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Avatar universal

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!
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Avatar universal
Hello sir, have you ever contacted or considered contacting  Guiness World Record about certifying this headache as the world's longest? just curious...
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Avatar universal
Im sorry I know how it feels I don t know if you have tried this but I have had the Same thing for 7 years and Im 15 nothing ever helped me the doctors tried nearly every medication that I was aloud but I tried taking magnesium supplements and I took two a day I think for a year or two and they helped so much my headache used to me around 8 or 9 all day and although I had learned to ignore it I can hardly feel it its around a 1-3 some times the worst is 6. I dont know if that had been me getting used to it or not but I would suggest taking the magnesium I came off of it 1 year ago and I still have no problems and I shouldnt have but if I do then I would start taking them again. They do take a minimum of three months to get into your system but it was worth it. GOOD LUCK
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Avatar universal
You haven't tried every drug, theres just one left and at the point your at, you've got nothing to lose, so how about taking a drug nurse you spiritual life, yes prayer, to the Almighty.
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Avatar universal
I'm coming up on my second year and moved across the country so I could keep the pain in the 6-7.5 range instead of 8-9. The only way I've survived is by using my techniques as a hypnotherapist and from psychotherapy. If you want to contact me, even just to talk, my website is www.franzblauhypnosis.wordpress.com.

The doctors are trying, regular people are threatened by the knowledge that conditions like this can exist, and thank god for animals.

I think those of us with what I have to call a continuous migraine need to get together and find our own creative ways to cope. I started having auras at 5, pain at 6, so I grew up with migraines as a normal part of my development.

Susan
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Avatar universal
Sorry to hear about your hubby.  In what ways is he not supportive?  Does he think that you should be doing more than you are able to do?  Don't expect him to be saying comforting things to you.  Most husbands are not that communicative. My husband has taken me to the ER many times in the past before my Botox injections and then I also needed to wear Butrans patches to stop the ER trips. He is very understanding about my very limiting activities.  But he does not emotionalize about my pain. Let me know.  I'm here to support you 100%. There are ways that I can suggest to help your husband to be more understanding.  You take care.
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Avatar universal
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.
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596605 tn?1369946627
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
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Avatar universal
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!
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Avatar universal
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

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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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
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Avatar universal
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!
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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!
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Avatar universal
Thanks for your comments.  I am impressed that you have tried to keep working in a technical, complex and fast moving occupation.  That says a lot for you.  Good luck with your therapy sessions.  You get out of it what you spend time on the exercises outside of the session, which I'm sure you will be dedicated as your comments show. Best to you.
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2192097 tn?1338993461
It has been almost two years since I have responded to this thread.  I have had three more shunt revision surgeries for a total of five brain surgeries (Apr 2012, May 2012, Jul 2012, Feb 2013, and Jul 2013) to address my subarachnoid cyst.  The cyst was rather large (12 cm by 5cm x 6cm) which caused severe headaches, difficulty talking and significant cognitive issues.  The shunts are in place to ensure that the fluid does nto build up anymore.  The headaches are virtually gone.  I am starting therapy next week to improve my speech and improve my cognitive abilities.  I am a quality engineer that was employed at a robotics company.  I have left the robotics company and moved to a company that makes proton therapy equipment that treats cancer in hospitals.  This condition has made my home life and particularly my work life very difficult due to speech and cognitive issues that has made day to day life fairly difficult.  I have struggled to continue to work as an engineer  in very complex and fast moving environments.  However, there is light at the end of the tunnel.  I am starting physical therapy next week to help improve my speech and cognitive issues.  I am a very private person that normally does not “share” anything.  I do not use facebook, twitter or any other media.  However, I was looking for information on my condition and found this thread.  I want to share my improvement in the hope of offering some kind of hope to others in similar situations.  Airbus, I am very pleased to see the improvements in your both your physical health and mental health.  Warm Regards.        
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Avatar universal
Airbus,  What a sweet, caring message from you.  I am so glad that there is some light in your life.  God knows that it must be hard. Thanks so very much for getting back to me.  Sorry that I didn't catch it until now.

You did mention some depression in your message.  My severe depression was the most pain that I have ever endured.  The pain was so bad that I constantly bargained with myself to not commit suicide. Now my depression is controlled by an antidepressant.  And also from Klonopin which I need to take for my involuntary jerking caused by my stroke.  But it is also an anti-anxiety med which has also helped my outlook.

So if you can get any better treatment for your depression, that would make a HUGE difference in your quality of life.  It makes everything worse.  

Things have gotten a bit better for me as far as my migraines due to better placed locations and increased quantities of Botox.  Also a TENS unit has helped me.

I am truly sorry for your long road of pain.  But you are a good person.  You take care.
Sara
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
'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!
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