Aa
World's Longest headache - 18 years!
I have had a 24/7 hreadache since 1989. It is located right in the centre of my forehead and and is usually an 8 or a 9 out of 10 on the pain scale. There is no treatment, medication, drug, specialist, scan or alternative therapy treatment that I have not undergone in an effort to find the cause. The best of the best in Australia have worked on it all to no avail. MRI's by 8, CT Scans by 4 anything with "..oscopy" on the end of, anti depressants, high dosage morphine patches, not one single thing has ever look like working. It has been diganosed as not being physosymatic mainly as a result of its continuity and refusal to react to any medications.
I am 64 and in excellent health - other than this constant companion. I do not intend seeing this 2008 year out I am afraid as it has finally beaten me!
I am 64 and in excellent health - other than this constant companion. I do not intend seeing this 2008 year out I am afraid as it has finally beaten me!
Hi.
I am sorry that you have been suffering with this headache for 18 years, and that no one has been successful at identifying what is causing it or has been able to give your relief for it.
Since you are already in this forum, could you at least tell us what you have been experiencing with respect to the intensity and type of headache your experience? I know we may not be the best of the best but who knows, maybe one of us here could find a clue as to what's been bugging you for such a long time.
Since it started at age 46 (is this correct?), did you happen to notice any change in lifestyle or diet that you suddenly made during that time? Was there any trauma that occurred? Where exactly do you feel the headache? Does it feel superficial on the forehead, or within the skull at about the area of the center of the forehead. Is it sharp, dull, constricting, or throbbing.
Please do not give up to your condition. I am sure a lot of people here do want to help you get better.
Good luck.
I am sorry that you have been suffering with this headache for 18 years, and that no one has been successful at identifying what is causing it or has been able to give your relief for it.
Since you are already in this forum, could you at least tell us what you have been experiencing with respect to the intensity and type of headache your experience? I know we may not be the best of the best but who knows, maybe one of us here could find a clue as to what's been bugging you for such a long time.
Since it started at age 46 (is this correct?), did you happen to notice any change in lifestyle or diet that you suddenly made during that time? Was there any trauma that occurred? Where exactly do you feel the headache? Does it feel superficial on the forehead, or within the skull at about the area of the center of the forehead. Is it sharp, dull, constricting, or throbbing.
Please do not give up to your condition. I am sure a lot of people here do want to help you get better.
Good luck.
Hi,
With the long history that you describe and all the investigations and medications you have been through, yours must be a case of diagnostic dilemma.
Just to go over everything , so that nothing has been left - has your eyesight been checked? Has sinusitis been ruled out? Do you have a high blood pressure or diabetes?
Is your blood hemoglobin level normal?
Has a lumbar puncture been done?
Do you sleep well?
Also have you ever been prescribed magnesium - magnesium deficiency is known to cause headaches not responding to conventional medication.
Do get back to us with your progress.
Hope this helps in some way.
Good luck.
With the long history that you describe and all the investigations and medications you have been through, yours must be a case of diagnostic dilemma.
Just to go over everything , so that nothing has been left - has your eyesight been checked? Has sinusitis been ruled out? Do you have a high blood pressure or diabetes?
Is your blood hemoglobin level normal?
Has a lumbar puncture been done?
Do you sleep well?
Also have you ever been prescribed magnesium - magnesium deficiency is known to cause headaches not responding to conventional medication.
Do get back to us with your progress.
Hope this helps in some way.
Good luck.
God Bless You, I know how hard it is to live with a pain that people can't see - you just feel. And this is no time to Give Up because you have come so far - the answer could be right around the corner. First of all, remember - I don't know what doctor told you psychosomatic but it doesn't sound like he explained what that means. Psychosomatic simply means that your brain is causing the headache on its own. Your brain is causing the headache - but in an automatic way that you can't control. So "just relax" - won't work for you because that would be a voluntary response and this is not voluntary. I think that is what the doc was saying - not sure.
