Kristina’s Vida Loca.
It was 1984, and the 5th bell rang for 6th grade English. It was time to write. I grabbed my pencil and my arm felt like it was a million miles away. The life was being sucked out of my fingers and my hand felt like someone was sticking needles in it. What is going on? Will I be able to write “sfrtc” was being written on the paper by my confused brain. I think I was trying to write “there”. Parts of my arm were starting to fade. Little worm like figures started moving across my visual field and fireworks were going off in my line of sight. A bead of sweat rolled down my temple….. “Did someone turn the heat up. This is the desert, you know, turn the swamp cooler on”! The 1aura had begun. Then the migraine started. I am also 2photophobic, which is partially due to 3Cone Rod Dystrophy (CRD) a rare eye disease which was diagnosed later, at age 15. It was the beginning of a lifetime of confusion, doubt, despair, pain and eventually something that would eventually lead to a great foundation to help spread awareness, advocacy, support, education, and hopefully a cure for 4Hemiplegic Migraine (HM).
There are no constraints on the human mind, no walls around the human spirit, no barriers to our progress except those we ourselves erect.
Unfortunately, my migraines were overlooked due to my CRD and were considered growing pains or what I call my (.)dot a.k.a. woman’s cycle. I carried on through my life thinking “it was just a migraine.” I graduated from high school and moved to the Upper Peninsula of Michigan to attend 5NMU to earn a B.S. in Criminal Justice with a minor in English. My “migraines” did lay me up quite a bit, yet I made it through. I did see doctors and was given medications for migraines 6(Midrin), Asthma 7(Albuterol), birth control 8(Tri Levlen), and for high blood pressure 9(hydrochlorothyizide), and I was a smoker. That combination should of put up a flag, right? Umm those medications DO NOT mix. How do I know? Here’s my story.
On Nov 30, 2001 I was getting myself ready to leave for a business meeting for the weekend. This was a regular occurrence as I had a very successful highway vending business in Lower Michigan (I would later have to give up due to my HM) and was on a board and a few committees which I had to oversee and needed my input and votes on. I had taken my medications and started to feel the beginning of an event that would change my life and lives around me forever. Thank goodness this happened in my house and not alone in a hotel room after a night of celebrating. Yes, God was looking over me.
The left side of my face started to feel a deep emptiness and my tongue and cheek on the left was going numb, I could feel the numbness traveling the whole left side of my arm and leg and I could of sworn we were having a huge earthquake as if I was rocking in a boat. I felt like that infamous day in 6th grade English class but a million times worse. My head started to really hurt and so I thought I would take a nap. I laid down for a minute, then decided to try and get up, I was too anxious, not understanding what was going on. My complete left side turned into a 215 pound weight and as I tried to stand, I toppled over like a ton of bricks. I fell into my night stand, later causing a huge bruise on my right arm, and hit the floor. I was paralyzed. I am not sure, maybe a few hours although to me it felt like an eternity of dragging my dead left side and pushing/pulling my right on the ground. I was able to wrap my right arm around the bed rail and finally reached the top of the bed (3 ½ feet off the floor) and I dialed my husband. I mumbled, “I have a migraine.” He responded, “Call 911.” When my husband got to me, he knew. My complete left side of my face was flat, drooping, drooling, and he could barely understand what I was saying. It sounded as if I had drank a 12 pack of beer. My HM had caused a massive 10vascular constrictive stroke that took out my whole left side. The ambulance arrived and off to the Emergency Room I went. I could not talk, walk, eat, or move my left side.I kept wondering why all those doctors kept coming in and asking me to smile and do all the neurological test ~stick your tongue out, move it to the left, to the right, pierced my eyes with lights, can you move you eye brows, what day is it, etc., and kept choking on water (they eventually took that away and I lived on swabs for 4 days and an IV). An MRI confirmed, a massive 11infarction on the right side that almost took my lungs. I stayed in the hospital for two weeks. I was determined to walk. Within a week I was able to walk, with assistance and a wheel chair. I wanted to get off the catheter. We would make it a game or fun, Tim, my husband, whom I called my Superman, would dance me to the bathroom. I remember the first time I could move my pinkie, I called my hubby at 4 a.m. “I moved it!” I screamed. “Not much but it moved.” It was a miracle. I surprised the doctors at how fast I was progressing, but not fast enough for me. I had intense inpatient therapy 8 hours a day. 12Occupational Therapy, Physical Therapy, and Speech Therapy for almost two weeks. I wanted to be home for Christmas. When I left, my speech was not the best and I still had a cane and could not walk stairs by myself; so Tim would assist me by hanging on to the gait belt. Friends and family came from all over to help take care of me as Tim and his family took care of the business. I continued through OT, PT, and ST for 4 months and then I said I would continue at home, I didn’t. I am here to say CONTINUE WITH IT! It will save you a lot of time and heartache.
I had a 13Transient Ischemic Attack (TIA) and freaked. Am I having another stroke?, I thought to myself,and went to the hospital and they told me not to worry it was “just a TIA”. I am here to say to tell you, when things are different and you think you should go, go and be persistent. Ask questions.
