#migraine and #stroke #study

People with migraine with aura are nearly twice as likely to suffer the most common form of stroke; ischemic stroke. The risk more than triples for migraineurs who are smokers. Seven times more likely someone with migraine with aura uses estrogen based birth control and smokes. Migraines also increase the risk of heart attacks and leg pain due to poor circulation.

"The biology underlying the relationship between migraine and stroke is poorly defined," Drs. Star and Biller write.

Researchers have proposed several possible explanations for the migraine-stroke association:
  • Migraine sufferers are more likely to have risk factors for cardiovascular disease, including low levels of HDL (so-called "good cholesterol") and high levels of c-reactive protein.
  • Specific genes may predispose people to suffer both migraines and stroke.
  • Medications to treat migraines may increase the risk of stroke.
  • A phenomenon that occurs during migraine aura, called cortical spreading depression, might trigger an ischemic stroke. A cortical spreading depression is a slowly propagated wave of depolarization, followed by depression of brain activity occurring during migraine aura. It includes changes in neural and vascular function.
"Taking all of these possible explanations into account, the research may point to stroke and sharing a reciprocal causal relationship," Drs. Star and Biller write. "There is a significant amount of research attempting to further elucidate this multifaceted relationship."
Dr. Star is a co-chief resident in neurology and Dr. Biller is a professor and chair in the Department of Neurology of Loyola University Chicago Stritch School of Medicine. (MedicalPress)

This is nothing we have not heard on the stroke front. Previous research as said the same. What this interesting is that they are trying to determine the causal relationship. 

Accepting there is more to #treatment than #medication

When I see an ad for a migraine cure or a fibromyalgia cure I know it is crap because chronic pain is complicated. I have read enough about it to know they barely understand it. Treatment for it is a complicated thing as a result. There is no magic bullet.

That is why medication is never enough. We might get a little somewhere with it but it will never be enough. It took me a long time to realize this of course. The way specialists make it sound, well, you believe medication will do something it simply will not do. So you believe them for a long time. Until you do your research. Realize it is more complicated than that. You realize what your best case scenario is and that is not what they said at all, assuming you get this best case scenario.

We have to accept life is pain and anyone who says different Is selling something.

What else we do to manage our pain though is really entirely up to us which is a frightening aspect to the whole thing. We don't often get a lot of guidance. It feels like doctors drop the ball. And they have. Because there should be real chronic pain management, start to finish. From diagnosis onward. Not decades in they might do something to help you along. It is a sad state of affairs but at least now they know it is a sad state of affairs.

For me currently I am following the guidance of the pain clinic and this means my chronic pain management is medication, meditation, relaxation techniques and exercise. I don't know if it will work, only that I will keep trying. And that is all that I can do because I know the medication is not sufficient in-itself.

When I am #silent, I have thunder hidden inside

We all react differently to pain. When my pain gets to that high 8 and above it tends to make me silent. I lose my laughter. My communication skills. I sort of internalize it and pay less attention to the external world, even if I wanted to, my focus just isn't there. I see it as my brain is filling up with pain and just doesn't have the capacity for social interaction. Hardly surprising in an introvert as we tend to internalize at the best of times.

So normally what I do, is keep my pain to myself. I am not one to tell people I am in pain or what level it is. If it is a 'functioning' level I believe most people are not even aware of it but if it is this higher level then I do exhibit my pain tells, such as suddenly becoming quite quiet.

I never saw this as a bad thing because a) don't want to be that 'chronic complainer' and b) saving loved ones from knowing the pain I am in. Everybody wins.

However, upon reflection from the pain class I have been in I see how my abrupt silence, lack of laughter where there would normally be my rather infectious giggle and flat expression can be interpreted as disinterest or anger. I have had my spouse confused by it. I have had a friend confused by it. In both cases I was just in a boatload of pain and trying to 'pass'. But we can't always 'pass' as not being in pain when clearly we are. Sometimes communicating our level of pain decreases the anxiety in those around us because it decreases these mixed signals we may be giving out. Just like if you get irritated with pain or moody. And I know what that is like as well, since when I was working and forced to communicate while in a boatload of pain... I would get easily irritated with things that normally would just not bother a mellow person like me.

