Introduce myself- ongoing headache for about 5 yrs

Hi, Sorry, can't help myself, when you said they did an MRI of your head and they found nothing, you're opening yourself up for some jokes ;-)

A few things come to mind. A smoldering sinus infection. Never had them for 5 years, but have over months. Usually have trouble regulating body temperature, that's a common sign for me. The most recent was bizarre, I developed a fear of everything, not extreme, just ludicrous. If I looked at a toy or a building or anything else, I had this fear that I wouldn't be able to build it or fix it or whatever. I went to my doctor, and I was in therapy at the time, documenting my new found fear. After weeks of this, being subject to the same body temperature regulation issues, I went to my ENT, he prescribed antibiotics. Took the course, nothing changed with the sinuses, so I called him again, being put on the same antibiotic and steroids. I happened to be on vacation at the time, afflicted with the same fears, but one morning, when I awoke, the fears were completely gone. The Amygdala lies in close proximity to the sinuses and is responsible for fear, I have little doubt my prolonged sinus inflammation caused the fear issue.

Moral of the story, your sinuses are all over the place, they can be infected or inflammed without profound symptoms. Maybe a place to start.

A course of steroids may be a way to go to see if the headache is inflammatory.

TMD may be another possibility.

http://www.webmd.com/oral-health/guide/temporomandibular-disorders

And, apparently Fibromyalgia is a common cause of Chronic Headaches, as you likely know.

http://www.fibromyalgia-symptoms.org/fibromyalgia_chronic_headaches.html

But, the washcloth relief leads me back to sinuses. Interesting. My wife has Fibro, I'll ask her to read your post as well, maybe she can contribute from her perspective.

Scottio,

I have constant tinnitus (ringing in the ears-- reminds me of the faint sound of a running vacuum cleaner!), it never ever goes away either, just the same as the headache and pressure. (Sorry if I'm repeating myself, I don't remember whether I mentioned the tinnitus in my first post). It fluctuates in intensity, but it is always there.

Honestly, it is tough to say what symptoms I get "with" the headache, because I ALWAYS have the headache! If you know what I mean. And I have a wide range of so many problems affecting so many different areas of my body. So it's tough to say. But I DO get severe brain fog (some days it is much worse than others) and bouts of lightheadedness, yes. I have not noticed whether those symptoms are worse whenever my pressure/ headache is worse, BUT the worse the pressure is, the more blurry my vision can get!

How is it so bad that my vision blurs? Must be something inflammatory.

You sound very similar to me though in a lot of ways. One being the heat applied to the area- it helps, two being sometimes when I lay down (laying as far back as possible), it can also help with the pain. BUT my headache is horrible upon waking up, and only worsens throughout the day it seems.

My jaw has been an issue for a while now (whether it be from the fibro or whathaveyou, who knows), and it only started out with lots of pain in it and tightness all around it, no clicking. But now it has become worse where it actually tries to clench shut at times and it is tough for me to eat! TMD (the disorder in the jaw joint) a definite possibility in myself, as well. Unfortunately, I don't have the money for a dentist and I have just been trying to accommodate to the pain with what/ how i eat!

I also suffer from severe anxiety and I don't know IF I still do it, but I think I used to have issues with clenching my jaw as well as grinding my teeth ("bruxism") at night! IF I still have this habit, that would explain the horrible pain I have when I wake up! Maybe I need a mouth guard to see if it helps at all!

Scottio,
have you been to a chiropractor? I was never a fan of chiropractics, but I will tell you that my bio professor is a chiropractor himself, and he said he could tell by LOOKING at me that I must have "something out of whack" in my neck! By the way I tilted my head always! Well, wouldn't ya know it, he suggested I see another chiro that he knows, I made an appt... went yesterday... and I found that I have various neck vertebrae that are SEVERELY out of whack. Severely! I could tell too when he touched them because OMG did they hurt!!!!

So perhaps that accounts for a lot/ if not all of my head/ jaw/ face pain and pressure!! Have you ever seen a chiro?? Had recent x-rays of your neck or back? Have you ever had any injuries (I've been in quite a few car accidents)...!

