My 18 year old daughter has had debilitating daily 24/7 chronic headaches for 5 years now. We've taken her to over 50 doctors and alternative medical practices here in the Seattle area as well as the Mayo Clinic in Minn. Her pain has never changed, never moved - always across her forehead, in her temples and behind her eyes. Reading and concentrating make it worse. Sometimes it's worse from out of the blue. She awakens with a pain level of 7 and sometimes up to a 9. It stays about and 8 or 9 all day. She takes Percocet when it's too horrible to tolerate anymore. The Percocet drops the pain down to maybe a 6 or 7.
Here'a a synopsis of where we've taken her - all to no relief or answers:
anesthesiologist and acupuncturist, Children’s Hospital Seattle; Chiari Malformation Specialist, Children’s Hospital Seattle; UW Headache Center; Evergreen Pain Center sympathetic stellate block, occipital block, sphenopalatine ganglion block; Neurologist, Overlake Neurology; Mayo Clinic, acoustic neuroma removal on right; Acoustic Neuroma Specialist, Mayo Clinic; Swedish Hospital – did Botox in forehead, neck and shoulders area, also did occipital block; Children’s Hospital, Audiology; Behavioral Medicine Associates; Spine & Sports Rehab.; Chiropractor; NW Asthma & Allergy Center; Acupuncturist; Audiologist; Gynecological Endocrinologist; Neurology, Children’s Hospital, Seattle; Neurologist, Swedish; UW Oral Medicine; Pain Specialist, dry needling University of Washington Medical Cente; massage therapist; Endocrinology, Poly Clinic; Rheumatology; Nutritionist; MRA; MRI’s with and without contrast; Hearing Clinic; Neuropthomologist, Swedish.
I know this sounds frustrating and extremely hard for you and your daughter.
Has Alyssa underwent a complete ophthalmologic consult?
The only thing I can suggest now is you see a clinical psychologist or psychiatrist to help you both go through this. I am sure you have been talking to your daughter . Are there any cause of worries or anxieties that could have precipitated the condition?
Hello I have been in sounds like the same pain as your daughter for over 20 years. I have a blockage in the boney tissue in the lower part of my brain. So have had quite a lot of shunts placed in my ventricules 8 years ago I had to have the shunt placed in my heart ever since I have felt more pain than anyone person should. Most of the meds the doctors have given to me haven't helped at all. I'm sure that she has had cat scans to look for abnormalities in her brain. If not I would do that. And also KU med in Kansas city Kansas has the most brilliant Nero surgeon in the USA.
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