I made a somecard about that awhile back actually...

It was the migraine talking, not me.

That being said, what the fellow at the pain clinic told me to do because of my inclination towards silence as a response to the higher levels of pain is to, well, communicate more openly. I keep forgetting to put it into practice though because it is so ingrained in me not to. So normal to keep it inside. So natural when in that much pain to just sort of go into my bubble. However, it would make more sense to openly state my level of pain. To openly state what each level of pain means. So when I say I am at an 8, my spouse would know what an 8 means. I am thinking of printing off a good pain scale chart and pinning it to the fridge so he can refer to it. But still knowing what it means to me would help. Like 9 means I would be Laid Out and non-functioning. And 10, lets not even go there, that is rare and I would go to the ER if I ever hit that again. And 8 is when I start to internalize. But 6 and 7? I can handle myself there. Pretty functioning to be honest. 6 is a good migraine day. 7 is putting me on edge but I can handle it.

I communicate so much better in writing, no matter the pain level. Considering I am writing this is some nasty pain. I would write it out for him, but he is more verbal.

The pain that you experience in life shouldn't make you look down on yourself"- We should not feel guilt or shame due to our chronic illness. This is our life, but not our fault.

Or make you look backward and lose sight of your tomorrow."- We cannot dwell on the past. Not our past healthy selves. Not this image we have of who we used to be that was so much more functional than we are now. We cannot compete with this person. We are the person now. We should complete with our current selves and try to improve based on that person.

It is difficult to see the wisdom in the scars they leave behind. But once you discover them, you will realize it is your attitude towards them that will make or break the rest of your days"- So much of coping is our attitude and perspective we have on our illness and coping itself. I have seen how I handled things at my worst with a very negative attitude and my perspective was that the pain consumed my life and would never, ever end. And that eventually broke me. Lucky to have survived it to be honest. I have seen how changing my belief system regarding pain, challenging negative thoughts can help change things. Along with adapting my coping strategies as well. But my attitude slowly changed and my perspective change. Except on bad days, which i still have to fight those thoughts on. And I Hope that I will not at least be broken by pain again with these changes. Hard to say.

This quote though makes you think. That is why I like it.

#ChronicIllness and the #Future

Life can hold a lot of frustrations for the chronically ill in our past and our present. It is a constant stressor to us. Best laid plans... yeah, never seem to work out so well. We always plan though because we always have to be prepared. Anxiety comes from the fact that in some things we have no control over the outcome. No power. And it frightens us, that nothing we can do can change a thing. Such with dealing with doctors, insurance companies and so forth. We also make a lot of compromises for our health, so our lives take different paths than we ever intended. However, these changes are good things because we need to accept that compromises needed to be made.

The problem is we learn from experience. From the past and from the present. It gives us a lot of fear for the future. It is uncertain. We cannot know where we will be. What we will be doing. What our health will be like. If we will be financially stable. We can even get lost in the fact that there will Always be pain in the future and that fact torments us.

I know for me the future used to hold potential and possibilities. It was something to plan for. Something to think about and wonder. Not something to be intimidated by.

How do we accept and not fear the future so we can take hold of our possibilities? I am not sure I have the answer to that.

I believe we must accept there will be things we cannot control. Those things are the things we should make a conscious effort to not stress about, not worry about and not overthink about. Those things can torment us for no reason because we literally have no control over them or what will happen in the future. We will have to deal with the consequences, one way or the other.

I believe we must also accept that we will always have our chronic pain and chronic illness, but that we do not know what level that will be. All things change as does coping and medication. We do not know it will stay the same or be worse. Improvement is always potentially there. If it does stay the same we have the potential to improve our coping.

However, I believe the strongest element to not being held back from our future being open to new ideas and new opportunities. Whether that is trying a new hobby or a new treatment. Open to change means you are open to change and therefore to possibilities and potential... and that is what the future is. You are open to new things coming to you. New approaches. New ways of looking at things. New steps to take. New activities to try.

All I know is I want my future to be different than my past and I am open to finding ways to do that.

What is your #pain #teaching you?

It is pretty obvious that we learn from emotional and physical pain. It is a great teacher.

