I'm 5 weeks into viral meningitis recovery, (not feeling much improvement yet, just baby steps). My legs get very painful and heavy feeling if I stand up for more than 30 seconds, and they feel shaky and give way if I walk so I'm in a wheelchair or use a walking aid... and it's the same with my arms if I try to do anything strenuous like opening bottle tops or lifting something or playing piano my hands shake and muscles hurt. I also get pain in my shoulder and knee and elbow joints and still get a LOT of neck pain. I take 10mg dose of Amitriptyline after diagnosing me with post-concussion syndrome along with co-codamol and diclofenac for pain. I get very dizzy on standing and the more tired I am the worse that is, I find too much noise and visual stimulation exhausts me most.
My post is to ask if anyone else has had episodes where their body just kind of shuts down? I have had a few of these now and it's really scary. It begins with a weird feeling like dread in my stomach, I feel strange, like I know something isn't right, my head gets fuzzy, so I usually sit or lay down, then I will flop and feel like my body has gone to sleep.. I can't open my eyes, lift my hands, speak or anything... but it's scary because it's not like fainting, because I am still completely aware of what's around me and can still hear, I hear my husband asking me to wake up but I can't make my body move. I even dribbled the other night and could feel it down my cheek but I couldn't move. My breathing gets very heavy and can be slow then fast and after a few minutes I can speak again and open my eyes but it's hard to focus my eyes sometimes. Movements are then VERY slow and it takes all my effort. my speech feels funny after like I get my words mumbled and jumbled a little. also afterwards, my head on the right side at the back is really painful and tingly and just feels so weird.
Please help if you have had anything similar? Thanks for reading, Megan xx
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meganreece
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Am very sorry to hear you are recovering from viral meningitis. With all the problems you are describing I would advise you to get checked out by a doctor. We are not medically trained on here, just others like you who have had meningitis. You are on quite a combination of medication and there is a possibility that it is side effects from what you are taking. I am wondering if you started them all in hospital so were established on them before discharge or whether some have been added since. Amitriptyline, cocodamol and diclofenac is a very powerful combination to be on! The amitriptyline can cause your blood pressure to drop which would worsen when you stand up. Please seek advice about your medications as sometimes some of the analgesics can actually cause headaches. There is always the possibility of fits which could be complex partial seizures rather than full blown clonic tonic epilepsy but again you would need to get that checked out by seeing your GP.
I must stress that I don't take this combination of meds every day, I only take the painkillers when I really need them, so probably every other day or every couple of days at most now, and it's usually one or the other. The Amitriptyline I only started four days ago so perhaps that's making it worse, but I had definitely had these episodes before I started it.
I know seeing the doctor is a must, so I will definitely take your advice and go speak to my GP, but as it was the weekend and they're closed I thought posting on here might put my mind at rest and I have seen there is someone else suffering the exact same type of thing which is good to know, not that I want to see others are going through it!
I have what is called Mollaret's Meningitis (recurring form of viral meningitis) along with traumatic brain injury, PTSD, Depression, and anxiety.
I have recently been experiencing exactly what you are explaining. We are not sure what is causing them, so we are doing a bunch of testing.
I have had an MRI, that came back clear, an EEG that showed abnormal and looked like brain damage to the left temporal lobe, and just finished a 72 hour ambulatory EEG on Thursday. I should have the results in a week.
My neurologist thinks either sleep paralysis ( less likely), or possible PNES (Psychogenic Nonepileptic seizures).
Once I started to realize they were going to happen and stopped fighting to try to move, I just relax and when they are over my eyes just open again and I can move. They still scare the crap out of me and it is really hard not knowing what is causing them. Stress seems to be a factor.
If we figure out what it is I would be willing to share that with you. I would see a neurologist though and let them know what is happening. Good luck.
I'm so sorry to read you have Mollaret's and the other things, it must be horrendous at times.
