Left side sinus area pain, worse when lying down

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Arcus
New Member


Date Joined Jan 2015
Total Posts : 1
   Posted 1/17/2015 10:12 PM (GMT -6)   
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.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7355
   Posted 1/18/2015 8:22 PM (GMT -6)   
Welcome to the forum.

The diet is an excellant idea!.

the pain could be coming from the trigeminal nerve. I went thru 6 neurologists, then went to John Hopkins in MD, I live in NJ. I received a correct diagnosis [see below]

Now I see a doc at Thomas Jefferson Univers. I am on a combo of meds.

I suggest finding a hospital that works with Trigeminal pain, has a good neuroglogy department. Learn about the nerve and face pain, educating yourself is most important, that way you can be proactive at the doc appointments.

Best of luck
Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

PAANGEL
New Member


Date Joined Jan 2015
Total Posts : 1
   Posted 1/19/2015 11:37 PM (GMT -6)   
I too have this type of headache for many years and have confounded headache specialists. What has helped me has been soft ice packs that I will place on my pillow. Home made ones out of Dawn dish detergent and rubbing alcohol work great as they are cheap and stay comfortably cold for several hours. You can google the instructions on how to make one. The ice cools the scalp where a large nerve may be instigating your pain. The occipital nerves are two a large nerves at the back of the head, they start in the back of the neck, leaving the cervical spine and travels up the back and sides of the head like a giant branching tree. It is just under the skin at the scalp so the ice packs are very effective in calming it down. It is a migraine feeder when irritated, and impacts the trigeminal nerve in the brainstem, as both of these nerves originate next door to each other. So often when this nerve is irritated people may have migraines, or pain in the distribution of the trigeminal nerve. Much research has been done on occipital nerve blocks, surgeries, procedures, stimulators in the treatment and prevention of headache. Interest in the role of this nerve continues to be high.
It seems there is a vicious cycle of migraines causing the occipital nerve to be irritated, which in turn feeds back upon the trigeminal nerve, causing more migraines.

Hope the cold pack helps you. It seems to be worth a try.

Definately see a headache specialist, clinics are ideal.

And never give up.
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