Update to worlds longest headache - was 18 years, now 23!
by airbus310, Jun 14, 2012
Yep, another five (5) years under my belt and now 201,500 hours of 24/7 CONTINUOUS chronic pain, about 8 to 9 on the old pain scale!

Much has happened with the end result being location of DVT in a pretty big vein deep inside my brain. Result of an old infection and now completely blocked off with old scarring and tissue.

Impossible to be treated and appears it will not kill me - damn!

No support from wife or family or who long ago lost interest, sympathy and understanding for Dad's Headache!

Off all painkillers, anti depressants now as pain is so intense and no medication works anymore.

Not afraid of dying, just afraid of living, something I hope is pretty short lived !

All that keeps me going is my dog! Sad isn't it!

When I  , half my entire adult life will have been living with chronic pain and nobody really cares about moi anymore, just mi dawg!
Member Comments (28)
by Tomr64, Jun 15, 2012
I am 47 years old and have had headaches every day all day as far back as I can remember.  Although those headaches were generally only 4-5 on the pain scale.  I incorrectly attributed the headaches to the various arthritetic joints that I have due to multiple sports injuries.  However, the headaches started escalating in Jan this year.  By the end of Jan they were at 8-9 every day all day.  I was diagnosed with an arachnoid cyst at the End of February.  I had a shunt installed to release the pressure in the cyst put in at the end of april.  The shunt inadvertently drained the cyst completely which caused my brain to collapse onto itself which in turn caused bleeding on my brain.  I have had headaches at 8-10 on the pain scale from all of april until the two weeks ago when I had the blood drained and the shunt shut off. When brain fills back up with CSF and the pressure in my brain is equalized, I will have on emore operaion where they will replace the valve in the shunt with a more appropriate value valve.  In the meantime, I have headaches the range from 5-9 on the pain scale.  I realize that while this experience is actually longer than your experience it actually pales in to the pain level.  I am posting this to show that you are not the only person who has this type of experience and there are people who understand and sympathize.    
by airbus310, Jun 16, 2012
That is truly dreadful!
I have heard of that type of medical problem and the shunt solution - when it works!
From what I read, the failure problem is disappointingly high, I really hope you can get on top of this one as you are still pretty young impaired to me at sixty eight!
Biggest ***** I have is that after a year or more, pretty well everybody stops caring about "you and your headache!"
My family don't give a rat's about mine any longer, they just keep on living and acting as if I was the healthiest and happiest guy in the world.
Of course, if you try to put on a happy face they say "oh goody, he is feeling good today........." which I ain't!
Thanks for the reply and again hope the Docs beat it next time!
by sara12345, Jun 16, 2012
Hi, I'm terribly worried about you with good reason.  

No regular prophylactic medication helped me either.  Why don't you mention any of the other treatments available?  Has no doctor tried you with Botox, nerve block injections, trigger point injections, accupuncture, food sensitivities, physical therapy, etc.

The only daily prophylactic med that helped me was an herbal medication called Petadolex, but I have been most helped by the injections.

You certainly deserve to feel pain free.   Then you can find another spouse that will care for you.  It's hard to function much to meet anyone when you're in so much pain.  

So please describe what else you have tried.  I would like to try to help you.

by airbus310, Jun 19, 2012
Apologies for being a bit skimpy with the replies and advising therein all the treatments I have tried but after 23 years, one does forget what has been tried and what hasn't but I can assure you helpful guys that short of a Witch Doctor's treatment or being impaled on the Cross, there is NOTHING I have not tried.

At last count it was approximately eighteen X-rays, nine MRI's, 1 PET scan, nuclear medicine, surgical implant into the forehead with some zappy thingo that was actually worse than the headache, brow lift (don't laugh!) too many blood tests to even try to list, EVERY arm of the medical fraternity, dental, ENT, audio, visual, balance, plus again every arm of the alternative medicine you can possibly imagine. hypnotism, accupunture (five times), massages by the dozens, sniffing stuff, swallowing stuff and on and on and on........................

Anyhow, trust me, I am off the medical merry go around for keeps. That was worse than the disease!

202,000 hours of 24/7 on the pain scale round the 7 to 10 mark every day, not a seconds relief!

At 68, I am ready to pull the pin the instant I lose mi three year old dawg, have all the tablets all packed away nicely, won't be doing it if any family member croaks as they don't give a rat's anyway, just me pooch!

Kinda sad isn't it? Retired international airline pilot whose life hangs on a dog's hair - well I though that sounded funny!

Thanks again for the advice and suggestions guys!! Much appreciated!

Pills? Yeh, don't even go there! Up to and including morphine, Pethanol by the bucket, Oxycondone, Jurnista (present one but not working anymore), morphine self injected pump ................... that's just scratching the surface!

But the greatest pain of all?????

