Meningitis Now
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Hi everyone

I have just discovered this site whilst looking for something to convince me I am not going completely insane! I was diagnosed with viral meningitis in June and it has been a baffling journey since then. I think I initially did not feel too bad and foolishly didn't consider 'a recovery' until around 2 weeks in and 'Boom' the issues hit and I was wondering if these experiences are common or 'normal' as my GP really does not seem interested and the hospital offered no follow up appointment or information on discharge.

I have had the most striking headaches (never experienced headaches before this) and am wondering whether energy ever returns as I feel constantly exhausted. There have been some 'seeing stars' type experiences and feeling like 'your in a bubble' (sounds all muffled) .

I have put on quite a bit of weight (I was a really active person before) and find that I can sometimes be agitated / easily irritated (totally not me)

Anxiety is another new experience, for example I churn and panic if I'm a passenger In car or being on a train causes a lot of anxiety as all of the noises sound so much louder than I ever experienced and I panic that there is a mechanical fault as I can seem to now hear every single aspect of the trains workings.

Cognitively I can loose words (I know what I want to say but it won't come out) or have more difficulty in structuring my thoughts than I ever used to (and I am a lecturer so these things worry me as I need these functions to do my job)

The most recent thing is involving a loss of feeling in my hand, it has now come back but i don't know what is occurring there or why.

Is there anyone on the forum that has any experience of VM and can relate in any way to some of these experiences. I am really struggling to make sense of this all

Thank you everyone

Ka

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I have just had meninges -encephalitis from having the flu was put into a coma for 6 days and I was in hospital for 1 month. I became so weak and the lights in the hospital, I was always begging the nurses to turn them off as i was having bad headaches. I take quite a few medications and they have reduced my pain medications by 1/5 and it as so frustrating because now i have added pain because of the headaches. I asked my rheumatologist why I can't have my usual medications and he looked at me and said you nearly died. If i had my usual medications would go unconscious again. Now i am so scared to be left on my own and we had to buy black blinds for my bedroom. Does anyone know how long these headaches last? I also lose words and I can't remember things that like pin numbers etc its very frustrating.

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I’ve been told by my Neurologist I need a cognitive therapist to learn some ways of coping with this h p t s d. Hospital post traumatic stress disorder. I’m looking into it!

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How long ago did you get it? I contracted it Christmas Day 2016/ merry Christmas! In the back of my mind I’m dreading the holidays, we My parents and sister were coming back from my other sisters when I got so sick fell into a diabetic coma on the road trip home.

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I had my ordeal in September 2017. I went into hospital unconciousi and was put in into a coma and went through so many tests and had two spinal taps and the Drs warned my family I may not be able recognise them i may be paralysed etc. I might not be able to breath on my own after they took me 0ff the life support. When I woke up one of my sons were sitting really close to my face and my husband was on the other side. They burst into tears as i call all my sons bubba even though there all in there thirties. I recognised my eldest son and said what are you doing here bubba. I didn't know why they took off to the end of my bed but they were so happy i had recognisedI wouldn' t wake up and recognize them. I was in hospital for three weeks and came home. Then after 11/2 days, I went unconscious again so spent 3 days in intensive care unit and 4 in a ward my kidneys had crashed .When I came home the first time I had this sensitivity to all light. I was hoping I would be okay after the second time but I am worse.i just want to get out to enjoy my life but can't.

I lost all muscles as previously i have a had a spiral break twice in my femur and it definately hard to get around as I cant put full weight on my right leg.

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Meningitis is so sneaky, seems likes all it takes is a lot of little Things like an ear infection and what seems like a simple cold can blow up into a major storm that can smash you to pieces without any warning. So glad we both found this light house in the storm. Take care hope you have more good days then bad.

😊❤️Rebecca

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That all sounds very frightening

It must be still very raw as well with it being in September.

I haven't learned enough about recovery yet to be of great use here but my major battle was ...be kind to yourself. Try to loose words such as should and would and if you can try to 'accept' how you feel each day rayjer than question why as in that way you can relax and rest far eaiser

I hope your journey starts to draw in positive moves forward soon

Ka

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That sounds awful...it must have been terrifying.

As for myself, I first contracted it early in June this year so I guess from what I have read so far on this site it is early days

Ka

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True but take it a moment at a time. Stress is really hard on us. Remember to breath

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I had meningoencephalitis (meningitis and encephalitis - 2 for the price of one, thanks!) - which sounds similar to yours - in coma for a week in hospital for 1 month, again all similar. I absolutely remember the headaches lasting for 3 months and nothing would touch them. But I did wake up one day and it had eased. I just kept sleeping really..

