World's Longest headache - 18 years!

[airbus310]

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!

[airbus310]

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

[sara12345]

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.

[porcupine27]

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

[Em6531]

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.

[Em6531]

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.

[sara12345]

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.