World's Longest headache - 18 years!

[airbus310]

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!

[airbus310]

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

[marileew]

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.

[airbus310]

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

[tomsant]

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

[Insuranceproaz]

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.

[M878]

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?