However, I have to remind myself sometimes it teaches me the wrong lesson. That is to say we learn to cope in positive ways and negative ways. We learn positive habits and negative habits. Often when we are learning to cope we are all on our own for the process so we do what works, so of course we sort of just figure it out as we go along. Sometimes I think the severity of the pain gets to us and then pain can just teach us some lessons that don't do us any good in the long run, but they seem like the right lesson at the time.

I make a perfect example for what I want to demonstrate. When I leave the house I get a migraine. Or the migraine I have gets much more severe. Therefore I do not like to leave the house. Therefore I do not leave it often. Therefore I became a hermit. Pain taught me to Avoid. And avoidance is the one lesson we do not want to learn, even though it seems like that is exactly the lesson pain teaches us.

In general, I would say I do not avoid much of anything. I do a Lot with migraines. But give me the choice, and no, why would I do something with a migraine. It is very unpleasant. So things like socializing got cut out for necessary things like work. Yet this is not good coping I learned, much later unfortunately. Because we need to socialize and have leisure time to have balance and it helps with our mental and emotional well-being. So well I didn't avoid necessary things I cut out what I deemed unnecessary. And this in the long run made me feel worse. Isolated. Depressed. A hermit.

It felt like the right thing to do. Pain taught me I had limited pain tolerance and energy to go around. I needed to choose how to use it. I didn't consider the value of what I was discarding. So I isolated myself which did me no good. I had to learn to slowly socialize again in small doses and in a way that was appropriate for my health.

I have other examples, but when it comes down to it, it is what is pain teaching you? How did you learn to cope? Was it a positive change to your life? Are you adapting well to your chronic condition? Is your mood also being maintained? Do you have negative coping strategies and if you do, do you think you could find a way to replace them with positive coping strategies?

Pain is a great teacher. Just remember sometimes it tells us to not do things. To stop. To avoid. When instead we should be looking at it more of how to plan, how to adapt and how to modify.

Just something I was thinking about today with this whopping migraine. 

My low blood pressure suggests I am now a zombie

Once again my blood pressure concerns me. While at the pharmacy my spouse and I checked ours.

His: 121/80 and perfect is 120/80. His is Always like that. Every single time. Perfect score.

Mine: 74/45 A new Low Score! Not good. Mine is always low, but it fluctuates from 117/70 to 90s/50s. (and in that lower zone I tend to feel cruddy.)

I checked it because I have been feeling very, very fatigued. So tired I could sleep every minute of the day. And have been sleeping in excessively. Just that tired. And when I stand I get dizzy, which had stopped when I was put on my calcium channel blocker but with obviously with BP this low is back. My heart is going weird things when I lie down at night, which is freaking me out.

I suppose what I should do is go test it again. If it is still that low I should go to that walk-in clinic because some of the causes for low blood pressure are serious and should be looked into. And this is pretty damn low. Usually it is my second number that hits the too low area but the first does not and it concerns me somewhat that both have both plummeted.

The whole fluctuating blood pressure thing had bothered me for some time now. I don't think it is normal. I think it is a sign of something amiss. And I wish it would be looked into. Because it can drop like a rock at times. And at times it is hard to stand for long.

At this point, I think it should be dealt with. I mean seriously. It can't get lower than this without a freaking coma.

Help you help You: #Caring for myself is an act of #Survival

I think it is fundamental that people with chronic illness understand they need to take care of themselves first. That they are in fact a priority as well. If they feel good other things will follow from that. If we push through the pain and fatigue to get things done because we feel we should, for our family, for our loved ones, because society demands it... we will suffer for it and feel worse off. It is a lesson we learn over and over again but it never seems to stick because of one simple thing: Guilt.

We feel guilty when we do not live up to our own standards of what we feel we should be doing. What we feel societies standards are. What we believe our loved ones deserve. Guilt does us no good at all.

We are chronically ill. And we need to take care. Just take some Care.

There are two fundamental things I believe we all should do and remember, always.

Rest: Fundamentally chronic pain and chronic illness is exhausting. We need to take more regular breaks. We may need a nap in there. We might add in relaxation breathing or meditation. We should accept when our body says Rest and take care of that need. Exceeding our limits is exactly the opposite of what we should do.