You didn't come here to give up - you came here to find answers so let's get started. Unfortunately, determining treatment for an atyical headache is trial and error. It won't be easy, it won't be fast but there are a million treatments out there and lets find you one that works or at least something that blocks the pain. So, I know you've said it a 1000 times but sorry, I have to see the pattern. You need to list symptoms, what oscopies, what meds and reactions to them, any damage to spine in the past, WHAT HAPPENED OUT OF THE ORDINARY IN 1989. And by the way, I love what I see of Austrailia - never been there but if I had to leave the US, that would be where I would go. You are very articulate and I am sure you have seen some top notch specialists in Austrailia - I live somewhat in the vacinity of Barnes - Washington University. Now they are considered the 7th best hospital in the US but I do know some neuro affiliations there so maybe it's time for a little Aussie - USA challenge. Doctor's are bright and competitive by nature - so working across an ocean may be extraordinary enough for them to push a little harder to get those answers. But we start with details, details and oh yes, more details.
Airbus, you don't work in the skies all day do you? I know better than to think it is that easy but have to ask!
You didn't come here to give up - you came here to find answers so let's get started. Unfortunately, determining treatment for an atyical headache is trial and error. It won't be easy, it won't be fast but there are a million treatments out there and lets find you one that works or at least something that blocks the pain. So, I know you've said it a 1000 times but sorry, I have to see the pattern. You need to list symptoms, what oscopies, what meds and reactions to them, any damage to spine in the past, WHAT HAPPENED OUT OF THE ORDINARY IN 1989. And by the way, I love what I see of Austrailia - never been there but if I had to leave the US, that would be where I would go. You are very articulate and I am sure you have seen some top notch specialists in Austrailia - I live somewhat in the vacinity of Barnes - Washington University. Now they are considered the 7th best hospital in the US but I do know some neuro affiliations there so maybe it's time for a little Aussie - USA challenge. Doctor's are bright and competitive by nature - so working across an ocean may be extraordinary enough for them to push a little harder to get those answers. But we start with details, details and oh yes, more details.
Airbus, you don't work in the skies all day do you? I know better than to think it is that easy but have to ask!
I JUST WANT TO SAY..... DONT GIVE UP!!! YOUR A VERY STRONG MAN! AND I WISH YOU NOTHING BUT THE BEST!
Hey,
I'm so sorry to hear you've had a headache for 18 years. I've had a constant 24/7 headache for almost an entire year (Oct. 17th is the anniversary). For the first 6 months we had no idea what it was, I did all the same tests as you and no medicine works for me either.
I found out it was from a minor whiplash i had back in 07. I injured a muscle in my neck. I have absolutely no neck pain and any other pain other than my head. A friend of mine came across it (she's a masseuse) and slowly but surely, we're starting to get rid of the headache, lowering it from an 8 and 9 on a scale of 10 to a 3 and 4 (on the good days) through physical therapy and a chiropractor.
maybe you should check that out.
I'm so sorry to hear you've had a headache for 18 years. I've had a constant 24/7 headache for almost an entire year (Oct. 17th is the anniversary). For the first 6 months we had no idea what it was, I did all the same tests as you and no medicine works for me either.
I found out it was from a minor whiplash i had back in 07. I injured a muscle in my neck. I have absolutely no neck pain and any other pain other than my head. A friend of mine came across it (she's a masseuse) and slowly but surely, we're starting to get rid of the headache, lowering it from an 8 and 9 on a scale of 10 to a 3 and 4 (on the good days) through physical therapy and a chiropractor.
maybe you should check that out.
Hi,
Im 17 and I've had a constant headache for nearly 2 years now and like you have had more scans and tests and medication than I care to remember and nothing was helping. I was then prescribed a drug called topiramate (topamax) which is mainly used for patients with epilepsy, but is also sometimes given to those suffering from migraines. Although what I have is not a migraine they take the edge off the pain and make it more bearable going about the day and making it to college.
I don't know if you've tried topiramate or not but I'm sure if not it would be worth asking the doctor for information. Don't give up and I hope you're feeling much better soon and hopefully your headache vanishes altogether.
Louise
Im 17 and I've had a constant headache for nearly 2 years now and like you have had more scans and tests and medication than I care to remember and nothing was helping. I was then prescribed a drug called topiramate (topamax) which is mainly used for patients with epilepsy, but is also sometimes given to those suffering from migraines. Although what I have is not a migraine they take the edge off the pain and make it more bearable going about the day and making it to college.
I don't know if you've tried topiramate or not but I'm sure if not it would be worth asking the doctor for information. Don't give up and I hope you're feeling much better soon and hopefully your headache vanishes altogether.
Louise
Hi Folks, I'm back again, and I made a mistake with the number of years I have had this headache, should be twenty years (20), had my official "birthday" of it in February this year (09)
Since then nothing has changed but many thanks for the kind words of support and advice from all!
