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MS & headache: another elephant in the room
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MS & headache: another elephant in the room

How many of you suffer from headaches? Migraine and other headache syndromes are more common in pwMS than in the general population.
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Did you know if you as a person with MS you have more than a 1 in 3 chance of being a migraineur or a person who has migraine headaches?

Case study

I saw a 42-year-old woman in my MS clinic several months ago for her annual MS follow-up appointment.  When I asked her what was her main problem she volunteered severe and intractable migraine. She was getting 2-3 attacks of migraine per week and was spending one of two days of the week in bed incapacitated with severe headache, nausea and vomiting. Her migraine had not responded to standard prophylactic therapies and her response to so-called oral triptans was very unpredictable. I suspect this was because she had poor gastric emptying and vomiting and hence poor and unpredictable absorption. I started her on topiramate as prophylactic therapy for migraine, switched her to an intranasal triptan, and recommended her antiemetic and analgesics were given as suppositories rather than tablets and made her get a personal trainer to help her adhere to a regular exercise programme. Bingo! I just got an email from her saying that I had transformed her life; for the first time in over a year, her headaches are under control.

Please note that the intranasal triptans, injections and suppositories bypass the oral absorption problem that occurs in migraine. Migraine is not only a brain disease but affects the gastrointestinal tract as well with delayed and unpredictable gastric emptying.

The headache problem

How many of you suffer from headaches? Migraine and other headache syndromes are more common in pwMS than in the general population. Migraine is much more common in people who have brain disease in general. It seems as if focal pathology, particularly in the hypothalamus and brainstem areas of the brain, may trigger migraine. Roughly 35-40% of pwMS have migraine, which is about double the rate in the general population. 

In 2015 when I did a survey of our MS-blog readers I was shocked about how many of you reported suffering from migraine or tension-type/chronic daily headaches and how severe these headaches were. 

Forms response chart. Question title: Do you suffer from headaches?. Number of responses: 83 responses.
Forms response chart. Question title: How bad are your headaches?. Number of responses: 82 responses.
0 = no pain to 5 = incapacitating

The fact that migraine and headache are so common means that we should probably include headaches on our scorecards when you are reviewed annually to make sure we are not missing out on optimising your care. Clearly, headache is a very common comorbidity in MS and may be contributing to poor quality of life.

If you don’t manage migraine properly you can convert it into a chronic daily headache,  usually, as a result of analgesic misuse, that is very difficult to treat. If you have migraine or frequent headaches, please discuss this with your neurologist so that you can get proper advice and treatment for your headaches. 

To make things easier for your neurology team I suggest starting a headache diary to document the frequency and severity of your headaches and how they respond to treatments. The management of migraine is broken up into three classes of treatment; (1) prophylactic therapies, or strategies, to reduce the frequency of headaches, (2) abortive treatments to try a get rid of the migraine before it builds to a crescendo, these treatments are typically given after the onset of the headache and or aura and (3) symptomatic treatments, these treatments are given once the migraine is established, i.e. analgesics and antiemetics for nausea.

Migraine is so common that there are numerous online guides and smartphone apps to help you manage your headaches yourself. I would be interested to know if you have found any of them useful. 

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.

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