cluster headache

8 February 2016

Your #1 Advice For Someone Newly Diagnosed…

It might be surprising what the #1 piece of advice was – from website visitors to those who have been newly diagnosed with migraine, cluster, or another headache disorder. There are so many things that could be said.

Remember, this is from people who have been down the road, some have had a headache disorder for many, many years. They’ve made mistakes, and they’ve had success.

Headache Advice -Wondering? So what was the most common bit of advice? Keep a detailed migraine/headache diary.

They mentioned tracking things like what you eat, what the weather is like, your monthly cycle, your ups and downs. The more detail the better.

Why? One reason is that many people have drastically cut down on their symptoms by identifying triggers. That is, they find that certain foods, or weather conditions, or hairsprays, or whatever it may be, tend to bring on symptoms or make them worse.

Sometimes we’re surprised when we actually keep track and find out what those triggers actually are.

But of course a headache diary is about more than just triggers – it’s also about finding an objective way to evaluate treatments, and find overall balance.

That’s just one of the bits of advice that people gave for our latest community article. Check out the top 10 right here.

Also, don’t miss:

30 November 2015

Better Nerve Blocks for Migraine and Cluster Headache (videos)

James Discoveries & Stats, Medications, Treatments 0

As patients have found relief from sphenopalatine ganglion (SPG) blocks, researchers have been looking for ways to make the procedure easier for the patient.

The SPG block is not a new procedure. In fact, as Dr. Alexander Mauskop points out in a recent article (Sphenopalatine ganglion block for migraine and cluster headaches), it was used over a hundred years ago.

Today the research is continuing. Although the SPG block is considered a temporary solution, there is some evidence that there may be a longer term benefit, with some patients reporting that their attacks lessen even after the initial benefit of the block wears off.

But there have been problems with the procedure. Some doctors have used long Q-tips inserted in the nose, but the procedure is uncomfortable and it’s unclear how much medication actually reaches the SPG.

Sometimes needs are also used, and anesthetics.

But new devices are being developed to make the procedure a lot easier and more effective. A device is placed in the nose, and a small spaghetti sized catheter is gently released, getting the medication directly to the SPG with a minimum of discomfort.

Here are a couple of videos to check out.. The first is an actual patient with the Tx360, and the third the Tx360 again (a longer video explaining the procedure to doctors).

26 November 2015

Child with sore arm = Child with Migraine ?

James Discoveries & Stats 0

“Oh, she’s just trying to get out of going to school again.” So in spite of the supposed pain, Emma is rushed to the car and off to school she goes.

But is she really trying to avoid school? Or is the pain a sign of something more physical – like migraine?

Girl in creek We don’t usually associate sore body parts with migraine, but we should. Migraine patients know that the pain can affect the whole body.

But for some people, particularly children, there may be pain in some location – such as the stomach, an arm, or a shoulder, for example – but no headache at all, or perhaps no headache at the same time.

Abdominal migraine – most common in children, but also happening in adulthood – is well known. There may be no headache at all, but possible stomach pain, no appetite, nausea, and pallor (going pale).

But what about other parts of the body? A family case has been reported – probably a genetic trait – where a child would have recurring pain in childhood which seemed to become more typical migraine in adulthood.

We’re not just talking about any pain, of course. Most children are going to have some kind of pain, often unexplained pain.

But a study from this past September (Familial Migraine Limb Pain Syndrome (MLPS): Three Generations and Seven Year Follow-up) has shed a little more light on this type of migraine pain.

This time, the pattern could be seen in a family over three generations. The syndrome is known as migraine-limb pain syndrome (MLPS), which actually could refer to pain related to migraine or cluster.

Body pain in children - migraine? In these cases, the intensity of the pain varied. Although the pain seemed to follow a migraine pattern (temporary, often accompanied by other symptoms), it did not always occur at the same time as other symptoms.

Here are some of the observations in the study:

Pain began as early as age 8, or as late as age 30.
It lasted between 5 and 52 years.
Pain was one-sided, although the side may change in the next attack.
Headache could appear before, during, or after body pain.
In adults, some attacks included body pain, but no headache.
Most patients experienced some kind of aura at some time. Elderly people had more aura and less severe headache.
Common pain sites were an arm, shoulder, chest, and neck.
The syndrome could be inherited from only one parent.

Even during attacks of body pain, patients acted like they were having a migraine attack – that is, they wanted to withdraw, and were often pale.

The researchers note that leg pain is also a manifestation of MLPS.

Obviously, studying one family is not a massive study. However, this study is more important than it looks.

Why? Well, we already know that pain in other parts of the body is a common issue in migraine. We also know that many people don’t report – or even think about – pain in their hand or leg when they’re also dealing with migraine nausea and severe migraine headache pain.

So this issue is probably a lot bigger than we realize. And if doctors and patients were more aware, they might be able to catch migraine earlier, and find better treatment. Also, as the researchers note, they could avoid common misdiagnoses (such as pressure on a nerve, myalgic encephalopathy/chronic fatigue, and arthritis).

The good news is that typical migraine treatments seem to successfully treat MLPS.

What kind of body pain have you experienced in connection with your migraine attacks? How long did it take for you to find a proper diagnosis?

Read more at Medscape: Limb Pain May Be Unrecognized Manifestation of Migraine

9 July 2015

In the USA? Help Make This New Treatment a Reality! (Cluster Headache)

James News 0

For quite some time now we’re been talking about the hot new migraine-fighting hopefuls – CGRP antibodies. In fact, there’s a race to get these new medications to the market.

One of these drugs, now known as “LY2951742”, is being tested for cluster headache, both chronic and episodic. So if you have cluster, and you’re in the USA, you have a unique chance to get in on the cutting edge of research.

They are looking for adult volunteers, with a history of either episodic or chronic cluster headache. There is more information listed, including who to contact and how, if you click through the links above.

To find out more about CGRP, see:

1 June 2015

Could this small device delete your cluster pain?

James Discoveries & Stats, Treatments 0

What difference would it make in your life if you could delete some or all of the pain in two thirds of your cluster headache attacks? A small device, smaller than an almond, may be able to do just that.

Back in 2013 we discussed a neurostimulation device targeting the sphenopalatine ganglion, a cluster of nerves behind the nose that is closely related to both cluster and migraine pain.

The small device was used on 5000 cluster attacks over 3 years. 33 patients completed the study.

Overall, the device (called the Pulsante SPG Microstimulator System) either eliminated or reduced the pain in 68% of attacks. Within 15 minutes, pain was totally eliminated in 34% of the attacks.

Obviously we want to get rid of every attack, but for a new device treating a very difficult condition, these results are excellent. The device seemed to eliminate or reduce most pain in moderate attacks (78%), with a response rate of 59% in mild attacks and 51% in severe attacks.

So far, the device seems to be fairly safe. However, there have been some challenges – making sure the device is properly implanted, and that it stays there, for example.

But as we continue to use devices like this, we can expect to see improvement. Pulsante is already being used in Europe.

You may remember that we were talking about the sphenopalatine ganglion back in March, related to migraine pain. If minimally invasive treatments like this can significantly decrease the pain of cluster, they may have benefits for headache from migraine and other types of headache pain.

To learn more about how the device works and how it’s controlled, visit the Autonomic Technologies website. Check out information on trials, and whether you can be involved, here.

For more information on this latest report, see AAN: Facial nerve stimulator relieves cluster headaches.