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World's Longest headache - 18 years!
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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_n_tn
Hi.

I am sorry that you have been suffering with this headache for 18 years, and that no one has been successful at identifying what is causing it or has been able to give your relief for it.

Since you are already in this forum, could you at least tell us what you have been experiencing with respect to the intensity and type of headache your experience? I know we may not be the best of the best but who knows, maybe one of us here could find a clue as to what's been bugging you for such a long time.

Since it started at age 46 (is this correct?), did you happen to notice any change in lifestyle or diet that you suddenly made during that time? Was there any trauma that occurred? Where exactly do you feel the headache? Does it feel superficial on the forehead, or within the skull at about the area of the center of the forehead. Is it sharp, dull, constricting, or throbbing.

Please do not give up to your condition. I am sure a lot of people here do want to help you get better.

Good luck.
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Avatar_f_tn
Hi,
With the long history that you describe and all the investigations and medications you have been through, yours must be a case of diagnostic dilemma.
Just to go over everything , so that nothing has been left - has your eyesight been checked? Has sinusitis been ruled out? Do you have a high blood pressure or diabetes?
Is your blood hemoglobin level normal?
Has a lumbar puncture been done?
Do you sleep well?
Also have you ever been prescribed magnesium - magnesium deficiency is known to cause headaches not responding to conventional medication.
Do get back to us with your progress.
Hope this helps in some way.
Good luck.
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Avatar_n_tn
God Bless You, I know how hard it is to live with a pain that people can't see - you just feel.  And this is no time to Give Up because you have come so far - the answer could be right around the corner.  First of all, remember - I don't know what doctor told you psychosomatic but it doesn't sound like he explained what that means.  Psychosomatic simply means that your brain is causing the headache on its own.  Your brain is causing the headache - but in an automatic way that you can't control.  So "just relax" - won't work for you because that would be a voluntary response and this is not voluntary.  I think that is what the doc was saying - not sure.

You didn't come here to give up - you came here to find answers so let's get started.  Unfortunately, determining treatment for an atyical headache is trial and error.  It won't be easy, it won't be fast but there are a million treatments out there and lets find you one that works or at least something that blocks the pain. So, I know you've said it a 1000 times but sorry, I have to see the pattern.  You need to list symptoms, what oscopies, what meds and reactions to them, any damage to spine in the past, WHAT HAPPENED OUT OF THE ORDINARY IN 1989.  And by the way, I love what I see of Austrailia - never been there but if I had to leave the US, that would be where I would go.  You are very articulate and I am sure you have seen some top notch specialists in Austrailia - I live somewhat in the vacinity of Barnes - Washington University.  Now they are considered the 7th best hospital in the US but I do know some neuro affiliations there so maybe it's time for a little Aussie - USA challenge.  Doctor's are bright and competitive by nature - so working across an ocean may be extraordinary enough for them to push a little harder to get those answers.  But we start with details, details and oh yes, more details.

Airbus, you don't work in the skies all day do you?  I know better than to think it is that easy but have to ask!  
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Avatar_n_tn
I JUST WANT TO SAY..... DONT GIVE UP!!!  YOUR A VERY STRONG MAN!   AND I WISH YOU NOTHING BUT THE BEST!
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Avatar_n_tn
Hey,

I'm so sorry to hear you've had a headache for 18 years. I've had a constant 24/7 headache for almost an entire year (Oct. 17th is the anniversary). For the first 6 months we had no idea what it was, I did all the same tests as you and no medicine works for me either.
I found out it was from a minor whiplash i had back in 07. I injured a muscle in my neck. I have absolutely no neck pain and any other pain other than my head. A friend of mine came across it (she's a masseuse) and slowly but surely, we're starting to get rid of the headache, lowering it from an 8 and 9 on a scale of 10 to a 3 and 4 (on the good days) through physical therapy and a chiropractor.
maybe you should check that out.
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Avatar_f_tn
Hi,

Im 17 and I've had a constant headache for nearly 2 years now and like you have had more scans and tests and medication than I care to remember and nothing was helping. I was then prescribed a drug called topiramate (topamax) which is mainly used for patients with epilepsy, but is also sometimes given to those suffering from migraines. Although what I have is not a migraine they take the edge off the pain and make it more bearable going about the day and making it to college.

I don't know if you've tried topiramate or not but I'm sure if not it would be worth asking the doctor for information. Don't give up and I hope you're feeling much better soon and hopefully your headache vanishes altogether.

