Undiagonsed - sick for 9 weeks

[lizsmith290]

I've been seriously unwell for 9 weeks now. severe headaches (and I have HIGH pain threshold)_, feeling of drunk, unwell feeling everyday, dizzyness, nausea, short term memory loss, tingling sensation, mad fatigue (unable to do most basic things, and normally im very into excersize), and stiff neck.

over the 9 weeks the symptoms have ebbed and flowed. Certainly now its primarily fatigue and blinding headache. Bloods normal. Lyme normal. CSF normal. MRI normal. The scary part is I am starting to normalise and just get used to this. As IF its regular!?

Neurologist thinks maybe one of the many meningitis types viruses which has escaped tests. but is this likely? what is the duration I can expect? Going mad not getting better or being able to function normally! (prior to this a very healthy person bar one episode of glandular fever at uni). Trying acupuncture now to improve ability to fight virus.

ANY advice or experiences welcome.!

[ignoreit]

I had meningococcal septicemia with DIC and my symptoms were nothing like yours. I was 33 yrs old. After about 4 hours of increasing pain, I called for an ambulance and I was SCREAMING from the pain in my legs. I tried to get out of bed to open the door for the ambulance and fell to the floor. I remember riding in the ambulance and being asked questions in the ER. The doctors thought I had taken a drug overdose. (I had taken NOTHING whatsoever.) I passed out in the ER and awakened 10 days later in ICU. After about 4 weeks I could sit in a chair (with a lot of help by the hospital staff) for about 15 minutes. The extreme leg pain lasted for about 6 months...but gradually decreased. I still have foot pain...and it's been 40 years. But aside from my constant but now tolerable foot pain, the only other after-effect I have is a daily headache which I can control with Excedrin Extra Strength.

[lizsmith290 in reply to ignoreit]

So sorry to hear this. I hope it continues to improve.

[Jonad724]

This could be viral meningitis but I am stunned your neurologist has said it might be meningitis and then not sent you for a lumbar puncture. Any clinician in their right mind wouldn't wait if they suspected meningitis as although VM is often seen as 'less serious' it can still kill if, I know it nearly got me, it was only my aerobic fitness that saved me. I'd go to the ED and get checked out and get a lumbar puncture as meningitis is always a serious cause for concern. Good luck

[lizsmith290 in reply to Jonad724]

Thanks. Sorry I meant by CSF (Cerebrospinal fluid) was normal- that was the lumbar. Could it still be VM? I feel horrific.

[Jonad724 in reply to lizsmith290]

Sorry, missed that! Yes it could still be VM if the lumbar puncture was undertaken some time after the initial attack, a brain scan would confirm if there's swelling in the meninges though. If it is VM there is light at the end of the tunnel you won't always feel like this.

[lizsmith290 in reply to Jonad724]

Thank you. Feel like im losing my mind with 'clear tests'- a serious test of sanity!

[Hidden]

What I think the neurologist may be saying is this could be a virus of some sort showing itself as headaches etc as I suffered similar not too long ago and was told it was a virus. However prior to that I had actual meningitis and, similar to what mentioned by ignore it, I just KNEW something was seriously wrong. My headache became excruciating within just a few hours in pain I've never experienced before or after, I lost complete hearing, I lost feeling in both legs up to my thighs and my fingers, and I collapsed and did not wake for 3 days. Id like to say that it is unlikely as you have been suffering for 9 weeks and you are able to normalise as the pain is most stories I here come on in just hours and it is impossible to normalise. All results have come back clear. If you do doubt though then get to hospital for a lumbar puncture. Get well soon x

[lizsmith290 in reply to Hidden]

Thanks. I suspect this too as it has been 9 weeks, but although weeks 5 and 6 were the worst, I feel horrendously unwell everyday with blinding pain and tingly feeling over face and neck. Its quite bizarre and does not feel like a regular virus for a 26 yr old! That said the Neurologist thinks it could be a neuro-virus of sorts. apparently there are many?

[kelpie25]

You're having a hard time, but stick with it, just pace yourself. We're not medics here, but if the CSF was clear it could be by the time the lumbar puncture was done, you were recovering. They did my LP and said the CSF looked clear. After 24/30 hours the lab reported there were cells present but it was only after PCR (essentially, in lay terms, a wsy of increasing the number of cells) and another 48/54 hours the identified the virus. Nearly 15 months on headache is a resl problem and fatigue bad, although that was present from other medical complaints before. Talk to Meningitis Now. Hope you're improving a little each dsy.

[lizsmith290 in reply to kelpie25]

Thanks - this is helpful. Sorry to hear you've had it so long! So the LP was done after 7weeks. In that duration its possible it wouldnt be picked up? and CSF show normal?

