5 Basic things I tell people about migraines

People ask me about migraines all the time and the information they have is very limited. So here is my post about my migraines. 5 things about my migraines.

1) It is not just a headache: still get a lot of people thinking it is just a bad headache when in fact it is a neurological disease. When you have an attack, the headache might not even be a part of it as is the case with a Silent migraine.


2) They have stages. The migraine attack comes in four stages: the prodrome, aura, headache and postdrome. These stages are flexible since some stages last longer than other. They are variable, as in sometimes you have no headache. With the aura, only migraine with aura gets that stage and not with every migraine.

3)Auras are not all visual: Auras can be tactile like feeling numbness or tingling anywhere on the body. You can have aphasia, causing problems with communication; written or verbal. You can have vertigo. And yes, also the light show.

4) Migraines can be daily. Migraines over 15 a month are chronic and yes they can even be daily.

5) High Episodic migraines have the same impact on lives as Chronic migraines do.

And here is an image for a bonus:

I am migraineI am shrouded in shadowsAnd hidden in caves.You yearn for the light.But you are my slave.Want to fight_I dare you.Go into the light

I went out to Olive Garden today with my common law spouse, mother and step-father for my early birthday dinner. I was on the cusp of a migraine when we left and, of course, a roaring on when we came back. I often blame the light. Or just leaving the house. Just seems to strive as soon as I want to Do something.

But then again I have daily migraines and I will get a migraine. When is the question. Early or late.

Often people have anxiety about this. When it will strike. When they are out and about. If they are going to be doing something important. This isn’t a problem for me. I don’t live in anxiety about when I migraine will occur. I figure they will happen when they will happen at the intensity they will happen and I will then deal with it in the capacity I can that day. As in if it is a day I can take a triptan, or a day I cannot.

This is the way to go. Why worry about the impending doom? It will happen or it won’t. In my case 99% chance it will happen. Just a matter of what sort of break I get before hand. Or I suppose to be honest how long the prodrome lasts for.

However, we all have times where anxiety of a migraine happens. Twice in my life this has happened to me. The first was the day I was to defend my Masters thesis. I worried I would be dumified by a migraine and be unable to properly defend my thesis. That definitely created some anxiety. I was chronic at the time but only about 15-20 a month, so there was a chance I would not. But as we know, stressful situations when we do not necessarily pay attention to food intake or hydration and Bam migraine. Or stress itself is sometimes considered the trigger. Either way, I did in fact get a migraine. However instead of the dumification I got the hyper excitability instead. Where you are all shaky, talkative and hyper. I call it my manic migraines. I assume it manifested this way due to my anxiety. I have a fear of public speaking you see. So during the prodrome and the pain I was able to actually function well enough to defend my thesis quite well. Given my terror of public speaking maybe even better than usual. But the pain after was quite intense.

The second time was pre-test anxiety for a RISR mutual fund test for work. I actually never have test anxiety, but since it was job related and at that time my migraines were quite a bit more severe… due to working, I had anxiety that a migraine would impair my capacity to succeed on the test. Given the math involved. And migraine. Again. I should not have worried.  I am just one of those people that tests exceptionally well. But migraines do impair me math wise. I know this from work. Transposing numbers. Brain fog. Just forgetting simple equations. I once did an IQ test with a migraine and it dropped my IQ from 140 to 135 (It was just an experiment and the migraine was by no means a 9)… and I assume it was the math to be honest. I remember sort of zoning out on those questions. So you can see where test anxiety would be a factor. In university I never had a problem, except when they put me on certain medications and that rather ticked me off when it affected the quality of my work.