JungRulz LOL to the joke you made! I guess I deserved that one! I do have sinusitis (recurrent sinus infections & inflammation). Been on many rounds of antibiotics over the yrs (no time recently though bc I dont have insurance right now & don't want to shovel out all of the money in my pocket to see the doctor). I DO have severe trouble with regulating body temperature. However, I don't ever figure that my sinuses are all the reason for the headache and here's why:

I tried a netty pot everyday in the shower, with no relief. Also, I have tried some rounds of decongestants to see if it would help the pain/ pressure, and they never have. I was also even on prednisone a while back and it did NOT help the head pain! I do have sinusitis, but I'm not sure it is the reason for my 24/7 headache. It has been the reason for worsened headaches though but I tend to know when I have a sinus infection because I can feel "movement" in my head when I turn/ move my head.

Once I get insurance though, I'm going to have them take a closer look at my sinuses, just to see.

WOW to your serious sinus infection! I actually was aware that severe sinus infections CAN cause such bizarre, psychiatric symptoms. I've read this before. Crazy, huh?

Thanks, guys!

Eden

Hi! Just wanted you to know that there could be an answer for your multiple neurological symptoms. My family had multiple diagnosed and undiagnosed pain, migraine, gastrointestinal, on and on and on! You might want to look into AIP or even HCP on the American Porphyria Foundation website. Don't forget to look at their chat room of peoples "under-diagnosis" and multiple symptoms. Let me know what you think. Hope it is helpful in your search!

Also, lots of drugs on the "no no" list for porphyria, that is what caused my jaw problems (irreversible). Lyrica! A "must not use" drug for porphyria patients! You sound just like me, it was a twenty year journey to the correct answer, and the best path for optimum health, I wanted to know the underlying "cause". Not an easy task in a system that looks at individual symptoms. Even though I am the only one unfortunate to be left in never ending chronic pain, my correct diagnosis, confirmed with DNA test, improved my entire family's life!

thank you thank you, everyone!!

scottio,

the chiro said the same thing with me, my neck and posture. also found yesterday that my pelvic bone is very out-of-whack (weird i know)! but it's odd...when i first get adjusted at the chiropractor (i've only gone twice so far), i feel so much better- and even more alert (i am always so fatigued, zoned-out and groggy-feeling otherwise)... but then i always go back to hurting severely not too long after. the first time he adjusted me, it even took away my leg pain completely! (my legs are always in constant pain). but this past time, it did not help the leg pain. it helps the headache so and so for a bit, but then BAM! terrible pain again. the pressure never seems to go away. maybe it always is severe sinus pressure/ pain/ infections (i have sinusitis), BUT it's weird that netty pots, decongestants and OTC sinus stuff does not help whatsoever. i don't get it! i don't think it's *always* the sinuses as the main cause, but i know that they do not help it. i went out in the cold today, and the cold air and wind just kills me. as soon as it hits my forehead or temples, the pain is immense. that seems like the sinuses! so ever since, my headache has been worse now. do you have anything like that? or no? i'm sorry that you're suffering, too. having a constant headache really is enough to drive you insane!! i really just can't take it anymore! it's been about 5 yrs with this sh**. people blame it on the fibromyalgia, but i don't know... no other fibromyalgia person seems to have had an on-going headache for this long!!!! please continue to get tests done if you can, and keep in touch with me!

gods love,
i do not take medications. my body is very sensitive to everything; i don't like meds. your whole family has been sick with illness? that's awful. i'm one of the only people in my family who suffers with constant pain and a lot of the problems i have. but i still have a bad gene pool of severe mental disorders, parkinson's, IBD, cancer, diabetes, etc. i totally agree that most professionals only look at the individual symptoms and not the big picture! i'm sorry for how long your journey to diagnosis was, but i'm glad it helped out you & your family!

aishajv,
thanks for the tip!! i will try anything!!!!! so i'll check it out. thank you!!!

Eden