Discussions By Condition: Headache

Headache that has become my shadow...

Posted In: Headache 5 Replies
  • Posted By: atvlady
  • February 10, 2008
  • 00:58 AM

Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad:

My question to ANYONE that has any input or suggestions for me.....please let me know. I am at my whits end with this. These headaches are a daily event and I can't have a normal life with them. Have any of you had/have similar symptoms I do? What do you do or take? I have even tried vigorous exercise with mine and nothing. I was told by a neurologist I have common everyday headaches. I got up and walked outta his office. A common everyday headache does NOT wake you up from a dead sleep. So PLEASE if anyone can help me I am desperate. Thank you!!!!!!!!!!!!

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5 Replies:

  • Aaaah ive found u......this is also why i come to this site. I know excatly where you are with this "its a nightmare" mine's been going on 11 yrs now & quite frankly it would drive u to sucide......Heres some things i have found out that might help you, 5 yrs back during a attack i was brought to hospital, there they put me on sats machine & they found my oxygen rate was very low, i have now got oxygen supply at home & going on it really helps, try deep breathing at the onset of pain, this might seem like it is increasing you pain but believe me it will shorten the attack.Also at the onset of attack if you could get to hospital so they can record ur oxygen level at that time would be of benefit to you. During periods when u are well, low oxygen in blood will not show so it important to get it done when ur ill. Even though i have got this far its still difficult because i want to find out why my oxygen rate falls like that & have that treated not just the symptoms. look up hypoxia this could be the cause, when doctor labels u with TN or TMJ & sometimes getting past that is a problem, Do u snore at all ? theres so much more i could talk about, but that will give u something to go on ! aaah hun i really feel for u i wouldnt wish this head/facial pain on anyone. if i can help u i will.....good luck :)Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad: My question to ANYONE that has any input or suggestions for me.....please let me know. I am at my whits end with this. These headaches are a daily event and I can't have a normal life with them. Have any of you had/have similar symptoms I do? What do you do or take? I have even tried vigorous exercise with mine and nothing. I was told by a neurologist I have common everyday headaches. I got up and walked outta his office. A common everyday headache does NOT wake you up from a dead sleep. So PLEASE if anyone can help me I am desperate. Thank you!!!!!!!!!!!!
    Tootsie 628 Replies
    • February 28, 2008
    • 00:02 AM
    • 0
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  • Hi, i know excatly what u mean, i have been sufferin TN(trigeminal neuralga) for 11 yrs now, or should i say thats what they diagnose it as, its a nightmare & would drive one to sucide.....i'll go straight to the point that might help you......during an attack of this i was brought to accident & emergency, there they put me on a sats machine, it just clips on your finger, it records blood oxygen levels, mine was really low, i was given oxygen & the pain eventually started to ease. I have now got a supply of oxygen at home. But they have never bothered to try & find out why this was happening to me....eventually after 5 yrs of this i went private to a pain specialist, actually i use to go to him under national health, but thats another story, i told him about my oxygen being low but i didnt know why it was happening, but i believed it was the reason i was taking these attacks, anyway to cut story short again, it eventually turned out i have a hole in my heart, but after tests they said its not bad enough to be causeing these headache/facial pain.......lung test next, they to turned out ok, but for some reason my oxygen levels still drop very low......so its some sort of hypoxia i think but still havent got to the route of it.What u need to do during an attack try to get to hospital & get them to record ur oxygen sats......i know this is the trigger for my pain, which sounds similar to yours, my eye swells, the white of the eye turns red, water streams out of it, i cant talk, its difficult to swallow, i hear the blood gush/throb in my head & quite frankly i think i am going to die, then i wish i would because i cant bare it, its has turned my life upside. down, been through all the medications that dont work, dulls ur brain, makes u a zombie, but still the pain......:(What u should try is deep breathing, get as much oxygen in ur lungs as u can........Oh and another thing that did help me for a while is Imigran injections also called "sumitripten" think thats how its spelt. they helped me for a while but eventually i was using 2 a day 7 days a week so docs took em off me saying they could cause serious health probs.....lol & theyre costly ! i do know i had to stop using them as they where failing me & really if i kept going the way i was going i would have been dead nowi hope this is of some help too you, let me know how u get on please.theres more i could help u with.At the min i am having attacks every 2 hrs during the night, something is seriously wrong in my sleep triggering these.i wish u well ! Ruth Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad: My question to ANYONE that has any input or suggestions for me.....please let me know. I am at my whits end with this. These headaches are a daily event and I can't have a normal life with them. Have any of you had/have similar symptoms I do? What do you do or take? I have even tried vigorous exercise with mine and nothing. I was told by a neurologist I have common everyday headaches. I got up and walked outta his office. A common everyday headache does NOT wake you up from a dead sleep. So PLEASE if anyone can help me I am desperate. Thank you!!!!!!!!!!!!
