Thursday, August 28, 2014

Chronically Ill and Mourning

"It's just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I am physically able to do."

You never stop mourning the possibilities you will never have. It is a fact.

I have been chronically ill all my life, essentially, and one would think that would enable me to understand that I have limitations. Instead it just made me have this strong desire to find something I was passionate about I was capable of doing within my limitations. I knew for example, that I had a lot of problems with physical work, with repetitive motions, with standing long hours, with lifting... a lot of restrictions. I wanted to aim for a desk job. I went to university in order to find something I was passionate about. Academically I never had a problem. Finding subjects that interested me was never a problem. Excelling was never a problem, once I figured out how to compensate for the fibrofog issues that is.

I had this belief that I could attain my goals if I just pushed through the pain. If I just ignored it. Because by the time I went for my Masters I was in school and also working. I had fibromyalgia but I also had to contend with chronic migraines. I hit a new wall of pain. I discovered that, no, you cannot just push through some pain. That pain once you reach a limit affects thinking as well as you physically. Your passions and your dreams. So you make compromises. You discard that passion and that dream.

I decided I would work instead. Just a job. A desk job I could physically Do. And make that a career. Yet, I could not actually physically do it. I could not really function through all that pain. I could not have a perfect attendance if my life depended on it.

So I am not working, which at this time is a good thing. I am coping with that pain better. I am surviving. Yet I have this frustration in me. This eternal frustration that no matter what I want. What I desire. What I dream of. It is stalled by what I am physically able to do. I have been told I might be able to attain part time work. At best. That is my best case scenario. And I have to realize all those things I thought I might be, become, all those possibilities... are gone because of this pain. Pain just ends possibilities.

And this is not a poor me statement... but I wonder what would we all achieve without this pain? If it were just never there what would we have been? What mountains would we have moved? But it is not to be.

We must take what we can get. And to that end, we constantly mourn. Mourn what will never be. I can understand that these compromises are a good thing for me mentally and still mourn the lack of what could have been. So we have to deal with this lack. This void. And fill it with what we can.

Monday, August 25, 2014

#Migraine and #facial pain image

This is why when you have a migraine you jaw, your teeth, your eyes and your sinus area can all have pain.

Friday, August 22, 2014


I am doing a lot for my chronic pain lately. More than I ever have. And that is a good thing but I cannot say that it is making a difference. And there is this fellow that works on contract from the insurance company who phones me all the time who I get the impression is waiting for me to improve. Well, so am I, man, so am I. However, nothing in this chronic pain world is guaranteed is it?

I have been told there are no more medications to try for my migraines and that is why they are pushing the exercise idea so hard. Might as well they said. Might as well try it. I know I am impressed by that.

Yet, I can say it is not getting worse. I know what the worst was. And it is better than that. When I was working that was the worst. And I have less status migraines because I get more sleep. And that has improved my mood. Both good things.

Sometimes though that is the good story. When we are not working. That is not the story this insurance fellow is looking for. Not really the story I am looking for really. It would take more improvement though to be able to work. At any level. According to the pain clinic the level I can expect if I do see improvements of some sort is not what I was doing. So I cannot expect to return to my previous job. I might be able to work part time. However, the issue is if I work part time, which I agree does make sense, then I must work at an income more than I am making on long term leave and I am not sure that is possible. I still think it sad that I would work as hard as I have been to, maybe, achieve part time work. That is sad. But I think we have to work with what we are given and accept our limitations. I get that.

Problem is while I have been able to exercise a little bit more I just have not seen a difference in migraine level yet. Not sure how long that is supposed to take. I have a hard time being optimisitic I suppose.

You know what optimism would be? A migraine free day would be optimism. Just one day and I would be optimistic at my chances to succeed in more of that. It would show I could break the pattern. Turn back the pain clock. Re-teach the brain.

