Going through a hemiplegic migraine can be one of the scariest experiences of your life.
My clinical practise has given me the chance to help them and today I will be sharing the 3 worst “sins” of hemiplegic migraines along with information about sporadic and familial hemiplegic migraines as well as common triggers and what to do.
Let’s start at the beginning.
What is sporadic, familial and hemiplegic migraine?
Hemiplegic migraine is a rare subtype of migraine with aura that causes intense throbbing pain, nausea, sensitivity to light and sound.
This type of migraine is extremely severe and one sided which gives it its rare and one sided presentation.
The paralysing effect it is known for is called motor aura and is attributed to cortical spreading depression which we will talk about further on.
It also causes numbness, tingling and extreme weakness that is comparable to temporary paralysis giving it its name.
Hemi – half
Plegic – paralysed
Hemi-plegic migraine = Half-paralysed migraine
Usually it is only weakness not paralysis but can come with a range of other stroke like symptoms such as speech loss, decreased consciousness etc that make it a very scary experience.
There are two subgroups of hemiplegic migraine:
- Sporadic hemiplegic migraine – This is hemiplegic migraine that isn’t found to have an inherited connection from your family and happens “randomly.”
- Familial hemiplegic migraine – This is hemiplegic migraine that has a traceable family history. The subgroups of FHM are based on genetic testing.
Is hemiplegic migraine dangerous?
Before we talk about the dangers of HM see our video below on understanding hemiplegic migraine.
Hemiplegic migraine is easily confused with stroke as symptoms are very similar so it’s always most important to rule out this possibility.
That said, hemiplegic migraine is still a very serious form of migraine and with symptoms being so disabling it can be dangerous.
With the involvement of cortical spreading depression in hemiplegic migraine this means there is a massive inflammatory problem mixed with a lack of energy and excitation in brain cells which can cause brain cell death.
Many hemiplegic migraine sufferers are more likely to have the characteristic brain “lesions” that long term migraine sufferers have been found to exhibit.
Symptoms of hemiplegic migraine
The symptoms of sporadic, familial and hemiplegic migraine are fairly the same.
The international headache society has this criteria for hemiplegic migraines:
Attacks that fulfill migraine with aura and exhibit both:
- Fully reversible motor weakness
- Fully reversible visual, sensory and or speech language symptoms
Attached below is a graph showing the possible symptoms and a more complete list can be found here.
That said, the most common symptoms are:
- One sided weakness of the body with face arm leg involvement
- Numbness and tingling on affected side
- Visual aura
- Speech problems
- Fatigue
- Dizziness
- Loss of motor control and coordination
- Slurred speech migraine
See the hemiplegic migraine guide from axon optics here.
Can hemiplegic migraine cause stroke / death?
There are some very serious symptoms that happen during hemiplegic migraine that should not be taken lightly.
These include:
- Coma or a decreased level of consciousness
- Memory loss
- Confusion and loss of coordination
These can be especially dangerous if you are driving, operating power tools or heavy machinery.
Though they are similar to a stroke, the symptoms usually come on slowly, build up and then go away slowly.
WebMD states that there isn’t a predictable pattern with how it generally progresses, but from my experience individuals will experience the same progression each time they experience a flare unless their health changes for the better or worse.
Prognosis
According to the NIH,
“Although most people with FHM recover completely between episodes, neurological symptoms such as memory loss and problems with attention can last for weeks or months.
The occurrence of FHM attacks tends to decrease with age.
The eventual neurologic outcome is often benign; however, about 20 percent of individuals with FHM develop mild but permanent difficulty coordinating movements (ataxia), which may worsen with time, and nystagmus (rapid, involuntary eye movements).
Unusually severe migraine episodes have been reported in some people with FHM.
These episodes may include fever, seizures, prolonged weakness, coma, and, rarely, death.”(Link)
Hemiplegic migraine disability / Is it a disability?
Hemiplegic migraines are incredibly disabling but their acceptance into a disability claim will depend on how severe they are and if they keep you from working a normal job that pays equal to or more than the disability payments.
Here is an article with information on hemiplegic migraines and disability claims.
Here is a great article on getting approved for migraine disability.
Hemiplegic migraines most common treatments
According to healthline the most common treatments for hemiplegic migraine are high blood pressure medications as well as anti seizure drugs.
In the Migraine Professional community talk we had here there are quite a few people who use triptans for their hemiplegic migraines but healthline says that they are not recommended as it can make hemiplegic migraine symptoms worse or cause permanent damage.
For more information on hemiplegic migraine treatments go here.
Hemiplegic migraine in pregnancy
Studies show that most pregnancies will actually reduce the chances of a migraine sufferer experiencing an attack and this is attributed to many factors including skyrocketing progesterone and DAO.