Pacing: Pacing is the most fundamental tip of the chronically ill. We need to moderate our activities and pace ourselves. Any tasks we have we should consider our limits, never exceed them and have enough rest in there between activities and know when to say no to others. In my pain clinic class we were discussing pacing. We all had stories where we would have a low pain day and as a result what do you do? You do a crapload of things to compensate because you can get so much more done! And then as a result from That you feel so much worse the next day. You plummet and pay the inevitable price for exceeding your limits. The instructor said we all need to avoid this boom/bust thinking. In other words, good day or bad, we always have to pace. We always have to understand that while we live in a fast paced society we move to the beat of our own drum, and it is a slower beat. It means you can plan to do a little bit of housework a day, sure, but on a 'good day' don't clean the whole house. Well, that is an exaggeration even on a good day I can't do that so not sure if others can. But we can do more on a good day, so we push too far. Just remember to always pace yourself in order to avoid the boom/bust in energy which ends up making you feel worse in the long run, well, actually quite quickly this will make you feel worse than if you remain steady.

If we incorporate consistent pacing and utilize rest when needed we are taking care of ourselves in a way that is necessary. Like the quote says, it is an act of survival. We deserve to take care of ourselves in order to feel the best we possibly can when oping with a chronic illness. I think these two are your fundamental coping tools to start with. If you have them down then you are helping yourself out in the long haul.

The red pill or the blue

I saw this on Facebook. And I would go back ten years as long as I  know all the things I know now. I think I would handle the pain better with a second go at it. Maybe even never have a suicide attempt at all. Or a long term leave from work. One could hope.

Whereas going ten years into the future, who knows where you would end up and what you would have missed of your life?

#pain behaviors and #perception

An interesting topic was brought up at the pain clinic class today. We were talking about pain behaviors. He wanted us to think about our pain behaviors and how they are perceived by others.

I have always been of the opinion that with chronic pain, well, it dampens our pain behaviors. First of all we are not as free to express them as are people with acute temporary pain, where it is perfectly acceptable to moan, groan, cry or otherwise exhibit pain behaviors while you recuperate. And people have genuine sympathy for that. Not so much with chronic pain. People get a little tired of that and we learn to muffle them pretty good.

Yet, as we discussed in this class, that certainly does not mean we do not have pain behaviors. We just change them. Pain is represented by new signals. Signals our loved ones, co-workers and friends can usually pick up pretty well. Not all the time if we do not verbally express it, but more than we might realize.

I have often been called stoic by doctors and ER doctors. It is their favorite term for me. And it always surprises me when they say it because pain is very familiar to me. I don't express it the way they expect. Doesn't mean I do not have ways that it is seen, just not ways that are familiar to them. It causes a bit of a disconnect in those situations; from the pain I am feeling to the pain I am expressing. Yet when I thought about it for just a few moments I could easily come up with some recognizable signs of my pain:

Silence: I get very quiet the more pain I am in. No laughter or chatter. Just necessary words. And it is very noticeable to people who know me. (how this can be misinterpreted? As anger, because when I am pissed I also get very quiet. I don't like to say things I cannot take back and prefer not to say anything in anger. And I have had my spouse occasionally confused as to which this is. Anger is rare for me and I can only assume the times he is confused are the times when he thinks I have a reason to be angry! However, strangers might think I am just a quiet person. A friend of mine once thought I was angry at her and I had to explain that, no, of course not... it was just the pain. I just internalize the pain and pay less attention to my enviroment and can focus less on communication. It is just how I deal.)

Grabbing and holding my neck: I have a lot of neck pain and if I am sitting it feels better to grab and hold the muscle in the back to relieve some of the pain. Sometimes massage it a bit. (This I believe could be misinterpreted by someone who does not know me as general muscle tension or irritation.)

Wearing sunglasses all the time and inside: I have a lot of photophobia. More so with a migraine but also without a migraine. So sunglasses are a pretty obvious sign of them. (This I have actually gotten looks for. I can assume they may think I am hung over or stoned.)

