Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I want to talk about my experience with migraines as an installment in the “My Diagnosis” series. I personally have two kind of migraines. I experience Abdominal Migraines and Migraine Headaches with Aura (or Classic Migraine). While they are very different experiences, they are technically the same thing and I want to talk about them together to highlight how varied the Migraine experience can be.
As always, I’m going to start out by talking about what a migraine is and then I’ll get into what the two different types I experience are. The first thing to note is that this is a neurological disorder. It is not a type of head ache. In fact, it is possible to have a migraine without having any head pain. Having a head ache is one possible and very common symptom of migraines. But it isn’t actually a head ache disorder.
Migraine is an inherited neurological disorder that is characterized by over excitability of specific areas of the brain.American Migraine Foundation
I make this point because people are often confused when I talk about abdominal migraines. When they go into the conversation thinking that migraines are a head ache disorder, it is very confusing for someone to be talking about abdominal symptoms. Many people who have migraines never have head aches, so it is important to keep in mind that it is a disorder that is about over excitement of the nervous system rather then a pain disorder. Again, that’s a very common symptom but not required to be a migraine.
Just like the majority of chronic illnesses, the cause is unknown. We know that there is an over excitability in the brain and depending on what part of the brain is over excited will dictate what symptoms a person will experience. This is why there is a vast array of variability under the umbrella of this single diagnosis. There are many different types of migraines and the diagnosis is often layered to describe the features of the migraine.
The first part of the migraine diagnosis is how often you get migraines. This is measured by the number of days you have migraine symptoms in a month. This can be episodic (7 days), high-frequency episodic (8-14 day) or chronic (15 or more days). I currently am in the category of being episodic for both types of migraines. Before I was receiving treatment I was high-frequency episodic for the migraines with aura and I was chronic for the abdominal migraines.
The next thing that they consider for the diagnosis is whether or not you have an aura for your migraines. You can have an aura with any kind of migraine. It can be a wide range of sensations or neurological symptoms that proceed the migraine symptoms. For me, I do not get an aura for my abdominal migraines. I do get an aura with my migraine head aches. For me, the aura is a change in my vision that I can best describe as a smearing. The edges of everything become fuzzy and when I move my eyes, there is an after image that trails behind everything, leaving a smear of color in my field of vision. This makes it impossible to drive. There are many other tasks that I cannot perform safely when this vision change occurs. Reading is very difficult.
The next thing that is considered where you are having pain, if any. If you are having head pain, this is dubbed a head ache. If the pain is in the abdomen, it is likely that you will be diagnosed with abdominal migraines. If you do not have any pain, you will be diagnosed with Migraine with out Headache (or Silent Migraine). I have abdominal migraines and migraine headaches.
The last thing that they consider is if there are any classic patterns of symptoms presenting. If so, you will be diagnosed with an additional modifier based on the symptom set you present with. These include brain stem aura, hemiplegic migraine, menstrual migraine, ocular migraine, vestibular migraine and ophthalmoplegic migraine. My migraine head aches are menstrual migraines. My abdominal migraines don’t have any additional symptom sets that add a qualified to the diagnosis.
Hopefully, this big long explanation makes it clear that migraines are very complex and much more then head aches. My full diagnosis for my migraines is:
- Episodic Abdominal Migraines without Aura
- Episodic Menstrual Migraine Headaches with Aura
Both migraine types suck. I can count on having a migraine for two or three days every month when I am menstruating. My preventive medications have not prevented these migraines, but have reduced their severity. Most of the time, I can be functional through the symptoms if I need to. Before being on Topamax, that was not an option. I was out of commission when the migraine head ache came. As much as these migraines suck, the Abdominal Migraines are worse for me. Partly because I hate vomiting more then I hate being in pain. Before getting onto Topamax, I was having abdominal pain with vomiting twenty to twenty five days a month. It was awful. Now I have one or two days a month.
Migraines are a complex experience with several phases. Not every person experiences every phase of the migraine. The first phase of the migraine is the prodrome phase. About 77% of people who have migraines experience this phase. There is a gender difference with 81% of women experiencing this phase while only 64% of men do. This phase usual begins a day or two before the pain. Frequent symptoms during the prodromal phase are yawning, mood change (often irritability), lethargy, neck symptoms (stiffness or pain), light sensitivity, restlessness, difficulties in focusing vision, feeling cold, food cravings, sound sensitivity, sweating, excess energy, thirst, and edema.