Light sensitivity was a big thing too. I was on some anti-epilepsy tablets for 12 months which I think effected everything from memory to speech. I had some sort of speech and language therapy and physio in an old folks home (I was 44!) it was all a bit surreal. Funny now looking back, not funny at the time though.

Graham

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That sounds so terrifying that it sounds logical to me that you would be scared to be alone.

I am so sorry for everything you have been through.

I am myself only just learning so I might not have as many answers as many people on this site....one day in I have already learnt that there is a wealth of knowledge here.

The things I might however be able to say is that it is important to be kind to yourself and giving yourself time to heal (try to loose the words must and should for example)

The headaches have lessened for me but have not gone away and I first became ill at the beginning of June if that helps?

I got something called a 'Daith Piercing' the other day as many people commented how it had worked for their headaches and whilst it is too early days to say for sure, I haven't yet had another in 2 weeks which is pretty unheard of

I don't know what your position is with work but what I found is that it was far easier to be kind to yourself when not at work and that when you return so do the expectations. On top of this you might not 'look' unwell and people then just assume everything is OK.

Therefore if you can, take time before you embark back on anything that requires any demands on you and your body (left to my non work devises I am doing well if I make it up and functioning before mid day and this is someone who used to be up at the crack of dawn to go hiking)

Thank you for taking time to read my post and respond

Ka

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Try acupuncture. It has transformed my life as my headaches have finally gone. I still have a scrambled heartburn I am learning to live with it

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I am booked in at the local Chinese health centre for my first session.

Thanks for the recommendation

Ka

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Hi Ka you have found the right place. I have the aftermath of Bacterial Meningitis 10 months ago I was induced into a comatose state to be treated and diagnosed with a vast array of tests that I am so grateful for, they saved my life the first time from 12/25/16-1/17/17 Then Rehab too soon and then thanks to complications induced for a 2nd time for another 12 days.

This time really ready for rehab. To regain all body functioning total paralyzed thanks to total muscular atrophy. Lost 40 lbs all of it muscular mass. Had to rebuild from the ground up! My body crashed a total reboot. Have had to relearn how to walk ,speak ,think, function etc etc etc. being part of this forum I’ve learned that this is a marathon good days bad days it’s a rough moment in our lives but we have made it this far, not everyone dose most of my drs didn’t have a whole lot of hope that I’d still be here. After this devastating illness! But so far I am and you are still here. A day a moment at a time. Be nice to yourself think of it as a sprained body, our entire body has been weakened and there will be a lot of weak spots of a long time to come. Sleep is our best friend right now. The headaches are our bodies crying out to get our attention to remind us I need to be cared for I’m not feeling good. Don’t push the body, that’s how we got sick in the first place pushing to hard.

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Thank you so much for your reply :) and I feel truly humbled after hearing what you have been through.

It sounds as though you have a lot of internal strength and that this has got you through.

A day at a time seems to be the best statement for any day and it was actually what I went to sleep thinking...yesterday was a really 'bad' energy and health day...bu today is better :) Plus the sun is shinning!

Thank you so much for sharing your journey, I will try to not push my body and more importantly see that the pains and aches are our bodies way of communicating with us...I really like that analogy

:)

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Hi Kahubbard. Thank you for the compliment. I belong to a writing workshop, which has really really been helpful with SORTING things out. Find a way to express the questions you have about what you have gone through. I live in New Jersey and can’t drive because of the paralytic Neuropathy. Which is really hard because up until a week ago I didn’t have anybody to help go shopping dr appointments get out of the house 🏡. I’m having a good moment. Thank you for your reply.

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One more thing my name is Rebecca.

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It's good to meet you Rebecca

Life sounds like it can be a challenge for you. I am lucky to be just starting back driving but to be fair I haven't driven any distance (considering I did 1,500 miles around Ireland a few weeks before I got ill not driving for 4 months and now 2 months of feeling OK to do around 10 miles is a sharp contrast.

The writing group sounds really good

Ka

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Please give my daughter's story a read on this site. Rosie S's Story. Here lies sugnificant success (from what we know so far), for complete recovery from VM!

She suffered for near on two years before discovering meningitis now, subsequently trying cranial massage by visiting an independant cranial osteopath in her area.

