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Hemi…whaat?

Hemiplegic Migraine- what is it?

Hemiplegic Migraine is a sub type of migraine disease and considered the “Grandfather of Migraines”. So you’d think there would be more known about it. There are two types of HM; familial Hemiplegic migraine(fhm) and sporadic Hemiplegic migraine(shm). It’s about as rare as they come, as only 1 in 10,000 people present with it. Lucky us. 
They tell us an attack is like a stroke, epilepsy, spinal meningitis and a LSD trip all coming together causing terror through your whole body. I say it’s simply a trip through Hell. 
Hemiplegic Migraine- symptoms?
There are so many different symptoms that people in the HM world put up with. Personally, my most debilitating factors are; lack of muscle control, intense visual disturbances, intense sensory and motor disturbances, major loss of appetite/nausea/vomiting, and severe head/facial pain. These are just the worst five amongst the tons. I’ve seen people with cases not as bad as mine, fortunately. But also many with cases much much farther along than mine, unfortunately. 
 Hemiplegic Migraine- Brain glitches?
At the end of the day, little is known about the reason for this nasty disease. But we do know it’s a gene mutation involving muscle and nerve cells, calcium channels and energy. It’s said that during an attack the calcium channel doors are “stuck open”, causing an imbalance amongst calcium and other ions. This basically makes the brain freak out and something called Cortical Spreading Depression happens(no, not clinical depression). Aka- cells are first hyper-stimulated and secondly suppressed. So, it has a domino effect. All the cells start going crazy(hyper-stimulated), but then get overly exhausted(suppressed). Eventually this spreads to the trigeminal nerve; causing dilation, tingling and swelling of the areas affected by this nerve. Serotonin levels are thrown off and affect more body processes as well. My extremely low magnesium levels cause me a lot of problems, I try to watch my low iron, and my very low blood pressure is kept an eye on. All in all, when an attack starts take your rescue meds and get to a comfortable setting to wait out the ride, you never know what may hit this time. 
Hemiplegic Migraine- what helps?
Now that you know more about this, it should come as no surprise that there is little known about the proper treatment for HM. We do, however, know to avoid Triptan medications as they greatly increase our, already, high risk of stroke. Ergots are another NO. You have to make your doctors aware of this, because most have no idea what to do after hearing “I have Hemiplegic Migraines”. I used multiple Triptan’s before Diamond. 😬
My med list?
Currently I take four medications and 2 supplements daily. I have four rescue meds, and get weekly infusions in the hospital. 
What works best for me? Shockingly, high doses of Benadryl given via IV make the largest impact. 
Daily 
-Morning: I take a 500mg magnesium supplement, Vitamin B12 supplement, stomach ulcer medication, and nausea suppressing/appetite inducing medication 
-Afternoon: nausea suppressing/appetite inducing medication 
-Evening: nausea suppressing/appetite inducing med, Serotonin medication, & calcium channel blocker 
Rescue meds 
-Triple Shot: three medications used together 1-pain med 2-antiemetic 3-histamine 
-Anti-epileptic medicine 
-Benadryl Intramuscular Injections
-Anti-nausea 
Infusions
-Benadryl 
-Valium 
-Phenergan 
-Magnesium 
-Fluids 
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Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, PICC line, port, port surgery, portacath, Seizures, Today I Win, Uncategorized

Ported😬

No one likes needles. And if you do, you’re crazy. At the beginning of this crazy ride needles scared me to death, I would squirm and about make myself sick, just with the anticipation. But as time went on I adjusted. I assured myself that if I took deep breaths and let the nurse do their thing, it would be over quick. I got to be a real good sport, as long as no one would talk during the IV attempt.

But no way it could be that easy. Each time a nurse would inspect my arms they’d comment on the scarce good veins I had to offer. Since I was usually going in pretty dehydrated, I knew that wasn’t helping things. At the beginning of this year I only had a few bad IV experiences to show for it. That was at the beginning. 

In October I started my 15 day hospital stay in Chicago. My first IV ended up infected and really painful. At 2am my night nurse agreed that it had to be changed. After careful inspection she couldn’t get another line started and called the pediatric nurse in to try, he got a tiny IV started, but it would have to do. Being in my hand it wasn’t very protected and by the next day I had knocked it into a nerve. Bye-bye IV #2. My nurses decided a picc line was my best bet, and I was happy to try it. A picc meant I could get all of my meds and blood drawls via that one line. Sweet.

