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!

[sara12345]

Again, I am so sorry to hear that nothing has helped you.  Sorry to hear that the Botox didn't help you.  It didn't help me at all until the dose was greatly increased.  Hope that you got a fair trial of it.  

Also to everyone else, I had a few pricks on my forehead for about a day or so which I proudly said was my badge of honor--showing people that I do whatever it takes to get better--LOL.  Also getting a prescription for a lidocaine cream reduced both the pain and the pinpricks from showing.  

Also the Butrans patches have helped me to stay out of the ER and allowed me to move around a bit more without the migraines getting so horrible.  Did you ever try those?  It is a narcotic.  There's always a reason to try something new if it will help your pain even just a little.  You take care.
Sara

[airbus310]

Yep, been there dun that with the Botox in the neck, forehead til I looked  like a pincushion! Had CAT Scans of neck, shoulders and nothing there to get excited about.

As  the pain is in the front of my forehead and none in the neck or other parts of head, most specialists say it would not be from neck issues.

Thanks again for your advices!

[sara12345]

Neck pain can indicate a source of your head pain.  Have you tried nerve block and trigger point injections in your head, neck and shoulders?  That has helped me a lot.  And if you have headaches at least 15 days a month, then you would be a good candidate for Botox injections which have helped me the most.  I'm assuming that you have tried at least several daily preventative migraine medications.  Let me know what they have offered to you.

[samson123456]

i think medical is advanced & day by day it will have more solution to the problems, who knows by end of year we may have solution.
i am sure u will get cured.

[alicotebrad]

I have so much empathy for you. Losing the support of your family is difficult- I stopped many years ago complaining about or discussing this issue with  my family, friends or co-workers. My boyfriend admits he does not understand and actually he says I should just quit all the doctors and medications. Maybe he is right.
What no one who is not in this situation cannot understand is the immense frustration of the run around by the physicians. Also that it is very difficult to continue to seek care when you feel like absolute crap every single day. I have to go to work, act like nothing is wrong, perform at 100% every day (I am a veterinarian) and then find time and energy to continue to seek care and try to get better.
So.... no wonder you are frustrated and simply want the pain to end. I completely get this. I have been to 6 different neurologists in the past 3 years. My head and neck pain is worse, not better.
I am hoping for a miracle at this point!

[airbus310]

And I'm still contemplating what it would be like just to not wake up one morning, pity is I wouldn't feel it would I? Wouldn't know the pleasure of it!

I've had no more tests or X-rays etc. but have been messing about with anti depressant tablets and still on 32mg Jurnista that has pretty well stopped working after almost four years of taking it now.

My nerves and emotions are completely shattered and I can't remember the last time I laughed over anything. All that keeps me going is my five year old dog who is like a third leg to me. Never lets me out of his sight and is a wonderful companion. My wife continues not to give a rats about me and I guess I can understand that after all this time. Even my doctor just treats me like a customer at the supermarket, come in, hello, here's your scripts, goodbye!

If I ask what else can be done, just get a shake of the head and nothing!

I really do fear that if anything happened to my mutt, I would end it all. I have "some tablets" stored away that I know will do the trick but too worried of what would happen to my pooch. Sad isn't it when all you have left in life is a dog! Family couldn't care less, doctors don't care, sigh, what a mess I'm in!

I go and hide in another bedroom so I won't annoy my wife when I put a nice pack on my head - that does no real good - just shut myself away from everybody!

That's is guys, I'm probably in the worse shape I've ever been in though I've had the occasional feeling sometimes I might be on the improve but it's only a temporary relief for a week or two and then all downhill again.

Bugga!