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.

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. 

#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.

#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

#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.

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?

National Invisible Illness Awareness Week: That time was a good one #invisibeillness

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one memory you made that you treasure, despite how much pain you were in.

I have more than a few memories I treasure despite the pain. There are times when we do things even though we know the consequences of those actions. Or times when we want to establish memories with our family because it is important to us.

I look back at a time in my life that was very important to me but also quite difficult in terms of coping with the pain. I was newly away from home which is difficult to adapt to on its own but adds a new edge to coping with pain as you try to establish limits and moderation. Not to mention I was developing migraines on top of the fibromyalgia at the time. This would be for my undergraduate studies at a small university in a small city near to where I grew up.

I treasure this time for many reasons. Mentally I thrived in that academic enviroment. So the experience is something I will always remember fondly. The knowledge something I will always value. The life experiences something that I really rather enjoyed. I may have had to live within limits and moderation... but I lived. I enjoyed. I had some fun in my twenties with my peers.

It was also when I met my spouse so I will always remember that time fondly. Those are all extremely good memories to me. It can be difficult to meet someone with a chronic illness. To figure out how to even date them in a way that works within your limits but we did and it worked for us. We went out on days when I could. Stayed in we, with my roommates, would play a card game called canasta instead. I know, wild and crazy nights. Understand though, I had to live within moderation then and now.

My spouse and I took a trip together to Halifax back then which is another memory I quite enjoy. There was pain. I remember that from all the walking. There were migraines. I remember that from timing when I could take a triptan. However, there was also a lot of fun stuffed into that visit as I met his family and childhood friends as well.

When we look at the past nostalgically it is not always 'I can no longer do want I once could' or 'look at all the compromises I had to make' or look at all the possibilities I had to loss due to my health'. Sometimes we can look at our past and see what we could do with our health. The good memories. Our family. Our friends, Our spouse. How we were able to work with or around our illness. How well we coped. Or how we were able to cope better. The new coping tricks we picked up along the way. The fact is we learn all these ways to cope and utilize them, never looking at how much better we get at it... we always look at what we fail to do, not at the successes.

#triptan and heart skipping not fun

While on holidays I had one hell of a migraine day that required two triptans to even just somewhat manage. I have issues with triptan side effects. More so when I take more than one a day or for more than one day in a row.

It did come to some surprise though that while on the road the next afternoon while driving home I got that skipped heart beat sensation. A lot. As in it just kept happening. It would not stop. In the middle of nowhere of course. It kept at it for hours. Then seemed to slow down, but kept happening all night long. And then the next day. The key thing I think about it happening the next day though was that the triptans should have been well out of my system by then.

However, I discussed it with my doctor today and while it does seem odd we cannot think of what else it can be from. I do get that reaction from a few other medications, but not any I have taken in a long time... because of that side effect. So, not that.

It also occurred a few times today, but sporadically. When I went to the pharmacy I checked my blood pressure and it was 106/47. Another theory might just be blood pressure related I suppose given when the second number drops below 55 I start feeling pretty rough.

There is little point to try and catch triptan side effects on an EKG though for two reason. A) they are sporadic. Sometimes it is a crazy flutter every half hour and that is not something they are going to catch. Sometimes it goes nuts for a half hour and by the time I would get to the ER it is done its little hissy fit. While other times, well, it can be more enduring. B) my doctor and I both agree that being taken off the triptans altogether is a bad idea, because triptans Work. They work substantially better than anything else. So she just told me to continue to use them rarely and to Not use them twice a day again.

I have in the past worried a great deal about triptan side effects because when I use them twice in one day or in consecutive days I can experience some pretty freaky things. Really not something you want to deal with. Especially when you 'don't want to make a fuss' and go to the ER. Now there have been times, where, yes, I have gone to the ER in the case of angina and times where I have not. Generally though most triptans, aside from Imitrex, do not give me That kind of angina. More commonly I have breathing issues, which let me tell you is not fun waking from a dead sleep with. Fast heart rates or slow heart rates. Palipatations and skipped beats. All of which vary in intensities. Thus when I take two... gets worse.