So there will be times when anxiety of that next migraine will be a factor. Especially when we know we Need to function and we will be stressed. The reason anxiety is not normally a factor for me is because I do have to function ever single day. I have worked full time for over a decade with chronic daily migraines. So I know I have the capacity to function when I have to, to some extent. Obviously it impairs us. The more pain the more impairment. Just a fact. I generally become slower and double or triple check my work. Try to be as meticulous as possible. And still make odd little mistakes. Have issues with general communication. Forget simple policy issues. For that reason alone I am glad I downgraded my job to something simpler and less stressful to be honest. But I have the capacity for limited functionality at a 7 level of pain, and even barely functional at an 8. So there is no anxiety of getting a migraine. I wish I would not. I wish I would have a break. But I deal with it as it comes. I only have issues with 9s because of the incapacity to function and then I am sort of stranded where I am and suffering a massive amount in the process.

What we should really be doing is just living our lives and always being prepared, no matter where we are, for that migraine. Having that migraine emergency pack on us at all times and medications. Never leave home without the essentials. So maybe you will have to leave early from a social gathering but don’t let a potential migraine stop you from going to it. I deal with chronic migraines like chronic pain, like FM. I don’t let it stop me from doing the things I want to do… within moderation and my limits. And I am always prepared. I know there will be pain, but to some extent, I will deal with that pain. Because there will Always be pain. And I cannot just avoid life.

The persistent migraine aura

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Persistent Aura Without Infarction (PAWOI) is an elusive condition where the migraine aura with migraines persists for hours, days, weeks or even years in a small percentage of migraineurs.

 

“According to the International Headache Society, PAWOI is distinguished from normal migraines by having aura lasting longer than seven days [3]. Also, these symptoms must not be related to a stroke (an infarction), tumor, or any other structural alteration in brain tissue that can be seen from an MRI or CT scan. Furthermore, they should not be related to issues affecting the eyes themselves. Electroencephalogram (EEG) results, which directly measure cortical neural activity, should also be normal, which would suggest that the symptoms are not related to epilepsy [4]. Visual symptoms are often quite varied, and can include flashing lights, sensitivity to light, scintillating scotomas (depicted in the first image of this article), and geometric shapes [3, 5, 6]. Rarely, increased frequency and duration of afterimages, also known as palinopsia, and changes in the perception of the size of objects can occur [5]. Though these symptoms are distracting, they do not interfere significantly with the individual’s ability to see their environment. Some people with PAWOI experience non-visual symptoms as well, which include numbness, tingling, dizziness, and tinnitus (ringing in the ears). These non-visual symptoms are also seen with regular migraine aura. PAWOI appears to affect men and women equally, and people of all different ages can experience these symptoms, from 11 year olds to 70 year olds [6, 7].” Triple Helix

My persistent migraine auras are quite varied, which is not always the case and was not the case in the beginning. I do get regular tinnitus, not sure if that is part of the deal. I get halos, starbursts, an array of pinprick colored lights warping in a field, pulsating lights, just pulsating air, trailers, more afterimages that stick around for longer durations, warping of the line of objects, perception of motion that is not there, photophobia and scintillating scotomas. A lot more varied visually that my before a migraine aura tends to be.

It is an interesting phenomena but not one that is well understood. At least not outside of the theory of what causes migraine auras as it is… so why they persist is not well understood at all. “the primary explanation for PAWOI is cortical spreading depression [3, 4, 7]. Cortical spreading depression involves a wave depolarization spreading across a region of the cortex, principally in the visual cortex of the occipital lobe, followed by an inhibitory wave. These waves are implicated in regular migraines with aura but it is believed that in people with PAWOI, these waves are sustained and repeated [7]. The brains of people with PAWOI may also be more susceptible to cortical spreading depression [4]. Furthermore, alterations in energy metabolism has been implicated, based on Positron Emission Tomography (PET) scans finding that blood flow changes often occur in the occipital lobe during migraine attacks that involve aura [4].  Generally, this involves a decrease in blood flow in the affected areas, like the occipital lobe of the brain [3]. Changes in magnesium levels, increased sensitivity of NMDA receptors to the excitatory neurotransmitter glutamate, and decreased activity of the inhibitory neurotransmitter GABA have also been suggested to be involved with the pathogenesis of PAWOI [4].” Triple Helix

Treatments tend to be along the lines of medications such as acetazolamide, valproate, lamotrigine, topiramate, and furosemide.