In June of ’03 my speech was garbled and I was missing words. I went to work with my in-laws and was acting quite strange. Asking redundant questions, ”We are going .. um.. what are we doing? where are we going? ” I just thought it was a TIA for a few days. I remember being in Meijer Super Store and asking Tim, “What does Customer Service mean?” “Who is that on the magazine?” Well Tim’s best friend finally said “No more messing around, you are going in” and yes I had another stroke, on the other side of my brain. This one caused Aphasia, which is damage to the brain that creates language and allows you to read, write, and say what you mean to say. They put me on 14Coumidin this time. I was in the hospital seven days, learning things all over again. This one was more 1+1=2, 3 take away 2=1. It took me months to understand these concepts, who my favorite bands were. Yes, I forgot Metallica was my favorite band. I forgot words to songs and who actors/actresses were. Who is Mel Gibson? You know the movie Fifty First Dates with Adam Sandler? That was/is me.. I think this was the worse stoke OT, ST, PT….More drugs…
We decided to go to 15Mayo of Rochester in August of ’03 to try and make heads or tails out of this mess. Mi vida loca.. A big hospital that is World-known. They should know what to do, right? We spent eleven days there and the diagnosis was confirmed, Hemiplegic Migraine with vascular constrictive strokes. I was put on more medications and told to come back in a year. I asked what was the possibility of having another stroke? The answer; “You can have one at anytime.” Little did I know I would in a few months, even on Coumidin, a blood thinner..
In September, I had than drunk feeling again as if I was on a boat rocking back and forth. I tried to sit on a chair and it felt like the earth moved because I missed it and my personality was changing, I was isolating ,which if you know me I am a bubbly, out going, personable person…could it be the meds? Should I go in??? That is the question of all HMers.. I did, a couple days later…another stroke two little ones..More drugs..Ugh…Enough is enough..
Time to get off of these drugs, they are killing me. We went to 16Diamond Headache Clinic in Chicago after Tim spent hours on the phone, sent all my records, explaining my condition and what was the best for me. Tim had been doing his own research and was my medical dictionary and they said they would detox me. Well, after an evaluation they said, “No, I would need to add another drug, Depakote, in addition to the other medications I was already taking. They didn’t think they could safely detox me.” Well after 3 strokes, (4 infractions) and 33 drugs we had enough. My life is more important than these drug companies. Even Mayo added more drugs after a stroke. What to do? Research research research.
We went to the 17Born Clinic in Grand Rapids, a Holistic Clinic. With an out patient IV therapy and supplements and some ideas on how to wean me off all the drugs, everyone thought Tim and I were crazy and was going to kill me. Our response.. “The drugs are killing me”. It was a very hard thing to go through for Tim and I, I had massive withdrawals but I am here to live to tell about it. A support system is key to this debilitating disease and without it I do not know where I would be today.. My hat goes off to God first and foremost and to my husband. Many families fall apart during times of stress like this, my night in shining armor, stood by me and still does to this day. Without their love and support who knows. Also some of our close friends and family who stopped their lives to take care of ours.
I did not suffer another stroke or TIA/stroke til ’08. This one I caught in time, within a few hours, and had no lasting effects. It took a month to shake them off though. I personally think it was a really bad HM attack and as all HMers know the medical professionals do not know what to think of us. It may have been one, I can’t remember and It happened out of town. It couldn’t have been that bad, I was ok’ed to jump out of a perfectly good airplane at 10,000 feet. I went Skydiving!
I am now on a limited amount of medication for migraine preventive, abortive, anxiety, pain, GERD,and supplements. This is the best I have felt in years.. I still have attacks but not as many and not as severe. Could it be my age? I have fired many doctors, mainly neurologists, and just have a MD who follows my advice about my HM and it is working the best. I have my films and do not hesitate to let the doctors know that I am not too young to have a stroke. My condition is real. I have proof. They work for me. I pay them. Remember you are the HM voice and we are the educators God bless.
- 18Topamaz 50 2x a day
- 19Plavix 75mg
- 20Verapamil 240mg
- 21Wellbutrin 100sr 2x a day
- 22Prenatal Plus
- 23Zantac 75
- 24Percocet PRN
- 25Xanax PRN
- Iron pills
- 26Fenegrin PRN
- Calan (verapamil)
- 29Excedrin Migraine
- 30Chiropractic care
- Chemically induced menopause
- Chloresterol medication
- Morphine spray
- Magnesium IV
- (Mercury stripper) IV
I started doing more research and finding groups on facebook that had to do with HM and I found these great groups: Hemiplegic Migraine, Hemiplegic Migraines Support Group, For those who suffer Hemiplegic Migraines and the one I created HmersR us Worldwide..Hemiplegic Migraine. It was great to find people like me who I could talk to about my disease and who understands and compare notes. A great support team. I remember when there was a mention of a website being created and at first it did not seem like it was going to happen . Then a few of us started talking and planning and now the Hemiplegic Migraine Foundation (HMF) is starting to come together as we are too. What was once just a speck in our eyes, now it is starting to get off the ground and I am so honored to be a part of it.