I have seen an improvement by taking them rarely. I still get very run down because it does affect me to some degree every time but I have no cumulative effect going on.

I think what always concerns a person is what if something like that is not in fact a medication side effect? What if it is just an actual effect? Of something else entirely. I think in this case no way to know that sort of thing to be honest. Unless that sort of thing happens when I have not taken the triptan at all. Even so, I find it pretty suspicious I keep having this particular skipped heart beat sensation 'side effect' 'medication sensitivity' lately. I think the only way to really show one way or another is to document it, but like I said, that is tricky. I suspect I will have to wait for another event like this last one and go to the ER about it, no matter what, just to have it on file.

#invisibleillness week: Advice to those with #migraine brain pain

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one bit of advice you would give to someone with a recent diagnosis.

When it comes to chronic migraines my advice would to be proactive and aggressive with your treatment. When you have episodic migraines they are well managed but then while they go into that process of becoming chronic we become well aware they are not. However, we do not know what to do about it. We often do not have that much knowledge of migraines at that point because we did not need to know that much.

The biggest mistake we often make is that we believe our doctors, or neurologists, when they say 'this preventative will reduce the frequency or intensity of your migraines'. They neglect to say it may do nothing at all and you may have to try many more to get any effect. They neglect to say when you do find one that does anything at all it may only last for a few years and then fade off. They certainly neglect to mention that preventatives At Best have a fifty percent reduction rate with migraines, and very rarely do we see Best. So often, we remain chronic. They definitely neglect to say that. So we have this assumption they will give us an effective medication and we will go back to having episodic, manageable migraines. Only to find out that is not true. Only to find out that we cannot even take the medications to treat the migraines we actually get often because there is a defined limit on the amount of those medications we can take in a week, no matter the type... meaning many migraines must be simply endured.

What does that mean? It means in the beginning, right when your migraines go chronic, if not even before when they are high episodic be very aggressive with your treatment. Do not be afraid to research on your own. Do not be afraid to try as many alternative treatments as you can like biofeedback and meditation. Ask about lifestyle changes you can make right away and make a plan to achieve those goals over time, because trust me, some of them can be very difficult at the daily migraine stage. Do a migraine diary that thoroughly tracks your migraines, including food triggers, because this will become more difficult the more migraines you have... but eliminating some of those hard to find triggers can be beneficial. My advice is try to approach chronic migraines on many platforms and angles because just medication rarely cuts it.

When you are high episodic you should already be aware of preventatives, but the fact is some of us go on them very late, which is also not good. Being on them as soon as your migraines get into that regularly monthly range is a good idea. I believe they recommend at even over three a month. I was not put on them until around ten a month. So early treatment is better treatment. However, there are few preventatives that are classed as being moderately effective to be honest. That would be those with the best case scenario of 50% reduction to frequency. And I have rarely encountered anyone who achieved that success rate. It does happen though. However, people also have success with exercise, diet changes, trigger management, biofeedback and mediation and many things combined. Trying to find the combo though is a lot of work, so the earlier the better.

National Invisible Illness Awareness Week #ChronicIllness

I am blogging for National Invisible Illness Awareness Week. The topic for today: just one decision you made that was good (or not so good)

I think when it comes to our health this topic could go on for quite a long time as I have made very good decisions and very bad ones.

So I will go with the most recent good decision.

I recently had to go on a long term leave from work. The process of which required me to choose to find a adequate doctor who was interested in my health needs. It required me to find a psychologist to help me with coping with the chronic pain. It required going on short term leave and then going through the process for long term.

It was a decision that had a lot of factors that were out of my control in fact.

However, the fact remains that I needed to not be working. The fact remains that I was not functioning at work. I had about five or more short term leaves in seven years there. That is not functioning. I averaged a minimum of three sick days a month... not a year and that was in a Good year. That is not functioning. My mental and emotional health was extremely low. And that is definitely not functioning. Yet for years I pretended to function because I felt that is what was expected of me and that is what I needed to do.

However, to survive I needed to not work full time with that company. So that is the best set of choices I have made in a long time. And that set of choices and decisions has led to better treatment and to being at a pain clinic and a new neurologist.

