Hello, silverfox-ga!
I sympathize with how you must feel....almost despairing at times.
My mother has had severe, chronic headaches (migraine) almost daily
for the past 50+ years. I know how hard it is to deal with chronic
pain, but let’s see if I can offer you some help avenues to explore.
First of all, I went to an article titled “Headaches and
Hydrocephalus.” It offers a thorough overview of the causes of
headaches and suggested treatments. I think it would be a good start
and might give you some good directions to pursue. It would probably
be far more helpful for you to read it in its' entirety than for me to
summarize it. The article can be found at
http://www.ifglobal.org/Backup39/BackUp39/article6.htm
Another article from the Institute for Neurology and Neurosurgery at
Beth Israel Medical Center has an article dealing with hydrocephalus
and chronic headaches. While the primary focus is on children, it also
mentions adults who encounter constant headaches and mentions some
reasons and treatments. One treatment they recommend for children,
when there is absence of shunt malfunction, is treatment with the
anti-migraine drugs. Other, more radical treatments are also
considered for adults. “Chronic Headaches” may be read at
http://nyneurosurgery.org/child/hydrocephalus/headaches.htm
I also went to the Adult Hydrocephalus Discussion Board at
http://www.network54.com/Hide/Forum/8255?it=0 . I followed up some
discussions dealing with shunt pain and chronic pain, and I thought I
would pass a few on to you.
Question:
“I am a 39 year old male had a VP shunt put in after a neck fusion
and 4 brain surgery's. My NS say's he thinks my headaches are
something called daily chronic headache. I have tried the tylonal /
advil / IB profin these don't work they just make me sweat all night
for some reason. They tried me on xanoflex it seems to help and I'm
still takin it. It seems to relieve the tightness on the back of the
neck where the headache starts. My NS tried me on Bextra this didn't
even touch it. Then we tried Midrin still nothing. Now we are trying
bextra and midrin togeather. Tried it last night and it just tore up
my stomach. At first they had me on hydrocoden from the brain
surgery's this made me feel like a lump all day I had no energy. The
Med's are messing with my appitite. I am not eating right. My question
is has anyone found something that works to get rid of the headache
rather then just dull it down. I really think if I could get the
headache's under control I would have a good chance of having some
sort of normal life. I have had a shuntogram and the shunt is
functioning properly. They are telling me it's just a matter of
finding the right combo or the right prescription.”
Answer:
“I had these same problems and finally they put me in the hospital
and gave me DHE treatment. Since then I have been on maxalt and ercaf
if one doesn't knock out the headaches the other does.”
Question:
“I HAVE ADULT ONSET HYDROCEPHALUS AND I HAVE HAD IT FOR ABOUT 3
YEARS. I HAVE HAD 4 OPERATIONS RELATED TOMY HYDROCEPHALUS SINCE 1999
CONSISTING OF SHUNT PLACEMENTS AND REVISIONS. TODAY I HAVE A
FUNCTIONING SHUNT BUT CONTINUE TO HAVE HEADACHES THAT VARY IN
INTENSITY AND ARE AT TIMES DIFFICULT TO TREAT WITH ALL OF MY ASSORTED
MEDICATIONS. mY QUESTION IS? IS THIS COMMON AND ARE THERE ANY OTHER
SOLUTIONS TO CONTROLING THE HEADACHES VERSES THE USE OF MEDS? MY DOC
STATES THE SHUNT IS WORKING AND THAT HE HAS NO ANSWERS FOR ME AS TO
WHY MY HEADACHES CONTINUE?
MY NEXT STEP IS TO SEE A NEUROLOGIST AND TRY TO FIND SOME ANSWERS. HAS
ANYONE ELSE RUN INTO THIS TYPE OF PROBLEM? ANY INFORMATION OR SUPPORT
WOULD BE GREATLY WELCOMED!!!!” THANKS JEFF
Response:
“Hi, I am a 64 year old md. (Medical Doctor). I have hydrocephalus
too, a shunt placed 6 weeks ago, and severe headaches. Is your shunt
programmable? I had severe headaches while the pressure was decreasing
over the first month or so. None over the past week. Maybe your shunt
pressure needs adjustment. Advil migraine was the best rx. I needed a
revision already because the tube in the abdomen recoiled up under my
skin at the edge of my ribs. Reply welcome.” doc wayne
Question:
“I have had four shunt surgeries in the past two years because my
shunt kept on not working. At first the doctor put in a programmable
shunt, which was adjusted three trillion times. It never seemed to
work and I was incapacitated for months. Then he put it a new shunt
that detects the pressure and fixes it. He disconnected the old shunt.
