Although Topamax (topiramate) has helped many patients, it is by no means the silver bullet to stop migraine.  It’s popularity has also been hampered by the side effects that some patients experience.

Of course there are many good alternatives to Topamax, but researchers are looking for something similar that will work for patients that are good candidates for something like topiramate, but who do not respond well to topiramate itself.

Zonegran - zonisamide

A study published in July (2014) investigated a drug called zonisamide as an alternative to topiramate.  In this case, patients with episodic migraine with aura were studied.  These were not patients who had severe reactions to topiramate, but who simply had not seen more than a 50% reduction of migraine attacks.

Zonisamide (sold as Zonegran)is another antiseizure drug.  Like Topamax, side effects are a common reason why patients do not continue with the treatment.  In fact, in this study 12% dropped out because of side effects such as dizziness, nausea, insomnia, and drowsiness.

In the end, however, there were two positive results.

First, many of the patients had much better success with zonisamide.  Over three months, every month things got better.

Second, side effects did actually seem to be less of a problem with zonisamide.  In particular, paresthesia (a tingling or burning feeling of the skin), one of the most common side effects in topiramate, was almost non-existent.

This is only a preliminary study.  It was open label (meaning the patients knew what they were taking), and patients directly switched to a steady dose of zonisamide (100mg/day taken in two doses).  It will be interesting to see how patients respond to different doses.

One other interesting note – some patients dropped out because they improved very quickly and decided they didn’t need more treatment!  That sounds great, although it’s too bad they didn’t understand the value of continuing the study so that the results can be measured.

Zonisamide has not been approved as a migraine medication, but this study shows that it is worth studying as an alternative preventative to Topamax.  If you’ve tried it, leave a comment and let us know how it worked for you.

Sources:
Efficacy of Zonisamide in Migraineurs with Nonresponse to Topiramate
Zonegran (Drugs.com)

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There have been some reports of patients who appear to have migraine, but who are later diagnosed with some type of vasculitis* (also known as angiitis or arteritis).

MedlinePlus describes vasculitis this way:

Vasculitis is an inflammation of the blood vessels.  It happens when the body’s immune system attacks the blood vessel by mistake.  It can happen because of an infection, a medicine, or another disease.  The cause is often unknown.

It can be very difficult to diagnose, because it’s so rare.  The symptoms can also be varied and sometimes very severe.

Vasculitis and Headache

For example, some types of vasculitis can involve the brain and spinal cord.  That may mean not only headaches but neurological symptoms like visual aura and scalp tenderness.

If you’re getting headaches or migraine-like attacks from vasculitis, they will be recurring.  Sometimes you may experience stroke-like symptoms.

Of course these could be explained by various types of migraine.  So how do I know if I may have vasculitis?

Remember, vasculitis is an umbrella term which describes a whole host of disorders (including giant cell arteritis, Takayasu’s arteritis, and granulomatosis with polyangiitis (Wegener’s)).  Usually these are diagnosed when doing testing for other diseases, or when it is suspected because of your medical history, or because of your symptoms.  And usually there will be other symptoms, such as fever, swelling of the affected part of the body, fatigue, muscle and joint pain, weight loss, and weakness or numbness.

If you’re experiencing strange or new symptoms, be sure to see your doctor.  And make sure that she knows as much of your medical history as possible (such things as – are you/were you a smoker?  Do you have asthma?  Crohn’s disease?  Any rashes?)

Depending on your symptoms and medical history, your doctor may want to do blood and urine tests, imaging tests, or even a blood vessel biopsy.

In most cases, various types of vasculitis can be treated successfully using medications that fight inflammation, such as prednisolone (Flo-Pred, Pediapred, Orapred).  If you are diagnosed and this type of therapy is successful, you may find your headache/migraine symptoms drastically decreased or even eliminated.

The bad news is that your vasculitis may go into “remission”, but the underlying condition may flare up again, bringing back the same headaches.  If you’ve had vasculitis in the past, check with your doctor to see if a flare-up is behind your headache attacks.

* Usually, vasculitis is a more specific term, whereas vasculopathy can refer to a wider range of conditions.  However, the two terms are sometimes used almost interchangeably.  In this article we’re mainly talking about specific inflammation of blood vessels, or vasculitis.

Sources:

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Using Migraine as an Excuse

by James on 15 August 2014

If you’re like me, you may have experienced a migraine attack that left you unable to stand, unable to drink water without throwing up – and attack that has left you writhing on the floor.  If you are half as sick as this, there’s little doubt that a migraine attack is a VERY good reason to not go to work.

But today we’re not talking about someone with migraine, but someone who doesn’t have migraine at all – but they still use the “I have a migraine” excuse.

The reality is that most of the migraine patients I know will push themselves to go to work if they can, to go to that family picnic even though they’re not feeling well, to do some housework even if they have to stop and lie down every few minutes.

So although there may be migraineurs out there who “use” the condition to regularly skip work when they could reasonably go, I haven’t come across any.

Calling in sick

So would someone without a migraine attack actually use it as an excuse?  Sadly, it happens.

In fact, Troy Patterson, freelance writer and regular writer for Slate.com and Spin Magazine actually recommends the “migraine excuse” to avoid embarrassing conversations.  A woman asks,“When experiencing extreme, debilitating cramps or other symptoms from menses, is it better to make up a white lie or speak the truth as to why I need to work from home?”