[Bsneed81]

You said your CSF was normal ...so they did a Lumbar puncture! But was it initially when you got sick or weeks after? Because that can show normal weeks later after Viral meningitis. According to my neurologist viral meningitis can effect everyone differently. Depending on the level of infection. I got sick May 20th. They initially thought I had a stroke I was paralyzed on half my body but in excruciating pain. They did all kinds of tests. They kept saying stroke because they were seeing something on a CT scan so I was transferred to another hospital. I had an MRI and actually found out completely unrelated to what was going on I have a small brain aneurysm. So they finally told me they needed to do a lumbar picture and that's when I found out I had meningitis. I am just starting to feel better and get strength back but headaches at times can be horrible and I have a constant pressure in my head. I have horrible ear aches, memory loss, confusion and my ears ring like crazy at times. It seems like a never ending battle! I want my normal life back!! I hope you feel better soon! I was going to try a natural approach and try black seed oil and natural honey. To help with my neurological issues. I am currently taking topomax and gabapentin for my headaches. Black seed oil is supposed to help with that. I just ordered it. If it does work, I'll let you know! Good luck!

[lizsmith290 in reply to Bsneed81]

It was at week 7 they did lumbar. Im so sorry your experience sounds way worse! But yes, I am starting to lose my mind and desperately want normality back. Is there any resource showing how it can affect anyone differently? I swear I can actually feel the lining in my head infected. It feels like something alien in my brain!!

[Bsneed81 in reply to lizsmith290]

When My neurologist was explaining to me how it effects everyone differently he brought up like blood cell counts. When they did my lumbar puncture it came back abnormal, my WBC's were in the 600's and my CRP was over 300, the average range is less than 3 he said it's like I'm recovering from a brain injury. So I imagine someone with lower levels would recover quicker and someone with higher levels would be worse and take longer to recover. Resources are very limited I've found with meningitis...Meningitis is the hardest illness to get accurate information on. The Drs in my town seem to know nothing. I travel 2 hours to Chicago Il to see specialist who seem to help me a lot more! I am hoping to go back to work next month. But am very nervous. Today I was down all day, as I was when I was very sick. Unable to even function. I'm a single parent raising 2 children. I need to get over this!

Caffeine I found helps a bit, I really don't drink it a lot but when I'm really struggling I'll drink an ice coffee and it'll help some.

[lizsmith290]

Update on this - I have tried acupuncture for a month and if anything become more severe in symptoms. Blinding headache, fatigue, feeling about to collapse, memory loss, dizzyness, pins and needles. The list goes on.

Anyway- saw my consultant today who said he suspects it is chronic migranes- due to the long list of neurological symptoms. However said chronic migranes is not really a very good term because its not like a 'normal' migrane. Trying amitripeline for a few months- but its a tough one because I am physically completely dead to the world and clearly v.unwell but it appears such a 'fluffy' label!

Has anyone experience in this or know any good resources?

[AntMan]

Dude I have the same symptoms u describe threes weeks out of ? Vial infuenze which progressed into ? Meningitis

I say ? As my loving wife is an emergency DR and offered me a needle in my back which she said would do nothing but prove what we suspect and may have LO side effects too long after infection etc

NO thanks to the LP

Thought I was going mad until I sour your post same stuff weird cold tingling shit on my face arms and shoulders with feeling of doom nasty

Back at work hard but helps the brain by being active bad headaches by end of day and tired

Black seed oil capsules to take and oil for the temples is ment to be good natural remidy

Take care brother glad I am not alone

[SqueakMouse]

Hello there, it's great to meet you😍! But I'm terribly sorry to hear of everything you're going through; the pain and suffering sound bad enough, but the stress of not knowing the exact cause (and therefore, of not receiving any effective treatment) must make things that much worse😢. I've been there (and alas, I've been returned there for the time being😁: You know how it is--same movie, different theater😉). My thoughts and prayers are with you.

I noticed that this thread began almost two weeks ago, so I thought I should check in with you before I post any suggestions, just in case the thread has already closed(?). I'm a newbie to this site, so I don't know how long people return to a thread after it's been started, and/or whether the original poster receives an alert any time they get a response (no matter how long ago they first asked their question)?

I do have similar experiences to yours, and I also share the diagnoses of some other posters who replied to you earlier; therefore, I might have some useful possibilities to offer, if you like(?). Just let me know if you're still interested in further suggestions/shared experiences, and I'd be delighted to send them your way😍

I hope you've had the good fortune to have gained some useful advice/medical help/improvement in your symptoms since you last posted--but if not, hang in there, things WILL get better😄! Best of luck!

[AntMan in reply to SqueakMouse]

Hey mate looking for some help

Three weeks pressure headaches post viral infection no LP

Dizzy and headaches unable to do more exercise than walking or sick next day

No one thinks I am sick as working etc I am hard core lots of life injuries so just suk it up trying black seed oil

Cheers

[lizsmith290 in reply to AntMan]

sounds very similar. you can see my other post where my diagnosis has got to. Im not that convinced.

[Tupshaw in reply to AntMan]

Hello. I know it has been a long time but how long did the pressure headaches last and did you have neck pain?

[lizsmith290 in reply to SqueakMouse]

hi there. All my symptoms are the same if not worse. Neurologist thinks maybe chronic migrane- not the episodic type, but where you are almost in a permenant state of one. its bizarre. Ive never had a headache really before except a hangover. let alone a migrane. but i feel horrendously unwell EVERY day. The drug he is tryign for now is amitripeline - but its side effects are sadly my symptoms. so that is not v heplful. I will try to stick it out for a few weeks.

Any advice VERY welcome.

[Tupshaw in reply to lizsmith290]

Hello. Did you ever find out what was wrong and how long did it take to get over?