The Migraine World Summit proved to be an amazing adventure for me. Even though I got a case of the flu and started dealing with my severe abdominal pain, it really helped to have new videos each day to come home to watch and learn.

Absorbing the information was truly beneficial to my migraines, and in a way the pain was actually under control for the majority of the summit. Perhaps that points to me being ready to take on a little more responsibility, or perhaps the weather stayed consistent enough for a week.

Regardless, the Summit is a place that gave me a lot of hope and over the course of Day 3 and Day 4 I got a better understanding of the types of migraines that exist along with how triggers and symptoms play a huge role in our day to day lives.

Day 3: Types

Alternative Treatments For Cluster Headache

Cluster headache is an extremely painful type of condition that deserves different attention than a typical migraine. This type of headache is often extremely severe, with an attack being primarily one sided and lasting typically no longer than one to two hours. Often, people with this diagnosis are awoken in the middle of the night (1 AM – 2 AM) by the sudden sharp pains.

Often times this type of headache is misdiagnoses as a migraine and patients can suffer from both conditions.

The most effective treatments tend to be variations of typical migraine medicines that are administered more directly – nasal spray or injection. Another highly suggested treatment was the use of an oxygen mask to increase the amount of oxygen flow. However, for this specific type of headache, research is extremely underfunded.

The most interesting thing that came out of this talk, as a non-cluster headache patient, was the development of research based in cluster headaches that is focusing on microdosing. Based on one patients story from over 20 years ago, his recreational LSD use proved to stop his cluster headaches and after a few months they’d return. He’d use more, and after an even longer period they’d resurface, until he was almost close to being headache free.

This is exciting for me, as I’ve heard many people mention psychedelics as a viable option, but if medical professionals are starting to explore it, the promise of it existing as a regulated treatment in the future is huge. Psychedelics don’t have the same addictive properties that our current medications do.

If you suffer from cluster headaches, Dr. Brian E McGeeney will be hosting the next ClusterBuster meeting in September of 2019 – this would be a great opportunity to connect with other people with the same condition. 

Diagnosing Pressure Headaches Vs CSF Leaks

CSF – Cerebral Spinal Fluid: clear fluid that cushions the brain and spinal cord

The first discussed type was a high pressure headache which was characterized by constant pain in the head that doesn’t change by laying down or sitting down, and is also associated with vision changes upon standing and the occurrence of pulsing tinnitus (ringing in the ears). The theory behind this type, is that the brain fluid is being absorbed slower than it is being produced so an excess causes pressure. This really caught my attention because although my vision doesn’t go out, I have very noticeable double-vision upon standing and constant ringing in my ears. However, to make a formal diagnosis an eye exam showing that the optical nerve is swelled is key – so although my symptoms line up, an excess spinal fluid theory isn’t practical.

Although treatments exist to reduce the pressure, the underlying headache may not be treated. This is a condition often present in overweight individuals, so a combination of exercise, diet and a preventative treatment can be used to minimize the headaches.

A low pressure headache has to do with spinal fluid within the spine, and typically comes from a tear in the “dura” which is the lining that encases the fluid around the spinal cord. It can also be caused by an abnormal connection between the nerves and the spinal fluid. In the case of diagnosing this type of headache, there aren’t many guidelines. People describe severe head pain, intensifying pain upon standing and the pain slowly getting worse as the day goes on… again, this sounds just like me… Additionally, back and shoulder pain is common…

Procedures like epidural blood patches and searching for the spot of the leak can help in treating this kind of headache.

This talk really sparked my interest, as so much of the diagnostics aligned with my migraines, so I will be digging much deeper into this type of headache and also requesting some new tests from my neurologist.

Understanding Balance, Vertigo, and Dizziness

Dizziness is one of the most commonly reported symptoms associated with migraine. Personally, I rarely experience dizziness, but I often experience vertigo – especially at night, so better understanding how these connect to migraines was very interesting.

This talk primarily focused on Vestibular Migraines, where most migraine related symptoms are related to the vestibular system – so vertigo, dizziness, feeling like you’re spinning, and lightheadedness. These issue relate to the inner ear, however the connection between the brain and the inner ear in terms of this type of migraine is not clear.

