Living with Hemiplegic Migraines

Living with Hemiplegic Migraines

The day I came down with a hemiplegic migraine was nothing short of ordinary. I had finished visiting a family member on the south shore of Long Island and was on my way home with my mother when I saw flashes of light appear from the corner of my left eye. At first I dismissed it as lightning as it was pouring rain outside the car window, but by the time we reached our condo it was much more than weather. I had a migraine worse than any other and I felt my left side of my body go numb. It was as though I had a stroke.

By evening, my mother finally saw that there was something terribly wrong with me. She too dismissed it as a migraine or just me fooling around. She saw I couldn’t lift my left arm and leg and my face was wonky. She drove me to Mather Hospital where I went under a battery of tests. It was early next morning when the neurologist and internal medicine doctor came around to tell us the news. They originally thought I had suffered a stroke but in reality I was suffering from my first episode of hemiplegic migraines.

Ever since that rainy summer day, I suffered on and off with hemiplegic migraines. It was to be the start of my journey with chronic illness and would be one of the first symptoms in my long list of symptoms to my (fingers crossed) final diagnosis. My hemiplegic migraine went into remission around the age of 22-23 but soon returned at the age of  36. 

At 36 I had a hysterectomy due to tumors growing in and outside my womb, my endometriosis was spiraling out of control and I was in constant pain. A month after the surgery, to the day, I suffered a mini-stroke and a hemiplegic migraine on top of it. Since then my health has never been the same. 

Hemiplegic migraines are extremely rare migraines. They can hurt like a migraine or not. It can have an aura such as seeing lights, a sense of foreboding, tingling and numbness on one side of the body (very rarely and can happen to both sides), and sensitivity to light and sound. You can also have seizures which too is rare. And hemiplegic migraines come in two categories FHM or SHM. FHM is familial hemiplegic migraine and SHM is sporadic hemiplegic migraine.

Familial means you and a family member suffer from hemiplegic migraines so you’re genetically predispose to having it. Sporadic means there is no family history and this is just a bad luck of the draw. I fall into sporadic which is even rarer. My family does have a history of migraines but no one has hemiplegic. 

Now you think because the word migraine is included in hemiplegic that you can just take two Advil, lie down in a dark room and go to sleep. It is far from it. Having hemiplegic migraines is even worse than that because no amount of pain killers will take away the pain (if you get pain with it because sometimes it will strike without pain) and many ER doctors are not familiar in handling hemiplegic cases. Morphine, tramadol, hydrocodone, etc do not work and if they do it is for a short time in which the pain and its symptoms rebound with a ferocity you have never felt before. Your left or right side of the body will slump, go numb and your face will fall as though you had a stroke or Bells Palsy.

Sometimes you will head straight for the ER and doctors will be so mystified that they will dismiss you as a fraud and even insult you that you are in it for the drugs. If you already have received your hemiplegic diagnosis, ER doctors don’t like being told what to do. They will pump you with what they think is best so my advice is to come armed with your neurologist information and the drugs he or she may have prescribed for you to help you during an episode. Now you may wonder, well Erica if you received a diagnosis and you are taking meds for it why the hell are you in the ER? Its because hemiplegic migraines can take a sinister turn. 

The drugs you are taking to control it have plateaued  and you may need an i.v. version of it. You also may need to change drugs or you have fallen and suffered injuries from it. The scariest of the symptoms is seizure and paralysis (left, right, or full side) which can affect your ability to eat or drink. Then there are the side effects from the drugs ranging from allergic reaction to full blown Steven Johnson Syndrome. At times you will vomit and shit yourself because a) you can’t make it to the bathroom on time because you are down to using the strength of one side of your body and b) your brain is mushed by the pain or the drugs.

The drugs that do work for hemiplegic migraines. I have tried them all.

I will list them:

Depakote- depakote is divaloprex sodium which is used to treat bipolar, epilepsy and severe migraines. Depakote works best for me because I suffer from both epilepsy and hemiplegic migraines. The major downside to it is weight gain. At the time of my last pregnancy I was 150lbs/10.7 stones. When I was put on depakote it shot up to 202lbs/14.4 stones in less than a month and a half. I became the Julia Child of midnight snacking and even though I eat healthy as I do love my vegetables, my cravings would give way.

