viral meningitis

[bekele]

I was diagnosed with Viral Meningitis in2012.It's 2024 soon and i have migrains every day since along with everyday chills.Something is still wrong !!! My Neurologist said my Meninges,the coating around brain takes 15 years to heal,i have 3 more years to go !! I dont't believe that !! They are just guessing.The Doctors know a lot less then they think they know.I see my doctor every year for this.She taps my knees for reflex and pulls on my arms and says your fine !! Are You Kidding ???? She charged my insurance company $800 for the office visit,they paid her company $600.The company is sending me notices for the $200. I told them you greedy bastards can pull that out of my Grave !!!

[Sprout]

Hi there

Sorry no good news for you

If you go to my profile you will see a post I made 11 years ago "My 30 year journey with meningitis"

Since then I have found out I still have scars/damage to the meninges [shows like grains of rice on an MRI] so that is 43 years later, you are wise to be sceptical about the 15 years comment!

I live in a subdued light environment to help control the migraines.

Chances are you already know more about the disease than your medical practitioner, every time I have had to change doctors I have gone through the same routine of having to explain the disease and the ongoing problems.

Wish you all the best on your journey

[IndieRabbit]

Are the annual doctor's appointments necessary? Its extremely shit but some meningitis after affects are permanent but shouldn't get worse. It just seems like your going to these appointments with no real cause.

I'm not aware of any treatment that can 'fix' an acquired brain injury like this, otherwise you'd have been given treatment over the last 12 years and you would still be gradually improving. I think all treatments for after affects are simply there to help you better manage your condition. I don't know what they can do for migraines apart from pain killers and avoiding your triggers.

If it's going to magically get better after 15 years then it will do it regardless of your appointments.

Obviously after 12 years you know your condition better than anyone else and I don't suffer from migraines so I won't give any advice on that side of things other than do what you can to look after yourself and brain, physically and spiritually.

[HeMMeR31]

My wife had shingles in July 2013 which affected her meninges . Drs all assumed it was migraines even though she has a host of related symptoms. Tinnitus, watery eyes, photophobia, constant pain behind the eyes, “tightness “, cognitive fogginess, problems with word finding, memory issues, etc.

Luckily I am a registered nurse and was able to advocated for her and help her transition to a disability pension. This is important as it takes a lot of pressure off and allowed her to have proper rest.

She now has a great quality of life (we travel a lot) but rest is still very important. She gets Botox injections (31) every few weeks which is mostly covered. She uses gabapentin and toperimate for nerve pain and rotates her PRNs weekly between Tylenol 3’s and Tramadol. She requires a few a day.

As others note, suffers and their families know more about this syndrome than the professionals.

[bekele in reply to HeMMeR31]

Thank You ,I've been on all those medications,nothing helped.Motrin and a ice pack helps.I take 8-10 motrin a day seems like it helps a little,but i know it's not good for my insides.They have come out with a new migraine mdeication,2 Companies.I going to ask my doctor to prescribe them. Thank you for answering my question !!

[Bellesmom12]

I so understand your frustration. I am four years in and I have come to the conclusion there is nothing the medical profession can do about our illness. And they know very little. Unless you have had this you don’t know. I have just stopped mentioning it. I have just learned to adapt and pace myself. Everyone is different and lingering symptoms differ greatly. Mine are numbness, tingling and brain fog. I just fake it most days. I think it is dependent on what part of your brain was damaged. You are not alone and you are not crazy. That is my message to everyone who has had it.