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Avatar universal

World's Longest headache - 18 years!

I have had a 24/7 hreadache since 1989. It is located right in the centre of my forehead and and is usually an 8 or a 9 out of 10 on the pain scale. There is no treatment, medication, drug, specialist, scan or alternative therapy treatment that I have not undergone in an effort to find the cause. The best of the best in Australia have worked on it all to no avail. MRI's by 8, CT Scans by 4 anything with "..oscopy" on the end of, anti depressants, high dosage morphine patches, not one single thing has ever look like working. It has been diganosed as not being physosymatic mainly as a result of its continuity and refusal to react to any medications.
I am 64 and in excellent health - other than this constant companion. I do not intend seeing this 2008 year out I am afraid as it has finally beaten me!
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Avatar universal
I am so very sorry! My heart and soul bleeds for you. I have had the exact same type of headache pain for 17.6 years. In the very same place. Even Botox-A didn't help. I have been completely disabled, like you, all these years.Can't plan an hour ahead let alone a day. It is 24/7. Yet I am blest it goes from 5 to a 9. I've done a lot of research, and so far, you are right. There is nothing for us. YET!  The stinking FDA holds up everything, then insurances will keep them out of reach. Every day is a temptation to let go. I have tried 2 times in the past. Of course failed. But somehow it felt wrong. I promised.never to try again. I have even broken my foot in 5 places to take the pain else where. Worked for 7 days of bliss. But I knew was wrong. So never again. I dig deep for hope and motivation every time I open my eyes. There must be a reason to go on - what I don't have a clue. But am interested enough to find out. I totally understand, but try to live past and outside the pain. It IS NOT YOU! Don't let it determine who you are or what becomes of you in the end. People do care. I DO! What you are going through - I love you deeply!
Helpful - 0
Avatar universal
That's so great!  Like you taking the Jurnista, I should have mentioned that I am also on an opiate patch called Butrans patch which also helps me.  When I just decreased it, I got daily strong migraines.  

But the lapse in any of my medical strategies triggers a major migraine.  I also take Petadolex, an herbal medication, along with Magnesium and COQ10.  When I gradually stopped all three, I got the worst migraine that I had had since my stroke.  What a deal.

Thanks again for letting us know about your great news.  It probably will take you awhile to get used to your new life.  I'm just a few years behind you.  You take care.

Sara
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Avatar universal
Yep, I'm down to the basic 50 mg per day. Take it in the morning along with a BP tablet and 1 x 32 mg Jurnista (Opioid) and I'm doing really well on this combo!

Headache gives me a tickle for a bit in the morning but soon quits and leaves me alone the rest of the day and I sleep like a log!

Take care
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Avatar universal
Yes, I thought that my migraines were better after increasing my Effexor.  Then I changed to the upgraded version of Effexor which is Pristiq to help my sex drive.  I have an unusually difficult migraine to treat since it was caused by a major stroke.  So really the Botox injections, the other injections, and the anti-inflammation work better to control the migraines than the Pristiq.

Since there is no added benefit from taking the 100 mg, have you considered decreasing it to 50 mg?  Or maybe you don't have the side effects from the higher dose.

So happy that the Pristiq has helped you.

Sara
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Avatar universal
Hi Sara! No, no, no, don't increase the Pristiq! During tests they found that increases above 50 mg daily had zero effect, in fact all it does is make any side effects worse!

Maybe you could take one morning and night but please don't go above that!

Is this med working for you? Hope so ......
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Avatar universal
Wow, what an amazing development! I really hope that your relief lasts.  I take just the 50 mg. of Pristiq.  Maybe I should increase it.  Thanks for your input.  Wish you the best.
Sara
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Avatar universal
My neck curves and tends to make my head lean backwards. It is straight while lying on the table whcih causes me to woner if test are accurate when not your normal position.
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Avatar universal
An MRI  does a 360 degrees picture of your body, head etc. so they can get a 3D look at your body part.

X-Rays not so good, just a straight look at the body part but they both serve a different purpose so that is why most Docs go for the X-Ray first and then the MRI.
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Avatar universal
It is annoying to me that MRI and X-rays are done with the area lying straight and flat, not in the position which is "normal" for you. How can these tests be totally accurate?
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Avatar universal
Yep, I have been put on an anti depressant called Pristiq and one of its unknown and somewhat miraculous side effects is to reduce headache pain, and it has!