Tuesday, August 19, 2014

#Hypomania as an aura in #migraine


"We report a 19-year-old man presenting to the department of Psychiatry for the evaluation of prominent behavioral symptoms associated with episodic headaches, with normal inter-episodic periods. A diagnosis of classic migraine with hypomanic aura was made. Other possible co-morbid or causative illnesses were excluded and preventive therapy with valproate was started due to the prominent affective symptoms as a part of the migranous aura. ...Recent research into the mechanisms of migraine has identified that the cortical hyperexcitability and an imbalance between neuronal inhibition and excitement mediated by gamma-aminobutyric acid and excitatory amino acids respectively may be the underlying mechanism. The high rate of affective disorders in patients with migraine, association of migraine with an aura comprising of mood symptoms and good response to treatment with mood-stabilisers might give newer insights into the pathophysiology of mood disorder as well." (PubMed)

 Hypomania and depression are both mood related aura symptoms that can occur with migraines. It is more common for me to get a depressed mood than hypomania but I have had the hypomania symptoms... I often refer to them as my manic migraines. In this case study the person had these symptoms "He would feel extremely happy. He would be hyperactive, demand money, express grandiosity. This stage would last for 15-20 minutes. Stage II- He would develop severe holo-cranial headache, throbbing in character associated with photophobia, phonophobia, photopsia and fortification figures. Visual symptoms lasted for 15-20 minutes. During this phase he would be extremely destructive, breaking up household articles, be abusive and assaultive towards family members. This phase would last approximately 4-5 hours. Stage III- Immediately after the headache he would sleep off for 1-2 hours. Stage IV- He would be extremely remorseful about his aggressive outburst. He would have full memory about the incidents and would be symptom-free till the next attack." (Neurology India)

Here are some general hypomania symptoms found on PsychCentral:

  • Inflated self-esteem or grandiosity
  • Decreased need for sleep (e.g., feels rested after only 3 hours of sleep)
  • More talkative than usual or pressure to keep talking
  • Flight of ideas or subjective experience that thoughts are racing
  • Distractibility (e.g., attention too easily drawn to unimportant or irrelevant external stimuli)
  • Increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation
  • Excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., the person engages in unrestrained buying sprees, sexual indiscretions, or foolish business investments)

And many of those are what I experience when I have this aura. Which is why it is so noticeable for me in particular since I am very reserved, think before I speak Not chatty person. Sleeping, well, that is not noticeable given my chronic insomnia and really I am usually beyond the aura phase by then. What I notice is this extreme chattiness and Need to fill the air and also apparently very little need to think before I speak. And I will just keep on going and going too. I have racing thoughts. A thousand thoughts a minute it seems. In that aspect I like this aura better than that sense of zombified mind. I can at least still think. I feel like I can think really well in fact. I feel like I am really productive. I get a lot done. I am really jittery though. Can't sit still. Lots of nervous energy.

And you know I can be very thankful to this aura back in the day. When I had to defend my Masters thesis I worried I would get a migraine, have aphasia, be unable to think clearly and just do a horrific job when this group of professors asked me questions. And I did get a migraine. And instead of that I got this hypomania. And even helped with my fear of public speaking even though I was insanely jittery. I was able to think so clearly that I flew through their questions and articulated my thesis clearly.

When it comes down to it with the hypomania symptom I can articulate clearly at least. Instead of aphasia. And that slowly of my thinking. But I have so many thoughts it is like a thousand escape for every one I can keep track of. And while I am very productive, it is like a fantastic illusion... very productive but in extreme pain. People do not see those migraines very well. They just see the excessive chattiness. And frankly, I loath the excessive chattiness since that is so damned out of character for me. And I never quite feel comfortable in my skin. I will say though that I prefer it to the depression aura state which is pretty sudden, deep and dangerous. But I really think that would depend on the person. For me it never has seemed to cause as many problems as the depression. Maybe I bought a few too many books online a few times... things like that, but nothing extreme. But the potential is definitely there for it to cause problems. So looking for preventatives that are specific for this sort of thing is a good idea if this is an issue. I know I had an issue with the depression related migraines. And really I don't like the migraines messing with my mood like that. Fine, then not fine, then fine, then not fine... it is erratic.

It is very rare in me to have this aura though. Enough for me to notice its peculiar nature for sure. Enough to make up a name for it in my list names I have for my migraines.