Late last year I submitted myself to an "all or nothing" attempt to find the problem and after every Xray, CAT scan, blood test, MRI's plus the never ending visits to specialists, as expected all came back clear!!
Dear oh dear!
I have had some success with OxyContin twice daily, 40 mgs each time and this definitely provides good relief to the strage that I can live a reasonable life 75% of the time. With no side effects from the oxycontin, that is a huge leap forwards for me with the only nuisance being the small number of tablets per prescription i.e. 20.
I have a top Doctor who I have a lot of confidence in but do really dread another having to live on this medication for the rest of my life!
I sit back and hope that a more suitabloe type of pain relief will eventually become available but I still cannot stop thinking about what is the cause every day.
My next step is to investigate the weird symptom I have always had and that is passing out when I am in a car that is braked moderately and then accelerated immediately.
The severity of this is directly related to the degree of braking. With really savage braking/acceleration I completely pass out for about ten seconds whilst light applications reduce the length of time I go "walkies"!
Of course this all points at an ear balance problem but after seen several ENT specialists with numerous investigations and Xrays, none of them can explain why this happens.
This passing out feeling starts right smack in the area where my headache is worst - too coincidental isn 't it!
It may just be a red herring and have nothing to do with the headache but it is very mysterious nonetheless.
So again, thanks for the replies and if anybody has any ideas, I would love to hear them!
Cheers
Ian F
Since then nothing has changed but many thanks for the kind words of support and advice from all!
Late last year I submitted myself to an "all or nothing" attempt to find the problem and after every Xray, CAT scan, blood test, MRI's plus the never ending visits to specialists, as expected all came back clear!!
Dear oh dear!
I have had some success with OxyContin twice daily, 40 mgs each time and this definitely provides good relief to the strage that I can live a reasonable life 75% of the time. With no side effects from the oxycontin, that is a huge leap forwards for me with the only nuisance being the small number of tablets per prescription i.e. 20.
I have a top Doctor who I have a lot of confidence in but do really dread another having to live on this medication for the rest of my life!
I sit back and hope that a more suitabloe type of pain relief will eventually become available but I still cannot stop thinking about what is the cause every day.
My next step is to investigate the weird symptom I have always had and that is passing out when I am in a car that is braked moderately and then accelerated immediately.
The severity of this is directly related to the degree of braking. With really savage braking/acceleration I completely pass out for about ten seconds whilst light applications reduce the length of time I go "walkies"!
Of course this all points at an ear balance problem but after seen several ENT specialists with numerous investigations and Xrays, none of them can explain why this happens.
This passing out feeling starts right smack in the area where my headache is worst - too coincidental isn 't it!
It may just be a red herring and have nothing to do with the headache but it is very mysterious nonetheless.
So again, thanks for the replies and if anybody has any ideas, I would love to hear them!
Cheers
Ian F
Ian,
I am so glad to hear that the OxyContin is providing some relief. I know that living on medication can seem like a pain and be very stressful... and I know that none of us want to feel as if we MUST live on medication forever... BUT, please think of it this way:
You have a very severe chronic headache. Right now, you don't know the cause. But, you have found a medication that is providing you with some relief.
What if you were born with diabetes? And let's say it's type one so you can't get out of this imaginary situation too easily by imagining you control your diabetes with diet. People who are born with diabetes type one must take insulin every day. Without insulin they usually don't live very long lives. BUT! With insulin, a person who has diabetes can do pretty much anything that anyone else can do!! Some people struggle with diabetes more than others... sometimes they have to go to diabetes specialists instead of just a regular family doctor... and sometimes they suffer from complications because of their diabetes and have to make life-style changes or take other medications as well as insulin. BUT! No one is going to tell a diabetic "well... with that medication you function fairly well... but, just think about having to take that medication EVERY DAY for the REST OF YOUR LIFE!" ... think about how many diabetics would be jumping off cliffs if we started treating them like that... insulin is a great drug that helps keep people alive!! It's not a bad thing that people should ever feel bad about having to take!
