If you're interested in hearing thoughts and expertise from the headache and neuro-ophthalmology neurologist Kathleen B. Digre, MD, check out this Q&A from the latest Talks with Docs event!
During this Zoom event, Dr. Digre, a headache and neuro-ophthalmology specialist, gave a presentation called “Headache and Vision—The Marriage of Headache Medicine and Neuro-Ophthalmology.” This was followed by a Q&A session. If you were unable to attend, or if you were unable to get an answer during the live session, don’t worry—Dr. Digre gathered your questions and prepared a series of thoughtful responses, found below.
Questions and Answers
Q: When I was younger, I got true migraines with auras, but after a brain blood clot, I didn’t get them until three years ago, and I only get these terrible headaches while asleep. I am completing a headache questionnaire now for the University of Utah. What is your opinion as to what is leading to these headaches? I can be nauseated the following day.
A: Nocturnal headaches can be due to many things—so YES, you should have these evaluated. Sometimes they are benign (for example, caffeine before bedtime can prevent) but sometimes, they are related to other processes. So PLEASE get these evaluated.
Q: I have headaches with severe pain in my forehead. Would this be IIH?
A: Headache alone is not a sign of IIH. See your ophthalmologist and have your eyes checked for swelling or other problems. See a neurologist or primary care provider (PCP) for diagnosis, then prevention and treatment of headache.
Q: I have had strong and long-term after images since I was a teenager. If I look long enough at a non-moving person, it will even appear to me that they have a halo. Is this related to migraines?
A: It can be related to a very sensitive migraine brain—if everything else is normal in your eye exam and neurological examination, it could be related to your sensitive visual brain related to migraine.
Q: I’ve had migraine headaches since I was a child. I was recently diagnosed with POTS, fibromyalgia, and rosacea all within the last two years. Can my migraines be associated with those conditions? I get the vertigo, light sensitivity, double vision, and I’ve had eye pain before and after migraine. I’m just not sure how to treat all of these issues at once.
A: Migraine has many co-morbidities, including POTS, fibromyalgia, vertigo, light sensitivity, and eye pain; all also can be related to migraine. Discuss this with your PCP and see a neurologist to get the right diagnosis and treatment.
Q: I am on Vyepti infusions, and I have Zomig rescue meds as well as Nurtec rescue meds. Nurtec doesn’t seem to do much at all. Would Ubrelvy be helpful if Nurtec isn’t helping?
A: Everyone is different, so, if one medication doesn’t work, trying another is possibly helpful. Sometimes the class of drug won’t work. Discuss this with your provider.
Q: I have had continuous migraine since 2019. The past six weeks, I’ve had double vision in my left eye. There is some eye pain, but the main complaint is difficulty in focusing and seeing clearly. My eye doctor doesn’t see a problem. Should I be worried?
A: Monocular double vision (only in one eye) IS related to the eye—the most common cause is dry eye. See an OPHTHALMOLOGIST to get a proper diagnosis and check for dry eye.
Q: I have had episodes of visual disturbance during which things feel farther away or closer than they should. Is this indicative of Alice in Wonderland Syndrome? Can it present in this way?
A: Some visual disturbances like you are describing can be migraine; you should discuss this with your primary care provider. If the visual disturbance is followed by a headache and it isn’t continuous, it is likely migraine related.
Q: Does dry eye being treated with Restatis still cause some visual difficulty?
A: Sometimes Restasis can cause eye pain. Usually, it shouldn’t cause trouble seeing. Discuss this with your ophthalmologist.
Q: I have primary progressive MS with optic neuritis damage in one eye, seemingly getting worse by year. Now I’ve been diagnosed with glaucoma and I am on drops. Is this coincidental or does it come with age (61)?
A: This is a tough question, since they can be simply coincidental. When someone has repeated or progressive optic neuropathy, it can look like glaucoma. Discuss this with your ophthalmologist.