Louise
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Avatar_m_tn
Hi Folks, I'm back again, and I made a mistake with the number of years I have had this headache, should be twenty years (20), had my official "birthday" of it in February this year (09)

Since then nothing has changed but many thanks for the kind words of support and advice from all!

Late last year I submitted myself to an "all or nothing" attempt to find the problem and after every Xray, CAT scan, blood test, MRI's plus the never ending visits to specialists, as expected all came back clear!!

Dear oh dear!

I have had some success with OxyContin twice daily, 40 mgs each time and this definitely provides good relief to the strage that I can live a reasonable life 75% of the time. With no side effects from the oxycontin, that is a huge leap forwards for me with the only nuisance being the small number of tablets per prescription i.e. 20.

I have a top Doctor who I have a lot of confidence in but do really dread another having to live on this medication for the rest of my life!

I sit back and hope that a more suitabloe type of pain relief will eventually become available but I still cannot stop thinking about what is the cause every day.

My next step is to investigate the weird symptom I have always had and that is passing out when I am in a car that is braked moderately and then accelerated immediately.

The severity of this is directly related to the degree of braking. With really savage braking/acceleration I completely pass out for about ten seconds whilst light applications reduce the length of time I go "walkies"!

Of course this all points at an ear balance problem but after seen several ENT specialists with numerous investigations and Xrays, none of them can explain why this happens.

This passing out feeling starts right smack in the area where my headache is worst - too coincidental isn 't it!

It may just be a red herring and have nothing to do with the headache but it is very mysterious nonetheless.

So again, thanks for the replies and if anybody has any ideas, I would love to hear them!

Cheers

Ian F
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768044_tn?1294227036
Ian,

I am so glad to hear that the OxyContin is providing some relief. I know that living on medication can seem like a pain and be very stressful... and I know that none of us want to feel as if we MUST live on medication forever... BUT, please think of it this way:

You have a very severe chronic headache. Right now, you don't know the cause. But, you have found a medication that is providing you with some relief.

What if you were born with diabetes? And let's say it's type one so you can't get out of this imaginary situation too easily by imagining you control your diabetes with diet. People who are born with diabetes type one must take insulin every day. Without insulin they usually don't live very long lives. BUT! With insulin, a person who has diabetes can do pretty much anything that anyone else can do!! Some people struggle with diabetes more than others... sometimes they have to go to diabetes specialists instead of just a regular family doctor... and sometimes they suffer from complications because of their diabetes and have to make life-style changes or take other medications as well as insulin. BUT! No one is going to tell a diabetic "well... with that medication you function fairly well... but, just think about having to take that medication EVERY DAY for the REST OF YOUR LIFE!" ... think about how many diabetics would be jumping off cliffs if we started treating them like that... insulin is a great drug that helps keep people alive!! It's not a bad thing that people should ever feel bad about having to take!

That's what my mom tells me... she is a diabetic and I have chronic headaches. Sometimes I get angry about having to take my medication... but she reminds me of that and it helps me. Now... I do NOT have chronic headaches like you so I do not for a SECOND dare to say I know what you are going through... because I do not. But, I have experienced how pain can drive one to suicidal thoughts and self-harm. I know what it is like to "lose it" in pain. When I am at a 10 out of 10, my rational brain is taken over by a very primal area of my brain... and I think I start acting like how animals in distress act... have you ever seen a cat/dog or an animal at the zoo who is in distress? They throw themselves against walls, bite off their fur... sometimes even bite off limbs. I think that when we are in severe pain, we revert to this very primal confused animal-like state. And, there is nothing we can do about that when we are at a 10 out of 10 except put ourselves in a place where we will be safe.

Now that you are on the OxyContin... and you are not always at a 10 out of 10... this is the perfect time to make sure that you will always be safe. I always have a safe plan for myself, because I know that when I am at a 10 out of 10, I will not always be able to keep myself safe alone. I think that part of letting us know that you didn't think you'd make it through the year was letting us know that you didn't feel safe... that you'd had enough. You were reaching out, and that is a GOOD THING. Please continue to reach out... but also reach out to those who can rescue you ASAP such as FAMILY MEMBERS, FRIENDS and the CLOSEST ER. Never feel afraid to dial 911... if the pain is so bad that you feel at risk of giving up, then YOUR SITUATION IS TO BE CONSIDERED AN EMERGENCY. Please don't ever doubt that. Even if they won't be able to help your pain in the hospital, they WILL be able to keep you safe until you feel like you are able to keep yourself safe again.

