Aa
Update to worlds longest headache - was 18 years, now 23!
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!
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!
This helps tone down and sometimes eliminate my headaches altogether. I
It is a SKIN GEL. The ingredients of the inflammation gel that requires a special pharmacy to mix up are: Amitrityline-2%, Ketoprofen – 10%, Gabapentin – 3%, Lidocaine – 2% and Transdermal Gel – 60 g. By prescription. I use it many days of the month. No rebound headaches because it doesn't get into the blood stream. Especially helps when the migraines are milder. But of course timing is always important. Getting them early usually prevents the more serious ones. But not always.
It is a SKIN GEL. The ingredients of the inflammation gel that requires a special pharmacy to mix up are: Amitrityline-2%, Ketoprofen – 10%, Gabapentin – 3%, Lidocaine – 2% and Transdermal Gel – 60 g. By prescription. I use it many days of the month. No rebound headaches because it doesn't get into the blood stream. Especially helps when the migraines are milder. But of course timing is always important. Getting them early usually prevents the more serious ones. But not always.
Hi there Airbus, Sarah and others,
I continue to plod along with my 8 year headache that like yours has no cure.
I replied to you, Airbus,a while back on a different thread. I'm in a similar boat in terms of my hubby's diminishing support and also have a very understanding dog. My little doggy, named Peanut aka Nutty is the main source of joy in life like yours is to you.
I now see a pain psychologist which is helping some. I basically vent to her a lot, but have also learned some coping mechanisms. She was the one who suggested a companion doggy.
One suggestion I have is that you might wean off of the Junista (since it stopped working for you) and then stay off of it for a few months. Then you can restart it and it might work again. I did a wean about a year ago. I was taking 60 mg of OxyContin three times a day and 16 mg of dilaudid four times a day. LSS I weaned off and reset my clock, so to say. I am now actually getting relief again and only on 20 mg. of oxyC and take 5 mg of oxycodone no more than three a day. So yes, I will have to increase as my tolerance builds but at least I know that I can reset again when I get to high med levels that no longer work.
I've also doing Botox injections every 3 months, use ice packs, use lidocaine to do my own blocks, and get bilateral radio frequency ablations to my supra orbital and sphenopallatine nerves every six months. All of this helps a little and I am having some actual pain free days. Not many of these, but enough that I now can remember what it feels like.
When I have a good day now I spoil my peanut like crazy. The hubby tries and just doesn't get it, I get support from folks who do. Peanut helps him too!
Now I have a few head pain buddies and we talk, laugh, cry and vent with each other. It's oddly comforting to know you are not alone and that there are others who get it.
Anyways I thought I'd drop by and say hi. Also thought I'd share some things that help me.
Horselip
I continue to plod along with my 8 year headache that like yours has no cure.
I replied to you, Airbus,a while back on a different thread. I'm in a similar boat in terms of my hubby's diminishing support and also have a very understanding dog. My little doggy, named Peanut aka Nutty is the main source of joy in life like yours is to you.
I now see a pain psychologist which is helping some. I basically vent to her a lot, but have also learned some coping mechanisms. She was the one who suggested a companion doggy.
One suggestion I have is that you might wean off of the Junista (since it stopped working for you) and then stay off of it for a few months. Then you can restart it and it might work again. I did a wean about a year ago. I was taking 60 mg of OxyContin three times a day and 16 mg of dilaudid four times a day. LSS I weaned off and reset my clock, so to say. I am now actually getting relief again and only on 20 mg. of oxyC and take 5 mg of oxycodone no more than three a day. So yes, I will have to increase as my tolerance builds but at least I know that I can reset again when I get to high med levels that no longer work.
I've also doing Botox injections every 3 months, use ice packs, use lidocaine to do my own blocks, and get bilateral radio frequency ablations to my supra orbital and sphenopallatine nerves every six months. All of this helps a little and I am having some actual pain free days. Not many of these, but enough that I now can remember what it feels like.
When I have a good day now I spoil my peanut like crazy. The hubby tries and just doesn't get it, I get support from folks who do. Peanut helps him too!
Now I have a few head pain buddies and we talk, laugh, cry and vent with each other. It's oddly comforting to know you are not alone and that there are others who get it.
Anyways I thought I'd drop by and say hi. Also thought I'd share some things that help me.
Horselip
Thanks very much for your comments and sentiments!
Yeh, zillions of us chronic pain sufferers out there but the Docs eventually give up on us and just keep dealing out the drugs!
Yeh, zillions of us chronic pain sufferers out there but the Docs eventually give up on us and just keep dealing out the drugs!
Hi Sara, Yep, Serepax is the shot for me, just one of those drugs that seems to work, I never get addicted to with zero side effects. just perks me for about 6-8 hours before I take the second and last one for the day.
It is the same as Klonopin so same ingredients I guess!
You are in much worse shape than me sadly but you always cheer me up with your responses!
I have found that 100 mg of Pristiq works pretty good for me for deep seated depression and the Serepax to maker me better on the surface!
I just have to give up on the headache but it is always there in a dizzy, drowsy, sleepy WAY as well as the pain and I can drop off to sleep in a minutes notice!