I so appreciate your kind offer of letting me know how you get on with the tests though, I'd be very grateful if you would keep in touch and it's just great to know I'm not mad or alone in these episodes. I didn't worry at first when it happened, but now it's getting to happen more and more but I quickly learned, as you said, to relax and just wait, because it can make you feel panicky but if we start panicking it surely makes it scarier for us and those around us. It happens for me when I exert myself too much, like having a bath when I know I am physically and mentally exhausted already- it's happened twice after a bath. I have asked my husband to put his hand in mine when it happens now, as I can manage to twitch my fingers once for yes and twice for no.
They started getting more severe and more frequent about a month ago. After realizing what it was, I was able to think back and I think I have been having them, infrequently and more mildly, for years. But in the past month, I have been having them once or twice a day for a few days, then I might not have one for a few days, then they will happen again. It has been recommended not to take a bath to me so it doesn't happen while I am in the bath. It has become so frequent, that my wife just waits until it is over and then checks on me. I have even had it happen standing up and sitting up. When that happens my wife comes and stands with me so I don't fall.
Hi I've just replied to you on the mollarets Meninigitus FB page! Ive been having these seizures since May 15 and I had VM Jan 15! Mine are becoming more frequent 5 in last 2 months I literally collapse! Anything u find out please let me know also, I've lost all hope as neurologists and GPs have no idea - just keep shrugging!! 😢😢
I will definitely share what I find. My fear is they won't see anything on the EEG I just had, which puts us back in the unknown. My hospital, and neurologist, are part of the Mayo Clinic Network, so if I need to I will ask for a consult through them. Thanks for sharing!
Hello, sorry about ur meningitis I had it 4 years ago, I started feeling my improvement after 2 years, I was feeling as you, I thought I would die. Still having some issues but after I had what else I can ask, Megan just have patience, don't rush, everything with ur own help is going to be right, try to eat healthy, do some stretch as exercises, good luck.
Thank you, I'm sorry to hear of what you went through. Patience is something I had very little of when it came to my body when this began, but I am learning to be thankful to my brain for all its doing to recover now and to be kinder to myself. I will definitely try to eat better as lots of people have said that helped them. Thanks for your advice xxx
Hello Megan, how r u? I remember when I was bad I was walking 2-3 hrs a day to get tired and sleep, but even so I was not getting tired, I even felt my legs I was dragging my legs, life is hard, we need a lot spirit to face it. I hope u get better soon.
Hi Megan, I Am having the exact same seizures and have been for over a year! I've been passed from pillar to post but so glad to hear of someone is experiencing the same as its so scary and I've found no one until recently with anything similar. I had VM in Jan 15 and collapsed in May 15 last year my collapses start with me feeling unwell sometimes headaches shooting pains photosensitivity then everything goes weak and I collapse my body literally shuts down, I can't open my eyes or move anything but I can hear - exactaly what u describe! I have been taken to hospital twice after these but they can't help I just have to wait till my energy comes back - I usually sleep it off, it can take days or weeks to get over one! At first it was taking 7hrs for me to beable to walk after an episode / echo ( meningitis now call them echos) an hour to even open my eyes! But in the last 2 months I have had 5 and they are only taking me 2 hours to come round! I've had MRI, EEG and CT scans, took lots of different meds and seen 2 different neurologists and no one seems to know - I suspected it could be mollarets meningitis as GKnome has above but my neuroligist dismissed it in fact they dismissed everything even the fact you can get Meninigitus more than once which u can! I've now been asked to be referred to chronic fatigue syndrome service to see if that's what I've got?? It's changed my life, I'm off sick at work again as I can't go in as I have good days and bad days! Bad days I can't walk from one side of my kitchen to the other coz everything aches and I'm so exhausted! Please anything you find out please share and I will with you! There aren't many of us that have this - it's so scary but we can and do get thru it! Now we can get thru it together. My story is on the menigitus website Tracys story I'll try to post it here for you ..meningitisnow.org/support-u...
I've posted on here before as well if you want to read !