Now... there ARE drugs out there that are stronger than OxyContin. So... you are not on the strongest stuff YET. Which is a GOOD thing. But, it is a good idea to stay on the OxyContin, at the dose you are on, for as long as possible. And keep trying... I know you probably feel like you've seen every doctor there is... and you probably have. But... that doesn't mean that one of those doctors won't figure it out one of these days if you just keep going back!! And new doctors are graduating from med school all the time. It is frustrating... I am sure. But, please don't give up.

And I am glad you found the OxyContin. And... really, there ARE other pain medications out there... not just morphine and OxyContin. So, there is still pain relief hope past this if OxyContin ever conks out.
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Avatar_m_tn
Hi Marileew, and wow, what a wonderful and inspirational reply you posted!

You hit it right on the head that many of us have this great disappointment in ourselves for having to resort to pain killers for the forseeable future - exactly how I feel!

I think, My God, do I have to do this for the rest of my life (30+ years) and can I really do it?

I think I have got a lot better at handling the pain these days as after 20 years and no sign or hope of relief, I just have to learn to "get over it" and move on. Unfortunately it has sapped all my reserve strengths and I have lost a huge amount of motivation - everything seems to much trouble.

When I wake up, I feel someone has his hands inside my brain and is twisting it like a wringer. I then go into my dizzy mode for an hour by which time the OxyContin have started their margic and then I have to wait another eight hours or so before I can take the second one.

I loate/hate/despise having to be kept going by tablets but you are 110% correct in your logic that many other people have to take medication to keep going and the upside of all the tests is that absolutely nothing "bad" has been found in the old body from top to toe.

It seems to me my wgole day is thinking about pain, tablets, feeling wretched and totally ashamed of myself for getting in this mess - and after 20 years, most everybody, including close family have all lost their compassion and/or caring - as the human is supposed i.e. forget pain and grieving.

I also get so damn angry that it can't be found! I would rather have a viewable tumour or something so that I could fight it but this latent pain is very hard to fight, and of course with no visibloe signs of pain, very few peoploe, even doctors, really believe it exists. That is the hardest pain of all to live with!

I don't know whether to just give up fighting or keep trying to solve the issue.

Never mind, letters like yours give me some hope that maybe I am doing OK after all.

Thanks again, yer a legend!

Ian
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449909_tn?1233413497
You said you tend to pass out on accelerating after braking.
Did I understand correctly - you also say that this is the time the headache comes?

1. Passing out: Since you are a professional, you will be able to understand better what I am trying to convey. When you brake or accelerate while traveling, there is an amount of whiplash movement in the neck. Have they checked your cervical spine for any problem? Also there is an artery going up 'through' the neck vertebrae on either side, and one wonders if they get kinked. One wonders if they may already be narrow? Howz your lipid profile?

Higher up as one enters the brain through the opening in the bottom of skull, there can be  different set of problems, but these are usually checked by the neurologists/ spine surgeons.

Headache: If your headache starts or exacerbates on such movements, one has to consider 'cervicogenic headache' (headache caused by problems in the neck vertebrae) Sadly, cervicogenic headache is missed by many. Xrays or other imaging studies may not show anything for a diagnosis.

Imaging studies (like CT, MRI etc) can show only structural defects. Any problem with 'function' is missed. But an MRI of the cervical spine is usually asked for; especially as you have 'black-outs' and 'headaches' on sudden movements.

Glad to see you have some relief with Oxycodone.

Best,

Dr.Thomas Antony
Aden
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Avatar_m_tn
I have been suffering from headache/dizziness and nausea for a month now.  Mine is not continual it comes and goes, but is on more often than off.  When I lay down symptoms seem to improve.  I'm curious if you have experienced just the headache or was there other symptoms...aside from the passing out issue?  Did you feel dizzy or nauseated?

I was seen by my doctor a month ago and he ordered a CT scan and some blood work..both came back normal.  Two weeks later when I was in his office he treated me for high blood pressure.  I now check my bp dailey and it is normal with medication but my headaches and accompanying issues remain.

Fight on.  Your story was inspirational to me.  I've only been fighting for a month.  I can't imagine 20 years.
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I know this is a little late, but I want to let you know that you aren't alone. I have had a headache for 8 years last October. I know it's not nearly as long as yours, and I don't know how they compare, but don't give into it. You're stronger than that, and so am I. Besides, if we give into it, how will we ever find a way to fix it?
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Avatar_f_tn
Ian,

I would like to speak with you regarding your situation. I am a 23 year old female. I have had a chronic daily migraine since December 6th, 2002. I realize this is not nearly as long as you have been suffering, but I have still had it for over 7 years and I know how exhausting it can be. My pain is located in and around my right eye. I too have had seemingly every test under the sun which have come back "normal".  I have seen a pain specialist for over two years and very little brings any relief at all. I have heard of so FEW people who have anything even remotely similar to my situation. Please email me if you are willing.