Q: I have migraine and severe photophobia. I am finding Emgality helps better than Ajovy with head pain, but nothing has helped with eye pressure or the very odd symptom of extreme neck pain. Do you have any ideas on what can help with pain radiating down the neck muscles? Mine starts when I am in fluorescent light and nothing helps but occasionally caffeine.
A: Please see a neurologist and ophthalmologist. A neurologist can make sure there is nothing else causing neck pain (like a pinched nerve). An ophthalmologist will check your pressure in the eye and make sure nothing else is wrong with your vision. Also, they can check for dry eye, which could worsen your light sensitivity. If there is still no answer, see a neuro-ophthalmologist.
Q: I have been diagnosed with Idiopathic Intracranial Hypertension (IIH) with papilledema and I get migraine usually without the pain, but I get brain fog, dizziness, and weakness in the whole body. I also notice an increase of headaches when storms come through one after the other or altitude increase. I’m already taking Midrin and something to help deal with barometer changes. Is there anything else I can do? The brain fog is the worst part.
A: Migraine can occur more frequently in individuals with IIH. The dizziness and brain fog can be caused by both. You may need a preventive medication for pressure and for migraine to feel better. Come to the Moran Eye Center on November 1 for a full lecture on IIH, and it will cover the relationships among headache, migraine, and brain fog. The lecture will be held online and in person; you can view the flyer here.
Q: Are there connections between migraine or IIH and Alzheimer’s?
A: While there is NO proof that migraine causes Alzheimer’s disease, there have been very recent (2023) reports that individuals with migraine MAY have an increased risk of Alzheimer’s disease, especially if they are also obese.
Please see Front Aging Neurosci. 2023 May 25:15:1196185 for more information.
Q: In terms of rescue medications such as rizatriptan, is there anything new/improved out there?
A: There are new gepants (e.g., rimegepant, ubrogepant) and other devices. Visit the Headache School at the University of Utah and listen to all of the new acute migraine therapies and devices for migraine.
Q: Who is the best doctor at the University of Utah to help me navigate how to treat cervicogenic headache?
A: Start with your PCP; a referral to neurologist is also helpful.
Q: I have lifelong migraines without aura, or so I’ve thought. I do frequently have black spots moving over my vision, sometimes almost completely blocking; however, they do not precede a migraine. I have these visual issues probably 2–3 times per day. Is this aura? I do have migraines often—a few times a week, although they vary in degree.
A: First be sure you have seen an eye doctor to evaluate your vision. Then discuss this with your PCP. If necessary, you can be referred to neuro-ophthalmology.
Q: I am very photosensitive, but especially so when I’m in a dark context (e.g., a room) peering at a square of light, or in a light space (e.g., sunlight) peering into dark shadows like trees. This is extremely painful to me, immediately, and can often trigger a migraine right away, within minutes. Is this a particular variant of light sensitivity? And is this common?
A: Almost all people who are light sensitive (and do not have problems with their eyes) have migraine. See your ophthalmologist to get the correct diagnosis. There are ways to help with light sensitivity. Visit the Headache School at the University of Utah and listen to lectures on light sensitivity (photophobia) and visual aspects of migraine.
Q: I had a recent drastic increase in my aura migraines and shortly after, I found out my family had COVID. It was a repeat for me exactly from 2020. I’m wondering what COVID is doing to cause the migraine clusters and the correlation to what normally causes the migraines. It is very weird to me. Has COVID been around much longer than known, or are other viruses possibly causes them as well?
A: Covid definitely increases migraine in some patients. Yes, all viruses that have an effect on individuals can potentially worsen migraine.
Q: My grandmother had painful migraines. My mom has had optical migraine without pain. I have painful chronic migraines. My son has SUNCT-type headaches (also known as Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing) and my daughter has had a few optical migraines without pain. Will the optical migraines remain painless usually, or do they frequently evolve into regular painful migraines?
A: This is very variable between individuals. You obviously have migraine in your family with many types of migraine. Discuss your migraine with your PCP. Some individuals will never have severe pain with migraine aura, and some can get pain. In general, as people get older, the aura may become more prominent than the pain.
