Viral menegitis : Hi I'm looking for any... - Meningitis Now

Meningitis Now

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Viral menegitis

Amandagraham
Amandagraham

Hi I'm looking for any advice on vm I was diagnosed 9 weeks ago and never been the same since I'm constantly tired suffer constant head ache neck ache and mood swings Ive been back to see my local gp who has refferd me to see a neurologist. It scares me at how long it's taking me to recover and is this normal I can't sleep at night for the pain and get myself so upset worrying wil i ever be the same again I constantly forget things and feel sick has anyone else experienced these symptoms thanks

23 Replies
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I'm right about at 9~10 weeks & feel the same as you. I am allowing myself time to just get well eating anti~inflammatory foods & taking natural pain meds & tons of resting being in bed most of the time. Before I got this I had a nasty virus that lasted 2 months, then the neck & head thing started & I knew something was horribly wrong. Hopefully someone else on here can give you more advice. I am choosing to not go back in because I don't want more toxins in my body or tests that may harm me. I almost feel like it gets worse before it gets better..my experience anyway. In the beginning I lost weight immediately & I am gaining a little back lately so I look at that as a good sign. Just wanted you to know that I don't think you're alone. Hope you feel better soon.

Jenny51 sorry you are feeling this way. They are not sure if I had meningitis or not. They did a lumbar puncture over two weeks after the onset of symptoms. My neck did hurt a little in the beginning, however as time progressed it got worse. My question is did your neck hurt worse as time went on for you? Any help would be appreciated. Oh by the way did you have a fever too?

Thank you so much.

Yes my neck hurt far worse as time has gone on. I feel like I'm not getting better. I didn't have a fever ever. My normal is about 97.9 so 98.4 is making me wonder if my immune system is trying to help. Today is 3 months for me & I feel awful. My spine hurts today..it's almost like a pinball machine in that it is different everyday bouncing all over my body. Hope you're doing better.

Thank you so much for responding. I have been searching for answers. That’s how I feel. It has been over 4 months for me and I have started to feel a little better but the neck and the base of my skull has really thrown me for a loop. It is hard for me to lay my head down at night. I am on 10 mg of amatriptyline that has seemed to help me a little. I hate to ask all of these questions but does it hurt when you lay down at night to sleep? I also felt like when I climbed stairs that my neck and base of my head got really tight. Oh and I had weakness in my legs. Did you have weakness in your legs by chance? Thank you so much and I hope and pray that we both start feeling back to normal very soon.

Don't feel bad for asking. I feel pretty lousy wondering if I'll ever be ok. Yes my neck hurts most of the time & it does get that tight feeling. My pain is whole body with my arms & legs feeling weak like my legs might give out while walking. I get pains in my head & ears like an ice pick is being poked inside of me & I am beyond exhausted from doing nothing. I'm lucky to get a shower. I basically exist right now walking to the kitchen & bathroom & once in awhile I go outside. Completely debilitating!! Not sure that it matters but wonder about age or immune function?? Lots of questions. I am in my 60's & female, take no pharmaceuticals, not overweight actually might be u underweight. I do have low magnesium & possibly low on some other things. I was in the process of tests when it hit me, feel too sick & weak to go anywhere. I pray for all of us every night even the ones that didn't make it. Such a horrible thing to go through. I'm trying to accept it for what it is so my body isn't fighting my healing. Peace inside our bodies to everyone🙏

Oh also I just started taking Monolaurin..read great things about it. I take Curamin & CuraMed for pain & vitamins & vit D & omegas & magnesium & CoQ10. I eat very little meat, tons of organic veggies & fruits, nuts & seeds, no dairy.