All the symptoms you are experiencing are pretty much similar to what she suffered. It seems the key, and recent breakthrough, is releasing the spinal fluid which VM leaves a blockage for...and enabling it to flow again through your body, particularly your head.

There are some on this sight who have now given it a go after reading about it, and after just a couple of sessions, felt considerable relief.

I the last few weeks Rosie and I have been contacted by the media, news papers and radio to tell our story of this potential breakthrough!

We now feel we want to help as many poor people who have suffered this dreadful illness for which before now seemed there was no light at the end of the tunnel.

Good luck and please keep posed how you get on if you try this amazing treatment. Rosie coupled this with acupuncture, having alternate treatments once a week, now a couple of months in. Xx

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Oh thank thank thank you thank you...so much

Both for taking the time to read my post and for responding.

It is quite timely that I read about your daughters experiences of cranial massage as my friend has just been advocating this for me (she utilises it for a seperate but similar issue and thought it might be useful)

You have had a remarkable journey and I have so much respect for people who will use their awful experiences to help and assist others....I made a total point of making sure all of our students starting University this year knew of the risks and where they could access the doctor for the jab as my small way of trying to rasie awareness.

Once I understand more I aim to do the same as you but at the moment I am still trying to make sense of it all.

I am however a current convert to complementary therapies and will find my closes cranial therapist

Thank you

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These are my 28 year old daughter's own words below which hooefully explains much to do with her VM recovery! :

Rosies own account of her post VM recovery

.....I wanted to share my success story as I feel my treatments may help many others with similar symptoms that I had…..I had viral meningitis nearly 2 years ago, I suffered long term after effects such as head aches, stiff neck, dizziness, anxiety, depression, mood swings, bad memory, lack of concentration and most frustratingly mainly no energy whatsoever 😞I was stuck in a rut and didn't know where to turn to for help to feel better until my mum found this charity, Meningitis Now. I started having acupuncture in may this year as my mum spoke to a nurse that said it was a good thing to try for post viral meningitis which has been a huge help for my recovery in many ways and thanks to Meningitis Now I am also currently having complementary cranial osteopathy, I have had 7/10 sessions so far which has worked wonders and I honestly feel nearly 100% better, I throughly recommend both treatments for people suffering post VM after effects, it has been a long time since I felt back to my old self before I was ill, Meningitis Now have been a huge help and so supportive and understanding where as a lot of people don't realise that it can leave long term damaging effects, I lost friends that I thought were best friends that didn't believe I wasn't well and made me feel stupid and that I was probably just overreacting but it really was a relief speaking to the people at Meningitis Now and people understanding exactly how I was feeling and willing to help, I have attached my story that my mum sent to the website as I was asked to post it on here incase anyone feels it may be useful to read😊

After Effects

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Hi. I got sick last May and spent 6 weeks in hospital. I have no memory of most of this time. I am resting and have got a lot stronger BUT the dizziness is terrible. How long did yours last? I am waiting on another brain scan but I was also looking into alternative options. So happy to hear you are on the other side of this horrible illness.

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That is my daughter's account above. She had I'll effects post VM up until she tried the cranial massage...which was near on 2 years I'm afraid. Others who have given this alternative therapy a go on this site since, have experienced considerable relief. Hope this helps.

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Hi Jocon , Christmas 2016, I’m 10 months into this adventure. Roller coaster ups and downs day by day. Headaches hurt lights get too bright sometimes the migraines are rough Christmas week and most of January is a mystery that’s a lot of time to have lost.

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Hi, I think everyone is different but I am 5 months in and the dizziness has not been too bad recently. It has been much more the extreme tiredness, 'brain fog' and issues with hearing (things can be really loud) , visual (star type disturbances) , organising thoughts and losing or replacing words

I am reassured from my short time here that these are real and challenging after effects but I have also been encouraged to hear that things such as accumpuncture and cranial massage can really help.

I was experiencing really bad headaches but I got something called. 'daith' piercing 3 weeks ago (on recommendation for headaches as it is an acupressure point) and I don't know if it is coincidence yet but I have so far not had another headache yet.

It was really lovely hearing from you

Thank you for taking the time to reply

Ka

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Thank you so much for sharing your experience

You are totally spot on when you say people don't understand or indeed expect there to be longer term effects and I think that is what is the basis of feeling like your going mad (you feel you must be imagining it or just not coping with life well enough) This site and meeting others with similar experiences has really helped with that , I think it has helped some deeper acceptance within me as well

It was lovely to hear from you, thank you

Ka

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Oh everything you are experiencing is normal. I am now 10 weeks out of hospital from VM and finally have started to close to my usual self. Except for aching legs/ ankles and by 2-3pm fatigue hits but I push through it. Every week does get better. My advice is when you are not working you must lie down and rest. Nothing else helps. I am on a long lasting anti inflam and some pain killers if needed. But you WILL get better. But again REST is all that will help. Good luck.