Depakote also has serious effect on the liver. My liver function tests always came back abnormal or high and I was diagnosis with fatty liver disease. A recent hospital stay had concluded that depakote may have played a role in my liver issues but I was screwed to begin with due to MTCD, mixed tissue connective disorder.

Since I had VNS therapy surgery for my epilepsy, I no longer take depakote but slowly my migraines are making their way back.

Topamax- also known as the devil’s pill, dopamax and it’s FDA name topiramate. Now this pill works the complete opposite of Depakote. I lost so much weight that I looked sickly at times. It makes everything you eat taste like sulfur or charcoal. Soda pop tasted as if I had a hairy tongue and blood in my mouth. My hair fell out in massive clumps and I had issues with my bones. Every time I walked it felt as though I was walking on my bones. It was excruciating. I also suffered from brain fog and it made me very sleepy. During the time I took topamax I was unable to write or make coherent sentences. 

I take other medications too, such as keppra and gabapentin. These are anti-convulsion and mainly deal with my epilepsy. I will talk more about these on another Living With post. 

Depakote and Topamax both worked well for me. Yes the side effects are absolutely horrible but there are times when I rather ride out a side effect than going through a hemiplegic migraine. Since the return of my hemiplegic migraine I’d suffer from them nearly every single day until I found a neurologist who understood me and was willing to work with me.

Depakote and Topamax are just two pills in the many that deal with hemiplegic migraines. There are also calcium channel blockers that work too. It is all about finding the right combination and what worked for me and most of all a great neurologist.

If you suffer from hemiplegic migraines my strongest advice is to find a neurologist in your local area and create a support system with your general doctor and neurologist. When you have a team of doctors it is easier to manage your hemiplegic migraines.

For instance my general doctor is fully aware that I suffer from hemiplegic migraines and epilepsy and an autoimmune disorder. If my prescription runs out and my neurologist is unavailable because he is on holiday, my doctor can fill in. He can vouch for me if I’m in the ER and tell them exactly the meds I need in order to get well quickly. My goal is to control the hemiplegic migraine and make recovery quick. 

There are times when the side effect from a hemiplegic migraine can last from one day to months. One time it was so severe that I had to have rehabilitation at home. I had to regain the use of my limbs and learn how to use a walker. I even suffered from Alice in Wonderland Syndrome and ended up on the floor feeling and seeing as though my bed was so massive that I wasn’t able to reach it. My westie looked like Falcor from the Never Ending Story. It took a long time before my symptoms went away. 

If you are blessed with family nearby educate them on hemiplegic migraines. If you suffer from a major episode ask them to make casseroles that are easy to place in the oven by your significant other so you don’t have to rely on takeaways and foods that may make you gain weight.  Hire a maid or nanny if you can to deal with any mess and to make sure your children get to school on time. If not round up a friend who is willing to help out with chores and doing a carpool for the kiddos. 

Depression is a huge side effect of hemiplegic migraine or any chronic illness. My strongest advice is to talk about it. I talk to my doctors all the time about my depression. I have taken Zoloft and Lexapro in the past to keep my major depression at bay. At times it works and at times it doesn’t because again I may have plateaued and I need an adjustment or it isn’t the hemiplegic migraine but environmental factors. Again this topic I will discuss on a later Living With post. 

Living with hemiplegic migraines is awful but at the same time eye opening. You will appreciate those around you more because of the help you receive and if you are honest with them, the love that they give you. I am blessed to have a husband who is my caretaker and boys that are willing to help. I also have great friends that will cook or clean for me when need be and most of all listen.

I can’t count the amount of times I’m thankful for the support of my doctors, family and friends. Living with hemiplegic migraines is difficult and now the normal for me but it doesn’t have to be the end of one’s life. It just takes a load of work, trials and mistrials and of course believing in yourself that you can conquer it. I know I can.

For more information on hemiplegic migraines, please click on the following links:

The American Migraine Foundation

International Hemiplegic Migraine Foundation

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