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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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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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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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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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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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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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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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596605 tn?1369950227
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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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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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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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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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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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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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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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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1817125 tn?1316964845
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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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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596605 tn?1369950227
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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1817125 tn?1316964845
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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596605 tn?1369950227
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.
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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 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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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.
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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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9426197 tn?1417066712
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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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!
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