By Dr. Jack Burks
Chief Medical Officer for MSAA
What is the Cause of My Daily Headaches?
Q: I was diagnosed with MS in 1994 and have been having daily headaches since last summer. In addition to my regular doctor, I have seen two neurologists as well as an ear, nose, and throat (ENT) specialist. I have had SEVERAL magnetic resonance imaging (MRI) scans, computed tomography (CT or “CAT”) scans, and magnetic resonance angiogram (MRA) tests, and nothing has come up as to why I am having these headaches. Can you give me any direction?
A: Headaches can be caused by any number of factors, and without knowing all of your specific symptoms and giving you a complete exam, I am not able to suggest any specific diagnosis. However, one mistake is that many people with MS automatically assume that any new issue may be attributed to their MS, and this is not always true. A headache, or any other new problem that arises, needs to be fully investigated to see what the actual cause may be.
Here are some examples of the wide variety of possible causes: headaches can be a dull ache at the back of the head and possibly caused by arthritis in the neck; some individuals with MS experience trigeminal neuralgia, which is a sharp facial pain brought on by a light touch or movement, and they may refer to this as a headache; if nausea and vomiting are present, or if your vision is affected, these can be signs of a migraine or vascular involvement; food allergies or caffeine are other types of common causes. Additionally, one’s emotions can also be involved. Anxiety and depression are among the most common causes of headaches. But please keep in mind that these are just a few examples of the countless types and causes of headaches, and I can’t begin to identify what may specifically be causing your daily headaches for the past year.
What I can tell you is that if you haven’t done so already, the next step in the process of finding out what is causing your headaches is to see a headache expert. This is usually a neurologist who specializes in the diagnosis and treatment of headaches. Your neurologist may be able to recommend someone, or you may be able to find one through the National Headache Foundation’s (NHF) physician finder. The website for the NHF is www.headaches.org, and you can also find a great deal of information on their site as well.
When seeing a headache specialist, he or she can find out about your symptoms specifically, and through tests, rule out many causes. You have already undergone several tests – so you already know what is NOT causing your headaches – and this is a great start. Sometimes a doctor will suggest that you keep a pain diary (mentioned on page 8 of the cover story’s section on pain). This may help to provide more specifics on how the pain feels, where and when it occurs, and if it may be related to any type of activity. Sometimes a food diary, sleep diary, or other information can help provide direction for the specialist you are seeing.
Q: In the last issue, you answered a question regarding the appropriateness of stopping treatment with an MS disease-modifying therapy (DMT), since the questioner was not experiencing relapses. I thought my experience doing (almost) just that might add some anecdotal data.
I have been on my DMT since the mid-1990s. I switched doctors after a change in residence six years later. I had been free of both relapses and new lesions during those six years.
My new doctor put me on a different medication, and I thought this would be okay. After two months into my new treatment, I had an exacerbation involving leg spasms, especially when trying to sleep. This is an issue that’s still resolving itself to this day, more than a decade later.
I had to assert myself to get back to my original DMT afterwards, and I continue to be relapse and “new-lesion” free. I changed my doctor years later, however, and the new doctor I was trying out began tests and believed that my MS must have gone away, that my success couldn’t be due to the long-term medication I was taking.
I didn’t want to wait around to see his next big idea, as I had seen that “show” before. Long story short, like you said, “if it’s not broken, don’t fix it.” Clearly it is up to the individual to educate himself, ask many questions, and don’t be afraid to change doctors.
A: Thank you for your illustrious example that may help a number of people going through the same circumstances. We don’t know the precise mechanism that causes damage in MS or exactly why certain drugs may help one individual and not another, but we do know that many of the drugs have different mechanisms by which they work.
If someone finds that his or her MS is totally responsive to one drug, as in your case, the decision to switch to a different drug with a different mechanism, should be weighed very carefully before making a change. Your experience of an attack after six event-free years is a reminder that you don’t get rid of MS, and that you need to continuously stay on a therapy that is right for you.
Q: I have a strange question. My mother is having a hard time with the fact that I have MS. She simply wants it cured. She has a friend whom she works with, who also has a daughter with MS. Apparently, this young lady went to the Mayo Clinic and had her blood switched with “non-MS blood” I suppose. Is there any truth to this? I am going to stay with my mother for a week due to my being “laid-off” (fired) because of the MS. I just want to know the facts before we fight over this.
A: I agree with your mother, I want to cure MS too! However, at this time, not even the Mayo Clinic has a cure for MS. The good news is that treatments for MS are becoming more numerous and patients who stay under treatment are doing much better than before these treatments were introduced. For individuals with progressive forms of MS, research is ongoing to find effective treatments – and hopefully, new DMTs for this type of MS will soon be on their way to larger trials and eventually approval by the Food and Drug Administration (FDA).
Regarding the daughter of your mother’s friend, I assume she may be referring to plasmapheresis, also known as “plasma exchange,” which is occasionally used to treat a severe relapse. This is a procedure that extracts blood from the patient, sends it through a machine, and returns the blood to the body. Plasmapheresis works by removing or diluting elements of the plasma in the blood that may contain antibodies, which can increase the damage caused by MS.
This is not a long-term treatment for MS, nor is it a cure. It is usually used after steroids and the hormone ACTH have proven unsuccessful in treating an MS relapse. The effects of plasmapheresis are temporary, but it helps some patients to recover from a serious MS flare-up more quickly.
I would direct your mother to MSAA’s website (mymsaa.org) so she may get a better understanding of MS and its treatments. Your mother may even benefit from counseling to help her adapt to the fact that MS (at this time) may not be cured. My best advice is to focus on your quality of life, reduce MS relapses, and know that positive family relationships are vital to one’s long-term happiness.
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Dr. Jack Burks is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies and advises patients, families, MS organizations, and healthcare groups. Dr. Burks is a clinical professor of neurology at the Florida International University in Miami. He has written and edited three MS textbooks, as well as numerous chapters and articles on MS.