I took a vita-mix tablet called Protrandim a few years back that definitely perked me up but, liker most vitamins, it's effect wore off but I have given it another try again on double the dose to see what happens. The urine test before and after I took it fgor several months was truly astonishing it the difference but doesn't mean to say it was doing any good.
The Net is alive with the Pros and Coins of it's value!
I'd eat scorpions, cobras and rattlesnakes (alive) if I could just wake up one morning without constant pain. Really gets me down and at best get three hours sleep a night that cant be doing me any good either!
Anyhow, keep on trucking and please look after yourself. Drop me a line if you are ever feeling down and out and want a chat eh?
***@****
Cheers
Ian
It is the same as Klonopin so same ingredients I guess!
You are in much worse shape than me sadly but you always cheer me up with your responses!
I have found that 100 mg of Pristiq works pretty good for me for deep seated depression and the Serepax to maker me better on the surface!
I just have to give up on the headache but it is always there in a dizzy, drowsy, sleepy WAY as well as the pain and I can drop off to sleep in a minutes notice!
I took a vita-mix tablet called Protrandim a few years back that definitely perked me up but, liker most vitamins, it's effect wore off but I have given it another try again on double the dose to see what happens. The urine test before and after I took it fgor several months was truly astonishing it the difference but doesn't mean to say it was doing any good.
The Net is alive with the Pros and Coins of it's value!
I'd eat scorpions, cobras and rattlesnakes (alive) if I could just wake up one morning without constant pain. Really gets me down and at best get three hours sleep a night that cant be doing me any good either!
Anyhow, keep on trucking and please look after yourself. Drop me a line if you are ever feeling down and out and want a chat eh?
***@****
Cheers
Ian
Oh my sweet Airbus. I'm on Pristiq too. But I'm also on Klonopin which is an anti-anxiety medication which I read that Serepax is. I need it for my involuntary jerking caused by my stroke, otherwise would not be able to sleep at all. But in the process it has taken away a mild form of anxiety that I was only vaguely aware of, but was with me constantly. And then I would suddenly have extreme anxiety about absolutely nothing. All that is now gone. So can't you get on something like Klonopin which is available in a generic?
You sound a lot better than your posting above, nearly 2 years ago. I know that you would rather be a whole lot better than you are however.
I have next to no life with all my medical problems including the 24/7 migraines plus other major pain issues. But I have made peace with it. But then I do have a wonderful husband. He has all the freedom that he wants to work on his hobbies and does all of his socializing without me. He used to get upset about me never being able to go to anything, but has gotten adjusted to it.
Forget about the better pain killers--LOL . I'm with my neurologist who keeps saying that he wishes that we could figure out how to get rid of my migraines.
I do wish you a good rum and coke. I cannot drink anything alcoholic with my Butrans patches as well as probably a bunch of other medications, but I'm with you in spirit.
You sound a lot better than your posting above, nearly 2 years ago. I know that you would rather be a whole lot better than you are however.
I have next to no life with all my medical problems including the 24/7 migraines plus other major pain issues. But I have made peace with it. But then I do have a wonderful husband. He has all the freedom that he wants to work on his hobbies and does all of his socializing without me. He used to get upset about me never being able to go to anything, but has gotten adjusted to it.
Forget about the better pain killers--LOL . I'm with my neurologist who keeps saying that he wishes that we could figure out how to get rid of my migraines.
I do wish you a good rum and coke. I cannot drink anything alcoholic with my Butrans patches as well as probably a bunch of other medications, but I'm with you in spirit.
You are my good (old) reliable supporter Sara!
Yep, tried all the patches and several treatments of Botox but surprise surprise........ No joy!
At the moment I am probably a five out of ten on the quality of life scale! Although I have been on the Jurnista 32 mg for about three years, it still helps me out a bit .......... Not a lot but OK.
I have switched my anti depression pills around, now on a great BP tablet and can get through the day not too bad.
I'm now on an anti called PRISTIQ that is working reasonably well but the old SEREPAX 30 mg twice a day is still my life saver!
Wouldn't say I'm a happy little black duck but I think I heave kind of accepted that what I am is what I am!
Keep waiting for a better pain killer to come along ............ Like squillions of others no doubt.
Funny thing is that other than the 24/7 headache I can never recall ever being sick in the last thirty if so years! All my tests come up as A1 and that frustrates the hell out of me, to feel so healthy but destroyed by the pain!
Oh well, maybe a rum and coke now might be the ticket!
Yep, tried all the patches and several treatments of Botox but surprise surprise........ No joy!
At the moment I am probably a five out of ten on the quality of life scale! Although I have been on the Jurnista 32 mg for about three years, it still helps me out a bit .......... Not a lot but OK.
I have switched my anti depression pills around, now on a great BP tablet and can get through the day not too bad.
I'm now on an anti called PRISTIQ that is working reasonably well but the old SEREPAX 30 mg twice a day is still my life saver!
Wouldn't say I'm a happy little black duck but I think I heave kind of accepted that what I am is what I am!
Keep waiting for a better pain killer to come along ............ Like squillions of others no doubt.
Funny thing is that other than the 24/7 headache I can never recall ever being sick in the last thirty if so years! All my tests come up as A1 and that frustrates the hell out of me, to feel so healthy but destroyed by the pain!
Oh well, maybe a rum and coke now might be the ticket!
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