Thursday, October 23, 2014

Wait... this is not the #lifestyle I ordered

Instead we get the Chronic Pain Lifestyle. That is a rough deal but it is the one we got. We can mourn the fact we didn't get the one we requested.This can be a difficult task really. We are constantly making adjustments for our health and it almost seems like our health is what is ruling our life choices. No one likes that feeling.

Fundamentally as a young person with chronic illness I had the feeling I could work around my illness. Or work with it I should say. I knew the limitations I had to live with but I thought I could achieve my goals anyway. One thing you just do not expect however is that your health will get worse and so that simply is not the case. You have to keep making further adjustments and compromises.

I simply do not like the fact that having the chronic illnesses I have compromises my financial stability now and in the future. I don't think I will ever come to terms with that. I always had the desire to have a certain comfort zone financially, which was not even that special, just that sense of security to know I could pay my bills and have a little extra left over for whatever and for investments. That is all. I like to live simply and the main spending I have is on books to be honest. However, chronic illness takes away that surety. And you live pay cheque to pay cheque. In my case I know I cannot work or I can only work part time and neither of these options is sufficient. However, the long term leave I am on now is better than government disability in Canada which is substantially lower. I would be hard pressed to live on that. How the government can even comprehend people can sustain themselves on that I do not know. And that is what people with disabilities (and some seniors) get to look forward to. This is not the lifestyle we wanted or chose. This was chosen for us.

I think sometimes about working full time just for the financial stability. Yet I fear it due to knowing what will happen with the pain, stress and sleep deprivation. It is simply and impossible state to maintain. I know people who do it and they feel the same way I felt. It is a horrible existence to live in when you have to, which some of us do. I call it an existence, because there is no life in there, just pain and surviving the pain. In my case, I had a lot of suicidal ideation in there because in no way would you want to live like that. Despite societies expectations. Despite the expectations of your employer. They can expect you to become healthy all they want, it does not happen. And you just yearn for an end to the pain.

So we are left mourning the lifestyle we could have had. This alternate life had we not been afflicted with this pain and illness. What would that life have been like anyway? How different would it have been? I imagine it would look entirely different. Ifs... are nothing though. Just dreams within a dream. They do not exist. We have to deal with the lifestyle we have.

And that lifestyle is the one we have to improve any way that we can. Fit some life into it. Lift our mood any way we can. Get out of the house at least once a week. Do something for ourselves. Reduce our stress any way we can. Don't feel guilty for being ill, you are doing the best you can with what you have. Make small changes in your life to make your life a little better.

Sunday, October 19, 2014

#Neck pain and #migraine

A 2010 study of 113 patients found that neck pain occurred with the migraine attacks more often than nausea, even though nausea is closely associated with migraines.
An informal survey of 144 people with migraines found that 75 percent said they had neck pain with their migraines, which is the same percentage that experienced sensitivity to light, sensitivity to sound and nausea. In this poll, neck pain was named three times as often as migraine aura and vomiting.
Type of neck pain in survey:
  • 69% felt tightness
  • 17% experienced stiffness
  • 60% said the neck pain came first

Neck pain is a migraine symptom. Not something that is cause from muscle stiffness, which can also occur. Sort of a two for one deal there. I have been seeing someone for physio on my neck to help with the migraines and it is frustrating. At times I can do the exercises fine, but right before and during the migraine my neck hurts like hell and I cannot. So that is a good portion of the day my neck hurts like hell. I was hoping the exercises would help with the muscle tension, strengthen the muscles and lessen the pain I am getting and maybe it will. But the pain that comes with the migraine, will still be there.

All day today it felt like I had strained it in some way. But that is just the way it feels. Lots of pain in the sides and a extensive amount in the back. Makes it hard to sleep.

A very undervalued symptom if you ask me. To me it is like all the pain we feel with a migraine... it Adds up. Neck pain, migraine itself, jaw pain, teeth pain, sinus pain, temple pain, skin pain, eye pain.... lots of pain in the Entire head area.

Thursday, October 16, 2014

The #fatigue machine

I know they say exercise will help with fatigue but I must say that does not seem to be working for me lately. Exercise has most definitely been increasing my migraine intensity so that likely is not helping.

You ever just get that insane fatigue that just seems to be compounding and compounding? Just getting nowhere... slowly.

Partly it is this insomnia and drowsiness combo. Can't sleep at night. Can't shake this drowsiness during the day.

Just have an insane time just getting up.

