‘Can hate be something we don’t hate?’
Normally I would say hate is never good. It’s a huge waste of time and energy, but I guess I have to re-evaluate that opinion.
In April 2014, I was diagnosed with FHM: Familial Hemiplegic Migraine. I have gone through (and probably STILL going through the 7 stages of grief:
Shock/Disbelief: What? How? WHAT?? All these years of pain and suffering and what I have amounts to nothing more than a bloody headache??? Are you kidding me??
Denial: How can it be just bad headaches? So, what is it all about? I cant possibly have that. It has to be more. I got home and checked it out on medical websites and this is what I found:
To understand Hemiplegic Migraine, we have to understand that Migraine attacks are episodic manifestations of a genetic neurological disease. Migraine can present in a variety of ways. Hemiplegic Migraine is a rare form of Migraine, made more confusing by there being two variations: Familial Hemiplegic Migraine (FHM) and Sporadic Hemiplegic Migraine (SHM).
What are the symptoms? I am only going to post the ones that I experience:
Visual Aura (before the pain begins)
- a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
- flashes of light and color
- wavy lines
- geometric patterns
- blurred vision
- partial loss of sight
- Episodes of prolonged aura (up to several days or weeks)
- numbness or tingling on the face or upper extremities
- a sense that limbs are a distorted shape or size
- heightened sensitivity to light, sound, and smells
- smelling odors that aren’t actually present (like natural gas or something burning)
- skin sensitivity and intolerance of being touched (allodynia)
- partial paralysis
- weakness or heaviness in the limbs on one side of the body
- Hemiplegia (paralysis on one side of the body)
- Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)
- mental confusion
- inability to concentrate
- difficulty finding words
- Impaired consciousness ranging from confusion to profound coma
- The onset of the hemiplegia may be sudden and simulate a stroke
- increased thirst
- frequent urination
- bloating/fluid retention
- fatigue, lethargy
- mood changes
- high energy
- euphoria, feeling of intense well-being
- Headache, which may begin before the hemiplegia or be absent
- intolerance of food odors
- loss of appetite
- cold, clammy hands and feet
- facial swelling
- goose bumps
- bloodshot eyes
- black circles around eyes
- frequent yawning
- nasal congestion
- runny nose
- changes in blood pressure
- blood vessel dilation
- difficulty regulating temperature
- changes in heart rhythms
Bargaining: Right, but most of that sounds like Bi-Polar disorder. I accept FHM, but I refuse to believe I have both BPD AND FHM, so I am now waiting to have the BPD re-assessed.
Guilt: What I hate is making plans to go out with friends and then having to cry off because I am barely conscious. I hate having to call in sick at work and I feel guilty because of the hangover:
“Postdrome” is the official term for that wrung out, exhausted, headachy feeling migraineurs experience after the most painful and intense phase of their migraine attack has passed. Calling this stage, the fourth in a migraine attack, a “migraine hangover” strikes a chord the clinical definition does not. The most active, intense part of the experience is over and you’re left dealing with the not-quite-right aftermath. All without the fun of drinking delicious adult beverages and laughing with your friends.
Not every migraineur experiences postdrome, though most do. In one study, 68% of participants had migraine hangover symptoms that lasted from a few hours to a couple days, with an average duration of 25.2 hours. Symptoms include of tiredness, difficulty concentrating, weakness, dizziness, lightheadedness, decreased energy, head pain, skin and scalp sensitivity, and mood change.
I first wrote about postdrome in 2007 and have collected more than 250 accounts of migraineurs’ experience with it. People describe the physical sensations as weighted down limbs, moving through mud, walking through quicksand, heaviness and numbness. Some say they feel like they’ve just run a marathon or been beaten up or hit by a truck. Though the pain isn’t as severe as in the height of the migraine, head pain is common and often exacerbated by coughing or sneezing, some say their head and brain feel bruised. Emotionally, people describe being easily agitated and annoyed, impatient, sad and depressed. A dense mental fog or haze, difficulty making decisions, mental confusion, and forgetfulness are also frequently reported symptoms.
Many migraineurs, both in studies and the stories I’ve collected, say that postdrome interferes with their work as well as their family and social relationships. Because the worst of the migraine is over, many feel like they should be able to get more done and feel guilty for not being productive. If you fall into this category — I certainly do — remember that the migraine is not over. You’re still experiencing symptoms, though not as intense, so try to go easy on yourself.
While knowing the medical terms used for migraine is helpful for talking with your doctor about your symptoms and experience, referring to a migraine hangover in social situations can help non-migraineurs understand the severity of the LEAST painful part of a migraine attack. Non-migraineurs think “hangover” and they think horrible headache and feeling wrung out. After I explained the similarities between alcohol and migraine hangovers to a friend, she asked, “You mean the migraine is even WORSE than that?” She was appropriately horrified when I said yes and that the hangover is actually a relief after the pain of the attack.
- Kerrie Smyres – Migraine.com
Anger: Angry?? Damn right I am angry. I have suffered this for years. Why has it only come about now? WHY do I have to have a disease that’s eating away at my brain? Having joined a support forum I find that FHM CAN cause Epilepsy, Alzheimer, coma along with Permanent partial paralysis. WTF!!! Why is this happening to me?? WHY do I have to have THIS disease on top of all the other diseases and conditions?! When will things be good for ME!!!
Depression: Already, so many parts of my life have been affected. Before this I had never had a day sick, NEVER forgotten my boss/friends names. NEVER forgotten words. I feel angry because I KNOW I am not at my best, but I still feel guilty that I am not doing ‘normal’ everyday things. More important than all of that I am depressed because I feel angry and guilty over something I cant do a thing about. I feel depression knowing that there is no happy ending for me.
Acceptance/Hope: Yes, I now accept my lot. I have always been of the mind, if you cant change something, you should try to adjust to it and unless the MRI shows something different, then I can’t change this. Perhaps the word is not acceptance, perhaps the word is more ‘resignation’.
Hope? really? Your kidding? Okay so I COULD hope that I don’t get any of the more serious ‘stuff’. I live alone in a flat on the 3rd floor, so that would be an issue for me. My employers are amazing about this. After reading some of the stories, I am blessed that I have that, so I hope that I can do my best for them whilst I can. And sometimes, just sometimes when the pain is real bad, I hope this will be the last one. When I feel an attack, I usually post on FB something like ‘Shoot me. Shoot me now’. Whilst I love my friends, I hope they don’t realize I am being serious.
So back to the title: Can hate be good? I have to change my opinion and say YES because if I didn’t hate what this was doing to me, I wouldn’t so determined to find out everything about it. I know its uncurable, but it has just GOT to be manageable.