So into the OR I go. Dr. Hickey was gorgeous, seriously. The two nurses were hilarious, but it was my first time getting a “surgical procedure” and the nurse swinging a tall needle full of lidocaine around definitely knocked up the nerve scale. Don’t worry, I made it through, no harm, no foul.

Unfortunately I ended up really sore and uncomfortable, all signs pointed to blood clot. After a quick ultrasound it was confirmed that I had, indeed, already developed a clot around my picc. It was still superficial and was taken care of with daily blood thinner shots in my tummy…ouch!

Fast forward to Decemeber. Another 9 day Chicago hospital trip resulted in a blown vein, and three more IVs. Yay.

 Later that month in the ER a nurse placed a bad IV that ended up infiltrating the medications into my surrounding tissues…not my vein. Infiltrated IVs are PAINFUL!!

Now, skip ahead to March. Yep, you guessed it, another Chicago hospital stay. This one 11 days inpatient. IV #1 was a placed really well in my right hand, but since IVs can only be left in for 4 days it had to be replaced. IV #2 was placed with some trouble in my left hand, but I still got 3 days out of it. IV #3 took 2 tries, but ended up in the bend of my left arm. Unfortunately, the vein was just too small and on day two the line had to be removed. Keep in mind that 3 of the meds I get via IV are terrible for my veins, so as time moves on my veins just kept getting worse. IV #4 was almost impossible to get placed. A last resort attempt earned the IV a spot in the bend of my right arm. The next morning my day nurse came to push my first round of Benadryl. It hurt so bad. Benadryl literally slices your veins and hurts, but usually I just wince. When the nurse reattached my fluids I was doubled over in pain. I knew something was not okay, and myself stopped the fluids from running. I called my nurse in and she checked the blood return, normal for my weak veins, she said. She started trying to flush with saline and I started crying. I had to yell at her to stop. I needed to listen to my body. I’m no IV whimp and this hurt sooo bad.

That was at 10:30 in the morning, by 1:30 that afternoon my nurse hadn’t been back in for any of her rounds or to give any of my afternoon meds I needed. I called in the charge nurse, who just happened to be one of the nurses I’ve stayed tight with. My arm was so swollen I had to cut the bracelets off, it was sore to the touch and a rash had started to follow the line of my vein. Vickki was concerned with my history of blood clot and had that IV out right away. That meant I had earned myself my 5th IV in 11 days. Boo. I left that trip with painful arms, collapsed veins and bad infiltration. No Bueno.


Back home my weekly infusions started and each week IVs were getting harder and harder to start. They were having to use tiny lines which was painful for me, and made the process take 6 hours.

Finally, one Thursday no one could get a line started. Infusion called a NICU nurse just to try. She gave it three shots and ended up blowing all three veins. There was no where left to try. My neurologist ordered another picc line. They set up ultrasound to look for the best placement option. Instead, all they found were tiny unhealthy veins that were unuseable. Ugh. Unable to get my treatment, they set up an appointment to get a tunneled picc in my chest on Tuesday.

I had done my research on all my options and had decided that instead, a portacath would be my best option. I had to fight my doctor on it, but stood strong that was what I wanted. A port is completely under your skin, so it doesn’t restrict you as much as a tunneled picc or Hickman line.  I would be getting a power port placed right under my collar bone. Finally.


So, after two attempts to draw blood and six attempts to place an IV so I could be put out the surgeon decided to place a special catheter. He tented, sanatized, and numbed the site before placing the catheter. He got it all the way in before discovering an unknown blood clot and had to remove it from my left arm. He repeated the process on a new spot in my right arm and finally got it. But it was so sensitive that a nurse had to stand and hold it in place while the meds dripped in.

The port placement takes roughly 45 minutes, mine took almost 2 hours. The first hour was spent trying to get accsses. Ouch. But now the port is in place and healing nicely. Thank goodness!!!


I’ve had it accessed three times now, and it is definitely tolerable compared to the multiple sticks previously. Yay!