So, from all the testing and research I have done, it looks like Psychogenic Non-Epileptic Seizures (PNES) is probably the cause. Getting my EEG results tomorrow or Monday that should help narrow it down, but thought I would put this out there. PNES is regarded by most medical professionals to be a made up or an "all in your head" type of issue, although it is not. Here are some links to information regarding this I was able to find.
Officially Functional Neurological symptom Disorder (FND) w/mixed symptoms. The newest knowledge is that the brain isn't sending and receiving signals properly.
I have had the same symptoms since October last year on my travels to USA. 8 months ago was my first seizure like experience.
Feels like everything in my body weekening, slowing down, then I get a weird sensation in my tummy. Then I can't talk or move for a few seconds, like oxygen not getting to my brain. I am conscious but feel like I am going to black out! Takes it out of me afterwords. I just want to sleep it off.
Tiredness, stress, talking to much, brings it on. I even thought digesting food but now I am wondering if it's not just because I am standing up after eating and it's actually movement bringing it on after sitting for a while.
In between the episodes I have migraines for long periods of time. Tingling up and down my legs and arms. What feels like ice on my skin and that sensation of being scratched to much on the palm of your hand and under your feet. Sweet feet, no fevers ever! Internally hot but feet and hands cold.
I have spent a fortune on extensive tests. 5 MRI, lumber, CT scan, X-rays every single blood test known to man, ECG, EEG a few times. Hospitalized 3 times ER 7 times.
First clinical diagnosis was ciguatera (a tropical food born illness) was told to go home and ride out the toxin for + _ 9months! They way I felt, I knew there was something terrible wrong and wasn't going to rely on a clinical diagnosis. I wanted hard evidence.
When I got home to SA. I saw everyone from infectious disease Dr, neurologist, physician, gynecologist, every specialist and natural path known to man. Due to my persisting to get to the bottom of it. And no results coming up, I have been told I have stress! Conversion disorder! So I went to a therapist, massages twice a week and rakki, TRE, EDMR treatment you name it. Therapist cleared me from conversion disorder said I never had it. I only entertained the ideA because I have two little kids and can't handle them seeing me like this and want to get better for them to. I have missed out 8 months of there lives! I am determined to get my life back from what ever illness has robbed me of it!
After another emergency visit I asked to be tested for many local parasites, Finally I got diagnosed in February with Bilharzia
I can count on my hand how many seziers I have had over these 8months. But it's the energy in between them that has deteriorated over time and I have just got Weaker and weaker.
It's now May and after been treated two months later, I am back in hospital in CCU with what feels like my death bed. I have had a really tough few weeks of nearly blacking out and honestly my heart feels like it can't take any more seizer like episodes. Infact I have had one build up in hospital that they were able to capture and my very normal low blood of 50/60 shot up to 160
They now saying it could be a hole in the heart? A normal ECG would not pick it up. You would have to check with a camera.
So wish me luck! I'll keep you all posted
P.s excuse all typo, on my phone and this predictive text drives me mad
I dont hav menagitis and dont take any meds except tylenol when needed but I do know exactly what u going thru cuz I hav same thing, not as often as used to but still here and there is scarey none the less..u feel trapped in ur body that' no matter how hard u tell to move it just wont like the connection gor lost and u lightly fear wat if it gets worse and u cant breath and even tho inside ur mind ur screaming and using all ur might to make a sound a movement nothing, till maybe u move the tip of ur pinky and slowly gain it all back like it never happened. And that feeling ur vody gunna drop like all ur blood magically vanished and u all sudden feel light like when an elevator stops at the bottom floor like a woosh and then u drop. That shaking and everything, yes I know it all and I been told I'm hypoglycemic, vertigo, bad blood circulation due to tiny veins, etc etc and no meds can help all u can do it try to make sure u sleep good, eat good amount of protein and dont get up too fast or if feel like ur legs dont hav the strength to even stand then dont. Nobody ever really believes me when this stuff happens..and now they also found a brain anurism on left side so who knows but anything could be the cause but I'm just glad I'm not the only one who has these happen and understands what its like
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Thanks for your help. I hope you are well xx
Hiding, guilt, frustration! ☹️
Desperate for help!!!