But some aren’t so lucky and this can actually mean increasing migraines.
It’s important to consider what is causing the migraines in the first place and to look at root causes.
If you’re not experiencing any digestive issues like bloating, burping, reflux, pain or loose stools…
And if you don’t experience any hormonal difficulties around ovulation or menses like pain or PMS…
Then it’s important to get a full assessment on everything that is going on from a holistic health practitioner like a functional medicine practitioner.
Do you get fatigue?
Do you have trouble sleeping?
Do you have inverted breathing?
Have you been screened for food intolerances?
Have you had your mineral levels checked?
Is there emotional stress or trauma going on in your life?
There’s many more.
These can all affect the strain that is put on your system and the likelihood that your brain will not be able to continue normal functioning which may lead to trigger.
If you are experiencing extreme symptoms like those of a hemiplegic migraine then taking every win you can get in supporting your body and lightening the brain and nervous systems burden is absolutely necessary.
Familial hemiplegic migraine genetic testing
According to the NIH, “Mutations in the CACNA1A, ATP1A2, SCN1A, and PRRT2 genes have been found to cause familial hemiplegic migraine.”
To understand which genes affect which type of familial hemiplegic migrane go here.
If you are looking for genetic testing try orphanet, blueprintgenetics or ambrygen.
Hemiplegic migraine diet
The same things that can cause regular migraines to trigger, can cause hemiplegic migranes to trigger.
See this article on migraine triggers and if you want to know everything there is to know about food triggers then see this guide.
But hemiplegic migraines because of their connection to cortical spreading depression are intimately linked with epilepsy and this means that our metabolism is compromised leading the brain excitation.
One of the best ways to prevent epilepsy and many types of migraines by reducing our brain cells extreme excitability that can lead to their death is through a ketogenic diet.(Link)
The study above found 90% of migraine sufferers to respond to a ketogenic diet because of its ability to reduce neuronal excitation and cortical spreading depression. (Link)
Now for the good stuff.
The 3 worst sins of hemiplegic migraines
1. Triggers
First and foremost as with any type of migraine you need to understand what triggers and causes are.
A trigger is something that adds to your trigger level.
Your trigger level, if it goes above your threshold level may trigger a migraine.
So you want to keep your triggers low and threshold high.
Examples of triggers include:
– Weather changes
– Bright lights
– Scents
– Sensitive foods
– A stressful event
Then we have causes.
Causes are deeper issues that are going on within us that compromise our body. If a cause is strong enough, it can develop more triggers.
For example if you have a gut dysbiosis(bacterial imbalance) then this can lead to the inability to digest some foods properly and create food sensitivities.
These food sensitivities can then trigger you and get blamed when really it was the dysbiosis.
Causes can get incredibly deep like traumatic events, heavy metal toxicity, parasite infections etc.
It’s important to address the cause as well as the triggers.
Removing triggers can help you get better within a few days but if the cause isn’t addressed then your body can continue to develop triggers and you can end up with a seemingly endless and impossible list of triggers.
Start slow, work your way back through how the condition progressed, what started it, what was going on in your life when it started and what could have pushed it over the edge.
If you can’t make any concrete connections then it’s important to get a full lab panel from a functional medicine practitioner.
This will tell you all about amino acid levels, enzymatic issues, fatty acids, vitamins, minerals, heavy metals, organic acids, neurotransmitter issues, hormonal problems etc.
2. Insulin/carbohydrate roller coaster
This is huge for migraine sufferers and especially for hemiplegic migraine sufferers because of their connection to cortical spreading depression, epilepsy and the ketogenic diet.
It’s important to understand that our brain can run off of two fuel sources; sugars or fats. These get broken down into glucose and ketones.
If we are constantly eating carbohydrates and sugars we can develop high blood sugar levels which lead to a huge number of issues like obesity and diabetes.
One of the newer terms for alzheimer’s is “diabetes of the brain” because the brain becomes so saturated with empty sugars and attacks from insulin that it becomes insulin resistant and cannot produce energy from sugar anymore.
What is insulin and what does it do for us?
Insulin is a natural hormone that for the purposes of this conversation takes sugar out of our blood and deposits it into our cells.
When we eat a food full of carbohydrates(these are broken down into sugars) or sugars they get broken down and absorbed into our blood. Causing blood sugar to go up. (caffeine and other stimulants can mess with insulin as well)
High blood sugar can send us into a coma so our body tightly regulates it. When it notices blood sugar goes up it releases insulin.
Insulin takes the sugar(and other nutrients that are bound to it) and puts it into our cells.
And this is great as long as our cells need the sugar, because then they are insulin sensitive.
If they don’t need the sugar, they become insulin resistant.
If we continue to provide 24/7 sources of sugar to our body our cells get overloaded and start to resist insulin completely.
