A headache that will not stop

[kckccasey]

I hope someone can help as I am begining to lose hope.  I have an almost constant headache, usually on the right side of my head but it does "travel" from time to time.  It is usally pressure, but sometimes it is burning, sometimes stabbing and sometimes it feels as if water is running INSIDE my head.  I have been to a nuerologist )2 of them, actually) a rheumoltologist (2 of them as well) an allergist and my GP.  I had a MRI and a CT scan and both were "normal."  I was taking Nifedepine for Raynauds when the 2nd nuerolgist said that was likely causing the headaches so stop taking that.  I did, no change.  Does anyone out there have any insight?  Please?!

[mle134]

For headache conditions thank God the MRI CT scan results are almost invariably normal.  There can rarely be some white matter lesions for long term uncontrolled migraine sufferers.  Docs check these to make sure you don't have an undetected aneuryism or tumor.  Always should be glad when they come back negative.

Headache disorders are difficult to diagnose because you don't have abnormal xrays or lab tests for someone to look at.  They have to go off your symptoms.

I have been diagnosed with hemicrania continua which is a non-stop headache on one side of the head that never stops.  It is hard to diagnose as regular neurologists don't see a lot of us, just headache specialists. It's sort of a cross between a migraine and a cluster headache.  My pain levels were very high, similar to cluster headaches, to the point all I could do was pace until I actually couldn't do anything but shake and writhe in pain, but many people don't get that severity with hemicrania continua (thank heavens!).  Even heavy duty pain killers don't help much, and most HC sufferers don't get the relief from oxygen that cluster headache patients do.  My blood pressure goes sky high when I'm in this kind of pain.  

For many of the hemicranias (proxysmal hemicrania, and hemicrania continua) indomethacin is the drug of choice.  It is an anti-inflammatory drug that is hard on your gi system.  It did help my pain a great deal, but also caused some bad GI complications after about a year so I had to quit taking it.  I was very sad to quit taking it.

I have an occipital stimulator that was installed in June of this year, and at about two months (a few weeks ago) started being effective in pain reduction.  Some cluster headache patients have tried it with varying degrees of success.  Occipital nerve injections did not help.

Steroids did help me short term, as did verapamil (which dropped my BP too low even at the lowest dose).  Hang in there, and don't let some doctor tell you how you feel.  I hit a few bad docs on my way to the ones I have now.  Mostly they just don't know enough about rare headaches to know how to treat or diagnose.

[kckccasey]

This is just so depressing. I had been feeling decent for the last week or so, thinking maybe I had whatever beat. Then, yesterday morning BOOM the pressure is back. Now I have felt it constantly for the past 24 hours. I'm going for a CTA scan tomorrow and, like my brunette friend, don't know what I will do if I am told all is normal. But, considering the alternatives, that is what I want to hear.

[brunette0508]

By the outcomes of my doctor visits, I dont think my doctor thinks anything is wrong. I have seen him 4 times now and been prescribed 4 different medications, all of which have not helped. I am hoping to even see a neurologist after my aug 27 appointment at my docs. My problem is telling them I want the MRI and or CT scan done. :S. I dont know how to handle it tho if they tell me things are normal. Its just too painful to be something normal. I guess i would go back to square one and eliminate all remote possibilities, eye doctor ..etc.

[kckccasey]

Since all of you seem to understand what I am going through, let me ask you something.  Once you rec'd the news that the MRI and CT scan were "normal" how did you convince yourself that indeed there was nothing about which to worry.  I have my results but I still feel that there is something wrong, that perhaps all this wondeful technology missed something...

[kckccasey]

Wow, what a post.  Thank you for all the insights.  In fact, I am going this morning to a Headache Center, hoping for a bit more than the usual "take my blood pressure, feel my head, listen to my neck and then prescribe some useless medication."
This is so strange as I never really had any problems until I started taking the Nifedipine for my Raynauds.  The doctor told me that any blood pressure medicatiuon would likely result in headaches so I am hoping that once I am off it for a few weeks, the headaches will disappear as well.

I will keep all of you posted and I thank each of you for your thoughts.  They are certainly helping me get through a most trying time.

