Update to worlds longest headache - was 18 years, now 23!

[airbus310]

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!

[airbus310]

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!

[sara12345]

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.

Sara

[airbus310]

'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!

[Eddie1994]

Dear Airbus,

Sorry to hear about your long lived headaches.  My wife suffers from them as well  and we know her triggers.  Like you much has not helped her except Maxalt MLT 10mg if caught fast enough or if they are not weather related.  

She has had success with EEG Neurofeedback.  If you want to investigate this option search engine the term ISNR Neurofeedback and that will help get you started on the subject.  Some insurers cover this treatment.  It is noninvasive and is not a drug.  If I hadn't witnessed her results I would never have believed such a treatment could work but it does.  Her three day long migraines have been reduced to less then 12 hours in many cases and for us this is a success.  She's had well over 2,500 migraine days since 1994 following post surgical brain aneurysm clipping.  I hope this treatment will help you regain some of what you have lost.  Good luck and keep me posted as I do watch this site.

[percheron]

Hey, I wanted to tell you that I think you are a very brave man.

I understand what you said, about the pain of losing the support and interest of your family being the worst of all. It´s good that you try to see things from their perspective too, to understand them, but nevertheless it must be heartbreaking.

It´s a tough world, and there is so much suffering. Unfortunately most people only realize how much others suffer when they are in pain themselves. Maybe you can use that knowledge and that empathy to help others, at least if your physical condition lets you. There are so many mistreated animals in this world, so many children in need, so many lonely people,... Helping others will make you feel good about yourself, and that might make your life more bearable, despite the pain.

I´m sorry if I sound too moralistic, I just wanted to share this thought with you because I´ve been struggling with depressions for the last 15 years (and I´m only 33), and it´s that attitude that has helped me the most, more than all those antidepressants.

You have moved me very much with your story. I wish you all the best.

[Ball123]

My sympathies for you airbus and sarah and the rest of you.
You do seem very mature and intelligent in your way of reasoning and I think that you are correct in almost all you write.

People do forget. Life is hard.

To lose friends and family to the point where you feel that there is nothing left, that is really hard.

Life ***** and there is nothing we can do about it sometimes.

You have my sympathy, for what it is worth.