Monday, September 29, 2014

Persistent Aura Without Infarction (PAWOI)

Persistent Aura Without Infarction (PAWOI) is an ellsuive 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. "
he 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.


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.

We are enough #Worthiness

“The Power of Vulnerability” video

This is a lecture about connection. Because people connect. She discovered that when she discussed connection people had stories about shame and fear... the fear of disconnection. This 'excruciating vulnerability': Have to allow ourselves to be seen... really seen.

Those who have a sense of Worthiness believe they are worthy of love and belonging. They have the courage to be imperfect. They are kind to themselves and then also to others. They are authentic beings. They embraced their vulnerability. They believe what makes them vulnerable makes them beautiful and that being vulnerable is necessary.

I believe that with chronic illness what suffers is our sense of worthiness. Often it is because our concept of our selfhood suffers. Who we think we are, who others think we are, what we think we should be, what others think we should be... all this thinks batter against our sense of self. We may have believed we were worthy but then lose that. We suffer tremendous guilt that we are sick. That we cannot do all the things we think we should. Perhaps we are not able to work, and therefore even that is something we should feel guilty about. We are Not kind to ourselves.

She says that often we numb vulnerability. Which numbs everything, such as joy, gratitude and happiness. With chronic illness we often do numb vulnerability because we feel it is a weakness. We feel that our chronic illness has compromised our ability to function in society and this makes us vulnerable and we have to mask this as best we can... because we are supposed to be ashamed of this, all stigma we have been exposed to tells us we should be shamed of this weakness. It does make it difficult to find gratitude in our lives. In fact that is why it is recommended we do daily gratitude exercises... to help us connect to that.

She makes some recommendations at the very end here:

-let ourselves be seen- truly be seen. And this can be difficult since with chronic pain we often have a facade on to mask a part of our pain from others. To function. To not have others worry. I had a doctor once tell me that I was very 'stoic'. And I wanted to tell him that I was very stoic because people like him had made me so. Their indifference to my pain made me mask it. How can we be seen when we are invisible I wonder? How can we truly express ourselves when people do not want to see our suffering? How can I say this is my life when no one wants to hear it?

-love with out whole hearts- This I definitely believe to be true. Love openly and completely. Like there is no tomorrow.

-practice gratitude and joy- Definitely practice gratitude. Every day write down even one small thing you are grateful or thankful for. It is said to help with your mental outlook and mood... and certainly it does not harm. It is said it take three positive thoughts to replace one negative one, so this is the idea behind this... focusing on at least one good thing a day.

-I am enough- I think we all should try to think real hard on this one. We are enough just the way we are. Not as we could be. Not as we were. Not if we had no pain. Not if we were cured. But just as we are. What we can accomplish is enough. How we love is enough. How we function is enough. Who we are is enough. We are intrinsically valuable and worthy and enough.

Wednesday, September 24, 2014

To drive or not to drive

That is indeed the question when it comes to migraines. Migraines and Driving do not mix

If it’s not so bad and we feel capable of driving, we still have to consider that the pain and nausea may be distracting us.
• Pain aside, we may have cognitive difficulties in prodrome, headache phase, and postdrome which can impair our judgment when driving. Our mental processing is slowed.
• During aura our vision may be impaired.
• Heightened light and sound sensitivity may not only make driving unpleasant, they may also interfere with the perceptions we need to drive well and safely.Migraines and Driving do not mix

Since I have been off work, had issues with migraine associated vertigo which is rather unpredictable to say the least and then the migraines themselves my spouse and my mom have driven me pretty much everywhere I need to go. Which given my hermit lifestyle is doctor appointments, physio, specialists and pharmacy. Joy. Point is no one trusts me to drive into the city. I certainly don't. In fact, today it trigger vertigo I still have. And that happens unpredictably.

Now the reasons, aside from vertigo which is a serious reason that I do not like to drive with migraines are A) I am visually impaired at times. At times a lot. It fluctuates a lot since I have persistent migraine auras. Of which, they tend to get more vibrant and frequent on sunny days, so there is that issue. B) The pain. Pain of any sort, but certainly the acute sort, is a constant, persistent distraction. We are never paying 100% to Anything Ever. Driving is one of those things where this can be an issue. I have driven so very slowly with high levels of pain in order to get home I could have walked faster, because I could not trust myself to drive faster than that and pay any attention. C) Brain fog. Migraines cause a lot of brain fog and concentration issues. You see a stop sign but fail to understand what it Means, so you don't stop. That is one example that is real. And I have plenty of them. Your brain is fried on a migraine. It is frustrating as hell working with one, but driving to me is dangerous.

But, and here is the big problem... I have asked about this to my doctors. About medication. About the migraines themselves. They have No Issue with driving and migraines. If they do not, then if I have no alternative transportation and need to Work... then I must drive. If my license on the other hand were restricted I could get the disability transportation. We just very recently got a few little bus routes where I live, while I worked, there certainly was no bus to take. And it was too far to walk. And I have far too much chronic pain issues with FM to bike. I had to work as that seemed to be something that was pretty much not a choice at the time, whether I could handle that or not. So it seemed I was the only one that had a problem with my driving and had no way around the issue at the time. It was not a good situation to be in. I always found it ironic when I had a horrific status migraine I would get my spouse to drive me to the ER... but the days of that status migraine I drove myself to work, likely not helping with the pain I might add. I only ever drove to work and home, never anywhere else by choice, but it doesn't change the fact there was some damn close calls there that were all migraine related.

So we should not drive with a migraine, but at the same time legally there are iffy consequences if we caused an accident with an Untreated migraine. A horrible way to drive. Or to go to work.