Those were the ones that just jumped out at me. But there are so many more. I have a lot of foot pain so when i get up those first few steps are 'careful'... and that is a noticeable pain behavior. Vertigo behaviors that are not pain behaviors... like staggering and falling and I do wonder if people think I am drunk. One obvious tell for someone with FM is how we reposition ourselves all the time because we cannot sit in one position for too long without considerable pain (makes a person look uncomfortable or nervous), then when we Do sit in one position for too long for whatever reason as soon as we move we might groan, wince, or move really stiffly (all obvious tells of pain).

So we have them. We all have them. More than we might like to believe. As 'stoic' as I am it didn't take me long to think of some pretty clear pain tells. Pretty clear migraine ones as well.

He said to pay attention them and how they may be perceived by others because you may want to do something about that perception. With strangers, not likely. Does one really care about a fleeting opinion? Not really. But we do for most other people in our lives. Sometimes clarity of communication is important.

He also made the distinction between explaining vs. complaining. I think this is pretty important when it comes to pain. I found a long time ago I communicate less about my pain because I hate the perception of being a chronic complainer, which you feel like when you talk about it. When I so discuss it I tend to go into explain mode because it feels less uncomfortable to me. To be honest, I don't much like it either since if feels like I 'talk' about it too much. But I prefer to try to establish some sort of understanding. Or saying this is why I do this. For example I once told someone the reason I preferred not to wear dresses and skirts is because in order to feel comfortable with FM I need to switch positions with my legs every few minutes and it limits the positions I have to choose from, thus makes it pretty painful pretty quickly. I explained this because I was wearing a dress at the time... and regretting that choice. I explained only because the person noticed my pain. Again, the pain was perceived due to my having increased it so rapidly and thus having troubles getting up and rather than complaining about it, I offered an explanation. It is always nice when we encounter someone who 'gets' us but most of the world will likely not understand this chronic pain we live with. As I have often said we have the option to reveal aspects of it or conceal them. We do naturally conceal a lot, but we reveal more than we realize. We can choose if needed to explain to people why they perceive certain actions. The need to get up and stretch. The need to wear sunglasses. Whatever it is.

#pain and the twisty path of dark thoughts

Sometimes when the pain levels are high it is hard to get beyond that. It is just you, your thoughts and the pain. I find this to be the most difficult of times because distraction techniques are hard to come by and thoughts are always dark ones. Often the worst time is at night I find.

There are times I don't even try to escape it all. I just blog it out. Get it out of my system. A journal works for this purpose as well. It is just that sometimes when you express yourself, just get it down it gives it less power over you.

There are other times only sleep will be the cure. However, sleep is a hard commodity to come by with high pain levels and insomnia.

Other times, if I can take it, I will write some fiction. Get myself out of that head space. Anything you can do to get yourself out of that mental head space is a good thing. Even if it is just listening to music you find soothing.

There will be days and nights when nothing works. When you are stuck in that acute pain that drives your mind into dark places. It is good that we remember... it will pass. When the pain lessens to acceptable and tolerable levels again we feel much more capable of coping with it. Just breathe and know it will end. Sleep will come and the next day could bring with it a more tolerable level of pain once more.

What do you disclose about #illness

I wonder if this is something we could say to people to understand chronic illness. "The difference between you and me is that when you wake up, your nightmare ends." Or does it sound too dramatic? Not dramatic enough?

I heard somewhere today that it is not a good thing to hide behind this facade that we have perfected so well. We smile to hide the pain. We say we are fine when we are not. This leads to isolation. Isolation leads to depression.

Rather it was suggested we be more upfront we how we feel to avoid this cycle. I am not sure about how upfront we can be. I have this fear of being labelled a chronic complainer or a hypochondriac. A long history of being ignored by doctors or their adamant disinterest in my symptoms has led me to be rather stoic. Would honesty be the best policy in all scenarios? I always feel some level of disclosure is good. Good for us and our loved ones. I just feel bluntly honest about the impact of this pain might be a little hard to take all the time.

Perhaps just something less intense. Perhaps something as simple as putting your pain level or fatigue level on a calender in the kitchen so everyone knows where you are at. Without saying a thing you are telling them if it is a bad day or a good day. Tell them what a good day feels like and what you can typically accomplish. Tell them what a bad day feels like and you can typically accomplish. This seems to be a very open communication.