I do not have a prodromal phase for my abdominal migraines but I do for my migraine head aches. But it is possible that these symptoms are because I am getting ready to start mensuration rather then because of the migraine head ache. I get irritable, have fatigue and lethargy, crave sugar and have increased difficulty focusing.
The aura phase can precede the pain phase or can arrive simultaneously. It can include both negative and positive symptoms. Negative symptoms include the loss or reduction of function like loosing the ability to see. While positive symptoms are the addition or increase of something like seeing flashing lights or smelling something that isn’t there. About 25% of people with migraines have an aura. Visual auras are the most common with allodynia being the second most common.
I have no aura with my abdominal migraines. With my migraine head aches, I get vision changes as I have previously described a few hours before the pain phase. During the pain phase, I also have allodynia which is the experience of pain from stimuli that isn’t normally painful. For most people it is experienced on the scalp or face, but it can be any where on the body. For me, it is on my scalp and in my mouth. Eating while I have a migraine head ache will make my teeth hurt.
The next phase is the pain phase. This is when the person experiences the head ache or abdominal pain. During phase there are a multitude of symptoms that are commonly present with the pain including nausea, vomiting, photophobia, phonophobia, rhinorrhea, lachrymation, allodynia, and osmophobia. This is also when the other symptom clusters would present if a person has them such as those for a hemiplegic or ocular migraine.
During an abdominal migraine, I suddenly start having abdominal pain that has a throbbing stab that is in time with my heart beat. The pain is mostly in my left upper quadrant but often radiates down into the left lower quadrant. I experience nausea and vomiting that is very intense. I will completely empty and go into dry heaves. I feel cold and get sweaty. I have light sensitivity and sound sensitivity.
During my migraine head aches, the pain is on the right side of my face with it being the most severe at my right eye. It feels as if someone is stabbing my eye in a throbbing fashion, in time with my heart beat. My face burns and my teeth ache. Anything touching my scalp is painful. I have light sensitivity. I also have nausea and vomiting but not as severe as I do with the abdominal migraines.
The last phase of the migraine is the postdrome phase. This phase consists of a movement-vulnerable pain in the same location as the previous pain. Common symptoms can be exhaustion, dizziness, difficulty concentrating, and euphoria.
After I have a migraine of either kind, I experience a postdrome phase that’s pretty much the same. I have positional pain. Being upright means more pain. I am very tired and usually end up sleeping a prolonged period of time. I have dizziness and poor concentration. I often feel sad and emotionally used up. Migraines are a lot of work!
I think the thing that is the most difficult about having migraines is the misconception that they are “just head aches.” When I have a migraine, I sometimes have to call out from work. Even tough I am a nurse and work with individuals who are educated on what a migraine is, there is a great deal of stigma around having migraines. I am often seen as being lazy or work avoidant. I have frequently gotten comments like “Just take an aspirin.” And this is while working in the medical field. I cannot imagine what those dealing with migraines face when they are working in other environments.
The productivity culture in this country is toxic and good for no one. I promise that no one wants me to be coming in to work as their nurse when I am uncontrollably vomiting, can’t concentrate and cannot read. This is not a safe condition in which to be providing patient care. Yet, American culture is such that we should be working through it no matter how awful we feel. This must change. Humans have limitations and those limits need to be respected.
If you would like to learn more about Migraines, I strongly recommend the book “The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health” by Carolyn Bernstein and Elaine McArdle. The book was published in 2008, so it is older. Despite that, I still feel that it is the most patient friendly and most comprehensive over view of migraines that is currently in print. The treatment section in the book is out dated, but if you want to learn more about the types and classifications of migraines, this is the book to read. If you are looking for a guide for tracking your symptoms and starting a migraine journal, this is the book to read.
If you are looking for more information and more patient support for the treatment of migraines, there are two great organizations out there doing good work.
- The American Migraine Foundation: AmericanMigraineFoundation.org
- The National Head Ache Foundation: Headches.org
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!