On the other hand, we can get charged with a DUI from taking the medication we need to drive with that pain... and get to work with that pain.

If we have a choice, and the fact remains we all don't have a choice, then we should choose alternative transportation. 

Monday, September 22, 2014

#migraines and Canadians

CBC news reported:

Federal agency released a report on the prevalence of migraine, stating an estimated 2.7 million Canadians reported to have been diagnosed with severe headache in 2010-2011

  • 2.7 million Canadians stated they had been diagnosed with migraines.
  • 26 % of them stated migraines prevented their usual activities.
  • 26 % said they felt left out.
  • 53 % said migraines prevented them from driving.
  • 76 % said it affected their ability to get a good night's sleep.
"For three-quarters to say that it had an impact on their getting a good night sleep, over half said it prevented them from driving on some occasions, even people feeling left out of things because of their condition. There's some social isolation that could be occurring. It may be limiting on people's education and employment opportunities. That can have a long-term effect."The sleep findings are important given lack of sleep can impact other aspects of life, Ramage-Morin said, noting how the effects can extend beyond the individual to the larger community. CBC news

Both women and men questioned migraines were common between the ages of 30 to 49. This group represent 12 % of the population in their prime working years. An important factor when you consider the impact migraines can have on work and career. "Ramage-Morin suggested employers, health-care workers and policymakers could use the findings to understand that  a large proportion of the population is affected by migraines. Workplace policies could be used to help support people with the condition."CBC news

On average migraines are diagnosed at age 26 which is about four years after the symptoms, migraines, are first experienced.

70% of the migraineurs in the study were employed at the time of the study. Of these one-third said they face limitations in job opportunities. "Previous international studies suggest migraines are associated with lost productivity on the job."
CBC news
Almost two-thirds of people diagnosed with migraines (63 per cent) were classified with minimal or mild depression, and 20 per cent had moderate to severe depression. It’s known that migraines increase the risk of depression and depression increases the risk of the headaches.
Forty-two per cent of people with migraines said they had taken prescription medications for the condition in the previous three months. Among those not taking prescription drugs, the most frequent reasons were that they did not need it, they hadn’t been prescribed or they did not want them.
About 56 per cent of migraineurs said they had paid out of pocket for medications in the previous year for which they wouldn’t be reimbursed. CBC news
The report was based on the 2010 and 2011 data from the Canadian Community Health Surveys and the 2011 survey of living with Neurological Conditions in Canada.

Sunday, September 21, 2014

#migraine #pain and thinking about how we behave to others

I often think about how pain changes how we are, behave and act. I have written often about the pain facade where we mask our pain because that is how pain changes how I act and behave.... I hide it.

Well, that is not true, I hide in in certain situation by joking around and making people laugh so they cannot see the pain I feel. And when I cannot hide it I become very, very quiet. To the point my spouse will know I am either a)pissed off about something or b) in pain. lol. I also retreat because I need alone time to deal with the level of pain. I act befuddled because I have a hard time focusing on what is going on around me, outside of the pain, but yet I am trying to.

Yet I know for others there can be additional ways that how we act and behave changes. People can become more snappy and impatient. Or irritated easily. Or anger easily. They can lash out at small things. Snap at little things. Because they are in a lot of pain and all those things annoy them so much more than they normally would. That is not them, it is the pain.

For my being absolutely silent around those I care about is abnormal. When my giggle is silenced, that is abnormal.

There are just different ways that the pain can affect our behaviors, temperaments, moods and actions at the time. I understand how angler and irritation can be easily facets to that even though in my case it is now how it manifests in me.

It is frustrating that pain can do that, but at the same time we cannot treat every migraine so we have to endure the pain.

#Smile! It is good for you

Wednesday, September 17, 2014

#Scent sensitivity and cleaning

With chronic pain I find some things difficult to do. One of those things is cleaning the house. I do it in a sort of slow rotation. I do know this though, it is cleaner than it ever was when I was working because I was never capable of much at all while working. All that pain tolerance just to get through work and nothing left over to clean or cook or move. So it is better. I'll say that. But by the time you get through any sort of rotation, you need to start over again and nothing is ever as clean as it could be. But you do the best that you can and I am glad for that fact.

You also have to be insanely careful of the cleaning product choice. Scent sensitivity will get you every time.

With chronic migraines and fibromyalgia both strong scents just do not help the situation At All. I have a brand I use and I stick with it. Cannot stand things like lemon scented cleaners for example. Or bleach, that is horrific. But occasionally if you clean too much it is just inevitable it will be an issue.

Now I have company coming to stay with me next weekend so in preparation for that I have slowly been cleaning a little more than I usually would each day. It has already caused some issues. Today I woke up with a unrelenting migraine that got worse as the day progressed. Because I made it worse. I did some light cleaning knowing I would be unable to exercise so I might as well accomplish some of my cleaning goal. But the smells, oh the lingering smells got to me good. I swear I can still smell it all. And my head cannot handle it. I tried to treat the migraine earlier and it was not going for it. One thing about scent issues is nausea. The nausea just gets to you. So I have this 9 migraine and a lot of nausea. Not sure it was worth the light cleaning to be honest but with chronic migraines I always feel like if I do a little something each day then that in-itself is an accomplishment. Some days though, I know, I should just rest instead because the pain intensifies too much.

Still I did attain some good progress yesterday towards my goal so that is something. If I do a little each day then the house will be tidy at least. And key areas will be clean. And that is all I can ask for to be honest.

Monday, September 15, 2014

Cats know what I am feeling #rest #days...

There are days...

When I just want to be a burrito...

There are days...

When I want to find a dark place to hide...

There are days...

Yes, there are days,

When I just want to be alone.

You know what I mean?