I think some of us are better at this than others. My dentist today even said I was stoic when he gave me my shots. I have to wonder how to people usually react? You know it is going to hurt. But only for a second. Not a big freaking deal in my world. My jaw hurts like a bitch though from the fact I have TMJ and it took them a long time. But not much I can do about it. Such is life. I think I am ery used to holding the pain in as to not affect others around me. It has become an ingrained habit with me. It would be difficult to break. Been at this pain game a very long time.

What do you think? Use your pain facade? Go for full disclosure? Or the more practical approach of in the middle, which makes far more sense to me.

Thinking a little on #Lifestyle #changes

One should never compare yourself to how others are doing when it comes to chronic illness. That being said there are some people that I really admire for the things they have accomplished. I read some comments about some people who are doing phenomenal with exercise programs. Others doing well with massive changes to their diets. Others who have quit smoking, are exercising and doing changes to their diet all in one massive go.

I love these stories. I like to think they say 'suck it chronic illness!'

I also like them because they are inspirational for those of us struggling to make lifestyle changes. It suggests to us that a) it is possible and b) we might in fact get a positive result from it.

Lifestyle changes are very difficult because we do not see a result right away. Often we see the opposite right away. Things get worse before they get better. Not exactly encouraging. Also it takes a lot of willpower. And not in the ordinary sense of the word either. It takes chronic illness willpower. We are tired. We are fatigued. We have little energy and willpower is something we use to get up in the morning. To do necessary tasks in the day. To to these extra tasks is difficult. Very difficult.

They are worth attempting. I always suggest starting slow with baby steps. Never compare yourselves to the pace of others. Like for exercise, find your minimum baseline and then you slowly increase from there based on your comfort level. And everyone will proceed from there differently. As I know, since it is slow going for me. Same thing for mediation. No one is going to hit that zen zone out of the gate. It is recommended you do five to ten minutes a day and slowly you just get better and better at it.

We all understand the need to break bad habits and make new habits that will be beneficial to us. However it is a process. We don't even know what combo of things we do will even have any effect and so that is difficult on us sometimes. We do all these things with potentially no return. I like to think of it like this; we do all these things and there is a potential for return, like each one might do a slight bit such that it builds up to some sort of impact. And some sort of impact is better than no impact. Even if that impact is just increasing my capacity to cope with pain.

So to those who have achieved these goals and have had a positive impact on it, this is awesome to hear. We need to hear these positive stories to give us a boost once in a while. To hear that exercise is possible and had a positive impact instead of flat out impossible and had no impact. It is good to hear about the positives and the possibilities. We simply do not hear it enough I think.

Look at that I am #smiling in #pain

I have chronic pain ever minute of every day. Right this minute. And you know I am perfectly capable of being happy. Of smiling. It does not negate my pain. Right now I am kind of mellow with pain on a 7. 7 is a decent pain day really. 6 would be better, but far less common.

It is also true that I can really, really fake a good smile to mask that pain. But then we learn that trick very well.

However, I can be happy. I can be in a very good mood. This is not impossible. It is just seriously strained and difficult to maintain when the pain level gets up in the 9 area on the pain scale. But that would be the same for everyone.

This is not to say that chronic pain does not affect mood because it definitely does. The pain itself does. The lack of sleep does. They both affect serotonin so maintaining mood can be difficult. And sometimes we have to actively try things to just boost our mood in different ways. Or just actively not spiral down the black thought road and distract ourselves.

Pain is complicated like that.

However, I don't like this assumption that we cannot be happy and Still be in pain. We cannot be smiling and Still be in pain. Of course we can. We are very good at this pain gig now. We have learned from the master... that of just continuously being in the state of pain. Yes, I can imagine someone in temporary pain in the 7 or 8 level might have a problem being happy about it. But I am always in the 7 and 8 levels and sometimes the 9 level. So I have adapted a bit to it. I understand I need to live in with the pain. Jokes and laughter have always been a great way for me to cope with pain to be honest. We still have the pain. It doesn't go anywhere. It just means we are trying to push it to the side and enjoy a moment the best we can.

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...