Introduce myself- ongoing headache for about 5 yrs

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Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 5:28 PM (GMT -6)   
Hi, everyone. I am ALL over the place on healingwell. Been to so many different forums because I have so many different problems all over my body, along with a suspected autoimmune disease.

I am DX with fibromyalgia; however, some people with Fibro get headaches, some do not.

Mine is quite different either way. It has never gone away in about 5 yrs. Not once. OTC medications don't touch the pain, not even a little. It's as if nothing can be done about it! I had an MRI once 3 yrs ago, but it was only to check for MS. They found nothing at all.

Has ANYONE ever heard of such a thing? A headache that never ever goes away? Can anyone relate? Because I'll tell you- I have severe body pain all over the place always, but the headache makes me the craziest after all this time. Literally. I think I have become crazy (well, crazierdevil) just because of the constant head pain!!!

Only thing that sort of relieves it is running a washcloth under very hot water and placing it on my forehead, making sure to drape the temples and eyes, too. I often do it over and over again, sometimes in a hot shower. But the headache ALWAYS comes back.

Along with the pain, comes severe pressure that never goes away- behind the eyes, at the temples. Tinnitus also that is constant (I guess from the pressure).

I have severe neck issues (undiagnosed) as well as some jaw pain (maybe TMD?) But REALLY? This headache hasn't gone away in yeeears! I'm going mad. It literally ruins my quality of life. I just want to rip my head off.

On top of it, I also get migraines from time to time (DX ocular migraines- but also just get it where head pounds and throbs and I need to lay in the dark), BUT my main concern is my constant 24/7 headache. Can anyone relate to it? What maybe could be done?

I have no health insurance cry, but I'm working on it! What have some of you guys done for the headaches? Through doctors? On your own? I am not big into medications. I have severe gastrointestinal issues along with severe allergies to many things.

What could be causing all of this pressure always- behind the eyes and at the temples? Has anyone had this issue too along w/ headache?

Has anyone ever been helped by a chiropractor?? I was never big into them but I may have found one that is very inexpensive and I can actually afford! Maybe he can help me! I may post about that in a separate thread even.. just to see peoples' experiences.

Any suggestions or opinions about this headache? Please?

Help!

Eden:-)

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 2/25/2014 1:06 PM (GMT -6)   
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.

scottio19
Regular Member


Date Joined Nov 2013
Total Posts : 32
   Posted 2/25/2014 5:21 PM (GMT -6)   
Do you get brain fog and lightheadedness with the headache?

I have a headache that sounds like yours with buzzing in my ears for 6 months now.

MRI with contrast, CT, blood work ect all normal.

Things that help it are hot showers and sometimes laying down. It's always at its best first thing in morning when I wake up and gets worse as the day goes on. My scalp feels very tender also

I have jaw clicking too so I thought maybe TMJ too?

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/27/2014 11:35 PM (GMT -6)   
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!turn 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 :-)
26 yr old F. DX: Fibromyalgia, IBS, GERD, Daily headache, Migraines, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality Disorder. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" -Mary Tyler Moore

scottio19
Regular Member


Date Joined Nov 2013
Total Posts : 32
   Posted 2/28/2014 3:39 AM (GMT -6)   
Hi Eden.

No i have not been to a chiro yet although a friend did tell me his aunt suffered the same kind of thing and she went to one who also did physio on her and he said as soon as he saw her he knew it was a problem with her neck and posture. It worked for her so maybe it's worth a shot?

Yeah our headaches share many similarites, I too have developed anxiety but only because of this headache that never ends. After finding out there is no brain tumour hopefully the anxiety eases off and that will be one less thing to worry about.

My vision also seems to get worse (blurry) at times but my eyes are fine says the optitian so I really don't know whats going on.

Gods love in action
Regular Member


Date Joined Feb 2014
Total Posts : 52
   Posted 2/28/2014 8:52 AM (GMT -6)   
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!

Gods love in action
Regular Member


Date Joined Feb 2014
Total Posts : 52
   Posted 2/28/2014 8:58 AM (GMT -6)   
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!

Gods love in action
Regular Member


Date Joined Feb 2014
Total Posts : 52
   Posted 2/28/2014 9:09 AM (GMT -6)   
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!

aishajv
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/2/2014 9:28 AM (GMT -6)   
Hi there, i really feel terrible for all migraine sufferrers. ok here's a tip which i've found for you
HEADACHE: Rub Kalonji oil on the forehead and near ears, and also drink half tea spoon Kalonji oil twice a day.
kalonji seeds are known as ''nigella seeds'' in english. you can search google images for ''kalonji'' so you can get an idea of what kalonji seeds look like. they are black seeds and believe me kalonji has very powerful healing propoerties! Mus give a try to this tip.
ALSO ive also craeted a free migraine/headache report which you can download at http://www.migrainerelief.z40.us free of charge. you just sign up and ill instantly send you the report. it has complete guide form triggers to treatment. hoping to hear back from you soon with a positive feedback!

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 3/6/2014 8:36 PM (GMT -6)   
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 painshakehead. 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 :-)
DX: Fibro, IBS, GERD, Daily headache, Migraine, Severe allergies, Bladder diverticulum, Mild kidney damage, Recurrent infections, Sinusitis. Bipolar Disorder, Borderline Personality, OCD / Dermatillomania. In the past: Gestational Trophoblastic Disease. + Undiagnosed issues; searching for the answers.

"You can't be brave if you've only had wonderful things happen to you" Mary Tyler Moore

Tough Chickie
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/28/2014 1:28 PM (GMT -6)   
Hi Eden! smilewinkgrin

When I read your posts, I had to reply. I'm new to the forum and, like you, I am battling fibro and migraines.

My current migraine started in Oct. 2013 and hasn't left me since. I've been to more doctors than I can count and have been told that I am faking everything and just looking for pain meds. I've been unable to work since December and was denied disability because my MRI & CT's are normal - even though none of by ailments will show on a scan!

I have been feeling so alone in this until I found this forum and realized how many warriors walk this path. Your words made my heart a little lighter...thank you so very much. I look forward to "speaking" with you soon!

Blessings and love,
Lisamarie
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