I hope all is well.

Rachel
***@****

I know you are probably very busy
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1290794_tn?1272080479
I have also had a constant daily headache that at some point of everyday is 150% EXCUCIATING!!! And I also have it all of the time. Some people might think you and I are exaggerating that firgure, but I am very confident that you are telling the truth.

The 1 thing that I would like to ask you to rule out is the possibility trhat you may have a misaligned Atlas bone in your neck. Some doctor's refer to your Atlas bone as "the most important bone in the human body".

I am urging you to try and seek out an AO doctor...or Atlas Orthogonal. It took me 5 years of horrible chronic pain until my neurologist referred me to one of these specialist and IT IS THE ONLY THING/TREATMENT THAT HAS EVER GIVEN ME ANY RELIEF so I am trying to offer to you the only thiong positive that i have ever found out in my courageous and horrific battle with this ongoing condition. You might also have (like me) Trigeminal Neuralgia. Anyways I guess you (and I) aren't alone. Keep your head UP down UNDER! - C
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Avatar_dr_f_tn
Hi Rachel,
I'm sorry to hear what you have been through for the last 7 years. Were you able to try complementary and alternative medicine such as biofeedback therapy? The National Institute of Health has conducted a lot of studies with favorable results. Take care and do keep us posted. Warm regards.
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Avatar_m_tn
Thanks for the comments re the Atlas Orthogonal.
In Australia they get a very bad write up and have some court cases pending that is a bit of a worry maybe .......................?
Like most such issues, you can Google for and find as many good reviews as you can bad reviews. Just a matter of weeding out the genuine ones and making the decision to go ahead with it.
I will most certainly do this as short of Witch Doctors, there is no branch of traditional or alternative medicine that I have yet to try!!!
Thanks again ...
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Avatar_f_tn
Ian,

Have you heard of PFO or patent foramen ovale? Here is a link regarding it.  It's something I've been researching for a few weeks now and maybe you should look into it too. I will definitely be keeping in touch with you and the rest of the community on here as you are very correct in saying that people stop caring and want you to "stop whining". I understand!

Let me know what you think...
http://my.clevelandclinic.org/heart/disorders/congenital/pfo.aspx

Rachel


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Avatar_m_tn
Thanks rachel,

I did a lot of Googling last night re the PFO but didn't have much success in finding any definitive link between it and headaches unfortunately.

There have been quite a few tests done but the jury is still out on the whole subject. Appears many suffers of PFO who also have migraines had a "closure" procedure done but none of them benfitted from it.

Nonetheless, I'll keep it on my watch list  as even the smallest glimmer of hope is better than what I am going through now!

Thanks muchly

ian

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Avatar_m_tn
Thanks for the info again and forgot to mention that I had some MRI tests for Trigeminal Neuralgia but they all came back negative.

This condition is pretty easy to disgnoise but I have none of the pain symptoms for it so one more crossed off the board!

I would still love to find out why I pass out when in a car that is suddenly braked and then immediately accelerated. This just has to be some sort of as blood flow/blanace condition but nobody can even suggest why it is so!
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Hey-
I've been watching this thread and finally felt good enough this morning to take a few moments to contribute. I have had a headache in the SAME location as you now for 4 years, 3 months and 2 days. I'm also in Pain management and taking oxycontin and dilaudid which reduce the intensity from a 7ish to a 3-4.

We don't know exactly why with me too. Anyways I just wanted to say hi and throw out yet one more theory. Could you have a CSF leak?

I had a CSF leak that was supposedly repaired, over a year ago. I don't think that it was fixed and I'm about to undergo another "oh joy" nuclear scan that requires a spinal. (MY third one of these and THEY SUCK)

Horse
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Avatar_m_tn
Thanks Ma'am for your reply and suggestion re CSF leak......................

Yep, this was considered many moons ago and I had all the lumbar punches, MRI's. CT scans etc. but all to no avail.

Loved those lumbar punches!!

Keep the ideas coming please folks, one of them will work one day I just know.
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Avatar_f_tn
I have been where you are. I too have been through the point where every doctor says we can't figure out what's wrong with you but we know you have pain. Until I met a pain management doctor who said if the pain is at the base of your skul the middle of your head, etc it could be occipital neuralgia and we have surgical procedures for that.  In addition, we have a nerve stimulator that can be implanted that can help take away the majority of you pain. I went through the procedure and I;ve gone from having pain on a scale of 1 to 10  - a 9 every day to maybe a 2-3. It's a god send. I am not saying this is what you have I not saying this is is your saving grace. But what I am saying is do some research - see if any of the research speaks to you see if there is a doctor near you who is willing to look at you to see if this may be a possibility for you. If so, it might be your god send to.  But I am saying at least talk to your doctor about it.