And I am dizzy. I have those black spots in my eyes and sparkles when I stand. I had thought the medication I was on had really helped with that, and it was, but lately just really dizzy. That is a component to this fatigue. You think am I tired? Hungry? Need water? Exercise? More sleep? What is it that will Help with this? You try everything to shake it and it is just there like a thick blanket.

Difficult to deal with all on its own because it is hard to get anything done when it gets bad. I have been motivating myself to exercise, as required by the pain clinic, but it certainly has not been helping me any.

Wednesday, October 15, 2014

Fighting #Overthinking

 Don't believe everything you think. Fact is it takes three positive thoughts to replace just One negative one. I think we dwell on those negative ones too. Spawn more of them. Get on that slippery slope of more and more of them.

I am very prone to this myself. It is the one reason I have started a Gratitude Journal to start writing down one thing a day I am grateful or thankful for... to focus on at least on positive thing. Helps get your mind thinking in the right direction and improves mood.

Poor Eeyore, always thinking the negative. I always did relate to him since I was such a cynic as a child. When I do get on that slippery slope of negative thoughts I usually utilize distraction as my tool of choice. Stop the thought process and turn it to something else that requires no thought or changes the thought direction entirely.

We are not always going to have happy thoughts or Be happy. That is a fact. But we can activity do things to manage those thoughts to help manage our mood the best we can. Like listening to some upbeat music. Or mellow music and doing some relaxing deep breathing exercises. Utilizing those distraction techniques also very important. Going for a short twenty minute walk outside. Or a short outing for coffee or tea with friends... a little socialization does wonders for mood. Just some ideas to consider.

Tuesday, October 14, 2014

Have a Thankful Day

It is Thanksgiving Day for us Canadians. The day when we ponder what we are thankful about and spend time with family. I didn't spend my thanksgiving with my mom this year because she was on a well deserved trip someplace warm. So my spouse cooked up a turkey dinner for the two of us and it was pretty damn good.

I am very thankful for a loving family. A mother like mine is pretty awesome. She always has my back and is there for me with any problem I have to solve or just to listen. She is a great support system to me.

I am thankful for my common law spouse who has stuck by my side for 17 years, in sickness and sickness. Who when we think about all the stress it causes for me not to be working would still prefer me Not to work due to the stress it would cause me to do so. A man that whips me up a turkey dinner and makes sure he buys a pumpkin pie because I was craving it.

I am thankful for friends that that I can socialize with a little and this makes me feel really good to get our of the house a little bit. But, when it comes that a migraine rears up, they are fine and understanding that I must leave early. Friends like that are hard to find. I like that they choose activities I can do... like playing cards and dice, over things I cannot like going to the bar. Going out is saved for exceptionally good days and they often do not stay that way, but I do it for them and my spouse on occasion. I appreciate good people like that. That helped us build our fence and offered to help us put down flooring. Pretty awesome.

You have to be thankful for the people in our lives that bring meaning to it. The rest... is just the little things.

I am also thankful for low pain days when they happen
I am thankful when a migraine waits a bit to strike so I have a bit of day free of it.
I am thankful that my vertigo medication works decently enough.
I am thankful there is not snow on the ground yet.
I am thankful I have been able to drive my car in town for short durations.

When I think of the benefits of daily gratitude I know we should be able to find at least one thing a day we are thankful for. Just one.

Tuesday, October 7, 2014

the value of your time

How succinct and true.

I know there is a price to be paid for everything I do. I have always thought about in terms of cost and benefit terms. There will be consequences but there will be benefits. There have been times were the cost was high but the benefit was worthwhile. And there are things we can do that have a low cost and a good benefit to our wellbeing.

But maybe we should think about it in terms of the life we exchange for it. What are we paying the price for that is making our life worthwhile and what are we paying the price for that is draining our life of vitality?

In other words what are we doing that is overextending our limits beyond our coping strategies such that we use the phrase 'I am not living I am existing?' And I know many of us do. I have. Too much life is given for what you with is worth the price.

But what are these things you think are worth the price? What are the things we may have cut out of our lives because of the pain and illness, due to necessity, being forced to focus only on what we felt was absolutely fundamental... and yet, those very things bring a great deal of value to our lives in mental and emotional wellbeing.

The price of anything is the amount of life you exchange for it... so we have to choose very carefully what we are using our valuable energy on. If anything we more than most people have to pick and choose our activities with more care and attention. What is of beneficial value and what is detrimental?

Friday, October 3, 2014

It's just your fibro

Man, this guy is totally right about this one. I heard this one all the time. It is just your fibro.

 But... you get the occasional right doctor who listens once in a while who say diagnosed me with hypothyroidism. Not to mention wicked headaches that turned out to be migraines.

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.