Monday, August 18, 2014

Long term opiate use and chronic pain #ChronicPain

It is popular these days to be of the opinion that it is dangerous to use opiates foe numerous reasons to treat chronic pain especially in the long term. Partially there is the risk of addiction although clearly not everyone gets addicted. Partially there is some basis that with certain conditions the treatment with opiates can increase pain sensitivity over time. And then with conditions like migraines, specifically, there is always the added issue that treatment with pain killers over and above three times a week could cause rebound headaches and if done too much migraine overuse headaches. So it is a complex set of issues and the stigma around it is pretty intense. I mean, I would be rather insulted if someone were to imply I would get addicted to painkillers automatically.

So this study Pain Patients can have Good Outcomes with Long-Term Opiate Treatments is pretty brave to imply anything against the stigma tide I think. Long-term opioid treatment "can produce positive outcomes in chronic noncancer pain when physicians prescribe it carefully to individuals who have low risks for addiction and overdose, according to the results of a systematic review." (Pain Medicine News)

Essentially the study was a meta-analysis of past studies focusing on quality of life (QOL)

The researchers " performed a meta-analysis of pre–post results on eight randomized controlled trials, eight open-label extension studies from randomized controlled trials and nine observational controlled studies. These 25 studies included 4,719 patients, 3,160 of whom (67%) completed the studies. The analysis focused on these latter patients.
The investigators found that long-term opioid use resulted in significantly improved function, and physical and mental QOL." (Pain Medicine News)

She said that, for publication, the paper will include an uncertainty analysis that takes into account the worst-case scenario of a high dropout rate and the resulting underestimates of complications and overestimates of opioid effectiveness. Dr. Furlan also conceded that the patients in the systematic review represented a minority of typical chronic pain patients, because they did not have risk factors and were monitored carefully.
“It is true that most of these conditions are not followed in real-life opioid prescribing. [In clinical practice] I see a lot of careless prescribing, which can be characterized as ‘high-risk patients’ and/or ‘high-risk prescriptions.’ When you mix both, it is dangerous,” Dr. Furlan said in an interview with Pain Medicine News. “But when physicians and their teams take the time to carefully screen patients, keep them on as low a dose as possible and monitor them very regularly, our results show that the outcomes can be very satisfactory.”(Pain Medicine News)
I think quality of life should be a factor in this equation and it is often something that doctors can miss especially when they are focused on the biases associated with the types of medications available to treat their patients pain. This is not to say there are not medication alternatives for a doctor to consider in every situation. But you have to be quite moronic to believe such things as NSAIDs carry no risks to a patient... in fact, they have quite the death and ER record themselves, but because it is not Addiction we are talking about apparently it is fine. I will tell you I was not too pleased when my doctor at the time ignored my side effects due to NSAIDs because she was reluctant to prescribe anything else, resulting in a bleeding ulcer and so far permanent NSAID drug sensitivity.  And there are more than a few people for various reasons who cannot take NSAIDs due to the risks they have. So a doctor must carefully consider all medications and all risks. And I think when it comes to pain management he or she should be monitoring all medications, side effects and effectiveness in order for that person to have effective treatment.

While I do not believe pain management is all about medication I do believe it has a role. And I am a little tired of the stigma applied to opiates when they also have a role with some patients and their long term chronic pain management. It does patients a real disservice if their doctors do not properly consider all possible treatments, whether for that patient it includes opiates or not. Obviously in some cases it will not. In some causes other medications are better suited. Because, as I said, it is about quality of life. Quality of life can be completely unable to function, a hermit, unable to work and not coping with the pain.... or it can be something better than that. We all want something better than that and I think we deserve that.

Wednesday, August 13, 2014

Thoughts on Suicide

The suicide of Robin Williams really hit me hard. I suspect because I grew up laughing with him. Perhaps because he hid his depression behind a smile and that makes me sad. Someone once asked me why I make so many jokes about my pain. And I said better than crying. We all learn to mask our suffering and some of us choose make people laugh, to smile, to laugh and then people think you can't be in pain right? Or perhaps losing anyone to suicide makes me sad, when no one should have to feel that way in the end. I always feel a pang in my heart every time we lose someone in the community to suicide which happens all too often. I think there are a world of people who knew him personally and will mourn him.

