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Patients Speak Out: Why is it so hard to get a Diagnosis?

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You might find the results of our most recent poll shocking.  It’s common knowledge that there is frequent misdiagnosis and lack of diagnosis in the world of headache disorders.  But just how bad is the problem?

The question on our poll was this:

Once you started experiencing headache symptoms, how long was it before you got a correct diagnosis?

And here are the results:

Waiting for a proper diagnosis?

Yes, you’re seeing right.  41% of respondents answered over two years.  Another 21% still don’t feel like they have a correct diagnosis.

Now that group may or may not have been waiting for 2 or more years.  But it’s probably safe to say that about half of the people who took the poll had to wait for more than 2 years.

You probably noticed the other “problem” with the poll.  How do we know that we have a “correct” diagnosis now?  Of course that doesn’t make the situation better, only worse.  It just means that there is even more uncertainty.

When a patient doesn’t know what type of headache disorder they have (or whether there’s another underlying problem or not), they’re not likely to get the best treatment available.  They’re likely to spend time and money on extra doctor’s appointments and medication.  And they’re going to be suffering all this time from the pain of the headache itself, along with accompanying symptoms.

Why is it taking so long to get a good diagnosis?  Of course some people may delay going to the doctor, but this poll did assume that a doctor had been visited.  Is it a lack of education of medical professionals?  A lack of research?  Laziness?  Not asking the right questions?

We would love to hear your comments.  If you had to wait for the “right” diagnosis, how long did you wait?  Why do you think it took so long in your particular case?

This poll could have been designed a little better.  I mentioned some of the problems above.  Another problem was that I forgot to have an option for “6 months to 1 year”.  I’ve guessed that most people chose the closest option in my summary chart above.

Migramin Giveaway on Facebook

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As everyone should know by now, there’s going to be a Facebook giveaway happening sometime in the next week and a half!  That giveaway is the result of a generous donation from Sobek Therapeutics – four three-month supplies of Migramin, a new migraine preventative!

Migramin for Migraine Prevention

Just to clarify again – four winners will be receiving a three month supply, free of charge, courtesy of Sobek Therapeutics.

As we mentioned before, Migramin is a combination of three well-known migraine-fighting ingredients:  magnesium, feverfew, and riboflavin.

As with any medication or supplement, you may try one and find it doesn’t work – only to try a different formulation or brand of the same thing and find it works great.

That’s why the makers of Migramin have looked at some of the latest research into what actually works.  Let’s take a quick look at each ingredient:

Magnesium:  One of the most important issues with magnesium is making sure it actually gets absorbed well by the body.  That’s why some types of magnesium work and others are almost useless for migraine patients.

Migramin uses a special formulation of dimagneisum malate, which should be a lot easier on your gastrointestinal system.  It’s also much easier for your body to absorb.

Want to know another secret about Migramin?  We mentioned before that the magnesium comes in three capsules.  Why?  Because you now have the option to spread out the dosage throughout the day if you find that works better for you.

Feverfew:  Feverfew has long been helpful to migraine patients.  I talked to Dan Shollenberger, Director of Analytics at Sobek Therapeutics to find out what they did to make sure the feverfew in Migramin would help as many people with migraine as possible.  Here’s what he said:

We did an immense amount of research on feverfew.  Specifically we tried to understand why the available clinical data was very inconsistent with feverfew.  What we determined is that nearly all of the feverfew on the market is derived from a chemical extract process.  We believe that this process is inconsistent and does not capture all of the key phytochemicals present in feverfew.  We opted to go with harvesting organically grown feverfew (grown in the US) and freeze drying the material immediately after harvest.  This process yields product that is as close to the traditional “Take two leafs” dosage that was used in the most successful studies.  Additionally we standardize our dosage to ensure that the consumer is getting 543ug of parthenolide in each capsule.  Consistent dosing is a key factor in developing an effective treatment.

This special method of getting the feverfew to you may make all the difference.  The standardized parthenolide is, as most researchers know, key in providing a useful feverfew supplement.

Riboflavin (vitamin B2):  Once again, the makers of Migramin searched through clinical trials to find out what dosage of riboflavin would be the most helpful, and then searched the world to find a high quality supplier.  The result was a 400mg dosage each day.  Riboflavin is critical to energy and brain function.

