Migraines, Ehlers-Danlos syndrome (EDS), Mast Cell Activation Syndrome (MCAS), Birth Control Pills, and Light Sensitivity 

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I’ve suffered from chronic headaches my whole life — including migraines. My first experience with migraines was watching my mom try to cope in any way that she could with the horrid headaches she would often get. These headaches left her sick to her stomach and in bed, unless she had closed herself in the bathroom or closet to get away from any incling of light or noise. Fast forward to puberty around age 10 years old, and I quickly realized that I was one of the lucky ones as well. While I had dealt with headaches since I was much younger, these headaches were distinct and made me feel like I was going to die — that’s when my mom informed me that I was “just like her.” Great …..

“Migraines and other types of headaches, such as tension headaches and sinus headaches, are painful. Migraine symptoms include a pounding headache, nausea, vomiting, and light sensitivity and are treated with antinausea drugs and abortive or preventive medications. Headache remedies include pain relievers.”
Migraines & Headaches Health Center on WebMd – http://www.webmd.com/migraines-headaches/default.htm

When a migraine was coming on, I would start seeing spots in my vision, usually in one eye, that were darker or seemed like I suddenly had blind spots in my field of vision. The spots would turn to swirly lights — appropriately called a migraine “aura.” I was soon rendered blind in whatever eye the “aura” decided to show up in, and then the pain would begin. For me, migraine pain lasted about 6 hours and was utterly debilitating. The day after was better, but I usually felt like I had been hit by a mac truck — which is a pretty accurate description for any migraine sufferer.

Migraines only lasted the initial few years of puberty and then went away. However, they quickly came back after I went on birth control pills in college. Thankfully, I was already dating my husband by then, and we quickly learned a routine for when a migraine was coming on:

Me: “_____, I’m getting a migraine. I need to get home (or lie down) ASAP.”  

Boyfriend (now husband): “Sh_t. Okay. I will get you there as fast as possible.”

Me: “Hurry, because I’m starting to get sick to my stomach and I can’t see.”

Boyfriend (now husband): “Okay. We will be there soon. I will rub your head until you fall asleep.”  

That’s pretty much how we spent many nights and days in college. It’s also how we rang in the millennium for New Year’s 2000 – with my boyfriend (now husband) rubbing my head, during a migraine, while on vacation in Florida. It was awesome!

Once I graduated from college and started working for a pharmaceutical company that sold birth control pills, I learned that I was “estrogen intolerant.” Estrogen intolerant is a term used to refer to women who do not handle fluctuations in estrogen well. Changes in hormone levels, such as estrogen, can be a trigger for some women and was the main cause of my migraines. Through my research, I learned that anyone who suffers migraines, even “menstrual migraines,” should avoid taking birth control pills. In fact, taking birth control pills if you get migraines of any kind, especially ocular migraines (AKA – migraines with “aura”), is a contraindication stated package inserts.

“Combined oral contraceptives are a safe and highly effective method of birth control, but they can also raise problems of clinical tolerability and/or safety in migraine patients. It is now commonly accepted that, in migraine with aura, the use of combined oral contraceptives is always contraindicated, and that their intake must also be suspended by patients suffering from migraine without aura if aura symptoms appear. The newest combined oral contraceptive formulations are generally well tolerated in migraine without aura, and the majority of migraine without aura sufferers do not show any problems with their use; nevertheless, the last International Classification of Headache Disorders identifies at least two entities evidently related to the use of combined oral contraceptives: exogenous hormone-induced headache and estrogen-withdrawal headache. As regards the safety, even if both migraine and combined oral contraceptive intake are associated with an increased risk of ischemic stroke, migraine without aura per se is not a contraindication for combined oral contraceptive use. Other risk factors (tobacco use, hypertension, hyperlipidemia, obesity and diabetes) must be carefully considered when prescribing combined oral contraceptives in migraine without aura patients, in particular in women aged over 35 years. Furthermore, the exclusion of a hereditary thrombophilia and of alterations of coagulative parameters should precede any decision of combined oral contraceptive prescription in migraine patients.” (source – https://www.ncbi.nlm.nih.gov/pubmed/19271947)

As soon as I stopped taking the pill, the migraines stopped — thank god. But, they reappeared during my first pregnancy. And then during my second. And then again during my third…. Fun times! 

After my first pregnancy, I was diagnosed with Ehlers-Danlos syndrome (EDS). I soon realized that I wasn’t the only person diagnosed with EDS who also struggled with migraines – there are quite a few of us. And considering that the World Health Organization (WHO) states that “migraines “almost certainly” have a genetic basis, and some studies say 70 percent of people who suffer from the disorder have a family history of migraine headaches,” a connection between EDS and migraines makes sense. Both conditions are associated with the vascular system, the nervous system, and both have a genetic basis. Recent research has also proven an association between EDS and migraines as well.

As research on EDS has increased, as has my personal knowledge, those of us who live and work in the EDS community have also learned that Mast Cell Activation Syndrome (MCAS) is a common comorbid condition to EDS. Researchers such as Dr. Theo Theoharides have proven the link between migraines and MCAS. What’s interesting is that most mainstream health information websites have yet to list either an underlying connective tissue disorder, such as EDS, or mast cell dysfunction as a route cause for migraine pathology. Health sites often discuss the “genetic” predisposition, and even mention the possible link to “inflammation,” especially in the case of ocular migraines, but most state that the cause of this inflammatory response is unknown. Read below.