Thank you so much. Yes I do have lots of questions because I don’t know if I even had it. I am not sure if I told you but one neurologist thought I might have had it but on my lumbar puncture it didn’t show it but I had it over two weeks later of the original headache. Did you have a lumbar puncture that confirmed yours? Sorry I don’t remember if you said that. Right now my neck really hurts and sleeping has gotten worse over the last 4 months. So I am really wondering if this is something else. I am 51 and I too thought I was in decent health. I don’t think I am overweight but I would like to loose 10 pounds but for some reason I think that if I eat my head will fell better. When they did my lumbar puncture I did have blood in it and they said it was from a traumatic tap but I don’t know. I am deficient in magnesium and so I am taking a supplement. I was taking amatriptylyn but I stopped because I hate taking medicine but I started it again. I go to a natural doctor and she is the one who put me on the magnesium and coq10. Have you read that both of these help? I am in the US are you? I just want to cry I really don’t know what to do. I pray that we both can start to feel better very soon.

Hi, I am about 8 weeks along. I was in hospital for 19 days. I have been out staying with friends for a week (until my husband returns to Cyprus from work in the U.K) because I can’t function by myself yet. However, yesterday I had my second session with a very well qualified osteopath. In only 2 sessions he has brought about changes and some improvement in my body and my ability to sit up and stand up for longer and think more clearly. He is doing very gentle Crano sacral work on my head and helping my liver and kidneys to flush out all the meds I took in hospital. If you can find a good one, well trained and experienced it could really speed up your recovery. It won’t be a fast recovery but I think faster than it would be otherwise. It’s also good to feel the changes in my head, ears, neck during the session. It feels yucky and very weird at times but satisfying if you know what I mean. Things are shifting and that feels positive! Good luck with your recovery.

Hi Amanda 9 weeks is very early in recovery. It took about 4.5 months to start feeling better and 6 months before feeling a sense of normality for me. 9 months on and it's much better although I do get knock backs at times.

Give yourself time and rest. It's what's needed to repair your brain. If you push hard now it will set you back. It really is a game of patience. Take it month by month and you will see a difference. Most doctors are not aware how long recovery is as they usually haven't treated another patient with meningitis. I wish you recovery a d send prayers. Just take it step by step and you will get better

Amandagraham
Amandagraham in reply to kawt

Thank you so much for taking time to reply it has gave me hope that I won't always feel this way today Is a bad day for me I have zero energy and a pounding headache been in bed most of the day x

kawt
kawt in reply to Amandagraham

I just had to reply to you as when I was at 2 months recovery I also thought I would never get better. I was so frightened by how debilitating it was. It's a slow recovery and I think it helps to know it takes time.

Tupshaw
Tupshaw in reply to kawt

Kwat I am so lost about what I have, but it seems that my neck pain got worse over time. Did you feel this way? And did you have a fever. I am just trying to find out what I may have had.

kawt
kawt in reply to Tupshaw

Did you have a lumbar puncture to diagnose meningitis? I did and that's how I knew definitively what I had. Yes I had neck pain and could barely move my neck at the hospital. I have high fever nearly 40 Celsius. I couldn't walk or talk when I got to the hospital. I had violent vomiting, couldn't stand the light. I have experienced lots of after effects. Upper body pain and neck pain to name a couple. What's your story?

Tupshaw
Tupshaw in reply to kawt

Yes I had a lumbar puncture but not until 2 and a half weeks later and it did not show viral meningitis so not sure if it is really what I had. I know that I am not as tired as I us to be but my neck continues to be very stiff. I have had two MRIs and two CTAs and one CT and they say they are normal but I don’t feel normal. I am not as tired as I use to be but the way i feel is not normal so I don’t know if something is being missed. Do you still have your neck pain? Mine seems like it has gotten worse not better. It did not feel this way in the beginning. Any advice would be appreciated.

kawt
kawt in reply to Tupshaw

My neck pain comes and goes but it's not stiff or debilitating. I have more trouble with my left arm than my neck. At times my left arm is very achy and weak but I've no answers for it. Sometimes it see.s my neck is causing it and other times it happens after heart palpitations which I'm being checked out for. It could be an after effect of the meningitis that you have been left with but it may resolve over time. I have no advice to help you. I use heat packs a lot. And I rest when it gets too much.

Hi Im sorry you are recovering from this debilitating sickness. I am just on 6 mths recovery and still have a migraine headaches,especially across the eyes and one from the base of my neck. The neck one does get better when I lie down. I am still quite week and still have sensitivity to light.

