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amanda1990Participant
is there any way to read the Driscoll Theory part 2 if we don’t have a kindle?
January 22, 2012 at 4:25 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1696amanda1990Participanti have this type of headache and possibly chiari (1 MRI showed 3mm another showed 15mm, so that’s still in debate) I talked to my doctor about increased ICP and trying Diamox. He looked at my eyes (with the light thing) twice and is certain that my optic nerves aren’t swollen and because of that he says it’s highly unlikely that I have intracranial hypertension. Is it still possible to have high ICP without swollen optic nerves?
amanda1990Participantok, I understand!
January 16, 2012 at 2:54 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1681amanda1990ParticipantI’ve had a headache like this everyday for over a year.
amanda1990ParticipantI have EDS and POTS. I take midodrine and florinef for my POTS and they help a lot with pooling, energy, and dizziness. I read that florinef can increase ICP and I’m afraid it’s doing that because my headaches have gotten worse since on it. I also have a questionable case of chiari (3mm herniation.) But, whenever I try to taper off florinef I feel really dizzy and the higher dose (.15mg for me) really does help w/ my dizziness and fatigue. So, I’m conflicted about what to do. Is anyone else on florinef but also have symptoms of increased ICP? also, my pcp is willing to try diamox but he wants to make sure I have high ICP 1st, is there anyway to convince him without an LP?
January 14, 2012 at 4:04 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1671amanda1990Participanti have this too; the back of my head hurts all the time and i have knots and pain down my neck and shoulders. lately ive been waking up in the middle of the night with headaches all the time. my upright brain mri showed a 3mm herniation which the radiologist and my pcp considered normal but i’m hoping to see an expert. I’m going to try to convince my pcp to prescribe diamox and i’m ordering a neck collar on amazon now.
amanda1990Participantmy upright MRI showed the cerebellar tonsils 3mm below the foreman magnum the radiologist said that was within normal limits. I have all the symptoms of chiari and I’m trying to find an expert to look at it but then I’m also concerned because some people with EDS feel worse after chiari surgery.
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