Being dumped by the family, wife, two grown up kids, only brother and a few rellies! That is REAL pain! They all understandably got sick of old dad's headaches and now my gorgeous little three year old Maltese Poodle cross is all I have left in life.

Even the Docs have lost interest, can't blame them really!

Once I worked out that over the twenty three years I had tried about just on 400 treatments from as basic as an aspro right through to seven days of an intravenous drip of Novocaine into my arm culminating in a massive 300 mills of the stuff on the last day.

Underwent University "experimental tests", volunteered for some really savage way-off-centre trials and even looking at the above, I know I have missed dozens and dozens ........................

Even finished up in the local mental hospital one night after trying a "new and fantastic" drug (Tryleca I think ......?) that blew my brains out literally!

I'm dun people, once the pooch quits so do I, even paid for the plot!

Oh yeh, I don't need a Pyscho, know what I am about and not going down that patch again (three of them already)

Even went to a few Pain Management groups where we all sat around in a circle, clapping hands, singing and saying "I am not in pain, I can beat it!!"

Not my cup of tea!!

Just you folk all hope my mutt stays in good health 'cos I will be gone the same day as the day he quits!

Thanks again!
by Tomr64, Jun 23, 2012
I could be trite and encourage you to "hang in there" and"keep you chin up" because it is going to get better.  However, if you have had these symptoms for over 23 years, then these platitiudes are completely meaningless.  From your description, it is impossible to tell how long ago you have decided that you have suffered through enough treatments and the side effects.and will just wiat it out (so to speak).  I have one possible path that could help alleviate some of the pain and some of the mental anguish.  I am not certain where you live, but it seems that you are based in Europe somewhere.  Medical marijuana is legal in some states in the U.S.  I am not certain if this is possible where you live.  I happen to be clean (no drugs) for 25 years and sober (no alcohol) for 15 years.  Therefore, this path is not really open to me unless I ever get to the point that you are at now.  This approach will not solve your issues, but is a coping tool that could make things more bearable for a longer period of time.  Please look at the attached link below.  I hope this is somehting that could possibly provide some comfort and relief.          


I will keep you in my thoughts and prayers.  I believe that my medical condition is in the end emminently fixable and that I will not be in the position of having suffered at the level that you are suffering for such a long period of time.  Therefore, I cannot really empathize as I much as I would like.  I just  to want you to know you are not alone.
by sara12345, Jun 24, 2012
With daily migraines every day and not able to have any kind of a life, I was nearly suicidal at one point.  I had spent a lot of time at the ER.  The migraines were caused by a stroke which the doctors said I would probably have for the rest of my life.  I cried from beginning to end of my doctor's appointment, telling her that no drug could possibly help a situational problem like I had.  She wanted to me to further increase an anti-depressant that I was already taking.  I did and the depression lifted about 5 weeks later.

You sound too bitter to try anything else including anti-depressants or the Botox which has been proven to help many people, especially those that no medications have helped.  It may not have even been available over most of the 23 years that you have suffered.  And now an opiate Butran patch came out in the last year which has kept me out of the ER ever since at the 10mcg level.

But like you said, you want to be the way you are.  I am sorry for you.

by airbus310, Jun 24, 2012
Thanks not only to Sara but also the other caring folks who have taken the time  to offer advice and suggestions.

One of the reasons I didn't mention Botok as suggested is that were I to list everything I had tried over the twenty three years, the Webmaster would have a fit at the space I took up ..........

When you spend that number of years going to GP's, Specialists plus throw in all the tests, X-rays etc. with a goodly dose of medication tossed in for good luck and then exhaust the alternative medicine fields, you an really say "been there dun that" in the sure knowledge you haven't missed anything!

And your really and truly get soooooo tired of the game that eventually you just give up! Call me a quitter if you will but all my reserves are gone. I just don have the motivation to front up for another "let's try this and see if it works."

But jumping ahead a lot, you know what is the hardest aspect to handle?

The pain? Nope

The Depression? Nope

The fear of finding something bad? Nope

It is the dreadful hurt and disappointment of losing your family and friends support and understanding! That is the killer! But that is also the way of the world! Humans forget as time passes, as in grieving for a lost one! No matter how much one cares, eventually the brain goes into what I call reject mode or as some would say, denial!

My wife genuinely never gives a thought to the fact that I am suffering 24/7 on a pain sale of around the seven to eight every waking SECOND!
And she can't be blamed for his as it is natures way .......... Kids the  same, friends and rellies the same. Sure, on the day if I raise the issue (that I avoid like the plague) then there may be a momentary recognition of the suffering I am encountering but it soon passes.

And that is what really, really hurts! You desperately want others to understand the pain and/or depression you are undergoing, maybe sympathize with you a little now and then, show an interest in your problems ...... but life isn't so warm and cuddly! My ninety five year old Dad is as deaf as the proverbial post, has been for over thirty years and with a certain amount of guilt I must admit I just can't keep feeling sorry for him every second of every day. It is just too tiring!