You may feel like it will never end but from what I was when I came home after being in hospital 1 month, i am so much better now. I couldnt walk or eat. Spent another 1 month in bed after coming home.

I am now accepting that this is my new normal and hopefully will improve so much more by 12 months.

Just listen and to your body if you need sleep, sleep just do what you feel helps.

Lippistix
Lippistix in reply to jenny2448

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

Veba
Veba in reply to jenny2448

I feel for you. I have had paraesthesia for 19 months since my last very bad bout of aseptic meningitis which I got on the tail of a flu contracted by someone who coughed near me. Lupus is my undoing and my immune system is so low because of it, Life is existence I can't even be in the sun for any longer than a few minutes as I flare up with Lupus. There has to be a reason for it. Flu mosquito or is it Lyme. So many questions and no answers. I get meningitis like people get the flu. I would rather have flu any day at least you know it will go away sooner rather than later. Viral meningitis hangs around forever.

Hi and thank you for your reply it's good to know I'm not alone and it's normal to feel this way as I wasn't told anything after leaving hospital about recovery I assumed I would be back to my normal self after a couple of weeks I have 7 children youngest being 2years old it's very hard to rest or get quiet time I spend time in my bedroom whenever I get the chance of a rest as I'm constantly tired and as for the headache it never let's up x

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

I am sorry to hear about your struggles. My daughter had a suspected case of VM 2 years ago; she was in bed for 4 weeks; two mad dashes to ER; and missed 6 weeks of school. While she is mostly recovered, she still gets severe headaches, debilitating fatigue, dizziness and painful joints whenever she gets run down by another virus or from a lack of sleep. She has just spent another 2 weeks in bed after having a common cold. The headaches are horrible! All I can say is that the periods of her being well are getting longer; and I am hopeful that she will eventually make a full recovery. I feel that she is definitely better when she eats well, exercises a little (but nothing too intense!); she also takes anti-viral herbal medication when her symptoms are acute, which I get from an experienced naturopath - these do seem to help lessen some of the symptoms. Nothing works really well for the headaches though! It's comforting to read other people's stories and to know my daughter is not alone in this. I wish you all the very best in your recovery! Blessings x

Tupshaw
Tupshaw in reply to NikkiGill

Hello. I am so sorry your daughter is going through this. I hope and pray that she starts feeling better soon. I am curious, you said that she had a suspected case of VM does that mean you didn’t have a lumbar puncture? I am only asking because when I had my Lumbar puncture 2 and a half weeks later (after the original terrible headache) mind did not show VM. Did your daughter have any scans? Also has she had a stiff neck with her other symptoms? Sorry for all of the questions but I am tired of not feeling well.

NikkiGill
NikkiGill in reply to Tupshaw

Hello - thank you. I don't mind the questions; I have had many questions! It's been a journey. Yes, my daughter's initial symptoms were spiking fever, severe headache (she had migraine before but this headache had her in tears - she said it felt like her brain was going to explode), stiff neck, nausea (but no vomiting), painful joints, swollen lymph nodes and extreme fatigue. She didn't have a lumbar puncture. She had every blood test known to mankind, and multiple trips to the ER; by the time she saw an ER specialist with some experience, she no longer had a stiff neck and her fever had broken. The doctor said he suspected VM but as it was a few weeks down the track, the lumbar puncture might return a false negative. Because of the possible side effects and my daughter's age, I opted not to have it done. She did have a CT scan but it was not conclusive - she was referred for a scan weeks after the initial onset of the infection. I am certain that if we saw a more experienced/competent doctor who recognised the symptoms, we would've had a positive result. She ended up in bed for weeks - to weak to move; and missed many weeks of school. She seemed to recover well, but have since had three episodes of intense "relapse". Other than that, it has left her with chronic headaches, dizziness and fatigue. She definitely can't do what she used to, even during times when she's feeling better. It really is a nasty, nasty infection. I hope you get some answers - and that better health is just around the corner!

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