Misschif
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Avatar_m_tn
Thanks for that great reply - sadly I also had the implant in the forehad involving four days in hospital where the intensity and settings were changed regularly to strike the right one - nothing worked!

The intensity of the implant had to be so high to deaden the headache pain that the latter became preferable!!

I have been referred to a pain management clinic at a major hospital in Brisbane Australia and and hoping that maybe somehow they may be able to assist ..................................!

With all this passing out when under acceleration, there just has to be a blood flow problem/distribition somewhere, please God let it be so!
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Avatar_m_tn
You should try some high level of psychiatric help. This could be mental. every time i get a headache somehow mentally i get rid of it for at least 30 seconds. But of course i wouldn't know the pain your going through.  
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Avatar_m_tn
Thanks CanBe53, much appreciated!

I have been there dun that with two psychiatrics and one psychologist all of whom gave me a clean bill of health.
Just lately I am starting to lean towards to a heart problem involving the vagus nerve that has a reputation for it;'s abilioty to cause long term headaches....................... maybe this time eh!!
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Avatar_m_tn
In a moment of sheer frustration I Googled "Longest Headache in the World" and came across this Forum for the first time. Your permanent pain level is astounding! I can sympathize with you and was delighted to read that you now have a Med which provides some relief. I am embarrassed to reveal that I have had a headache since June 1985 but at a pain level of 5-7 until October 1989 when I was prescribed Prothiedan (Dothep). Since then the pain has remained at a 3-5 level. Like you I have been frustrated by the fact that the cause is unknown. I would have not been able to lead a relatively normal life if it was not for the support of my wife who lived through the change in personality brought on by the headache. I was 41 when the headache commenced, lead a "normal" life but had to retire at 53, that was 10 years ago. I have been taking Dothep (2 x 75g daily) for 22 years, that probably is a world record in itself. You can keep your record as I score by pain level x years ie your score 8 x 18 = 144 my score 26 x 3 = 78. Remember everyone is a winner. Incidentally I am also in Australia, could our headaches be cause by too much sun? (joke)
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Avatar_m_tn
Thanks for your reply folks and to all those with suggestions, yep I have tried all of them and no joy but I really appreciate your advices.

My latest (and last) effort for relief was attending hospital five days in a row and being infused with up to 500 gms of LIDOCAINE, each dose lasting about 45 minutes.

NUFFING! Not a sign of any relief so the Docs are now convinced it is vascular.

Probably makes sense as when I wake up, there is little or no headache but the moment I start moving around back it comes with a vengeance.

But there is good news! Out with the old i.e. Oxycontin and in with the new being JURNISTA!

For ALL  you folks suffering with chronic pain, this is a magic bullet!

NO side effects at all and that includes constipation, no dependancy on it, absolutely nothing but blessed relief lasting up 24 hours as it is a slow release tablet.

If you are on any sort of tummy settling medication for reflux, ulcers then you will find the tablet is VERY slow to work as it must receive some of the tummy medication to slow it down - layman's version.

So I get the 32 Mg version, split in half (contrary to the instructions), take half first thing in the morning and the other right on two pm and have the pain well and truly under control.

I use it as a preventive and not a cure e.g. l take it right on time every day before the serious pain sets in and this works extremely well. I still get a few twinges of headache pain but nothing that I can't live with. Best news is that unlike Oxycontin, you don't get addicted to it like the other opiods though and if you ever have to come off it, they say it can be done on one or two days quite easily.

I stopped the 80 mg Oxycontin "cold turkey" and that is an experience I never want to go through again!!!

So at the moment I am a happly little black duck and have had three months of a pretty good lifestyle and whilst I get sooooooo frustrated nobody can find the problem, just knowing there is a very pain-friendly tablet out there is a huge relief!

