Desperately searching for any help/advice at this point, for anyone that can relate.. here's my current situation..
I'm 25, female, and have been getting the same type of headache for 10+ years now. 95% of the time its on left side only, 5% of the time is can be right side, right side pain is never nearly as intense as the right side.
The pain is always in the sinus area below the eye (not behind the eye), and one of the most important facts that always seem to make the doctors give me a blank face like i'm talking gibberish, is they get so much worse when lying down. Just slightly going horizontal increases the pain, and going fully horizontal can increase the pain by 30% or more within minutes. Even if I do fall asleep from complete exhaustion, the pain will become so bad it forces me awake. Horrible agonizing pain, the worse i have ever experienced, making me tear up, cling to my head and just want to scream.
In my early teens the pain wasnt as bad, then I want to say around 19 they shot up in intensity, and then in the past 3 months theyve gotten so bad ive felt like going to the ER nearly every time I get one, even though they rarely help...
I get at least 5 of these headaches a month, any time in my cycle, and they last 2-6 days, always.
I'm still pretty early in the process of trying to find treatment, since until this past year i did not have the insurance or funds to see any form of doctor about this, but it's already frustrating and things are just getting worse.
First neurologist I tried to see lost any history of me having an appointment, twice, so I found another one and had to wait several more months to get in. When I finally saw them, they seemed very rushed and eager to get to the next patient, asking me very few questions, i kept having to explain symptoms that they just seemed to forget or ignore. I tried to make a point how important it was that lying down would increase the pain, and they insisted on giving me some medication to make me drowsy. I have no problem with being tired, the pain just keeps me from sleeping. So I got an appointment with yet another neurologist I finally see on the 22nd, and then Im set to go to a headache center.. in october.
During my most recent trip to the ER they gave me something that relieved my pain for the first time ever, but they wouldn't tell me what it was, they made a very big deal over that. But whatever it was.. it only relieved the pain for about 8 hours, enough to get some sleep, but the feeling of pressure never left, and as soon as whatever it was wore off, the pain returned.
So.. here is the known stuff ive been tried on so far..
Ive tried about every typical over the counter pain reliever, nothing works, believe me i tried multiple times out of desperation (i dont mean like every day, i mean over the years), and i just stopped them completely because they brought me no relief and i didnt want to start any rebound headaches.
Fioricet, prescribed by my main doctor. Didnt work.
Sumatriptan nasal spray, also by main doctor. Didnt work.
prochlorperazine, tried in ER and then prescribed in pill form. Didnt work.
I'm currently on amitriptyline as a preventative prescribed by the Neuro I didnt like, been on that 2 weeks now, no changes.
Ive been on a special diet for 2 months now avoiding all preservatives and anything dairy to see if that would help, no changes. Ive been keeping a headache diary tracking the headaches and my food, but i havnt seen any patterns yet. Ive had no luck in my own research..
I'm looking for any kind of help I can get.. foods to try avoiding, topics to bring up with the next neuro, anything like that.
And thank you, anyone, willing to read through my wall of text.