I seem to be doing some better, but my head is still hurting
continuously and sometimes it hurts to where I can't function. What if
these headaches never go away? What if I can never work because of
these? is there anything I can do? Does anyone have info about HUD
housing in North Carolina? I want to move but will only b e able to
move into disabled housing right now.”
Response:
“Try to go to a neurosurgeon soon. Maybe the pressure has dropped
too low. I am a 64 yo md, who had a programmable shunt placed only 6
wks ago. Terrible headaches for 1st month. Better now. Don't give up
on finding the right md to help you.” doc wayne
Some of the common suggestions I gleaned looking through the questions
on this site are that headaches can be a result of shunt blockage or
pressure droppage. Would any of this apply?
Please refer to this page of the board for a discussion line on
chronic pain and hydrocephalus
http://www.network54.com/Hide/Forum/message?forumid=8255&messageid=987792327
Some possible solutions gleaned from the messages were these:
“I have had severe migraines since my last surgery. My dr.
(neurologist not neurosurgeon) put me on a blood thinner, blood
pressure medicine actually. It helped.”
“Ask your doctor about NEURONTIN at HS for pain. I have had a shunt
for over 20 years with revision of distal part only 1998. I have
suffered from pain and have found neurontin to be a blessing.”
“Hi there. I am new to this site and I am finding it quite helpful.
I am 42 years old and have had a shunt since 1882 (age 23) when my
Dandy Walker Cyst was finally diagnosed. I have been shunted since
that time and have had 50 shunt revisions due to malfunctioned shunt
valves and shunt infections. I have been taking Elavil since the age
of 21 for headache pain management. I see that you are taking
Neurontin and I would like to learn more from you as to how it is
helping and working for you. I continue to have chronic headaches and
can no longer work as a nurse due to the almost constant head pain. My
last shunt revision (knock on wood was 11-1994 and I have been working
hard to keep myself surgery free if at all possible. I am looking
forward to hearing from you.”
To be quite honest, others on this site have tried everything and
found no help with their constant headaches. Some say that simply
lying still in a dark room with a cold pack helps. (I’ve certainly
seen my mom do that for 48 years.......it is the only way she can
cope, though I admit, not much of a solution)
Another site I went to is the Question and Answer Page for
Hydrocephalus on Medhelp. Direct access to the page is at
http://www.medhelp.org/HealthTopics/Hydrocephalus.html.
The following question and answer about chronic headaches is quite
interesting and may provide some possible answers:
Subject: 30 y/o with persistent headaches...
Topic Area: Hydrocephalus
Forum: The Neurology and Neurosurgery Forum
Question Posted By: vamedic4 on Monday, October8, 2001
Hello all...new to this forum but let me pose a question. I'm a 30
year old male with a VP shunt, placed in 1976. Have had no problems
with it in all this time (except for some headaches as a teenager, but
they went away). In the past 4 days I have started to have headaches,
and my headaches have gotten so bad I just laid in bed for a whole
day, it seems moving back and forth or side to side makes my head
hurt. I thought I might be dehydrated so I drank water..copious
amounts, to no avail. Motrin helped but not much. I'm wondering if
anyone knows of any problems with shunts as old as mine or can give me
any insight?
Answer Posted By: CCF-Neuro-M.D.-JT on Tuesday, October 09, 2001
(Doctors from the Cleveland Clinic answer these questions)
Your shunt is a definite contender for the cause of your headaches.
You need a shunt series (which is a series of films) to evaluate the
integrity of your shunt to see if it's overdraining or underdraining
and a CT scan to look at the size of your ventricles which will also
help evaluate the job your shunt's doing. If all that is normal, an
MRI of your brain is the next step. Talk to your neurosurgeon who put
the original shunt in. It's possible you may just need an adjustment.
The other consideration is an infection around the shunt especially if
you're having fevers. If it's too hard to get a hold of your surgeon,
then get a neuro consult. Best of luck.
Refer to site at http://www.medhelp.org/forums/neuro/messages/31434a.html
I know you have been back and forth to your neurosurgeon, with
discouraging results. Maybe you can utilize some of the above
information, and possibly try some of the medications that have worked
for others. One thing is very clear after researching this topic for
you......You are definitely not alone with this problem.
I truly hope you can find some relief from your chronic pain. Stay
hopeful!
umiat-ga
Search strategy on Google:
hydrocephalus +chronic pain
hydrochephalus +chronic pain from shunt |