That's what my mom tells me... she is a diabetic and I have chronic headaches. Sometimes I get angry about having to take my medication... but she reminds me of that and it helps me. Now... I do NOT have chronic headaches like you so I do not for a SECOND dare to say I know what you are going through... because I do not. But, I have experienced how pain can drive one to suicidal thoughts and self-harm. I know what it is like to "lose it" in pain. When I am at a 10 out of 10, my rational brain is taken over by a very primal area of my brain... and I think I start acting like how animals in distress act... have you ever seen a cat/dog or an animal at the zoo who is in distress? They throw themselves against walls, bite off their fur... sometimes even bite off limbs. I think that when we are in severe pain, we revert to this very primal confused animal-like state. And, there is nothing we can do about that when we are at a 10 out of 10 except put ourselves in a place where we will be safe.
Now that you are on the OxyContin... and you are not always at a 10 out of 10... this is the perfect time to make sure that you will always be safe. I always have a safe plan for myself, because I know that when I am at a 10 out of 10, I will not always be able to keep myself safe alone. I think that part of letting us know that you didn't think you'd make it through the year was letting us know that you didn't feel safe... that you'd had enough. You were reaching out, and that is a GOOD THING. Please continue to reach out... but also reach out to those who can rescue you ASAP such as FAMILY MEMBERS, FRIENDS and the CLOSEST ER. Never feel afraid to dial 911... if the pain is so bad that you feel at risk of giving up, then YOUR SITUATION IS TO BE CONSIDERED AN EMERGENCY. Please don't ever doubt that. Even if they won't be able to help your pain in the hospital, they WILL be able to keep you safe until you feel like you are able to keep yourself safe again.
Now... there ARE drugs out there that are stronger than OxyContin. So... you are not on the strongest stuff YET. Which is a GOOD thing. But, it is a good idea to stay on the OxyContin, at the dose you are on, for as long as possible. And keep trying... I know you probably feel like you've seen every doctor there is... and you probably have. But... that doesn't mean that one of those doctors won't figure it out one of these days if you just keep going back!! And new doctors are graduating from med school all the time. It is frustrating... I am sure. But, please don't give up.
And I am glad you found the OxyContin. And... really, there ARE other pain medications out there... not just morphine and OxyContin. So, there is still pain relief hope past this if OxyContin ever conks out.
I am so glad to hear that the OxyContin is providing some relief. I know that living on medication can seem like a pain and be very stressful... and I know that none of us want to feel as if we MUST live on medication forever... BUT, please think of it this way:
You have a very severe chronic headache. Right now, you don't know the cause. But, you have found a medication that is providing you with some relief.
What if you were born with diabetes? And let's say it's type one so you can't get out of this imaginary situation too easily by imagining you control your diabetes with diet. People who are born with diabetes type one must take insulin every day. Without insulin they usually don't live very long lives. BUT! With insulin, a person who has diabetes can do pretty much anything that anyone else can do!! Some people struggle with diabetes more than others... sometimes they have to go to diabetes specialists instead of just a regular family doctor... and sometimes they suffer from complications because of their diabetes and have to make life-style changes or take other medications as well as insulin. BUT! No one is going to tell a diabetic "well... with that medication you function fairly well... but, just think about having to take that medication EVERY DAY for the REST OF YOUR LIFE!" ... think about how many diabetics would be jumping off cliffs if we started treating them like that... insulin is a great drug that helps keep people alive!! It's not a bad thing that people should ever feel bad about having to take!
That's what my mom tells me... she is a diabetic and I have chronic headaches. Sometimes I get angry about having to take my medication... but she reminds me of that and it helps me. Now... I do NOT have chronic headaches like you so I do not for a SECOND dare to say I know what you are going through... because I do not. But, I have experienced how pain can drive one to suicidal thoughts and self-harm. I know what it is like to "lose it" in pain. When I am at a 10 out of 10, my rational brain is taken over by a very primal area of my brain... and I think I start acting like how animals in distress act... have you ever seen a cat/dog or an animal at the zoo who is in distress? They throw themselves against walls, bite off their fur... sometimes even bite off limbs. I think that when we are in severe pain, we revert to this very primal confused animal-like state. And, there is nothing we can do about that when we are at a 10 out of 10 except put ourselves in a place where we will be safe.
