HM stands for Hemiplegic Migraines.
I may later on share some of my journey to finding a diagnosis and what we've tried to treat the symptoms but for this post, I'm going to try to stick with what HM is and how it affects the people who have it.
most of this information can be found on the HM website probably worded way better.
Hemiplegic Migraine is a very rare neurological disease. It is classified as migraines with aura with accompanied motor weakness. What that means is when I get an attack, I usually have some 'signs' that let me know it is on its way. My auras are mostly tingling like when you sit on your leg for awhile and it falls asleep, white or blurry spots in my left eye, and slurring or forgetting simple words (everything is 'that thing'). I get motor weakness with each attack, usually it is my left arm and hand that has trouble but sometimes it will move to my leg or cover both sides. The only way I can describe the way it feels is having to concentrate really hard to move even a little bit. Trying to type or grip a pencil usually only takes a second or so of thought and then voila! youre grasping a pencil or tapping away at the keys. During an attack, my mind says 'hey! grab that pencil.' and my hand takes its sweet time, stops to see the sights and then decides to follow directions. Sometimes when an attack is really really bad, I cant move certain parts at all. Ive had a few attacks like this where even sitting up wasnt happening, I was paralyzed.
The commonly reported symptoms for HM are:
- visual disturbances
- sensory loss
- weakness or paralysis on one-side of the body
- confusion, speech difficulty
- impaired consciousness
- coma
- memory loss
I have been fortunate enough that I have not experienced coma but I have experienced everything else at least once. Some people say that the confusion and memory loss disapears after an attack. I havent been that lucky. I struggle with reading simple instructions and understanding them. My partner can attest to the horrible memory loss. I ask for a kiss two minutes after asking for a kiss and swear I never got one. Secretly, I sometimes do remember but I want another kiss anyway ;)
There is no cure for HM and there isnt a clear method of treatment either. Actually, a lot of doctors disagree with each other about what works, what is dangerous and what to try. For me, I have learned that I cannot take narcotics (like vicodin) for pain from an attack. The fear is that narcotics will cause an actual stroke, not just the stroke like symptoms we already encounter and they cause what is called 'rebound headaches' where the pain subsides for a little bit but comes back full force and sticks around. I have experienced the rebound headaches and I dont want to risk an actual stroke so I try to stay away from narcotics for pain management.
Another thing HM has given me is seizures. Apparently this isnt very common but I won the lottery and got those as my prize. For anyone who hasnt experienced a seizure, theyre pretty scary. I'm told that I have both conscious and unconscious seizures which just means sometimes I am 'awake' during the seizure and can see and hear and feel everything around me and sometimes I have them where I black out or while I am asleep. The conscious seizures are the scariest things I have ever experienced outside of that dang clown at the haunted house. They both made me pee myself though.
Before a seizure, I get a heavy feeling in the pit of my stomach. Think scary movie or top of the roller coaster about to go down- kind of a weird adrenaline rush feeling. Seconds after the feeling starts I can feel my muscles tensing up. I cannot see myself but it feels like they tense and release in some places and stay tense in others. This has made scary movies something I cant watch anymore. Whenever I get that feeling, I fear a seizure and it will sometimes scare me so much worrying about the seizure that I throw myself into HM attack. Thats thanks to stress being a trigger.
Triggers, jeeze, there are a lot of them.
For me, my worst trigger is direct sunlight or fluorescent lights. Doctors appointments are fun because of this. They like to schedule appointments to look at my brain and then make me wait an hour under the lights that trigger the misbehavior of it. I spend a lot of time feeling like that douche with their sunglasses on inside but if I dont wear them, its worse. Stress, fatigue, high blood pressure, low blood sugar and my 'cycle' also trigger HM attacks. So far the only food related trigger I have found is aspartame or other 'fake' sugars. The attacks for those are horrendously painful and seem to last the longest. Some people will tell you that aspartame is only harmful to people in large amounts but I will disagree with them til the day I die. I accidentally sipped some diet dr.pepper and within a half hour felt the results. It wasnt a large amount, maybe a large sip but not a large amount of aspartame. I avoid it like the plague. Some people are so unlucky that cheese and chocolate trigger their attacks. I am so glad to not be one of those people because I dont know that I could live without either.
I keep calling them attacks and that really is what it is. Your brain attacks your body, shutting it down or making it do things it isnt supposed to do. A lot of people who get these attacks have been lucky enough to have quick attacks. I read a story from a lady the other day who said her attacks are rarely longer than twenty minutes start to finish. Mine seem to last anywhere from one day to a week. My longest attack was almost three weeks long before I sought medical intervention at the ER. The longest reported attack was a year. A YEAR. I couldnt imagine.
The pain during the attacks is excruciating, well for most people. Some people have 'invisible' headaches where the pain isnt there for the migraine but the other symptoms from HM are. But like I said, most get the pain. It is horrible pain, like your brain has outgrown your skull and all you want is someone to poke a hole in your head to relieve some of the pressure. As you can imagine, it gets to be too much for some. Its more common than I'd like that some people, in order to escape the pain, take their own lives. Just recently, a young woman in the support groups I am in, took her own life out of desperation. She was tired of living the limited life full of pain and she chose death over pain. It is so heart wrenching to type let alone think about. But she's not alone and others will contemplate it, some will try and some will succeed.
Because HM is so rare and so new, little research has been done to find a cure or treatment. Most people see the name- hemiplegic migraine- and think 'oh, its just a headache'. They dont understand the seriousness of the disease or that it has killed people, even not counting the suicides. Right now we are trying to raise awareness of the disease and money to try to find an effective treatment and hopefully a cure for it. If youd like to help with that information is here on how to donate to the hemiplegic migraine foundation. Or there is the Bailey Jones medical research fund named for a young girl who lost her battle with the disease at the age of thirteen.
I hope I have explained it well enough for you to understand what I was trying to say. It is a silent disease, people dont see the suffering and we're called over dramatic or lazy while we try daily to find the strength to live each day. I think that is one big thing I want people to get out of this. Basically, dont judge a book by its cover. I dont look sick and I try not to let people see the pain Im in but on most days my body is fighting a battle with itself and I am just along for the painful ride.
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