Facebook giveaway

To learn more about Migramin, check out their website here.

Make sure you’re watching Facebook for your chance to win.  I’ll give you a clue – the giveaway will be happening in the next week and a half, and it will involve responding to a post on our Facebook page.

For our Facebook Fans

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Pssssst… guess what ….

Did you know that over 22 THOUSAND people have “liked” the Headache and Migraine News page on Facebook?  Did you know that there are always great conversations going on over there, about things you see on the blog, and even things you don’t see here?

I really think it’s time to say “thanks” to our Facebook users.

So sometime during the next three weeks there is going to be a prize given out on Facebook.  All you’ll have to do is be someone who likes the page, and you’ll need to follow some simple instructions.

Actually – hey – let’s make it four prizes.

Just stay tuned on our Facebook page for more instructions.  Oh, I’ll also give a little more information here on the blog about what the prizes actually are.

Why wait for Christmas?  Let’s wrap some presents…

Facebook Giveaway ... coming soon!

Things they are a-changin’ (we hope!)

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As I head into my 12th year writing about migraine and headache, I have to admit that a lot has changed.  There is more awareness, there are more treatments, and many people have written me to tell me that they either no longer suffer from migraine or chronic headache, or they suffer a lot less.

Do you experience discrimination?

But looking at our recent poll, you might not be so encouraged.  The question was Do you feel you experience discrimination at the doctor’s office because of your headache or migraine condition?

Incredibly, almost three quarters of the people who responded said that they either very often or sometimes felt discriminated against!

What are we talking about here?  Well, back in August we were reading a New York Times article, written by someone who was concerned about discrimination in the doctor’s office.  Some of the responses:

  • Angel from the USA:  I’m becoming more acutely aware of discrimination as my migraines become worse & consume more of my life… it seems like its everywhere and even though there ADA is there to protect, the people who discriminate against me treat the ADA like its a joke b/c its just not enforced. [read more]
  • Chris wrote:  I’ve had the “because you’re female” thing, with bonus “because you’re overweight”. One doctor told me I didn’t need meds, I just needed to stop gorging and lose weight and all my health issues would be resolved. He was an eye doctor, tasked with ruling out a detached retina as the cause of the sparkly lights I was seeing. I was so stunned, I couldn’t respond. Got similar treatment from a doctor who studies sleep disorders, and he was so mean about it, I left the exam room in tears (and I’m not one to cry). Needless to say, a crying jag didn’t help my migraine.  [read more]
  • Terri wrote:  Yes! Our local ER has some wonderful, caring doctors and nurses! If you have a “real” problem. Migraines? Forget about it. I have had migraines for 45 years, a trip to the ER is ONLY after 2 days of unbearable pain (and usually vomiting), only to be made to wait 3-4 hours before being seen. Then I was actually told I had a “red flag” on my name. Red Flags were codes for “drug chaser”. And I was treated for dehydration due to excessive vomiting, offered fiorinal (lol) and sent home. Oh and Heaven Forbid, you know any names of drugs that help, and those that don’t (like fiorinal). That just makes you a knowledgeable drug chaser.  [read more]

Sadly, with all the progress that has been made in the past 12 years, we still have a long way to go.  And it’s only going to happen if patients and doctors and researchers and advocates and writers and family and friends work together.  Can we do that in 2014?

Congrats, Gail! (1 Cookbook)

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The Migraine Cookbook

Congratulations to Gail in Australia, who was one of the people who has (so far) taken the time to share a recipe!  I promised to give away a cookbook once a few recipes were posted – and so here’s the first giveaway!

Gail will be receiving a copy of Michele Sharp’s The Migraine Cookbook: More than 100 Healthy and Delicious Recipes for Migraine Sufferers.

The book is available on Kindle using the link to the right.  For amazon UK, click here.

I’ll probably be giving away more cookbooks in the future, so keep those recipes rolling in!

Thanks again, Gail!

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Every effort is made to ensure the accuracy of each article, and to point you to further sources of information. However, this site is for informational purposes only and should never replace a visit to your doctor.