    Tootsie 628 Replies
    • February 28, 2008
    • 10:20 PM
    • 0
    Flag this Response
  • Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad: Hi sorry im goin to keep this short & to the point, ive tryed twice to email u but lost it both times as it was too long & was logged of site.I have same prob, 11 yrs now, same treatments, mri/ct scan, just had 2nd mri scan & waiting results......heres what i do know....my oxygen levels drop low that causes my pain to start. was diagnoised with TN (trigeminal neuralaga) but low oxygen in blood sats is my trigger. have a hole in my heart but not big enough to be causing this, lungs or ok so thats not the cause. Hypoxia causes headaches if u goggle it it explains more but does not explain type of headache.Get ur oxygen sats checked during attack, u will have to go to hospital A&E for this, i know that will be unbareable but u have to do it to find out.I have oxygen supply at home now, it does help lessen attack & if u get on it quickly enough it will even stop attack.Also try deep breating, get as much air into ur lungs as possible, but if ur going to A&E dont do this as u want to see sats level as they r at that time.Also Imigran injections can work, they did for me for a while but then I ended up on 2 a day 7days a week, theyre costly ! but in the end they where failing me so docs stopped me having them !im going to stop here & send this, hopefully im not logged out again.plz keep in contact ! i wish u well & hope this helps !:) .................. Ruth
    Tootsie 628 Replies
    • February 28, 2008
    • 10:53 PM
    • 0
    Flag this Response
  • Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad: My question to ANYONE that has any input or suggestions for me.....please let me know. I am at my whits end with this. These headaches are a daily event and I can't have a normal life with them. Have any of you had/have similar symptoms I do? What do you do or take? I have even tried vigorous exercise with mine and nothing. I was told by a neurologist I have common everyday headaches. I got up and walked outta his office. A common everyday headache does NOT wake you up from a dead sleep. So PLEASE if anyone can help me I am desperate. Thank you!!!!!!!!!!!! Hi sorry im going to keep this straight to the point, ive tryed to answer u 4 times now & i keep loosing it as ive taken to long & then been looged off site............aahhhhhh lol Ive same prob 11 yrs now, its a nightmare so i feel for u ! what i have found out, my oxygen levels drop, this triggers my pain. Onset of pain go to hospital get them to monitor ur sats levels, it would help if u had letter from doc so they see to u straight away, dont wait. I have supply of oxygen at home now.....it helps ! Also On the onset of attack try deep breathing, get as much oxygen in ur lungs as possible. Another thing that worked for me for a while was imigran injecions (sumatriptan) the tablet form did not work.....dont know why ! think it was just not fast enough ! but injections eventually failed for me. Also have found hole in my heart but they say its not bad enough to cause this problem. Get urs checked ! Lung tests where good, so thats not the problem ! Hypoxia can cause this, look it up but it wont describe the headache, they just refer to it as early morning headache. Hypoxia is name for low oxygen, just havent found out yet why this is happening to me. Plz let me know if this helps & how u get on ! I wish u well :)
    Tootsie 628 Replies
    • February 28, 2008
    • 11:19 PM
    • 0
    Flag this Response
  • Hello. I have suffered from this headache since October of 2006. I have had a mri done and ct scans. I have been to many doctors. I have tmj and am planning on having surgery in the spring. I have tried over 27 medications, herbal remedies, accupuncture and nothing at all and these headaches will NOT let me go. They wake me from a dead sleep, my eyes swell and water like I am crying, sound and light I am sensitive to, they make me incredibly irritable, even the blood pulsating into my head makes it hurt LOL. I don't have HBP and have been tested for many other things. I am at a dead lock. I feel like I am screaming and noone is hearing me. I have my family doctor who is great help but his hands are tied. I have been to neurologist, ENT, pain mgmt docs, you name it. Recently I read a article on a University website about cluster headaches. I fit the description some. My family doc gave me Imitrex. I have only been on it few days and still find my headache shadow is still following me around....not as bad but the daggone pest is still lurking....:mad: My question to ANYONE that has any input or suggestions for me.....please let me know. I am at my whits end with this. These headaches are a daily event and I can't have a normal life with them. Have any of you had/have similar symptoms I do? What do you do or take? I have even tried vigorous exercise with mine and nothing. I was told by a neurologist I have common everyday headaches. I got up and walked outta his office. A common everyday headache does NOT wake you up from a dead sleep. So PLEASE if anyone can help me I am desperate. Thank you!!!!!!!!!!!! sorry for all the replies, i thought id lost them all..........lol but as u can now see i did try my best......lol:confused::)
    Tootsie 628 Replies
    • February 28, 2008
    • 11:23 PM
    • 0
    Flag this Response
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