No doubt in another five years or so, something else will come along but I suggest anbody suffering chronic pain should get their doctor to prescribe this JURNISTA asap - comes in varying strengths!
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Hello!!! I am so happy to hear you found some real relief!! I took recently googled "longest headache ever recorded" and came across this forum. I have only been suffering from pain since February 2011, BUT...the case of the inconclusive testing/lab work/imaging/confused doctors is the same. The one thing they agreed upon is that it's vascular, but one other symptom led them to discover a new hidden gem. One day, upon awakening with yet another headache solely on the right side of my forehead above the brow, I developed a hard, tender LUMP. It would last a few days and go away (although the headache remained constant). My GP (along with all of my "ologists") decided to biopsy the skin where the bump occurred. The result was ANGEOEDEMA - a subcutaneous hive!! I have hives UNDER the scalp, so no one even thought to check for allergies or sensitivities because the lumps are skin colored and not itchy or red. Its just like a skin colored golf ball on my head. But the pain is still there even when I don't have a visible lump, and the doctors think I am constantly being exposed to an allergen trigger (still unknown), that causes constant vascular inflammation in head. Right now I am on the "elimination diet", as recommended by a Functional Medicine Specialist. The idea is to remove and detox from all known inflammatory foods from the diet (gluten, sugars, caffeine, yeast, nightshades, etc...), and then re-introduce one by one in a long, slow, torturous process to see if I am sensitive to something (even as simple an ingredient as vinegar). The doc also ran a zillion blood labs and is testing heavy metal toxicity, chemical sensitivities, 180 foods, molds, etc... while we don't know what the trigger is, we do know the constant vascular headache is a bunch of inflamed hives UNDER the skin. It's a hidden, invisible reaction, which is unusual without presenting with the normal red, itchy hive symptoms. I don't have those. Just the hives beneath my right brow.

I just wanted to share this in case you haven't done a biopsy right square in the middle of your forehead to see if it comes back as Urticaria (or Angeoedema). I hope this helps, but if not, I hope your new medicine continues to bring you great relief. I will ask my doctor about your new medication as no pain killers seem to even scratch the surface of the pain. Throbbing pain from a subcutaneous hive...who would of thought?!

Stay well new friends

Please let me know if anyone has done a similar biopsy on their foreheads and discovered the hives. Thanks!!

L
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Avatar_f_tn
Yes, I am also very happy for airbus's relief with Jurnista,

HOWEVER for everyone else reading this, Jurnista is a opiod narcotic with many side effects, some of them very serious plus there are a number of medical conditions that should be considered before getting this med.

It's great that airbus has not had any side effects, but that is not  true for all.  If you have had severe migraines for years and nothing else has worked, this is worth looking at.

I'm really startled that both airbus and others comments do not mention other treatments that have helped me--nerve block injections, Botox injections, herbal Petadolex as a prophylactic plus many other prophylactics.  Plus different blood pressure meds can help.  Greatly increasing anti-depressants can greatly depress pain.  Anti-depressants are pain killers.  And recently my 5th neurologist at the University of Michigan prescribed Delpin, a different kind of Folate which he is to send me a tele number to get it for $30/month instead of the $100 plus from the pharmacy.  I also need a barbituate or opiote pain killer periodically when the migraines get severe.  All of these neurologists have helped me enormously and am currently being treated by 4 of them.

And I too have had 24/7 migraines for over 3 years since I had a bad stroke.  And they were severe the first 8 months until I got to the Univ. of MI when I got the first real help.  The first 8 months I was being addicted to opiate pain killers which just brought a vicious cycle of rebound headaches.

I tell all of my remedies again and again on this website, BUT NO ONE EVER RESPONDS having tried the nerve block injections, the Botox injections or the Petadolex.  And I have never had any explanations from Cat scans, MRI, MRAs and blood work.  But I do have severe migraines which have been helped.  Do people really want help?
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P.S. A good website that describes Jurnista is: http://bodyandhealth.canada.com/drug_info_details.asp?channel_id=0&relation_id=0&brand_name_id=5313&page_no=2

But there are many others to research this.
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Maybe it's because we haven't had the exact procedures or taken the same meds that you have???? Or maybe we had a different response?

I can't speak for anyone but myself. For me, after having a headache for over four years.....once I found a med combo that gave me excellent relief I was very very very happy. End of story. I did not pursue the issue any longer and I am sticking with what is working for me. Oh if there was something else that provides me the same relief that i get from lidocaine flushes that is practical to do I'd love it. Burt apart from ablating the nerve there is nothing else. In my case the nerve controls facial features too and I'd rather take the pills (that work) than walk around with droopy face.
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Thanks yet again to all this folk who expressed their feelings on my 24/7 pain, gave and sought advices and sadly are still suffering!

I have not given up yet, almost but not quite!

I undertook a course last year of five consecutive daily infusions of Novocaine - been around for a while - buffing, as I expected!

I have been there dine that with all the anti depressants and short if talking to whales have tried everything known to mankind.

