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Chronic Headache/NDPH

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Old 03-16-2013, 07:35 PM   #1
semoore
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Default Chronic Headache/NDPH

Hi all. When I was a freshman in high school (2009) I began to have a chronic headache all day, every day and it hasn't gone away. It is like a squeezing pressure. I have seen many doctors- neurologists, neurosurgeons, dentists etc. The Jefferson Headache Clinic in Philadelphia called it New Daily Persistant Headache, other dr's have just called it chronic daily headache. I was on Fioricet for several years which helped but they made me stop taking it, as it is addictive.

I also get frequent migraines on top of the daily headaches.

I have a Chiari malformation and a syrinx, but because of the nature of my headaches, the doctors say they are unrelated. Also, because I am able to function (I finished college, can work, etc), the doctors say I don't need surgery.

Just wanted to share and see if anyone had any advice. Thanks.
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Old 03-16-2013, 10:45 PM   #2
semoore
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Quote:
Originally Posted by semoore View Post
Hi all. When I was a freshman in high school (2009) I began to have a chronic headache all day, every day and it hasn't gone away. It is like a squeezing pressure. I have seen many doctors- neurologists, neurosurgeons, dentists etc. The Jefferson Headache Clinic in Philadelphia called it New Daily Persistant Headache, other dr's have just called it chronic daily headache. I was on Fioricet for several years which helped but they made me stop taking it, as it is addictive.

I also get frequent migraines on top of the daily headaches.

I have a Chiari malformation and a syrinx, but because of the nature of my headaches, the doctors say they are unrelated. Also, because I am able to function (I finished college, can work, etc), the doctors say I don't need surgery.

Just wanted to share and see if anyone had any advice. Thanks.
Just adding to this, it's been since 2004, not 09, sorry. Also, I have tried Botox and it did not help
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Old 04-09-2013, 10:42 AM   #3
JVerive
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Have your doctors measured your cerebral spinal fluid (CSF) pressure? Elevated CSF pressure is common with Chiari malformations, and can produce persistent pain. If your CSF pressure is too high, you may need a shunt.

Quote:
Originally Posted by semoore View Post
Hi all. When I was a freshman in high school (2009) I began to have a chronic headache all day, every day and it hasn't gone away. It is like a squeezing pressure. I have seen many doctors- neurologists, neurosurgeons, dentists etc. The Jefferson Headache Clinic in Philadelphia called it New Daily Persistant Headache, other dr's have just called it chronic daily headache. I was on Fioricet for several years which helped but they made me stop taking it, as it is addictive.

I also get frequent migraines on top of the daily headaches.

I have a Chiari malformation and a syrinx, but because of the nature of my headaches, the doctors say they are unrelated. Also, because I am able to function (I finished college, can work, etc), the doctors say I don't need surgery.

Just wanted to share and see if anyone had any advice. Thanks.
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Old 08-08-2016, 04:21 PM   #4
rlg700
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Default The Non-Diagnosis that was WRONG

If you have not heard of it, please look up low csf headache or spontaneous csf leak headache. There is an awesome video about it done by a doctor at Stanford, Dr. Ian Carroll called, "The Mystery Headache."

There ARE doctors who will LISTEN. There ARE doctors who will INVESTIGATE. There ARE doctors who care and DO NOT GIVE UP and throw an NDPH diagnosis at you.

There IS hope. I am living proof. After 15 mos. of NDPH bs and feeling so hopeless, I finally found the right neuro, was sent to Duke University Hospital, and am healed! There are so many like me. Don't give up hope, and don't stop searching.

LOVE and HOPE to you.

Robin
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"Thanks for this!" says:
PamelaJune (08-09-2016)
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