symptoms go away in max 14 days, as the VM virus stays in human only as long, which was like that with me too, ( I had VM headaches 13 days and one morning they were gone) but what is left , is this ugly after puncture headache and other neurological symptoms. For example I not only had that headache but also horrible sight disorders and dizziness. I had to lay down most of the day because when I walked or stood all symptoms kept coming back. Then I read Here on the forum that it might have been spinal cord leak as VM headache and after puncture headache feel different. You will notice the difference when you recover. Then I started looking for natural healing methods when I read that we must help our nervous system and spinal cord heal. I started to massage oregano oil on my feet and both sides of my neck, takie blackseed oil (1 tea spoon with lemon Juice twice a day) and I noticed that it started to work Then I read about pomergranate juice and I started to drink it 1 litre a day for a few days and arę 1 white chocolate a day. Sugar helps brain to recover. In hospital they gave me Manitol - which is just sugar in high doses. It allows your brain to heal quickly. But Thanks to pomergranate juice ( now I m sure) all neurological symptoms were gone in 4 days. However I rested and slept a lot. Try it. I recovered from VM and all symptoms completely in 2 months. Around 45 days for spinal cord to heal plus 13 days of VM which is 2 months. After that I still felt tired very often but the symptoms arę gone. White chocolate,oregano oil, blackseed oil and pomergranate juice.

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Thank you wow, really interesting and yes bizarrely I notice is feel better when I drink tea loaded with sugar, I will try the pomegranate juice too! Appreciate your advice, I’m two weeks I’m still brain fog, forgetful and fatigued :(

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I put on weight 4 kilos then 😀it must be white chocolate as it contains the most sugar.

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