Visual snow has often been considered a form of persistent migraine aura. A “particular subtype of PAWOI, called visual snow, is a generally permanent form of PAWOI [9]. Those who suffer from this particular type of PAWOI have very specific and similar symptoms, which is why they are grouped together. Their main symptom, unsurprisingly, is visual snow, which involves flickering lights in their visual field that look like static on a television screen [8, 9]. Patients can also experience afterimages and trails, in which objects are “seen” even after the person is no longer focused on them, halos around lights especially at night, photosensitivity, and tinnitus (a ringing or buzzing in the ears) [8, 9]. What distinguishes this subtype from other cases of PAWOI is that people who have not had migraines can develop this condition [8]. Even with these people, though, it is likely related to migraine, due to the presence of normal MRIs, CT scans, and ophthalmological exams, like in other PAWOI cases [9]” Triple Helix It is particularly difficult to treat with a low rate of success. Recent research has suggested it is in fact a separate condition called Visual Snow Syndrome, however, if so, 50% of sufferers have migraines which might have something to do with the are of the brain sited to be over-active or there might be another correlation. Either way, it has distinct features in that it remains constant. See ‘Visual snow’ – a disorder distinct from persistent migraine aura.

Some Cases history examples

Case of Luda et al. (1991): This 65-year-old woman developed “scintillating scotomas” in her right visual field without headache on May 3, 1990 and they were still present and unremitting when the authors reported her problem over 12 months later. The hallucination was described as “scintillating geometrical figures (in the shape of either rings or chains)…”

Patient 3 of Liu et al. (1995): On November 10, 1992, this 29-year-old woman “experienced sudden disorientation followed by stars filling the visual field of both eyes, followed by a diffuse, nonpulsating headache. When the headache ceased, she was left with “constant flashing lights and circles which were worse at night…” These visual symptoms resolved spontaneously in April 1993. Months later, she experienced “zig-zag” lines for 10 minutes followed by a pulsating headache. She also had brief attacks of unilateral paresthesias sometimes followed by headaches both before and after the persistent aura.

Patient 1 of Chen et al. (2001): This 45-year-old woman reported seeing an occasionally flickering coin-sized white spot in her left field of view for 3 months. It began “after” a migraine headache without aura. It prevented reading.

Patient 2 of Chen et al. (2001):This 24-year-old woman complained of seeing numerous stars persistently flickering in her right visual field for 3 years. At times they formed a single light. This phenomenon developed during a migraine attack. She had suffered migraines from childhood. A visual aura of of bright yellow flickering stars lasting 30-60 seconds had occurred during most of her migraine headaches.

Patient of Spierings (2002): This 41-year-old man with migraine with typical visual aura from childhood developed his typical aura while upset in October 1996. It was unusually vivid and was accompanied this time by tingling in his left upper limb for 30 minutes. This was followed by severe headache with photophobia, generalized weakness, and confusion. The visual disturbance never disappeared, but has persisted to the time of Spiering’s report. The patient sees things as though looking through a veil, and “bright-white, flickering, zigzag lines in the periphery of both visual fields” (his typical aura) come and go.

Continuous, strongly fluctuating variety
Patient 1 of Rothrock (1997): Two months before she was seen by the author, this 61-year-old woman experienced a particularly severe prolonged migraine with “jagged zigzags like crushed broken glass” to the left of a scotoma in her left visual field. This hallucination persisted after the headache ceased. It had been fluctuating in size, without disappearing entirely. In addition, she had developed similarly fluctuating but persistent numbness and tingling in the left face and lips

Some little lifestyle changes I am doing

Get your zen on

Three parts of my migraine protocol are:

1) Getting my zen on- Meditating every day or more if I want to. I do mindfulness meditation. It works the best for me. We all know there are benefits to meditation other than stress reduction. It helps preserve an aging brain. It helps with depression and anxiety. That depression factor is a perk for me. It improves concentration and attention. And it leads to some interesting changes in the brain:

In 2011, Sara Lazar and her team at Harvard found that mindfulness meditation can actually change the structure of the brain: Eight weeks of Mindfulness-Based Stress Reduction (MBSR) was found to increase cortical thickness in the hippocampus, which governs learning and memory, and in certain areas of the brain that play roles in emotion regulation and self-referential processing. There were also decreases in brain cell volume in the amygdala, which is responsible for fear, anxiety, and stress – and these changes matched the participants’ self-reports of their stress levels, indicating that meditation not only changes the brain, but it changes our subjective perception and feelings as well. In fact, a follow-up study by Lazar’s team found that after meditation training, changes in brain areas linked to mood and arousal were also linked to improvements in how participants said they felt — i.e., their psychological well-being. So for anyone who says that activated blobs in the brain don’t necessarily mean anything, our subjective experience – improved mood and well-being – does indeed seem to be shifted through meditation as well. Forbes

2) Exercise- which is supposed to help with pain. It is also supposed to help with mood regulation and depression, but I recently read a study that suggested otherwise. Nevertheless, I have more than one chronic pain condition so exercise it is.

3) Gratitude Journal- List at least three things a day I am grateful for. It also lowers stress and helps with depression. It is focusing on positive things each day.

Now I have an app for that.

I use Breathe for my meditation and Happier for my gratitude journal. There are lots out there if this is the way you want to go, but those are the two that I have chosen to help me with my progress. I don’t use anything for exercise even though there are plenty because it is a very slow painful process to me, so I track it in my daily progress at the end of the day.

 

Missing work, yet again

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With chronic migraines working with migraines is nothing new to me. Nothing pleasant about it but nothing new.

The pain clinic recently stated I could not work full-time and had to reduce to part-time. I agreed. It has been functionally impossible for me to work full-time with daily chronic migraines and comorbid pain.

Turns out migraines don’t actually care if you are working full-time or part-time. They get brutal on the pain intensity when they feel like it. And migraines are like a hat of nasty tricks. Every migraine pulls from the hat to see what nasty tricks comes with it. Today is nausea, vomiting and diarrhea. This is not working sort of symptoms. Not to mention I ‘lost’ the medication I took pretty much as soon as I took it. So no migraine aborted for me. This particular stretch is a a very brutal menstrual migraine stretch. It has in fact been a very difficult week for me overall and I anticipate this trigger to be over quite soon. But it is going with quite the bang.

So part-time I am still missing work on high intensity days and days with extremely bad symptoms. And I still feel guilty about it. And it still makes me angry and upset. And no one wins here. Not me, not my employer. Not anyone.

Usually I only miss work when the migraine is intense (in the 9 range) on waking or the symptoms are pervasive on waking. Otherwise I got to work and tough it out no matter how hellish it gets and it can get pretty hellish. But once I am There, I am there. I just try and figure out, as my image above suggests, how to manage it. Power through? Take a triptan which never fails to make me dumb and tired. And has about a 60% chance of working at all; either aborting or reducing for some time. Or taking a painkiller, which mildly reduces pain to a lower level for a small, limited duration. Obviously other symptoms can cause some serious work disruptions and they Do. Vertigo, vomiting bouts and obscuring auras being the most intrusive. But you still have to deal with all the rest of the show as well. Brain-dead, having issues with using your words, fatigue, intense nausea, hearing issues, photophobia, phonophobia and sensitivity to scents.

Roadblocks

I have been listening to the Migraine World Summit and so far I have not picked up anything I didn’t already know but it is interesting to listen to neurologists perspectives.

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One thing I think so far is that I suck. Ehm. My brain sucks. That is to say I’m in a bad mental place to improve that fraction we have some control over. And this angers me. But I realize it is predominately for two reasons.