I have been on 50 mgs twice daily and the effect has been dramatic!

The headache is now only a very minor ache on the pain scale being around 1-3 at most! To me that is like a win in the Lotto!

Occasionally I get a bit of a spike but that only lasts for a minute or so. I can very tentatively say - touch wood - that the headache has just about gone!

My biggest fear is of course that the Pristiq will eventually "wear off" and back will come the pain!

It is not an easy drug to take as, like most of them, you have to suffer through the nausea, dry mouth and feeling worse for a week or so. It took me about five weeks to get past it all but once there, it was worth every minute of it!

I am a very (very) uptight person after all those years of constant 24/7 chronic pain and now I have to work on getting my old happy self back again. Won't be easy but at least I am now fighting off the front foot!

Thanks for all the replies and advice!

I hope NOT to be back! Watch this space!
Helpful - 0
9426197 tn?1417063112
What an interesting feeling to find this thread. I am not alone, 12 years here. Started with a tiny li'l thing and has been progressing ever since. Little rough at this point, but amazing what one can endure when given time to adapt. Doc's can't seem to find a cause and from what I read there seems to be little relief out there. Starting with a new Doc and taking another shot at finding some relief. The noggin is a funny thing, though I stopped laughing to hard about my headaches years ago. 55 now, if it continues to progress at the rate it has I can't imagine what it will be like in another 12 years. I figure on being around to find out though.
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Avatar universal
Certainly pleased to relinquish my position as worlds longest headache! So sorry to hear of yours as I know the pain and frustrations you must be suffering.

I put my original post up in '09 I think, I have now notched up twenty five years!
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Avatar universal
I have you beat by 3 years- my skull was smashed (smash means too many fractures to count) on Sept 11 1986. 4 reconstruction surgeries, and 24/7 8-10 pain. When I hit a 10 I have a grand mal seizure.

Sorry, but you do not have the world's longest headache and you never did.

Also there is a French woman that beat me- 52 IIRC years until she committed suicide.

Helpful - 0
Avatar universal
There must be a solution. Can you get to a Mayo?  I have a friend who has chronic pain and she was given a pain pump implanted in her abdomen over 10 years ago...full of a variety of pain meds...one only available in these pumps (comes from a rare fish in the sea). Prialt or something...1000 times more powerful than morphine or something. She goes into her doctor every other month to have the pump refilled via a needle insertion to a port on the pump. Please ask about that. Taking your own life is never the answer because I've heard say you take those problems with you. God Bless you...I pray your docs find an answer for you!
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Avatar universal
I've had a headache since I can remember. My Mom told me, that after I started walking, but before I could talk, I would constantly hit my head against the wall. Before that, I would cry most of the time, every day. I was diagnosed with Paroxysmal Hemicrania Continua, when I was 35. (Sharp Stabbing Pain On One Side Of The Head, All The Time). Indomethacin will take the edge off, but it doesn't get rid of it. Not counting the first 5 years of my life, because I don't remember much in that time... I guess I've had a Headache for about 52 years, 8.5 months.
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Avatar universal
Great information.  Thanks.
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Avatar universal
Hi Fellow Sufferers
For more years than I can remember I suffered from daily headaches.
I have been on a cocktail of Topomax and Prothiadine with opioid pain relief for many years and have been adversely effected by them but they gave me some relief.
Recently from left field I was diagnosed with a blockage in a coronary artery which was stented RESULT: daily headaches are gone.
My cardiologist has had one other patient like me.
My neurologist does not believe that it is possible.
My heart was a key.
Helpful - 0
Avatar universal
Mate get off the drugs!!!! I have had a cronic headache for 23 years at a similar level to what you describe and have been down the drug path. They weaken you in everyway! They make pain worse in the end and destroy your natural endorphine response, they destroy all your natural copping mechanisms. The only thing i take is Naltrexone - Very low levels that raise your natural endorphine levels. It does help. Coming off the drugs is extreme and takes courage and time but behind the veil of their supression is you! It is incrediable what you are capable of when you clear yourself and dont let the fear take you anymore. This is my experience. I am now 50 and struggle everyday and night but have found my own management with chiropractic treatment. Like you i have had all the test, nerve blocks etc but the most powerful thing is crying and let the grief that cronic pain brings surface and be expelled everyday. Pain loves to be retained and recycled. Fear is the mixing stick-grieving(talk to someone not in your family) and no painkillers will position to deal with this incrediably poweful foe. P.S. Been in that same pain clinic too-stuck cortizone into me! Didnt help either.
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Avatar universal
Hi folks and once again than ks to all the wonderful members who have given me really helpful advices to date, beingh twenty four years on Feb 16h. 2014, that I hope I don't make!

