I just thought I'd give an update, and this might be of interest to
Amy, they now suspect I might have a cerebral spinal fluid leak which
allows me to keep getting sick. I'm going to an Ear,Nose, Throat doc
on Monday who will hopefully send a scope up my nose and start looking
around..and yes, I do have a runny nose that hasn't gone away in a
LONG time.. ick!






--- In PostmeningitisHeadache@yahoogroups.com, "amyj3455"
<amyj3455@...> wrote:
>
> Hi everyone,
>
> I was diagnosed with chronic viral meningitis last April of 07, and
> battled it for over six months. I had every lab imaginable done, and
> they never could figure out what caused it. I had 3 lumbar punctures
> done- and I had even worse headaches after the first one.
>
> I've suffered from persistent headaches ever since. They are always
> there, just the severity changes. There are no patterns in them.
> I've gone in twice for different DHE infusion treatments with no
> results. I've had 5 MRI's done, and everything has come back normal.
> I've also had nerve blocks in the base of the head. Nothing has
worked.
>
> I'm fortunate to have a neurologist that only specializes in
> headaches-28 years under his belt. His office also runs the Headache
> Institute. It's only 1 of 5 in the country I'm told.
>
> I've been on all the meds- heart meds, migraine meds,
> anti-convulsants, anti-depressants, muscle relaxants, steroids- you
> name it, I've probably been on it. So far nothing has responded and
> the doctor is always making new cocktails for me when I see him. I've
> also done the headache diet and took out trigger foods that are common
> with people who suffer from migraines.
>
> There is some advise I can share with you. Do not take pain meds
> (narcotics) for your headaches. While it offers short term relief,
> they will lead to rebound headaches. Also, stay away from
> Acetaminophen (Tylenol). It is also proven to lead to rebound
> headaches. You should take naproxen or IBU.
>
> When it comes to post-meningitis, there is nothing by the book. Some
> meds will work for some, but not for others. My doctor told me there
> is no science in treating headaches, as all the meds that seem to help
> with headaches are pretty much discovered accidentally.
>
> He also told me that I could have this the rest of my life, or I may
> wake up one day and it will be gone. I'm hoping for it to be gone,
> and soon. This has taken over my entire life. I can no longer work,
> and I am moody and depressed all the time. My family is very
> supportive, but it is still hard on them, my young daughter
> especially. I've also had confusion, balance issues, and joint
> problems, all which can be side effects of meningitis.
>
> For anyone with chronic meningitis, find a neurologist that has some
> knowledge of headache disorders. And be taken seriously. My family
> doctor kept sending me home telling me to rid some stress and stop
> working so much. I didn't have the common symptoms of meningitis, so
> he didn't do much about it. Once I saw the neurologist, he began the
> LP and all the labs to find out what was wrong.
>
> Amy
>
>
>
> --- In PostmeningitisHeadache@yahoogroups.com, "fionagreenlees"
> <fionagreenlees@> wrote:
> >
> > Hiya,
> > I had viral meningitis 11 months ago now, and I still suffer crippling
> > headaches if I do not take Imipramine (10mg) every day. It does work
> > really well for me, if taken reguarly anyway.
> > Hope you find something that works for you and feel better soon.
> > Fi
> >
>