Am I finally on to something?

[dazed2019]

About two years ago I woke up with a headache and a bloody nose. I thought the air was just dry so I got ready for work and ended up almost passing out in my car as I was driving. I’m not 100% sure this incident is at all related BUT immediately after this happened my symptoms started and have continued over these past two years

Constant “spaciness”

Memory issues and inability to concentrate

Leg pain - back leg muscles

Stomach issues

Headaches

Random sharp head pains

Sudden rushes of adrenaline / irritability

Break out/rash around jaw line neck

Periods of intense fatigue

Mild panick attacks / anxiety

Occasional Increased / irregular heart beats / fluttering

Sensitivity to light and sound

Chronic yeast infections

Pale - (when attacks are coming on I lose color in my face)

I have gone to numerous drs- PCP, neurologist, psychiatrist (it’s all in my head), cardiac, gastrointestinal doc, and NP. I’ve had an MRI, tests on my heart, EEG, and lots of labs.

Last year my NP said I had reactivated Epstein Bar Virus. Of course PCP said it was old infection. I’ve continued to struggle with this mysterious illness pushing through everyday life with no answers BUT last week I was diagnosed with HSV. I’ve been doing some research and found Mollarets Meningitis.

While I don’t have every single symptom - this sounds so close to what I’ve been living with. I’m not sure how to approach this as I don’t have the fevers that seems to come with it and I know many doctors don’t even know about Mollarets.

I just wanted to see if I could find some insight here. Also curious if anyone has had similar experience with nose bleeds in the onset of this - or chronic yeast.

Thank you in advance and best wishes to all.

[forbessr]

Yes you are on the right track! No nose bleeds, but allot of the same symptoms that you have had..and yes found out at the end of last year as well...after a year of repeatly going to the doctors office and hospital after having vm...sorry to welcome you to our club

[dazed2019 in reply to forbessr]

Thank you for your reply. It’s a little disheartening to think I could go through a lumbar puncture and even if it’s positive there is no real treatment.

Are there any other forums out there like this?

[forbessr in reply to dazed2019]

Best forums out there for you are hidden fb forums that you have to be invited to..if you go on honeycomb herpes website and then search meningitis ..you might get lucky and hook up with someone who can get you onto the fb forum.

[dazed2019 in reply to forbessr]

Ok thanks so much

[kalirachi]

You are quite right in saying not many doctors know about Mollaret's. Very few of them know anything at all about meningitis or it's after effects. It doesn't take long after explaining your symptoms to them for their eyes to glaze over, start shifting their position and then start looking very bored and uncomfortable before announcing what we're all use to hearing that it's a psychological problem. They then reach for the prescription pad and start prescribing the usual range of psychotropic drugs. The more adventurous and creative will suggest CBT, cognitive behavioural therapy, anything basically to get you out of their surgery having formed the opinion that you are some sort of hypo neurotic hypochondriac. I took the trouble of going to see this country's leading expert in these sort of problems who is a professor of neuro otology and an eminent neurologist and received the same response I'd had from numerous other people in this field. Thank goodness for this site where we can communicate with other sufferers otherwise we really could begin to start doubting ourselves. Good luck anyway in your search for some answers!

[Starry]

I have everything on the list bar nosebleeds and yeast. I was referred to an ME specialist service centre and after exclusionary tests diagnosed with M. E. Which I apparently already had mildly due to EBV glandular fever 20 years ago. I am also getting checked over for POTS due to orthostatic intolerance.

I also got the dismissive psychiatric line from neurology.

Just a thought/possible avenue to explore of course... M. E. can have a very wide range of symptoms. Definitely includes yeast not sure about nosebleeds.

[Panda48]

Reading this post is like reading a list of my own symptoms. I am finally getting proper investigations 28 years after being diagnosed with VM!! My daughter was diagnosed with VM 5 years ago and is having similar symptoms. Your post will be getting shown to my consultant. Thank you for sharing x

[RemainingHopeful]

Woo Hoo! Now we need a treatment....

[Hidden]

Hi.

13 mos. post-BM and 4 mos.post-ME here.

Bloody nose: Are you leaking CSF? I had a constantly runny nose--first clear, then bloody--for about two years. I thought it was just that, I.e., chronic rhinitis, and didn't mention it. Following Sept. hospitalization, oncologist (yeah, I have *that* problem, too) cultured "snot" and determined it was CSF, not mucus. In my case, the CSF is leaking from a brain structure called the sella. The empty sella has been noted on MRI for decades, but only recently has become problematic, I.e., a major contributing factor to meningitis. Recurring mastoiditis has also been implicated.

Yeast: Currently experiencing first yeast infection in >20 years. Finished last treatment of antibiotics for mastoid two weeks ago--unsuccessful; mastoid bone behind ear must be removed to lower meningitis risk--so attributed yeast to that.

I hope you find both answers and relief .

[Dpark]

Check out Recurrent Meningitis Association Support Group on Facebook. You can ask to join and administrator will add you to group. Good luck.

[Hidden in reply to Dpark]

Thank you. I've never experienced anything like this.