Now that you are on the OxyContin... and you are not always at a 10 out of 10... this is the perfect time to make sure that you will always be safe. I always have a safe plan for myself, because I know that when I am at a 10 out of 10, I will not always be able to keep myself safe alone. I think that part of letting us know that you didn't think you'd make it through the year was letting us know that you didn't feel safe... that you'd had enough. You were reaching out, and that is a GOOD THING. Please continue to reach out... but also reach out to those who can rescue you ASAP such as FAMILY MEMBERS, FRIENDS and the CLOSEST ER. Never feel afraid to dial 911... if the pain is so bad that you feel at risk of giving up, then YOUR SITUATION IS TO BE CONSIDERED AN EMERGENCY. Please don't ever doubt that. Even if they won't be able to help your pain in the hospital, they WILL be able to keep you safe until you feel like you are able to keep yourself safe again.
Now... there ARE drugs out there that are stronger than OxyContin. So... you are not on the strongest stuff YET. Which is a GOOD thing. But, it is a good idea to stay on the OxyContin, at the dose you are on, for as long as possible. And keep trying... I know you probably feel like you've seen every doctor there is... and you probably have. But... that doesn't mean that one of those doctors won't figure it out one of these days if you just keep going back!! And new doctors are graduating from med school all the time. It is frustrating... I am sure. But, please don't give up.
And I am glad you found the OxyContin. And... really, there ARE other pain medications out there... not just morphine and OxyContin. So, there is still pain relief hope past this if OxyContin ever conks out.
Hi Marileew, and wow, what a wonderful and inspirational reply you posted!
You hit it right on the head that many of us have this great disappointment in ourselves for having to resort to pain killers for the forseeable future - exactly how I feel!
I think, My God, do I have to do this for the rest of my life (30+ years) and can I really do it?
I think I have got a lot better at handling the pain these days as after 20 years and no sign or hope of relief, I just have to learn to "get over it" and move on. Unfortunately it has sapped all my reserve strengths and I have lost a huge amount of motivation - everything seems to much trouble.
When I wake up, I feel someone has his hands inside my brain and is twisting it like a wringer. I then go into my dizzy mode for an hour by which time the OxyContin have started their margic and then I have to wait another eight hours or so before I can take the second one.
I loate/hate/despise having to be kept going by tablets but you are 110% correct in your logic that many other people have to take medication to keep going and the upside of all the tests is that absolutely nothing "bad" has been found in the old body from top to toe.
It seems to me my wgole day is thinking about pain, tablets, feeling wretched and totally ashamed of myself for getting in this mess - and after 20 years, most everybody, including close family have all lost their compassion and/or caring - as the human is supposed i.e. forget pain and grieving.
I also get so damn angry that it can't be found! I would rather have a viewable tumour or something so that I could fight it but this latent pain is very hard to fight, and of course with no visibloe signs of pain, very few peoploe, even doctors, really believe it exists. That is the hardest pain of all to live with!
I don't know whether to just give up fighting or keep trying to solve the issue.
Never mind, letters like yours give me some hope that maybe I am doing OK after all.
Thanks again, yer a legend!
Ian
You hit it right on the head that many of us have this great disappointment in ourselves for having to resort to pain killers for the forseeable future - exactly how I feel!
I think, My God, do I have to do this for the rest of my life (30+ years) and can I really do it?
I think I have got a lot better at handling the pain these days as after 20 years and no sign or hope of relief, I just have to learn to "get over it" and move on. Unfortunately it has sapped all my reserve strengths and I have lost a huge amount of motivation - everything seems to much trouble.
When I wake up, I feel someone has his hands inside my brain and is twisting it like a wringer. I then go into my dizzy mode for an hour by which time the OxyContin have started their margic and then I have to wait another eight hours or so before I can take the second one.
I loate/hate/despise having to be kept going by tablets but you are 110% correct in your logic that many other people have to take medication to keep going and the upside of all the tests is that absolutely nothing "bad" has been found in the old body from top to toe.
It seems to me my wgole day is thinking about pain, tablets, feeling wretched and totally ashamed of myself for getting in this mess - and after 20 years, most everybody, including close family have all lost their compassion and/or caring - as the human is supposed i.e. forget pain and grieving.
I also get so damn angry that it can't be found! I would rather have a viewable tumour or something so that I could fight it but this latent pain is very hard to fight, and of course with no visibloe signs of pain, very few peoploe, even doctors, really believe it exists. That is the hardest pain of all to live with!
I don't know whether to just give up fighting or keep trying to solve the issue.
Never mind, letters like yours give me some hope that maybe I am doing OK after all.
Thanks again, yer a legend!