One interesting piece from this talk was the idea that people with vestibular migraine can remember other migraine symptoms when they were younger – like being carsick. Another interesting factor was that attacks seem more severe when patients are more fatigued or there are weather related changes.

One reason there’s confusion with vestibular migraines and ear problems is due to the pain manifesting in the ear area. And often times, the lack of balance – that we link to our ears – is the most prominent symptom and the most debilitating.

The most valuable part of this talk in my eyes focused on not overdoing movement. As someone with many vestibular symptoms, I’m extremely familiar with how difficult even the easiest of movements can be and how they can exacerbate a migraine that is already present. This helped confirm in my eyes, that I may have vestibular type migraine and this could explain why exercise is not something that deserves a primary focus in my overall wellness plan. It’s also important to note that therapies for chronic vs vestibular migraine don’t differ much, it’s truly just a matter of terminology.

When Migraine Disables But Doesn’t Hurt

This talk touched on what a lot of migraine patients refer to as a “silent migraine” – for me, I’ve often called this a background migraine. Essentially, you run the course of a migraine and you are very aware of the symptoms, but head pain never presents itself.

Primarily, this talk touched on migraine’s aura – which is commonly a visual disturbance prior to a migraine attack. The talk alluded to auras presenting themselves in other sensory ways but didn’t go into the detail I had hoped.

I found this talk to be a little useless, but it sparked the idea of what all does “aura” entail that isn’t visual and gives me something to dig a bit deeper into.

Day 4: Triggers and Symptoms

Drug Interactions With Common Migraine Meds

This talk to me was absolutely incredible, as it really dove in to migraine medicines I was very familiar with and shared what common side effects existed along with what general things patients need to look out for when trying a new medication.

Side effects of medications are essentially the biggest barrier migraine patients face. In some cases medications aren’t tolerated, we aren’t on a correct dose, or they interact with our body’s chemical make-up negatively.

One thing that was notable was the fact that drugs used for various conditions often have more adverse effects in migraine patients due to the “hyper-excitability” of our brains and nerves.

The first medicine touched on was Topiramite (Topamax)… you know that lovely medicine that I’m allergic to… this drug requires extreme hydration, can cause numbness and tingling in your fingers, and have cognitive impacts, most of which can be alleviated by taking the medicine at bedtime and making some diet modifications. It’s important to note that this drug also reduces the effectiveness of birth control medications.

They touched on Propranolol next, and noted that changes in blood pressure, increased insomnia and exercise fatigue were common. All of those were something I experienced, but it was my sudden shift in mood that lead me to discontinue the drug.

Dr. Shivang made a point to explain that mood changes have nothing to do with doses and are a primary side effect to watch out for on any medications. Typically, a change in mood indicates that the medicine should be discontinued.

A huge thing that was stressed during this talk was where should you go to discuss the side effects you are experiencing. The best option, is your pharmacist. If you can limit where you fill you prescriptions to a single pharmacy, the pharmacist can get an extremely good picture of your health and will recognize if the side effects are due to an interaction with another drug or confirm if it’s a dangerous side effect. The next most important thing, was that side effects need to be reported to your physician, even if you are seeking out a new doctor. This helps provide a more realistic picture of how effective a medication is.

Neck Pain and Migraine: Trigger or Symptom

Here we have it, the question of a lifetime. Is my neck pain causing my migraines? Are my migraines causing my neck pain? Does the long lasting neck tension make my migraines occur more often? And does treating my neck pain have an impact on my migraines?

Dr. Andrew Charles really shed some light on a topic that still has more questions than answers. He believes that the neck pain we experience is truly a symptom, and one that can occur in all three stages of an attack.

Dr. Charles used the example of light sensitivity to really bring in to question the concept of triggers. We are sensitive to light and believe that flickering lights can bring on an attack, but what really is occurring is that either a migraine attack has already started therefore we are more sensitive or we are generally more sensitized to various things such as light and sound because the overstimulated nerves remain sensitized even when an attack has ended.

Therefore, the “triggers” that we believe are causing our migraines, are often existing because the migraine is already present. Perhaps in the case of chocolate, our migraines make us crave it, we eat it, 2 hours later we have a migraine, and assume it’s the chocolates fault.