It is not an easy decision by far. It is difficult to not work. One has to cope with the guilt. With trying to find new meaning in your life. To reassess ones self-worth in new ways. It changes how you view your identity. I am told I may be able to work part time in the future so I have been trying to think of ways I will be able to do that.

gastrointestinal symptoms, #IBS and #FM

Often when it comes to gastrointestinal complaints and fibromyalgia we get diagnosed with comorbid IBS with little investigation into it but there can be other underlying causes.

Fibromyalgia syndrome is characterized by chronic generalized pain accompanied by a broad symptomatologic spectrum. Besides chronic fatigue, sleep disturbances, headaches and cognitive dysfunction that are extensively described in the literature, a considerable proportion of patients with fibromyalgia experience gastrointestinal symptoms that are commonly overlooked in the studies that are not specifically dedicated to evaluate these manifestations.

Nevertheless, various attempts were undertaken to explore the gastrointestinal dimension of fibromyalgia. Several studies have demonstrated an elevated comorbidity of irritable bowel syndrome (IBS) among patients with fibromyalgia. Other studies have investigated the frequency of presentation of gastrointestinal symptoms in fibromyalgia in a nonspecific approach describing several gastrointestinal complaints frequently reported by these patients such as abdominal pain, dyspepsia and bowel changes, among others.

Several underlying mechanisms that require further investigation could serve as potential explanatory hypotheses for the appearance of such manifestations. These include sensitivity to dietary constituents such as gluten, lactose or FODMAPs or alterations in the brain–gut axis as a result of small intestinal bacterial overgrowth or subclinical enteric infections such as giardiasis. Prohealth

In my case I was diagnosed with IBS initially with little investigation then years later, after having a ulcer with NSAIDs and a continued NSAID sensitivity afterward they looked into the IBS more because it presented as IBS-D and not as one might commonly see as fluctuating IBS or the more common IBS-C. In which case I got to experience the barium test again as well as a colonoscopy. But they also tested me for celiac and for lactose intolerance. That does not mean to say I could not still be gluten sensitive, as that does not show on that test, or that a FODMAP diet could not benefit me but that they did not look into those issues. 

You do have to wonder at the cause of this symptom though. I will say it was not an initial symptom of mine. It came a few years past my actual diagnosis date, which means well after onset of the FM itself. But when the onset did occur it was pretty consistent from there in. We definitely do have a comorbid IBS occurrence but whether there are further issues at play is hard to determine.

Took a trip into the mountains

I took a road trip into the mountains with my spouse and family for a week to a cabin that my uncle owns. The drive itself was awesome. I love the scenic route into the mountains. The only issue I had was that the drive gives me vertigo well into the next day, so for most of the trip actually I had lingering vertigo but not much I could do about that. and we broke the trip into an overnight stay. The cabin is right lake front. Lovely area.

from the deck

Me on the lake from the canoe
from the dock

It was clouded over one day, which my brain rather liked. My spouse took me out on the canoe and everything. The next day, man it was bright. Great for everyone but me. We went out on the lake again but this time I got a massive migraine. Two triptans, a pain killer and a nap later and I sort of got it down to a dull roar. Even went for a short swim. But it came back. Sunlight is a brutal beast for sure. Still I got out there and got a nice tour about.

My spouse and I found Skaha National Park in Pinticton and took some of the trails there. For a short little walkabout anyway. I can't walk too far but it is nice to get some of my exercise in there in a nice scenic route. This was the overcast day so it was good for it.

On the way home we took two days to get home, taking a stop over as well to break the trip up. This is because I do not drive due to the vertigo situation and my spouse does all that driving himself. We stayed in a nice motel up in the mountains close to Jasper because we wanted to go on the Glacier Sky walk. It is something they built recently that hangs out over the mountains and has a see through floor, so you can see right down. Awesome view as well. 

It was a good trip. Nice and mellow really. We relaxed mostly. Even played some cards to just chill. I read a good book. Got some good activities in there when i could as well. But there was a lot of migraine activity on this trip for some reason. Not sure why. Maybe just sunlight.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...