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Migraine is frustrating and sometimes it’s difficult to get diagnosed because doctors often see it as a bad headache and often it is not taken as seriously as some other illnesses. As a disabled person, I need a lot of specialists to help manage my disability and for the most part, I like my doctors but to say I hate my neurology team is putting it nicely and it is to the point that when people ask who my neurologist is I will not tell them because I would never want anyone feel as frustrated as I do when I go to the doctor. When I first started seeing a neurologist I had a fabulous neurology team but since then I have had to change doctors because sadly the one that listened to me and that I liked moved to another state and I had to go to someone else. I originally needed a neurologist exclusively for seizures but since then things have changed and now I mostly need them for headache and migraine prevention which I don’t think my doctor has a lot of knowledge in. My neurologist is not a bad guy and I have nothing against him as an individual but it is frustrating when you get a disabling weekly migraine and your doctor is more concerned about seizures that you have not had in over two years because they are not a headache specialist. In this post, I am going to talk about what migraineurs wish their doctors could understand about migraine.
You can’t just live with it When you live with migraine sometimes it can be difficult to find a neurologist because not all neurologists are headache specialists and some people are epilepsy experts and had very minimal training on headache management. A migraine diagnosis can be difficult for anyone because a lot of doctors think migraine is just a bad headache but when you have Hydrocephalus it’s different because not all medications are effective for me or I can’t take them because it has latex it in. When I first started getting chronic migraine the first two medications I tried did not work and it was at that moment that I knew my doctor was not a headache specialist because he was about to give up and a true headache specialist would at the very least have given me dietary suggestions and not given up that quickly. Migraine is frustrating because the sad truth is that not all neurologists are headache specialists and sometimes your doctor may have only taken one course on headache or migraine disorders. Some doctors will tell patients that they are out of options and that they will need to live with their pain but how can you live with something is so disabling that you can barely get out of bed most days? I don’t expect my doctors to have all the answers but you don’t have to tell someone to just live with it and when you word it like that it’s dismissive of severe pain which leaves many patients without hope.
It’s not just about head pain – The problem we have in healthcare when diagnosing migraine is that we don’t have a lot of doctors who specialize in migraine or headache disorders and your typical neurologist associate migraine with head pain. When you are having a migraine attack you can get head pain but not everyone gets head pain and sometimes people may become dizzy or experience nausea or vomiting. Head pain is only one symptom and we need to stop focusing on just that because migraine affects your entire body not just your head. Doctors should be looking at your whole body when diagnosing migraine but many of them don’t because of all the beliefs of migraine being only head pain. Some rare form of migraine can be misdiagnosed and confused with having a stroke and if something is that severe it’s not a headache.
It’s dismissive of severe pain when you call it headaches- It is shocking how many doctors call migraine a headache and it is pretty rare when you hear a doctor use the right term because most of them will refer to it as a headache. I can understand people that don’t live with migraine and unknowingly call it a headache but when your doctor who is supposed to be the headache expert calls a migraine a “headache” it’s insulting and if there is one person who should call it what it is it should be your doctor. Language matters because patients sometimes feel that their pain is dismissed when doctors downplay someone’s severe pain by calling it a headache.
Migraine is highly stigmatized and if my medication is kind of working sometimes I won’t even bring it up in my doctors appointments because of the fear of not being listened to. If the only thing I needed a neurologist for was epilepsy I think my doctor would be fine but the truth is having a seizure is the least of my concern because I have not had them in over two years. People sometimes think that preventative medication cure migraine but that is no true and for some people it only slightly reduces that amount of attacks you have and does less for us than people believe. A headache specialist is necessary for people who live with chronic headaches and migraines but it can be difficult to find someone qualified to treat headache disorders because more people study epilepsy than migraine disorders. I think I would get the most benefit from a headache specialist but unfortunately, it’s not that easy because I also have Hydrocephalus which makes things different and you need a doctor that understands that. I have learned a lot of things about preventing headache and migraine but I have learned most of it not from my doctor but from the migraine community because sometimes you will get better coping strategies from people who live with it than you would have ever gotten from your doctor. What do you wish your doctor understood about migraine?
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