Another key thing to note was the connection between our upper neck, the C1, C2, and C3 vertebrae and where researchers believe migraine pain comes from – which is the location of where neck nerves and brain nerves converge. This area is the pathway that pain is traveling through, therefore pain is present.

The biggest point made by Dr. Charles was that using methods like chiropractic adjustments, massage therapy, or neck physical therapy truly aren’t going to solve a problem. A small neck issue isn’t causing migraines. An adjustment won’t positively impact migraines. Treating the migraines needs to be the primary focus, and once the migraines are under control the neck pain and tension will also be under control. The constant manipulation of the neck area typically proves to be more counterproductive as you’re adding stress to an already troubled area.

Hormonal Contraception and HRT for Migraine

I’d be lying if I said that I truly was invested in this particular talk. I personally do not have menstrual migraine and my birth control essentially shuts down that function in my body. But, I do want to lay a few key things that may be of interest for the vast majority of women and touch on hormonal treatments as it relates to the transition period for transgender individuals.

One unique factor I noticed was that treatments can be focused primarily around one’s menstrual cycle – such as starting a preventative prior to the cycle, rather than constantly being on it.

The next idea was to be on a sort of birth control, to better manage when the menstrual cycle will occur and to keep it consistent to allow better, more predictable treatments to be effective.

Measuring hormones is also fairly ineffective. You can measure it one day and the next day measure it again and have completely different levels – which points to why research difficulties exist along with a consistent understanding of which hormone could be exacerbating symptoms.

The final area I want to touch on is the risk of hormonal treatments for transgender patients. In receiving hormones, it has been found that men transitioning to women develop or have an increase in migraines mostly in part of the altered hormones. This is something I found interesting, but also felt the need to touch on as it isn’t something that patients going through the therapies are counseled on and they don’t necessarily get correct treatments.

Medication for Prevention: Know Your Options

This talk really broke down the difference between preventative and acute treatments and when we need to be considering them.

Typically a preventative – a medication used daily to prevent migraines/reduce intensity, frequency, and duration – is the first option you’ll need to explore once a migraine interferes with your life more than once a month. When your acute treatments – medicines used at onset of migraine to abort the attack – aren’t working effectively or you need them too often, you may want to also be on a daily preventative.

I was shocked to hear how many people with migraine aren’t on a daily medication for it. And I was even more shocked that people were given acute/abortive treatments prior to a preventative.

Essentially this talk laid out the various types of preventative treatments (anti-seizure medicines, blood pressure meds) and acute treatments such as triptans, along with discussing treatments like Botox and cognitive behavioral therapy as routes migraine patients can take. It also touched on various “natural” options like acupuncture and various vitamins/supplements that have some level of impact on some migraine patients.

The most valuable portion of this talk came at the end in regards to patient education. Often, in initial diagnosis many things are left out and never discussed as the condition progresses. That’s why having good relationships with your doctors and investing your personal time in learning about migraine is necessary as someone with migraines.

Day 3 & 4 Reflections

After these two days, I really was comfortable with how the Summit was progressing. I certainly learned more about different types of migraines and headache types – some that lead me to wonder if I have the correct diagnosis and other that allow me to be more informed when it comes to migraines as a whole.

I already knew research in the area of migraine was poor, but its disheartening to see how much worse it is for the more rare conditions and even in the difference between migraine with vs without aura.

The most important thing I learned came from the Neck Pain talk, as it really made me recognize that yes what we consider “triggers” may play some role in our migraines, but at the end of the day that migraine will be there regardless of neck pain or a piece of chocolate. It really helps me focus on the idea of getting the migraine under control and not placing blame on whatever action I believe “sparked” the flare up.

Day 1 & 2 reflections can be found in Part 1.

Day 5 & 6 reflections will focus on migraine treatments and will be Part 3 of this series.

Day 7 & 8 reflections will focus on difficult cases and living with migraine and will be the 4th and final part of this series.

The Summit is still available for purchase if you’re interesting in owning copies of the videos/transcripts. My reflections only touch on a small portion of what was covered in each talk. Click here to purchase – there’s a 30 day money back guarantee if you’re not satisfied with the content.

A.