Mr. Patterson’s answer includes this advice:

If I were you, however, I’d avoid the subject.  Who benefits by bringing it up?  How does it harm anyone to shade over the truth here?  I think it’s OK to shroud the red tent with a white lie.

If you don’t get severe cramps every month, then you might try piggybacking on whatever bug has recently gone around the office.  Otherwise, I suggest, at the risk of overkill, concocting a migraine headache.  Migraines can last for hours or for days; they’re famously disruptive to work schedules and social calendars.  Also, it seems somehow permissible to use a migraine as an excuse because—well, I hear they’re awful, but—they’re not contagious and they don’t generally snowball into anything fatal, right?  There’s no special worry about the mortality of the migraineur.  Further, some back-on-the-envelope cultural analysis suggests some mystery and glamour to the ailment.  It’s a serious person’s malady, with a Didion tinge of thoughtful drama.

Mr. Patterson isn’t the only one to recommend “concocting a migraine headache” to avoid embarrassment.  It’s been recommended as a way to keep your boyfriend from visiting, an excuse for avoiding sex (the classic), and a sneaky way to get drugs from your doctor to get high.

I shouldn’t have to tell you that faking a migraine hurts everyone who is really experiencing debilitating migraine attacks.  But then again, maybe I do.

There are a number of things in Mr. Patterson’s answer that concern me…

  • Is this kind of lying morally right in the first place?  Mr. Patterson seems to think so.
  • “they don’t generally snowball into anything fatal” – thankfully, they usually don’t, but they sometimes do.  Migraine has been related to heart disease, stroke, depression, and suicide.  For more, read Are Migraines Dangerous?
  • “Mystery and glamour”?  On the one hand, I would be happy if that was the case.  The reality is, there’s still a lot of stigma when it comes to migraine.  Check out Those with Migraine still Stigmatized
  • “It’s a serious person’s malady, with a Didion tinge of thoughtful drama.”  Joan Didion is an American author and journalist who wrote an essay entitled “In Bed”, vividly describing her experiences with migraine.  She also talked about the then-common belief in a “migraine personality” – “ambitious, inward, intolerant of error, rather rigidly organized, perfectionist”.  But it’s impossible to pigeon-hole every migraineur as this kind of person.  Unfortunately, the idea that obsessive people tend to get migraine has added to the stigma more than to the science.

Perhaps we need to answer Mr. Patterson’s question – “How does it harm anyone to shade over the truth here?”

Saying you have a migraine headache when you don’t is very harmful, not only to the person lying but to migraine patients around the world.  Why?

  1. When some people lie, those telling the truth are more likely to be doubted and not taken seriously.  When someone has a horribly painful debilitating migraine attack, do they really need the added pressure of having to “convince” someone that it’s real?
  2. It cheapens the reality of migraine, which is actually quite serious and can lead to all kinds of physical problems, not to mention the emotional and social impact.
  3. It promotes the impression that migraine is something just to be “lived with”, when in reality migraine patients need to be getting proper treatment.
  4. Instead of adding “glamour” and “mystery” to the concept of migraine, it adds to the stigma, which means that patients are not getting the help and treatment they need.
  5. It has the potential to erode trust between employer and employee, or between any two people when one person is not being truthful.

Not to mention that the idea of “thoughtful drama” minimizes the destruction that migraine can wreak on a person’s life.  Not to mention the seriousness of menstrual migraine.

And we haven’t talked about the legal issues related to getting prescription migraine drugs on a pretense.  First, a trained doctor does have good tools to diagnose you beyond just “taking your word for it”.  Second, even if someone did get away with it, all this leads to is unnecessary restrictions on drugs.  Migraine patients may not be able to get the treatment they need when they need it, because doctors are being over-cautious that they’re coming in for a drug-fix.

We don’t want to be insensitive to women who struggle with whether or not to share about personal health issues in situations like this.  Many places have laws that protect women from having to get specific about their health issues.  But there is no excuse for an employer who feels he (or even she) must push for information when it isn’t either sensitive or necessary.

But if there is that little trust between employer and employee, will lying really help?

The bottom line for our purposes.  Does lying about migraine hurt anyone?  You better believe it.  Let’s permanently retire the “migraine” excuse for anyone who isn’t actually in the throws of a real attack.  A little honesty may make a big difference for millions who are suffering with migraine.

Thanks to Kerrie Smyres for sharing Troy Patterson’s article.  Don’t miss her comments in Use Migraine as an Excuse, Recommends Advice Columnist  You can comment on Mr. Patterson’s article by clicking the comment icon at the top or bottom.

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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.

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Migramin Follow-up (comments needed!)

by James on 9 August 2014

Back in the spring we had a giveaway on our Facebook page of the migraine-fighting supplement Migramin.  Now that some time has passed, the folks at Migramin want to hear from the winners – how was your experience?

Actually, whether you were a winner or not, if you have tried Migramin, please leave a comment and let us know how it went!

If you’d rather send a private message, you can contact Migramin here (see upper right of page) or send me a note here.

Of course, it would be helpful if we could all hear from you.  And we should show our appreciation for a company who actually wants open, honest discussion of their product.

Migramin

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