1The perceptual disturbance experienced by some migraine sufferers answers.com
2Sensitive to bright light
3Cone rod dystrophy (CRD) is a progressive retinal degenerative disease that causes deterioration of the cones and rods in the retina and frequently leads to blindness ~Pubmed
4HM is a rare neurological disease that exhibits stroke-like auras that can last up to months.
5Northern Michigan University in Marquette, Mi
6The combination of isometheptene mucate, dichloralphenazone, and acetaminophen is used to relieve migraine and tension headaches. It prevents blood vessels in your head from expanding and causing headaches.
7Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness caused by lung diseases such as asthma and is in a class of medications called bronchodilators. ~Pubmed
8Ethinyl estradiol and levonorgestrel contains a combination of female hormones that prevent ovulation (the release of an egg from an ovary). ~ www.drugs.com
9a ‘water pill,’ is used to treat high blood pressure and fluid retention caused by various conditions, including heart disease. It causes the kidneys to get rid of unneeded water and salt from the body into the urine. This medicine is sometimes prescribed for other uses. ~www.nlm.nih.gov
10blood vessel constriction in response to irritative stimuli
11permanent tissue damage and death of all cellular elements (neurons, glia, vessels) due to prolonged or severe ischemia www.strokecenter.com
12OT- therapist to relearn independence, meaning and satisfaction in all aspects of life; ST- Treatment of speech and communication disorder PT- A branch of rehabilitative health that uses specially designed exercises and equipment to help patients regain or improve their physical abilities. ~www.medicenet.com
13A transient ischemic attack (TIA) is when blood flow to a part of the brain stops for a brief period of time. A person will have stroke-like symptoms for up to 1-2 hours. ~www.nlm.nih.gov
14Is a blood thinner and used to prevent heart attacks, strokes, and blood clots in veins and arteries.
15Founded by Franciscans, this Mayo hospital offers air ambulance, heart and lung transplants, neurosurgery, stroke rehab. ~ www.mayoclinic.org
16the oldest and largest private headache center dedicated solely to the diagnosis and management of headache pain. It is also the one place where the team of headache doctors takes a personal interest in the long-term well-being of each patient. www.diamondheadache.com
17The Born Preventive Health Care Clinic is a staff of caring physicians and assistants who are dedicated to the health and nutrition of patients. We specialize in finding the cause (not just the effects) of a health problem through extensive research and testing. www.bornclinic.com
18I a class of medications called anticonvulsants. It works by decreasing abnormal excitement in the brain.
19An antiplatelet drug that works by helping to prevent harmful blood clots. www.nlm.nih.gov
20a calcium channel blocker that works by relaxing blood vessels so blood can flow more easily
21an antidepressant medication that affects chemicals within the brain that nerves use to send messages to each other. www.medicinenet.com
22Mixture of of supplements
23a histamine H2-receptor antagonist that inhibits stomach acid … Zantac OTC is manufactured by Boehringer Ingelheim
24a combination of acetaminophen and oxycodone. Oxycodone is in a group of drugs called narcotic pain relievers. Acetaminophen is a less potent pain reliever that increases the effects of oxycodone. www.drugs.com
25medication used for panic or anxiety attacks
26A naseau medication
27atricyclic antidepressant drug.
28The FDA has approved botulinum toxin type A for treatment of chronic migraine headaches in adults
29Over the counter migraine relief medicine
30A system of diagnosis and treatment based on the concept that the nervous system coordinates all of the body’s functions, and that disease results from a lack of normal nerve function. Chiropractic employs manipulation and adjustment of body structure www.emedicinehealth.com
31The actual mechanism of action by which gabapentin acts in the brain to control seizures and treat pain is not known, although it appears to alter the action of nerve cells. www.minddisorders.com
32Lithium carbonate or lithium salt naturally occurring element
33an antidepressant drug of the selective serotonin reuptake inhibitor (SSRI) class
34is an antidepressant of the selective serotonin reuptake inhibitor (SSRI) class
35is an antidepressant which functions as a selective serotonin reuptake inhibitor (SSRI)
36used to relieve anxiety, muscle spasms, and seizures and to help anxiety
37A narcotic analgesics, a group of pain medications similar to morphine www.nlm.nih.gov
38An antitussives. Hydrocodone relieves pain by changing the way the brain and nervous system respond to pain. www.nlm.nih.com
39a class of medications called anticholinergics. It relieves muscle spasms in the gastrointestinal tract by blocking the activity of a certain natural substance in the body www.nlm.nih.gov
40Advair contains fluticasone and salmeterol. Fluticasone is a steroid
42a beta blockers
43an anticonvulsant drug used in the treatment of epilepsy
44called corticosteroids. It works to treat patients with low levels of corticosteroids by replacing steroids that are normally produced naturally by the body. It works to treat other conditions by reducing swelling and redness and by changing the way the immune system work www.nlm.nih.gov