  1. I am depressed. My brain is telling me adamantly that nothing I do will make any difference. That is hopeless. That this pain will last forever. That nothing will ever chance. In my brains defense neuros giving up on me and saying nothing will help me doesn’t help. Thanks for that. Point is brain is set on sucky mode. And then there is the crap motivation of depression. So I know the irrationality of my thinking and I know what I should be doing about it specifically. However I lack any motivation to do anything. And then my brain rolls back to, well, it isn’t going to have any effect anyway so why bother. Sort of want to smack myself at that point.
  2. Long history of no change. I have had chronic daily migraines for 13 years. I calculated that out when blogging for this topic and Holy Hell. And in that 13 years absolutely nothing I have tried or done has had any effect at all on the daily migraines. I know what caused them to go from chronic to chronic and daily though. As soon as I entered the work force they bumped up from 15-20 to every single day. And have not changed since. Depression set in about five years ago due to pain levels and stress at work. All that unmanaged pain. No preventative has really worked for me and working with daily migraines is no bloody fun. Then the stress of missing work and leaves of absence. None of that helps any. Point is nothing gave any indication of any hope at all. And if the past predicts the future, I think I am screwed. And that is what my brain tells me.

 

This is not to say I am not trying. Just means I have some mental roadblocks to deal with. And I have been told in my case it is simply about managing the pain. Sort of depressing that fact. I like to believe that fraction we have some control over… the lifestyle aspect may have some impact. If I do it consistently and all together. Even if it never has before. I would just like some migraine free days in there somewhere. Just a little break in the flow. Unlike some people I do not have constant migraines. I have distinct migraines not a non-stop migraine. So I may wake up migraine free, which is generally the case but as you know some last days. And then get one a few hours after waking. So there are hours in a day without a migraine. I do have comorbid pain, so not pain free, but migraine free. I just want migraine free days a month. Down to 20 or 15 would be ideal. Seems like a fantasy at this point but I believe entirely conceivable.

Are migraines progressive?

Listening to the Migraine World Summit talk called Progressive Migraine Risk factors with Richard Lipton. To register for the online talks click HERE.

Is migraine a progressive disease? Short answer in a subgroup it is.

With migraines there is a line in the sand, but it isn’t firm as we can wander back and forth. This line is Episodic migraines less than 15 a month. Chronic migraines greater than 15 a month.

Treatment for migraines involves lifestyle, acute treatments (triptans) and preventative treatments. With chronic migraines the goal is to improve overall functioning. Preventative treatments are considered at their Most effective at a 50% migraine frequency reduction.

Lipton has done a large study on who and why people go chronic as well as treatment of migraines. 25% percent of people with episodic migraines get minimal effective treatment for disabling migraines. This includes going to the doctor first, second getting the diagnosis correct and getting the proper treatment. It is substantially worse for chronic migraines where the criteria is a proper diagnosis, any guideline treatment and any acute treatment. It found only 5% are getting minimally effective treatment. Lipton stated there is a lot of miscommunication about frequency when it comes to chronic migraineurs… attacks vs days. So I may have 9 attacks over the span of 15 days. Or have headaches I do not report because they are not ‘bad’ enough.

Liption stated currently there are risk factors for progression from episodic to chronic and that the hope is to prevent progression. 2% of migraineurs who are episodic go on to develop chronic migraines. Risk factors include such things as;

  • having a high frequency to begin with,
  • having Allodynia,
  • Migraine overuse headaches,
  • Using acute treatments that do not work well,
  • Comorbid conditions; depression, anxiety, IBS, pain disorders, RLS

They know the risk factors but do not know if prevention helps with progression. Although it is a good idea to go on preventives, address lifestyle issues like problems with sleep, address comorbids and have a stress management plan.

The general progression with age is that migraines pick up around, especially in women hitting puberty. They peak in the 40s. Worse during menopause for woman. And then often remits in middle age to later life. However chronic migraines there is a greater risk that migraines will persist into later life. Then the little fact that menopause is no guarantee that migraines will decrease after it is all said and done, but it it Can have that result.

So it is progressive in the subset of people. That 2%ers that progress into chronic migraines. Why is not clear. Although it was stated it tend to run in families and there may be genetic links.