Ian
You said you tend to pass out on accelerating after braking.
Did I understand correctly - you also say that this is the time the headache comes?
1. Passing out: Since you are a professional, you will be able to understand better what I am trying to convey. When you brake or accelerate while traveling, there is an amount of whiplash movement in the neck. Have they checked your cervical spine for any problem? Also there is an artery going up 'through' the neck vertebrae on either side, and one wonders if they get kinked. One wonders if they may already be narrow? Howz your lipid profile?
Higher up as one enters the brain through the opening in the bottom of skull, there can be different set of problems, but these are usually checked by the neurologists/ spine surgeons.
Headache: If your headache starts or exacerbates on such movements, one has to consider 'cervicogenic headache' (headache caused by problems in the neck vertebrae) Sadly, cervicogenic headache is missed by many. Xrays or other imaging studies may not show anything for a diagnosis.
Imaging studies (like CT, MRI etc) can show only structural defects. Any problem with 'function' is missed. But an MRI of the cervical spine is usually asked for; especially as you have 'black-outs' and 'headaches' on sudden movements.
Glad to see you have some relief with Oxycodone.
Best,
Dr.Thomas Antony
Aden
Did I understand correctly - you also say that this is the time the headache comes?
1. Passing out: Since you are a professional, you will be able to understand better what I am trying to convey. When you brake or accelerate while traveling, there is an amount of whiplash movement in the neck. Have they checked your cervical spine for any problem? Also there is an artery going up 'through' the neck vertebrae on either side, and one wonders if they get kinked. One wonders if they may already be narrow? Howz your lipid profile?
Higher up as one enters the brain through the opening in the bottom of skull, there can be different set of problems, but these are usually checked by the neurologists/ spine surgeons.
Headache: If your headache starts or exacerbates on such movements, one has to consider 'cervicogenic headache' (headache caused by problems in the neck vertebrae) Sadly, cervicogenic headache is missed by many. Xrays or other imaging studies may not show anything for a diagnosis.
Imaging studies (like CT, MRI etc) can show only structural defects. Any problem with 'function' is missed. But an MRI of the cervical spine is usually asked for; especially as you have 'black-outs' and 'headaches' on sudden movements.
Glad to see you have some relief with Oxycodone.
Best,
Dr.Thomas Antony
Aden
I have been suffering from headache/dizziness and nausea for a month now. Mine is not continual it comes and goes, but is on more often than off. When I lay down symptoms seem to improve. I'm curious if you have experienced just the headache or was there other symptoms...aside from the passing out issue? Did you feel dizzy or nauseated?
I was seen by my doctor a month ago and he ordered a CT scan and some blood work..both came back normal. Two weeks later when I was in his office he treated me for high blood pressure. I now check my bp dailey and it is normal with medication but my headaches and accompanying issues remain.
Fight on. Your story was inspirational to me. I've only been fighting for a month. I can't imagine 20 years.
I was seen by my doctor a month ago and he ordered a CT scan and some blood work..both came back normal. Two weeks later when I was in his office he treated me for high blood pressure. I now check my bp dailey and it is normal with medication but my headaches and accompanying issues remain.
Fight on. Your story was inspirational to me. I've only been fighting for a month. I can't imagine 20 years.
I know this is a little late, but I want to let you know that you aren't alone. I have had a headache for 8 years last October. I know it's not nearly as long as yours, and I don't know how they compare, but don't give into it. You're stronger than that, and so am I. Besides, if we give into it, how will we ever find a way to fix it?
Ian,
I would like to speak with you regarding your situation. I am a 23 year old female. I have had a chronic daily migraine since December 6th, 2002. I realize this is not nearly as long as you have been suffering, but I have still had it for over 7 years and I know how exhausting it can be. My pain is located in and around my right eye. I too have had seemingly every test under the sun which have come back "normal". I have seen a pain specialist for over two years and very little brings any relief at all. I have heard of so FEW people who have anything even remotely similar to my situation. Please email me if you are willing.
I hope all is well.
Rachel
***@****
I know you are probably very busy
I would like to speak with you regarding your situation. I am a 23 year old female. I have had a chronic daily migraine since December 6th, 2002. I realize this is not nearly as long as you have been suffering, but I have still had it for over 7 years and I know how exhausting it can be. My pain is located in and around my right eye. I too have had seemingly every test under the sun which have come back "normal". I have seen a pain specialist for over two years and very little brings any relief at all. I have heard of so FEW people who have anything even remotely similar to my situation. Please email me if you are willing.