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Thank you so much for taking the time to read and respond

It makes such a difference to hear that someone else is facing a similar situation...and that it might be normal to feel quite this tired.

You are right, rest does seem to be the only solution. It is interesting what you say about everything hurting as I also have this but had not thought to connect the two...I really had no information at hospital or follow up and my GP is not good so I am now trying to piece things together myself

Thank you and I hope you continue well on your journey...with rest :)

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Hi Ka

Yes you are not going mad, In short your brain has had a trauma! It needs time to recover. Your senses especially hearing has been effected because your nervous system is in a state of alert. You need to take a huge step back and slow everything down by not overdoing it. Your stress level has hit max. Listen to your body, when your brain is tired then good idea to take a nap in a dark room. Keep noise to a minimum. Try and stay away from noise especially where a lot of people are talking. It's heavy on your brain.

Your wording or finding words will come back. The bubble feeling will come away in time. I can't say anything about numbness in parts of body. Other victims have experienced it though.

Time , rest, patience and alot of it I'm afraid.

Recovery time depends on luck I guess.

Read my posts , maybe it will give you a clearer idea.

Take care.

Stef.

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Stef

That is such brilliant advice thank you...I had not thought about some things in the way you describe them but yes...it makes perfect sense.

I am really sensitive to sound at the moment (I was talking about it last night in a why kind of way) but it makes sense to me if I think about my nervous system being in a heightened state of arousal

When I think of my system in overload it helps me make sense of a lot of things to be fair....I think I was OK being kind to myself until I returned to work but once I was in 'work mode' that expectations come and you loose sight (or at least I have) of the recovery process, plus everyone says 'Oh you look well' and you feel like you therefore ought to be.

It makes sense now (system in overload) when I have delivered back to back teaching and wonder why my body is not keeping up (I was exhausted in every way yesterday but a little better today)

Most importantly, keeping the overload in mind again I can understand how the new anxiety feelings might be there...I have been saying...but I feel like I cant cope in the same way I used to....I cant think about that right now else I am going to feel overwhelemed...and similar statements

I will read your posts, and thank you :)

Ka

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Yes, everything I've read there is pretty much exactly what I went through. It does take time to recovery, it's a serious illness . Any infection takes recovery time, but an infection that effects the brain, the very thing that makes sense of the world for you...

I felt a bit "not of this planet" for a good few months, and really, maybe 12 months before I would say I felt "normal" (whatever that is). I;ve read here that many people describe being in a fog, that's what I felt. it is un-nerving and unsettling, but it does improve.

Graham

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Hi Graham

Yes...the fog is exactly it!!!

Almost like you have a hangover without having had the party.

It has been so reassuring to hear that I am not alone, that these are factors that occur during recovery and that I may not be loosing my mind (which I have been questioning the past week)

Thank you so much for taking the time to read my post and respopnding, it means a lot

Ka

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Take your time no heavy lifting no running listen to your body if it hurts or gives you a headache stop this could take 1 or 2 months in time look to be 80 to 90 % good luck helpman

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Thank you.....It has been so lovely to hear from other people who have experienced this.

I am way past 1 to 2 months as I contracted it in June but I guess everyone is a little different in the recovery process and timings

Thank you so much for taking time to read my post and to respond, it really does help

Ka

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It looks like you have been well answered, so I will put in a word that I have not commonly seen here in this forum, that I think is a help: cranial sacral message (therapy). It has been a help to my husband after VM. Best of luck to you!

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That is brilliant thank you

I am going to find a therapist locally as you are the second person to say it has been the best treatment for this. I have just embarked on the 'complementary / alternative route and seen a herbalist (I was getting nowhere with the GP) but will now seek out cranial sacral massage.