I have an appointment with a vascular surgeon next month to see if he can work out why I pass out when I suddenly brake and immediately accelerate in a car - weird this one!

The Jurnista continue to work extremely well - 1 x 32 Mg daily - and I have not had a single side effect from them as yet. Certainly nothing like the Oxycontin I was on that very nearly killed me when I gave them away "cold turkey" - boy, that was so much fun!

A recent MRI revealed "something" deep within my brain that resembles a very old blood clot that has like dried up and left a lesion or something. I have to have a contrast MRI to see what it is all about but no Doctor would go near it owing to it's location.

So I continue to battle with the monster that has just about wrecked my life but am hoping this vascular guy may have an answer.

I'll get back here when mire is known - keep on trucking everybody!
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Hi,
I'm very glad that you have found a med combo that works for you, unlike many others on this website who are still struggling so much.  So my earlier posting doesn't apply to you.  Would also be interested in which med combo worked for you.

But I have never had any facial drooping from the nerve block injections that I've gotten every 4 weeks for the last 2 and a half years.  Nor has the neurologist ever brought up that it could cause such a thing.  So for others, don't necessarily dismiss it.  I get the nerve block injections across the whole front of my face above the eye brows, plus my temples which have never given me a problem.  
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Hi,

So glad that you are now on a different track with the MRI and vascular doctor. I would be very interested in what they find, since my migraine is thought to be caused by my brain being altered by a stroke.

Take care and hope that you continue to get better.

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Even though you have been suffering with a headache for 20+ years I really hope that the doctors are still doing everything in their power to find a cure. Do u get extremely tired or hulicinate because I had a hemiplegic migraine for three weeks straight. That's where half of your brain shuts down so te opposite half of the body goes limp and your muscles relax I am 14 and they thought that it could have been a stroke but it turns out that wasn't the case. I am completely with on how extremely frustrating it is when u have multiple MRIs cts X-rays and scans and they all come back clear. The reason I was wondering about the tiredness halucination and something else is sleep parrellyse sorry that is spelt wrong ( it's when you wake up and your awake but you can't move the rest of your body because your brain has woken up your visual senses but forgotten to wake up the rest of your body) after my migraine which they still don't no why it happened because it is a rare type I became extremely tired and was falling asleep in class and over a period of 3 weeks I clocked more than 14 hours sleep just while beig at school. They then found out that the source for the sleepiness was narcolespy. This is a chemical imbalance in the brain that causes you to fall asleep and while not treated can cause headaches but the doctors believe that narcolepsy want not the reason for the migraine. Once again I understand how bad you feel by giving yourself painkiller with no results. This happened with my migraine and headaches for the three weeks endless amounts of nurofen panadol panadol forte codeine and they even resorted to morphine with nothing subsiding the pain in the end I refused to take them because they weren't helping and at 14 I felt like I was living of things that were not doing anything and in the end harm me. It was interesting that once I went of the pain medication that my headache went away. A least in a way you are lucky because you are 65+ and being told that you need to go on medication for the rest of your life I am 14 and I have to take a pill every day for the rest of my life to balance the chemicals to stop me falling asleep. This medicine is ment to keep you awake right throughout the day but it still doesnt for me so they are thinking I might also have chronic fatigue. Hang in there and keep fighting don't give up as much as it hurts :) the doctors in aus have helped me so much and I no they won't stop searching until they find a cure for you. Narcolespy might be a pointless cause or your headache but at leat then you may able to rule it out I hope this helps in some way. Good luck and best wishes take care.
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Also have a look at dysautonomia on the web I was reading it and there was somethig about your body not responding to painkillers but there is a certain medicine that stops the pain. It's a few different anomic nerveous system disorders that are all related. It's the system that affects how the brain and the heart communicate to circulate blood around the body. One of the illnesses to do with dysautonomia is POTS just have a look at it even if it's on wikipedia it could be a cause as to why you pass out with breaking and acceleration. Just thought it might help in some why you've kept going for this long so don't give up now you are a truly inspirational person best wishes and good luck with your investigating take care.
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One final approach I recently tried out that was non-invasive and not a potent drug was simple massage therapy. It was amazing how with the simple press of a thumb, the therapist could pinpoint trigger points in my shoulder and neck muscles that correlated with pain the brow of my skull. I know we all have different types of chronic headaches, and we've all tried every pain killer under the sun. I'm under the belief that pain killers (and most potent drugs) are simply a bandaid to temporarily shield a bigger problem. Find the underlying cause, solve the problem (or at least come close). My massage therapist thinks he has pinpointed the exact muscle knots in my shoulder/neck that cause my brow to throb everyday. He actually thinks that the Angeoedema lumps I mentioned earlier are an allergic reaction to a food sensitivity, and are not related to the pain of the headache. They just happen to be located in the same area. Im not sure how much I believe they aren't related, but I thought it was worth sharing with you all in case you haven't tried a good physical massage. They really get into your muscles and it surprises me how much every muscle is connected in the body. Via massage, even the shoulder is connected to the foot (as I found out last week).

