I have suffered from migraines for over 45 years. In the early days, the symptoms were simple; blinding headaches, sensitivity to light and sound, and nausea. As a child, these feelings were frightening. However, as I got older I learned how to cope with the pain, albeit not with the nausea. Luckily, the headaches back then were very few and far between.
After the birth of my son, I began to experience more frequent migraines. They became even more prevalent after the birth of my daughter. But after I had a partial hysterectomy, the headaches became something much more powerful. I developed what physicians refer to as “complicated” or “complex” hemiplegic migraines.
With the onset of each headache, I would experience impaired motor function on the left side of my body, accompanied by a feeling of numbness and tingling. I had to drag my left leg as I walked and my left arm was basically useless. The numbness usually remained for the full course of my migraine; anywhere from a few hours to several days. Sometimes, I would also experience a sense of confusion or dementia, partial memory loss, and/or aphasia.
As you might imagine, the onset of these new symptoms was initially troubling. Doctors in the ER were convinced that I was either “faking it” or otherwise psychologically impaired. To prove them wrong, I suffered through every psychological test known to man as well as every medical one they could think of – – Cat Scans, EEGs, MRIs (with and without contrast), spinal taps and more. General practitioners dismissed me as “drug seeking” even when I wasn’t asking for pain medication. Specialists wanted to run a new battery of tests, certain that someone had missed something. Life at that time was totally miserable.
Finally, when I was about 38, I found a neurologist with expertise in the area of complex migraines. Through trial and error he worked to get me on a regimen of medications that worked for me. These included a beta blocker, Toradol (non-narcotic) at onset of the headache, and Tyelonal 3 if the headache still took hold. For years, I lived a pretty normal life. I was able to head many migraines off at the pass and thereby side stepping those disastrous side effects.
Unfortunately, a few years back, a military physician got it in her head to change my medication. She took me off of everything, upset the delicate balance of my body’s systems and sent me spiraling into a period of unparalleled agony. It took months to find a physician who would listen to me so that I could get back on the right medication regimen and return to a normal life.
Now I’m back in the same place once again, with a military doctor who has taken me off of my beta-blockers and thrown my body’s system into chaos. As if a constant state of migraines weren’t bad enough, the sudden depletion of beta-blockers, which also serve as a heart medication, appears to have done some damage to my heart. I’ve experienced several mild heart issues in the last couple of months. The verdict remains out on the extent of that damage. I have more tests to take.
With nothing but the military insurance that we now have to pay for, I fall victim to the whims of the government health care system. It is, at best ,mediocre. That means, I cannot seek outside assistance without a written referral. When a military doctor refuses to admit his actions might have been wrong, the chances of an outside referral are nil and none.
There is a purpose to this story, which is not to induce sympathy, but hopefully to educate someone out there who might suffer from similiar symptoms. First be aware that, even in this day and age, a lot of doctors do not recognize migraines as a legitimate illness. Therefore, if you suffer from them, just know that you will find a lot of roadblocks thrown in your pathway on the road to obtaining answers. You will also suffer untold indignities along the way. You will be labeled “psychotic” by some; “neurotic” by others.
There will be those physicians who will label you as a “drug seeker” even if you never ask for durgs or accept them. Others will claim you are just “seeking attention.” There will be those who believe that you are blowing a minor headache out of proportion. You will be treated with disrepect and utter disdain.
However, take heart. Tthere will also be those who know and understand the world of migraines; even complex or complicated hemiplegic ones. And they will do everything within their power to help you. They will give you the respect you deserve and they will be kind and considerate. The trick is just being able to find them.
If you suffer from a migraine, or even think that might be the case, the first step you should take is to document everything. Keep a headache diary before, during, and after each and every doctor’s appointment. Write down everything you experience as a part of your headache. Record the time the headache started and what you felt like just before it began and once it began.
Keep track of the length of the headache and note anything out of the ordinary such as blurry vision, loss of consciousness, trouble speaking, etc. If you can remember what you ate or drank for 24 hours prior to the headache, write that down as well. Many migraines are triggered by certain kinds of foods like chocolate, citrus, or cheese. Others are triggered by alcohol or diet drinks.
If at all possible, have one or more individuals witness your symptoms and make sure that they sign a statement to that effect in the diary. Whenever possible, make sure that the witnesses are not members of the immediate family.
Take the diary with you if you must make a trip to the ER or to your doctor’s office. That way, you are far less likely to forget to list all of your symptoms. Be sure to record every exam and test that happens as a result of the migraine, including the results of the tests. Keep track of anything and everything that might be pertinent information about your headache.
Do not let any doctor intimidate you. You are entitled to compassionate, timely, and decent health care. If you don’t feel that you are getting it, request to see another physician. Remember that you are the “customer.” You are paying for their services and, therefore, deserve the best they have to offer.
If you have any headache symptoms outside of your own personal norm, report them immediately. Here are some of the things you should look for if you believe that you are suffering from a complex, complicated hemiplegic migraine.
A TIA, or transient ischemic attack. TIAs normally occur when the brain is temporarily deprived of regular blood flow. This is a normal result of complicated or complex hemiplegic migraines. Typical results will include the other symptoms listed below:
Numbness and/or tingling in certain areas of the body like the arms and legs. It can even effect the muscle areas of the face.
A sense of confusion or dementia. Be aware that you may not recognize these symptoms in yourself. Ask your family and friends to watch out for any noticeable changes in your behavior.
Aphasia or a “scrambling” of thought patterns as they relate to speech. You might be able to think clearly about what you want to say, but what comes out of your mouth may have no resemblance to those thoughts. Often the words don’t even go together to form a complete thought. Sometimes the thought patterns themselves are also scrambled.
Black outs. These may last only a few seconds or extend for several minutes.
Any other change in your body’s normal neurological functions.
A popular theory behind the cause of migraine headaches is that the blood vessels in the brain suddenly narrow or spasm. This then causes them to dilate, which results in the migraine. It is during the spasm phase, that blood flow to certain parts of the brain may be interrupted, resulting in the stroke like symptoms. Unlike a stroke, however, the blood flow is not permanently impaired. Therefore, the neurological symptoms are generally temporary.
Others discount the above theory and continue to study the phenomenon that is migraines. There seems to be no sure-fire cure that suits every individual need. However, today there are now a lot of good preventative medications on the market. A competent neurologist can work with any migraine sufferer to locate the right medication regiment.
Most of all: Don’t give up or give in! Migraines are frightening. They ebb and flow and constantly change which is why it is important to stay one step ahead.