And old people (digressing now I know) tend to become moaners! So the more he moans the more I tire of it and shut off! I have enough problems of  my own without taking on other peoples issues, called baggage I think!

And that is why the world has things called ......... Wait for it ........ FORUMS,

Because to many of us that is all we have left! Certainly we use them to seek and gain information but it is also to come across other folk who (still) care!

I'm dun!
by sara12345, Jun 24, 2012
You do show a depth of perception.  Another viewpoint is my mother's reaction to a live-in boyfriend at her home.  He has a terrible shingles condition with the herpetic complication and is too old for any treatments to work.  It is an extremely painful condition.  

When they were living together he would constantly complain and moan about his pain.  My mother was an absolute slave to him, doing everything for him, not just daily chores, but constantly calling all his doctors, writing letters to the doctors, buying him clothes, etc.  But his pain was too much for her to listen to every day because it hurt her so much, loving him the way she did.  The stress on her from this was tremendous and eventually rose her blood pressure too high, led to congestive heart failure and finally a stroke which eventually killed her.  He still lives on in pain.

We do all feel for your pain.  I do.  And people in chronic pain sometimes just can't take it and commit suicide.  But you don't reference that as your main problem.  Are there any support groups in your area for people dealing with pain?  You ought to inquire about it at your doctor's office, a senior center, or put a posting in the local newspaper for starting your own group.  I did that once for a different problem.  Even if only person responds, then you have a local buddy to share with.

I know that I am a really big PAIN in the BUTT, but I have to ask you to ask to wear the Butrans patch.  Even if it only helps your pain 10%, then that could help you.

There are many, many of us on this website with daily chronic pain which has destroyed the life as we knew it to be.  

And besides my 24/7 migraine pain, I also have fibromyalgia which causes pain all over.  Plus I am also treated for acid reflux, asthma, osteoporosis, depression, myoclonus, high homocysteine, allergies, hypothryroidism, low estrogen, bletharitis, rosacea, scalp problems, and on and on.  Also I have stroke weakness on my right side causing terrible falls, plus kidney failure from the CT scans after my stroke.  And sometimes my words come out wrong or I can't find the right word to say from my stroke aphasia.  I have no appetite so one of my biggest problems when I was so depressed was that I had to get up every day and have to eat.  That was torture.  I need 12 hours of sleep every night since my stroke or my migraines get terrible.  Heard enough??  I'll bet.  Another human reaction.

You take care.  Maybe you'll get the sympathy that you need from this site.  People do understand your pain on this site.  

But your bitterness is another issue.  I had a friend who lost his wife and three children who wanted nothing more to do with him and he had no medical issues.  He was also very bitter for a long time, but has since made new friends.  

I wish you the best.

by airbus310, Jan 11, 2014
'Choofing' means still going - I think!

Thanks particularly to Sara12345 who has been very understanding and when I see her health issues, I start to realize that maybe I am not so bad after all. And yes Sara, just listening to YOU has made a difference to my outlook on life 'cos I am marginally better as of the last year!

a) I appreciate that basically I am in really good health other than the chronic pain and moderate depression. I can't remember the last time that I was 'sick' in the sense of the word and only ever visit the Doc once a month to get some scripts filled. Never have smoked, rarely drink, tad few too many kilos but not obese and b) Having reached seventy, the number of years in front of me are a hell of a lot less than the ones behind me so have to make a BIG effort to enjoy them, far from easy!

I am still on 32 mg Jurnista daily that still works reasonably well after some three years now even though it is an opioid; plus a magic little pick-me-tablet called Serepax that is a life saviour in its ability to drag you out of the bad mood days.

Pain wise I really do think I have dropped to a 4-5 and like most chronic pain sufferers have to continually reassess myself keeping in mind 'is it as bad as I think it is?' Have accepted the fact that my wife is now just a good friend and our loving, romantic days are long since gone and I have to soldier on accepting my own mortality and the present is more important than the past!

So folks, I think I'll make it to the finishing line in a family that traditionally lives to ninety five plus , Mum still going coming up ninety six, albeit blind and barely mobile!

So, the big twenty five year headache anniversary coming up in February and the final opinion from the medical fraternity appears to be that when I was an airline pilot and whilst training in France on the the then-new Airbus aircraft in 1989, I picked up a moderate sinus infection that took on the symptoms of DVT and progressed to the stage where that part of the artery/vein plumbing in my brain has closed over during scarring etc. Coupled with a similar condition in the Venus drainage system, the old blood flow is not going in or out the right pipes and holes! That's a medical explanation for you!

My dog still continues to be my mainstay and greatest supporter in life and that is still the saddest part for meI still love my wife as much as the day I first met her but now try to see 'me' from her perspective and hence try to put on a brave face and not moan and grizzle too much!

I'll keep checking in here more regularly and Sara12345, thanks for your support, it DID work to a degree!