Confused. Intracranial hypertension or something else?

[AngieP5]

I've been experiencing non stop headaches for almost a year now.  It all started when I got new glasses and wore them all day one day.  My neurologist feels this is a coincidence.  Needless to say I went back to my old glasses and still have the headaches. I went to TMJ specialist - ruled out.  I then went to a chiropractor - no relief.  Finally had a spinal tap and my CSF pressure was 28 so I was diagnosed with intracranial hypertension.  I'm not convinvced i have IHH and niether is my PCP.  My headaches are worse when standing and I get relief laying down which is uncommon with IHH.  I also responded well to prednisone which is not the norm.  I also don't have any paplidema which is common with IHH patients.  I've tried diuretics (diamox) and don't get much relief. no pain killers help either.  Right now my pain is mostly right sided near my temple/ear.  My ear feels clogged most of the time. My scalp is tender to touch and neck sore.  I feel as though my glands may be swollen.  I've had MRI MRV along with blood work and everything comes back normal.  I don't know what to do. I do have an appt in November for a second opinion from a neurologist at a teaching hosptial.  
I've always thought maybe I have temporal arteritis but my PCP tells me I"m too young.
I'm wondering now if Botox would help with my muscular headache pain?
Should I see a ENT doc or an endocrinologist?  I'm at a loss.  
I'm beginning to think my doctors think I"m a hypochondriac.  I know that what I'm experiencing is not normal. I don't feeel right.  This is the first time I've ever really been sick with anything and its gone on for almost a year.  I need answers.
I want my life back - I have  a wonderful husband, a 4 year old daughter who need me.  I also work full time and have a job I love.
Any help, suggestions, guidance is apprecited.
Thanks in advance.  

[stacy76]

Your symptoms and situation sounds alot like mine.  I have been dealing with it since october. I thought it was muscular went to a manual PT, rehab doctor (who told me I needed a vacation) my PCP, and now I have been seeing a neurologist.  I am on my 5th medication without relief.  But he still seems to think it is still a migraine.  I have had a neg CT and MRI of my neck the only thing they noted in the MRI was my cerebellum hangs "low" but shouldn't cause any pain.  Unlike yours my pain increases when I lay down or even sit in one spot.  I have been thinking about seeing a cardiologist to see if it could be anything with my blood pressure (which runs low)  My back of my head and right side always have some sort of pain but it definately increases when I bend over, look down, squat ect.  I sometime even get to see spots with position changes.  But the neurologist does not seem concerned with that.  Have you ever had a heart workup?  I understand your frustration, I have had tons of blood work the CT, and cervical mri and my doctor just keeps telling me everything is normal.  It is hard to explain how I feel to my nerurologist because I think he is starting to think I am crazy.  

[AngieP5]

I;ve never been depressed before but I guess this chronic headache is getting me down.  I do hear my heartbeat in my ear occassionally but no stuffy nose.  What is Tyrosin? and what is norepinephrine?  Sorry.  Did your PCP order this med for you or a neurologist?  How long had you had your headaches for? Are they now gone?
Thanks in advance. Glad you're feeling better.
Angie

[suzanna1]

i feel the same way.. a constant headache on the right side of my head.. clogged ear,, and do you have a stuffy nose? and can you hear your heartbeat in your ear?  mine started when i became depressed... so i tried tyrosine and it seems like its helping.. i think mine was because a drop in norepinephrine.. because ive never had headaches before that...  so if you feel depressed you may want to look into it.. and when my headache goes away which is maybe once a month for like 10 min.. my ear uncloged   so now i feel much better with the tyrosine..

[AngieP5]

Thanks for your response.
Yes, I did have a brain MRI with and without contrast.  They tell me all is normal. I haven't heard of syringomyelia I will google it.
Thanks!

[selmaS]

HI, DId u have a brain MRI w/wo contrast?

Sometimes IHH can be the result of another condition like syringomyelia or chairi malformation.

Please have someone review ur MRI's and if u didn't have one of the brain it may help narrow down what is going on.

Good luck
"selma"