Thank you so much for taking the time to read and respond

Ka

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I'm new to this site. I had bacterial menegitis from 9/4/17-9/21/17. I was sedated for 12 days. Then out of ICU FOR 5 days to a week of nursing home. I thought after antibiotic was done I would just bounce back. I am also tapering off gabapentin as I believe it started all my chronic infections. I have severe chronic low back pain from bad surgery and excruitiating pelvic pain. I found as I was tapering off gabapentin My pelvic and abdominal pain were getting better. After BM it has increased and changed into more abdominal all over not just lower. I'm exhausted as I don't sleep well and stay up all night. The headaches get bad and neck still gets stiff. My back pain is now low and mid. I feel like it locks into spasm now. After walking or standing for 5 minutes. I'm not the same at all. No energy. The pain even sitting is severe. Is this to do with BM? Should I go back to Dr? Should I be concerned about another round. I'm terrified! Thanks

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Hello. I have similar severe pain in my groin and lower leg after walking or standing any length of time. It bothers me a lot at night. I thought it was arthritis but I'm now not so sure. I have been back to my doctor who prescribes more or different pain relief. I have decided it's up to me to sort out something and am making a start by seeing a physiotherapist next week. I am sure that fear of a recurrence or what the future holds for us holds back our recovery. I think it's pretty unlikely that you will have a recurrence and all I can really offer is that you take heart from all the support you will get from this forum and from the fact that so many of us share similar symptoms and do improve.

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Hi Ka I have just read your message and haven't yet read the other replies. But I wanted to suggest acupuncture for your headaches. I feel my experience mirrors yours very closely indeed. I have been waiting five months to see an ENT specialist -three months so far to see an eye specialist as the optician was unable to work out what's wrong with my right eye. The doctors are completely disinterested in my fears about the strange things that are going on with my brain (I, too forget things and scramble things having been the Queen of Multitasking) but after three months after leaving hospital I started to go to a wonderful acupuncturist and after three weeks the headaches actually stopped. Worth a try. Best of luck and strongest sympathy comes your way. Heather

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Thank you

I am booked in for a session at our local Chinese medicine centre. I used to go for Accupuncture for a different issue and it was wonderful so it is great to hear it has the potential to help with this as well.

I think I had immersed my brain in the 'medical profession' rather than looking more broadly at complementary medicine .... I have found the medics that I have seen (discharge from hospital and GP) are quite limited in their understanding and will simply address each presenting issue rather than looking at how they might fit together or what might be underneath it. I am however much more hopeful now after hearing that complementary medicine can offer some potential reliefs

Thank you

Ka

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Thank you everyone for your replies it is comforting to here so many have been through this journey. It is great to know there will be sn end to this horrible infection.

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Bloody He'll you have just described me in a nut shell.

I had VM 3 years ago

The only thing I get on top of all you have said is sometimes my memory is poor I to am a lecturer and trainer and now at times find myself having to use my own presentations to prompt me during a session even though I created them and used to know them inside out.

Some days are worse than others it can feel like I'm 102 years old and it's the day after a marathon joints and mussels hurt and a head ache.

God knows what to do about it I've been to the doctors but he dosent get it so I just put up with it.

Thanks so much for sharing your experiences it helps me realize it's not all in my imagination.

Herbe

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How wonderful to hear from you Herbe

It is quite disconcerting standing in front of so many people wondering if it is a 'brain and memory working day' or not

It sometimes scares me to think my mind might just go blank and I will have no idea of what I was meant to be delivering!!!

I have however found that being open and honest with students and explaining that this is a part of my 'condition / recovery ' and they made get have to sometimes bear with me and help me out if they can has been useful.

It has been wonderful to witness how amazing, helpful and indeed understanding people can be once they know. And being open from the start seems to reduce my anxiety and then reduces the potential for the 'brain fog / freeze'

It is so lovely to speak with people who have experienced the same things and can relate to some of the symptoms ....it has helped me (I don't think I have ever met an adult who has had meningitis before this site) as whilst it doesn't perhaps answer the 'how long for / how many more things' questions that go in for me, it does help me from fearing I am going insane!

Thank you for responding and it was lovely to hear from you

Ka

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Have a neurologist do some tests for a pinched nerve in your neck. I have some of the same issues (although not all of them) and was recently found to have a pinched nerve. Physical therapy helped alot when I was able to afford it, there are home exercises that can be performed, and worse case scenario is surgery, which I am currently doing my best to avoid. I would also suggest a sleep study test to be done to see if you may have Sleep Apnea, leading to many of the symptoms you described. I don't know if these are related to VM or not, but I do have these problems concurrent with VM and have been using a cpap for Sleep Apnea for 7 years now. It's given me a new lease on life. Weight gain (among other things) can cause sleep apnea. At the very least the tests may be able to rule them out, and if not, treatment is available with immediate benefits. Good luck!

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