I hope all is well.
Rachel
***@****
I know you are probably very busy
I have also had a constant daily headache that at some point of everyday is 150% EXCUCIATING!!! And I also have it all of the time. Some people might think you and I are exaggerating that firgure, but I am very confident that you are telling the truth.
The 1 thing that I would like to ask you to rule out is the possibility trhat you may have a misaligned Atlas bone in your neck. Some doctor's refer to your Atlas bone as "the most important bone in the human body".
I am urging you to try and seek out an AO doctor...or Atlas Orthogonal. It took me 5 years of horrible chronic pain until my neurologist referred me to one of these specialist and IT IS THE ONLY THING/TREATMENT THAT HAS EVER GIVEN ME ANY RELIEF so I am trying to offer to you the only thiong positive that i have ever found out in my courageous and horrific battle with this ongoing condition. You might also have (like me) Trigeminal Neuralgia. Anyways I guess you (and I) aren't alone. Keep your head UP down UNDER! - C
The 1 thing that I would like to ask you to rule out is the possibility trhat you may have a misaligned Atlas bone in your neck. Some doctor's refer to your Atlas bone as "the most important bone in the human body".
I am urging you to try and seek out an AO doctor...or Atlas Orthogonal. It took me 5 years of horrible chronic pain until my neurologist referred me to one of these specialist and IT IS THE ONLY THING/TREATMENT THAT HAS EVER GIVEN ME ANY RELIEF so I am trying to offer to you the only thiong positive that i have ever found out in my courageous and horrific battle with this ongoing condition. You might also have (like me) Trigeminal Neuralgia. Anyways I guess you (and I) aren't alone. Keep your head UP down UNDER! - C
MEDICAL PROFESSIONAL
Hi Rachel,
I'm sorry to hear what you have been through for the last 7 years. Were you able to try complementary and alternative medicine such as biofeedback therapy? The National Institute of Health has conducted a lot of studies with favorable results. Take care and do keep us posted. Warm regards.
I'm sorry to hear what you have been through for the last 7 years. Were you able to try complementary and alternative medicine such as biofeedback therapy? The National Institute of Health has conducted a lot of studies with favorable results. Take care and do keep us posted. Warm regards.
Thanks for the comments re the Atlas Orthogonal.
In Australia they get a very bad write up and have some court cases pending that is a bit of a worry maybe .......................?
Like most such issues, you can Google for and find as many good reviews as you can bad reviews. Just a matter of weeding out the genuine ones and making the decision to go ahead with it.
I will most certainly do this as short of Witch Doctors, there is no branch of traditional or alternative medicine that I have yet to try!!!
Thanks again ...
In Australia they get a very bad write up and have some court cases pending that is a bit of a worry maybe .......................?
Like most such issues, you can Google for and find as many good reviews as you can bad reviews. Just a matter of weeding out the genuine ones and making the decision to go ahead with it.
I will most certainly do this as short of Witch Doctors, there is no branch of traditional or alternative medicine that I have yet to try!!!
Thanks again ...
Ian,
Have you heard of PFO or patent foramen ovale? Here is a link regarding it. It's something I've been researching for a few weeks now and maybe you should look into it too. I will definitely be keeping in touch with you and the rest of the community on here as you are very correct in saying that people stop caring and want you to "stop whining". I understand!
Let me know what you think...
http://my.clevelandclinic.org/heart/disorders/congenital/pfo.aspx
Rachel
Have you heard of PFO or patent foramen ovale? Here is a link regarding it. It's something I've been researching for a few weeks now and maybe you should look into it too. I will definitely be keeping in touch with you and the rest of the community on here as you are very correct in saying that people stop caring and want you to "stop whining". I understand!
Let me know what you think...
http://my.clevelandclinic.org/heart/disorders/congenital/pfo.aspx
Rachel
Thanks rachel,
I did a lot of Googling last night re the PFO but didn't have much success in finding any definitive link between it and headaches unfortunately.
There have been quite a few tests done but the jury is still out on the whole subject. Appears many suffers of PFO who also have migraines had a "closure" procedure done but none of them benfitted from it.
Nonetheless, I'll keep it on my watch list as even the smallest glimmer of hope is better than what I am going through now!