I have never gotten any botox injections or nerve-block injections because I'm trying to use less medication. I've already been through the runner with colitis related meds, Sjogrens related meds, RA related meds, migraine meds (even though I didn't have migraines). I think for some, we get to the point where we're tired of putting more toxins IN our body than OUT. I'm tired of the potent drugs, none of which touch the pain of the headache. And if these are tension headaches, then that makes sense. The muscle knots are so large and hard, it takes a lot of repetitive kneading to work out those kinks.

Really, to each their own when it comes to headache pain and relief. I am not against any treatment that brings you all relief. But just to clarify, the reason I didn't have a response to the injections question, was that I am doing everything in my power to avoid going down that road. After being on the Elimination Diet for two weeks, i have noticed a marked improvement in my joints and body aches. The headaches. I feel, are unrelated to inflammation. Via trial & error, I now believe they may be acute tension headaches. Hopefully seeing a massage therapist on a regular basis will do wonders, it's drug-free. Worth a shot.

The only other probably cause is food sensitivity or allergies within my blood, but since I cut out all of the inflammatory foods (as well as the ones which appeared positive on my "food sensitivity assay"), I have had fewer 24/7 headaches. They are not gone, but they have changed along with my body. It's like going through a major detox, but so far it seems worth the fight.

Anyway, hope that helps some of you, or perhaps you've had similar experiences. I wish you all pain free days.

L
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I'm glad to hear that the massage therapy has helped.  I constantly do firm pressure points on my neck and shoulders that I took many sessions with a physical therapist to learn them.  They are supposed to be a major factor in my migraines--the tightness there. But the tightness only goes away very temporarily.  

I got a full battery of allergy blood tests which probably cost thousands of dollars.  My main neurologist told me I didn't show any food allergies, but the last neurologist that I saw disagreed.  He said I had just slight intolerances to gluten, dairy and eggs, but in someone who is in a lot of pain, eliminating those foods could help my pain considerably.  So we'll find out as I just started.

I appreciated your other comments as well.  I don't see my injections as being substances that go into my body, since they act locally on the nerves.

Also if you're trying to avoid medications,  I also very frequently use a transdermal gel that will usually help my mild to moderate headaches.  It includes an anti-inflammatory med plus a bunch of other meds, but it does NOT go into the BLOOD stream.  Because I even asked my kidney doctor because I'm not to have any any anti-inflammatory meds.  Plus because it does NOT go into the blood stream you don't get any rebound headaches.  The same is true for a nasal lidocaine ointment, but that is not a pleasant experience, but I use it when the migraines get worse, trying to avoid the pain killer pills and then to the ER if those don't work.

If you or anyone is interested, I would be happy to supply the info for them.

Good luck to you and every one else who is suffering.
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His guys,I'm back again and the post heading now as to read twenty two years - not eighteen!

Yep, four more years of major chronic pain and depression and no results other than I recently underwent  a contrast MRI wherein they (finally) discovered thrombosis of a major vein that is fully blocked and also blocked the top of the left juggler vein.

In fact this very long vein, about three inches, is solid scar tissue apparently from blood clots I picked up many years ago and over the years has turned to scar tissue.

So, I am stuffed! No surgeon will not look at it as there is no cure, no treatment, no medication, no hope, no future and other than hoping for a quick end to my life at the age of sixty eight, my life is effectively over.

Depression, chronic pain ten out of ten 24/7 and no hope that "something" can be done or found.

The strongest of pain killers (Jurnista 32 mg) is now ineffective and the pain is unrelenting..

I hope not to be round much longer ........... Many thanks to all the folks who gave me advice and support!

My race is run

Cheers

Airbus



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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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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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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
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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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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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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!
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Mate get off the drugs!!!! I have had a cronic (chronic) 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 (chronic) 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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Hi Fellow Sufferers
For more years than I can remember I suffered from daily headaches.
I have been on a cocktail of Topomax (topamax) 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.
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Great information.  Thanks.
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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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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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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.

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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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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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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!
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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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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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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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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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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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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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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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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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