Nothing has changed as the Jurnista that I once found pretty, I have now become tolerant to and nothing else is available. No way would I ever go back onto oxycontin as the withdrawal from that little guy was somnething out of this world. Never ever again!

So folks, I am beaten (still, again, once more ......!) there is not a single solitary sign of a treatment for what appears an incurable headache that has been with me every second of every day of every year for the above time!

Whilst the pain level is about a constant of 7, it is the 24/7 bit that is killing me. I would LOVE to have an ordinary old garden type migraine because at least they do go away for awhile and you get a break from the pain.

Hopefully everybody understands and appreciates I am at the bottem of the depression barrel and whilst some of the medication I am on helps me through the day, my quality of life is just below zero!

I cannot recall the last time I have woken up and felt like life is good and I feel like living!

What a way to go eh! Possibly 45 years of chronic pain, non stop .............. yeh!
Helpful - 0
Avatar universal
Thanks sara, apologies for being tardy in getting back to you, fact is life is crap for me now and I just stagger from day to day to day ............. I had a good read of your suggested treatment but it appears to be related primarily to being BEFORE knee replacement surgery?

I couldn't find a link between it and my headache issue nor could my GP but I really appreciate the advice all the same.
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Avatar universal
Hi Sara,
I just came across this forum while doing some research on migraine treatments and i am very interested in the strategies you have been using to treat your migraines.  I have been getting Botox injections for about 2 years and while i originally found them to be helpful, they seem to have lost their effectiveness.

I am currently taking Gabapentin, Imitrex, Zanaflex, Dilaudid, Paxil and Atenolol and i still have daily migraines/headaches.  A change o.f direction is needed because my current treatment plan is just not working. I see a migraine/tmj specialist and have been diagnosed with classic and cluster migraines as well as TMJ.

I would like to hear more about the nerve blocks, the migraine gel and allergy testing  that you are doing.  Would you be willing to share some more information with me?
Thanks
Julia
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596605 tn?1369946627
Well you finally find out the cause. Too bad it it cannot be repaired.
So sorry. Hope is what keeps many of us going.
I understand and I am so so sorry that nothing can be done.
You deserve to be out of this unrelenting pain.
Horselip
Helpful - 0
Avatar universal
Sorry I hit the wrong button apparently and got ended early.

I feel so badly for you.  But, have you tried the treatment above?  Please try to find someone who can provide it to you.  Please don't give up quite yet.  You have all my caring sent your way.

Sara
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Avatar universal
So your thrombosis is the cause of the migraines?  There is one last thing that I think that you have not tried.  I don't remember where I found the following quote, but it sounded like something truly unique.

"Hi, I have been suffering from migraines for approximately 13yrs, been thru just about every drug, narcotic and non-narcotic there is out there!  Been from neurologist to neurologist to psychiatrist, u name it, I have problem been to them.  Had all the scans and test possible.  I finally found a Dr that has helped me, grant it, I still suffer from migraines, but not as often.  I went from going to the ER from 2-3 times a month, to maybe once every 2-3 months.  I see a sports medicine dr.  He has given me Trigger Point Injections into my muscles in my neck and back, its just lidocaine and sugar water, but it relaxes the muscles.  Also, have had PRP, Plasma Replacement Prolotherapy, they take ur plasma and mix it with lidocaine and inject it into ur muscles, spine and other areas....this helps to heal and attack inflammation, with ur own plasma, so ur body accepts it.  It has worked miracles for me. Prior to this, I have had Botox, Nerve Blocks, Nerve conductor test....u name it, this is the closest thing I have gotten to relief, and it is NON-NARCOTIC!   It is not putting a band aid on it, he is getting down to the root of the problem.  I live in Louisiana, but I'm sure u can do research and find someone in your area that can help you!  Hey, it cant hurt to try!  Good luck!"

Why don't you give it a try?  You are still so young.  I'm just a few years younger than you are.  I can't blame you for wanting it all to end.  I've been suicidal after only 3 years of the chronic pain.  Now doing better.  
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