The problem is that this mechanism can become dysfunctional and then our cells stop responding to insulin at all.
We want to avoid this as sugar and insulin are both necessary to deliver nutrients and help our cells function properly.
This is where the ketogenic diet and ketones come in.
Instead of us constantly eating high carbohydrate meals(sugar, grains, too many fruits) we eat small amounts of slow carbohydrate meals (dark leafy greens, vegetables) and moderate amounts of protein along with higher fat.
This creates a switch in our body that regularly happens when we go into periods of fasting.
When the sources of carbohydrates and sugars go down, our body starts taking the fat we have in our body and breaks it down.
When it breaks it down it creates ketones which are the basis of the ketogenic diet because during the diet you are essentially living off of ketones.
This diet is amazing for lowering blood pressure and improving weight loss and insulin sensitivity…
BUT
It is phenomenal for the brain.
It lowers excitation in the brain and provides a really powerful antioxidant called butyrate that prevents brain cell damage.
Remember that the one common connection behind all migraines is oxidation.
This is huge and studies like this one show that it works for migraines and this one and this one explain how it may.
Many doctors have little to no nutritional knowledge so they need to be educated on what a ketogenic diet is if you bring it up to them.
I’ll break down the ketogenic diet in a simple way here but it requires more education on your part:
Stay below 25 grams of digestible carbohydrates per day
Keep protein intake moderate and only eat quality pastured and wild meats
Eat enough fat to feel satisfied with each meal
For more information on ketogenic diets go here.
Always ask your doctor before making any changes.
See our facebook conversation on fasting here.
3. Not Supplementing
Next we have some of the well studied all star supplements.
Everyone is different so only you and your doctor can determine what works for you.
We are focusing on fixing the cause and the cause is different for different people so you have to find the one that is holding you back from health.
First and foremost is one of the best ways to “cool” any fire that’s going on in the brain and this is magnesium.
Magnesium deficiency contributes to headaches by:
– Increasing muscle tension
– Promoting vasoconstriction
– Allowing NMDA sites to be activated leading to brain hyperexcitability
– Impairing cellular energy metabolism
In one study they found that, “In weeks 9-12 the attack frequency was reduced by 41.6% in the magnesium group and by 15.8% in the placebo group compared to the baseline.”
Unless there is renal failure magnesium is seen as a safe option and many places recommend starting at 200mg a day and working your way up to bowel tolerance.
Magnesium is known as the relaxation mineral and it can relax the poop right out of your bowels.
If you have trouble taking it orally then getting a magnesium spray for your skin or doing regular epsom salt baths 3-4 times a week can do wonders.
See our video on magnesium here.
Next we have CoQ10
CoQ10 isn’t as well known as magnesium but it is an essential part of the energy generation cycle in our cells.
This study found that migraines were associated with low CoQ10 levels.(as well as low vitamin D and B)
In these two studies they found that CoQ10 supplementation was able to reduce attack frequencies of migraines by 50 percent in 61% of participants and by over 50 percent in 48 percent of participants, respectively. (Study, Study)
In the first study they used 150 mg(1x a day) and the second 100 mg(3x a day) of CoQ10
CoQ10 can come from many foods and the amount you need depends on you but I have attached a graph below to make food intake simple.
And finally is B vitamins
B vitamins are absolutely amazing and crucial for our brains. The problem is that if we take too much of them at any one time, our body doesn’t hold on to them and they end up being urinated out.
This means we need them consistently taken throughout the day, ideally from food sources but also from supplementation in severe cases.
Some migraine sufferers have methylation problems which reduces how much of a vitamin gets converted into a useable nutrient by our bodies which is why if you are taking a B complex supplement it would be important to see if methylated versions work better for you.
Riboflavin(B2) is the most common and found 200-400 mg a day to be effective for migraine prophylaxis here.
“68.4% of cases had a 50% or greater reduction in frequency of attacks and 21.0% in intensity.”
There is also Pyridoxine(B6) which was found to have “led to a significant decrease in headache severity.”(study) This study used 80mg per day.
B9 and B12 have also been studied to be very effective and incredibly safe because they are just nutrients.
It’s important to note that B vitamins always come in complexes and this means they require each other for absorption and utilization by the body.
There are many amazing tools we can use to reduce the frequency, severity and duration of our attacks but without assessing, we are guessing.
Make sure you get your healthcare provider to test your gut, test your hormones, look for trauma, test mineral deficiencies and more so that you can get a whole and complete picture of what’s going on.
This will allow you to focus on the most important and key areas that can(and usually do) create the need for migraines in the first place.
This is the way we do it at Migraine Professional because we understand that as long as you don’t treat the cause, you are only palliating and prolonging the pain.
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Have you ever experienced a hemiplegic migraine?
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