Thanks muchly
ian
I did a lot of Googling last night re the PFO but didn't have much success in finding any definitive link between it and headaches unfortunately.
There have been quite a few tests done but the jury is still out on the whole subject. Appears many suffers of PFO who also have migraines had a "closure" procedure done but none of them benfitted from it.
Nonetheless, I'll keep it on my watch list as even the smallest glimmer of hope is better than what I am going through now!
Thanks muchly
ian
Thanks for the info again and forgot to mention that I had some MRI tests for Trigeminal Neuralgia but they all came back negative.
This condition is pretty easy to disgnoise but I have none of the pain symptoms for it so one more crossed off the board!
I would still love to find out why I pass out when in a car that is suddenly braked and then immediately accelerated. This just has to be some sort of as blood flow/blanace condition but nobody can even suggest why it is so!
This condition is pretty easy to disgnoise but I have none of the pain symptoms for it so one more crossed off the board!
I would still love to find out why I pass out when in a car that is suddenly braked and then immediately accelerated. This just has to be some sort of as blood flow/blanace condition but nobody can even suggest why it is so!
Hey-
I've been watching this thread and finally felt good enough this morning to take a few moments to contribute. I have had a headache in the SAME location as you now for 4 years, 3 months and 2 days. I'm also in Pain management and taking oxycontin and dilaudid which reduce the intensity from a 7ish to a 3-4.
We don't know exactly why with me too. Anyways I just wanted to say hi and throw out yet one more theory. Could you have a CSF leak?
I had a CSF leak that was supposedly repaired, over a year ago. I don't think that it was fixed and I'm about to undergo another "oh joy" nuclear scan that requires a spinal. (MY third one of these and THEY SUCK)
Horse
I've been watching this thread and finally felt good enough this morning to take a few moments to contribute. I have had a headache in the SAME location as you now for 4 years, 3 months and 2 days. I'm also in Pain management and taking oxycontin and dilaudid which reduce the intensity from a 7ish to a 3-4.
We don't know exactly why with me too. Anyways I just wanted to say hi and throw out yet one more theory. Could you have a CSF leak?
I had a CSF leak that was supposedly repaired, over a year ago. I don't think that it was fixed and I'm about to undergo another "oh joy" nuclear scan that requires a spinal. (MY third one of these and THEY SUCK)
Horse
Thanks Ma'am for your reply and suggestion re CSF leak......................
Yep, this was considered many moons ago and I had all the lumbar punches, MRI's. CT scans etc. but all to no avail.
Loved those lumbar punches!!
Keep the ideas coming please folks, one of them will work one day I just know.
Yep, this was considered many moons ago and I had all the lumbar punches, MRI's. CT scans etc. but all to no avail.
Loved those lumbar punches!!
Keep the ideas coming please folks, one of them will work one day I just know.
I have been where you are. I too have been through the point where every doctor says we can't figure out what's wrong with you but we know you have pain. Until I met a pain management doctor who said if the pain is at the base of your skul the middle of your head, etc it could be occipital neuralgia and we have surgical procedures for that. In addition, we have a nerve stimulator that can be implanted that can help take away the majority of you pain. I went through the procedure and I;ve gone from having pain on a scale of 1 to 10 - a 9 every day to maybe a 2-3. It's a god send. I am not saying this is what you have I not saying this is is your saving grace. But what I am saying is do some research - see if any of the research speaks to you see if there is a doctor near you who is willing to look at you to see if this may be a possibility for you. If so, it might be your god send to. But I am saying at least talk to your doctor about it.
Misschif
Misschif
Thanks for that great reply - sadly I also had the implant in the forehad involving four days in hospital where the intensity and settings were changed regularly to strike the right one - nothing worked!
The intensity of the implant had to be so high to deaden the headache pain that the latter became preferable!!
I have been referred to a pain management clinic at a major hospital in Brisbane Australia and and hoping that maybe somehow they may be able to assist ..................................!
With all this passing out when under acceleration, there just has to be a blood flow problem/distribition somewhere, please God let it be so!
The intensity of the implant had to be so high to deaden the headache pain that the latter became preferable!!
I have been referred to a pain management clinic at a major hospital in Brisbane Australia and and hoping that maybe somehow they may be able to assist ..................................!
With all this passing out when under acceleration, there just has to be a blood flow problem/distribition somewhere, please God let it be so!
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