[ChappyCH]

kckcckcck,

Two most important pieces of advice:

1) When I first sought a diagnosis, I described my pain as "constant."  Only after $30,000 and 8 years did a neuro suggest that I keep a headache log.  I logged my "pain level" throughout the day, and while I'd considered it pretty much constant I realized that it actually rose and fell in 30-90 minute cycles throughout the day, and even went away for 5-30 minutes in between.  Since you're not thinking about it every second, you won't always notice that it goes away for short periods, and how long each headache lasts.  Those are KEY to getting a proper diagnosis.  I wouldn't have been able to do it without my iPhone's notepad - just click and type-in pain level any time I noticed it changed.  

2) Go to a neurologist who is a headache specialist, and only a headache specialist.  Headache diagnosis is a tricky business - cluster headaches (my particular curse) take an average 6 years from initial symptoms and doctor visits to diagnosis.  If your doctors aren't actively pursuing a proper diagnosis, find one that will.  I had to travel to the nearest big city to find a headache specialist neurologist before I was properly diagnosed.

Now, based on your post, the one-sided (unilateral) headache is common for migraines (which literally means "half the head" in greek), cluster headaches (also one-sided, often considered a type of migraine), and hemicranias (again meaning half-the-head but in latin).  Google "international headache society classification" and you can read the "official" diagnostic criteria and symptoms for these.  It's not common, but many people with migraines and cluster headaches experience pain that "travels" to the other side - when my pain is at its worst on my left side, I'll feel short shocks and stabbings on my right side.

The description of pain as burning and stabbing are defining symptoms of cluster headaches (but maybe not exclusively).  People describe them as a burning-sword piercing behind the eye, in front of the ear, in the nose, or at the back of the head where the neck meets the skull (trigeminal nerve loci), but most of us eventually experience the pain in all of those places.  Cluster headaches typically last 15 minutes to 3 hours (although many people, including myself, have experienced very rare 5-8 hour attacks despite what the experts say).  You'll need to carefully log your headaches to see how long they last (as I said before, this is an important diagnostic criteria).  You DON'T WANT cluster headaches, so hopefully it's something else, but the severity of pain (when untreated) is described without fail as worse than childbirth.  Other symptoms include autonomic activation, which can include sweating, tearing and swelling of the eylid on the pain-side, and often sudden nasal congestion or nose-dripping.  I have experienced the sensation and sound of water running through my head, as well.  It's not listed in the typical articles and symptoms of cluster headaches, but I've posted about it in the primary clusterheadaches (add a dot and a you-know-what) forum, and found many other sufferers experience it.  It sounds and feels to me like squirting, pressure suddenly released through a pinched tube or something.  I get it when laying perfectly still watching TV, so I know it's not tendon or bone related.  And since I can both hear and feel the sensation, I know it's not an aura-type auditory hallucination.  I've been to leading headache specialists, and even they weren't aware of this.  If you have cluster headaches, then when the pain reaches a certain level you'll find yourself agitated - unable to sit still, often wanting to rock back and forth, pace around, or even bang your head.  This is in contrast to migraines, during which you'd want to remain still.  Cluster headaches do not throb - they're constant, burning, piercing, and extreme.

I've read that 20% or so of cluster headache sufferers also suffer from migraines, and I suffer from basilar migraines as well, so you may have migraine-type symptoms and cluster headache-like symptoms at other times.  Again, google "autonomic activation" and "aura" and "prodrom" to get an idea of what other symptoms are involved in various types of headaches, and add these to your headache logs.  I experienced aura symptoms years after the headaches started, and thought it was something unrelated to my pain, and even after listing symptoms that are within the list of aura and prodrome experience, neuros didn't make the connection.

The problem that I have found is that diagnostic symptoms for many types of headaches follow a broad spectrum with each individual, and some symptoms shared by many sufferers of a specific headache classification aren't even listed in the diagnostic guidelines that doctors follow.  For instance, one-sided phonophobia was recently shown in a study to affect 60% of cluster headache sufferers, vs <5% of migraine sufferers, and though I'd complained about it not one neuro or pain specialist linked it to cluster headaches.