“It appears migraines are triggered by activation of a mechanism deep in the brain, which releases inflammatory substances around the nerves and blood vessels of the head and brain. But why this happens and what brings about the spontaneous resolution of an ocular migraine remain unknown.” (source – http://www.allaboutvision.com/conditions/ocular-migraine.htm)

Whatever the route cause or the trigger, no one would argue how life-altering migraines can be. Furthermore, people who suffer from migraines often have a general sensitivity to light, even in the absence of a current headache. And many complain that their migraines are triggered by certain types of light, in addition to having an increased sensitivity overall. For that reason, migraine-specific eyewear was developed, such as the migraine glasses by Axon Optics.

Many people who live with chronic migraines wear sunglasses at all times — either protect their eyes during an active migraine or to avoid certain light(s) triggers. I’m one of those people as well. Hence, the reason why I jumped at the chance to trial migraine glasses. I was more than curious to see how half-shaded glasses would be dark enough or work well enough to either decrease the overall sensitivity to light that I deal with daily, and how (or if) they would help prevent a migraine attack. Below is information on the technology behind migraine glasses:

“Recent research indicates that there are separate pathways between the eye and the brain, one for vision and another that causes pain – presumably to stop you from staring at the light that damages your eyes.
However, for a portion of the population, this pathway is hypersensitive and exacerbates pain even under otherwise normal lighting conditions. This results in migraine headaches, light sensitivity (photophobia), or other light sensitive conditions. Migraine glasses were developed to help in this situation.
Migraine glasses minimize the amount of painful light entering the eye. Clinical studies have shown that by blocking this light, many migraineurs have reduced the frequency and severity of their migraine attacks. Glasses are available both with an eyeglass prescription and without an eyeglass prescription.
Dr. Bradley Katz, a founder of Axon Optics, is a neuro-ophthalmologist at the University of Utah and studies the pain pathway associated with migraine and photophobia. Because of his work, Axon Optics has developed the SpectraShield Logo FL-41 migraine glasses lens. Both indoor migraine glasses and outdoor migraine sunglasses are an option.” (source – https://www.axonoptics.com/migraine-glasses/)

• Stylish – I opted for the glasses that wrapped around the sides of my face because my eyes tend to be very sensitive to any light.
• Comfortable – glasses are light-weight and very comfortable to keep on for extended periods of time. I even did handstand contests with my kids wearing them and they didn’t fall off.
• Overall sensitivity to light decreased. Even though Axon Optics’ migraine glasses are not as dark as my usual sunglasses, my eyes adjusted well and were less sensitive overall.
• No headaches while wearing glasses! 

Where to find migraine glasses and more information: 
Axon Optics website – https://www.axonoptics.com
Axon Optics on Amazon – http://amzn.to/2eUfj98
Axon Optics on Facebook – https://www.facebook.com/AxonOptics/
Axon Optics on Twitter – https://twitter.com/AxonOptics
 
Helpful Information on Migraines: 

“Symptoms of Migraines

• Moderate to severe pain (often described as pounding, throbbing pain) that can affect the whole head, or can shift from one side of the head to the other
• Sensitivity to light, noise or odors
• Blurred vision
• Nausea or vomiting, stomach upset, abdominal pain
• Loss of appetite
• Sensations of being very warm or cold
• Paleness
• Fatigue
• Dizziness
• Fever (rare)
• Bright flashing dots or lights, blind spots, wavy or jagged lines (aura)
• Read more by going to – http://www.webmd.com/migraines-headaches/guide/migraines-headaches-symptoms“

Ocular Migraines (Migraines with “Aura”): 

“Aura may occur before or during migraines. Most people experience migraines without aura. Auras are symptoms of the nervous system. They are usually visual disturbances, such as flashes of light or wavy, zigzag vision. Sometimes auras can also be touching sensations (sensory), movement (motor) or speech (verbal) disturbances. Your muscles may get weak, or you may feel as though someone is touching you.Each of these symptoms usually begins gradually, builds up over several minutes and lasts for 20 to 60 minutes.
Examples of migraine aura include:

• Visual phenomena, such as seeing various shapes, bright spots or flashes of light
• Vision loss
• Pins and needles sensations in an arm or leg
• Weakness or numbness in the face or one side of the body
• Difficulty speaking
• Hearing noises or music
• Uncontrollable jerking or other movements
• Sometimes, a migraine with aura may be associated with limb weakness (hemiplegic migraine).
  
• Read more by going to http://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/dxc-20202434“

 
Additional Resources and Links on Migraines and EDS, MCAS and Birth Control Pills: 
Axon Optics Migraine Glasses – https://www.axonoptics.com/migraine-glasses/
‘A study of migraine characteristics in joint hypermobility syndrome a.k.a. Ehlers-Danlos syndrome, hypermobility type.’ – https://www.ncbi.nlm.nih.gov/pubmed/25791889
‘Connective tissue, Ehlers-Danlos syndrome(s), and head and cervical pain.’ – https://www.ncbi.nlm.nih.gov/pubmed/25655119
‘The role of mast cells in migraine pathophysiology.’ – https://www.ncbi.nlm.nih.gov/pubmed/15960987 (Full PDF – http://www.mastcellmaster.com/documents/Migraines/Brain-Res-Rev-mast-cells,-migraines.pdf)

Ocular Migraines – http://www.allaboutvision.com/conditions/ocular-migraine.htm
Migraine Headache – Symptoms and Causes by Mayo Clinic – http://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/dxc-20202434
‘Why light worsens migraine headaches’ – http://www.webmd.com/migraines-headaches/news/20100112/why-light-worsens-migraine-headaches