Q: My nine-year-old son was prescribed Cyproheptadine for headache/migraine prevention. Should he not take that due to the fact that it dries out the eyes? Could it make his headaches or migraines worse?
A: Cyproheptadine is a great preventive in children and is frequently used. If it does cause him dry eyes, there are many other preventives that can be used. Talk about this with your primary care provider.
Q: I have had constant, severe migraines since 2014, after a TBI. I have had many of the visual and dizziness issues you have mentioned. I am getting Vyepti and Botox (every 10 weeks), which give me some relief. I also have severe dry eyes and I’m on a regime of eye masks, etc. Do you have any thoughts on any other treatments, new or upcoming?
A: Be sure you are treating the dry eyes—and there are dry eye specialists at the Moran Eye Center. There are many treatments for bad dry eyes. Be sure you are also doing important things to prevent migraine: get plenty of sleep, stay hydrated, avoid sugar, practice meditation or mindfulness daily, get exercise too. Post-traumatic headaches can be hard to treat and referral to headache clinic may be helpful.
Q: If there is intense pressure at the base of skull that is debilitating, but the eyes have been checked by neuro-ophthalmology and the MRI is clear, do you have any other suggestions of what could cause that pressure?
A: You should have gotten a diagnosis of your pain from neurologist or neuro-ophthalmologist. Occipital neuralgia can be looked for and an injection of the occipital nerve can be a test for this. Discuss this with your PCP.
Q: I am a fibromyalgia patient. My pain is amplified by migraines. Is this common?
A: YES, all pain can be increased by migraine.
Q: I’ve been seeing a neurologist for years for migraine, but I have never had an MRI. Can I request one?
A: Yes, you can request one, and the neurologist can order one. Usually, however, if your story is typical and your examination is normal, the MRI scan is NOT helpful.
Q: Is migraine a syndrome, potentially a cluster of different brain disorders? Or is it very clearly a single neurological disorder?
A: Interesting question—in general, migraine is a disorder of the brain that manifests in many different ways; so, it gives many different symptoms, but it is usually related to the sensitive nature of the brain.
Q: Being a stroke survivor, am I more inclined to migraines?
A: Some individuals do have migraine-like headache AFTER stroke. Most do not.
Q: What is a “re-set” in headache-speak?
A: Visit the Headache School at the University of Utah and listen to my lecture, “I Have Daily Headaches. What Are My Options for a Reset?”
Q: You mentioned headaches in children. My 13-year-old son is just starting to experience headaches. Generally speaking, and I’ll probably speak with his pediatrician, what are good options for him to start with? Both medications and exercises? Is he too young for prescription or over the counter (OTC) medications? Is there anything I should be looking for or asking about?
A: These are very good questions! Yes, discuss this with his pediatrician. Many options are available. At the University of Utah Headache School, we have two lectures on children and headache—there are many things to do. Sometimes even cognitive behavioral therapy can be helpful.
Q: Are there any new peer-reviewed papers out on photophobia this year? Are there any support groups for photophobia online? I have not found one and would love the Moran Eye Center to have one.
A: We have many papers on photophobia, but we do not have a support group for this condition since it is due to so many things. The NOVEL website links to the patient portal, and it contains resources on photophobia and a link to almost 1000 articles on photophobia.
Go to http://novel.utah.edu; you can also find the latest papers here: https://pubmed.ncbi.nlm.nih.gov/?term=%22Photophobia%22%5BMesh%5D.
Q: In terms of rescue medications such as Rizatriptan, is there anything new/improved out there?
A: Yes—there are many new rescue medications. Go to the Headache School and listen to lectures on new medications for migraine.
Q: If there is vibration at the base of the skull and it feels like the brain is vibrating and it is affecting vision—I’ve been told it’s tension related. But there is no relief with tension-related treatments. Is this symptom only associated with tension migraine, or could it be something else?
A: Discuss this with your primary care provider, and if necessary, get referred to ophthalmology for any visual complaint and neurology for a good examination and evaluation. It could be something else.