The stigma with suicide though still runs rampant though and while I have seen so many people understand this death and so many others were caused by depression... others feel they can judge those who die in this way. They say they are selfish. That they should have just got help before it got that serious. That they should not have let their families suffer for their pain. I have seen this on twitter and I have seen it on Facebook. I have seen it recently and I have seen it before and I will see it again.

And people think these things because they do not understand depression. And because they do not understand suicide. And they do not even understand the two do not necessarily have to go together.

This is one thing I want people to understand about suicide:

Physical, mental or emotional pain. In my case it was physical pain. 

In my case my suicide attempt was not this spontaneous occurrence.  With profound pain came suicidal ideation that I fought off every time. Bravo me. I survived more times than you can count. Was that then selfless of me or just survival instincts? We want to live. We love people. But there was a war within me and one I was losing.

My existence was torture and it seemed Unreasonable that I should have to exist this way. Irrational that I would choose to exist in that pain, and in fact choose to make it worse. Why would any sane person do that? And all avenues I had tried to reduce that pain had been used up. Society, my employer and my doctor at the time were all by their lack of caring and disinterest stating they wanted me to suffer. So this was my existence. Forever. And forever is a long time when you are in pain. A very long time. You see how endless and indefinite it is. If you just knew how long it was you had to go on. You begin to think how nice it would be to have a fatal stroke because... that would not be your fault. Then you imagine if you could kill yourself but make it look like an accident then no one would have to suffer with the knowledge that you had killed yourself. Clearly, I knew I was suicidal but these were Bad Days with Bad Thoughts. And my bad pain days were usually status migraine stretches, so I just had to wait them out... until I could get back to normal pain days. Normal hell. Then my work place would give me these ultimatums. If you do not work every day... we will do something unpleasant. And that would cause more pain, more stress, more suffering. Until that last ultimatum in that last status migraine...

Do not ever tell me someone is selfish when they are suicidal until you have been in that mental space. Until you have gone down that slippery slope of thinking and reached that line... and crossed it. You have no idea what goes on in that space. No clue. We do think of the consequences of our actions. It is just that first, we understand that grief will end and our suffering has no end unless we make it end. That is the first misconception our brain convinces us of. Well with physical pain we are very aware there literally is no end. But pain has a way of consuming your capacity to see reason as well, but that is another rant. (I will just say extreme pain warps reality as well) Second, that our families will be better off without us. We are a burden after all. We are holding them back. Imagine how much different and better their lives will be if we removed ourselves? Of course they would not Want that... but if we did it for them, it would in fact be better after they grieved for us. I myself was sure of this. I also knew my insurance company covered suicide so I knew financially some of my expenses would be covered... an added bonus really. Frankly, I assumed my existence was really rather worthless. Just this endless mass of pain that has no real meaning and worth. Except essentially to torment me... and That seemed like the ultimate madness really. You can rationalize suicide. You can slide down that slippery slope until you have essentially made it make Perfect Sense. I even explained it to a therapist after the fact and she could not even argue against me... as in she could not explain to me how my reasoning was not rational. She should have been able to because there should be flaws in the reasoning but we can really have quite an in-depth rational going on. 

And so, no point arguing is there? There are finding reasons to live I find. Finding ways to live. Finding what you need to change and figuring out how to do it. Living until living works for you. Seeing a psychologist is something I chose to do to help with pain management because pain management is what I was severely lacking in. And it was damned hard. I was traumatized by the suicide attempt. I think sometimes people think an attempt is just a cry for attention but in fact it is just... didn't get it right for whatever reason. In my case poor timing on my part. I know I could have had good timing and not be here right now because I had done the rest of it quite well. But I will say... it should be taken very seriously and the cause taken very seriously and the treatment taken very seriously. In my case it wasn't really. The pain wasn't treated. The work situation remained. And I became depressed from it. But after that... when I shook free from that I was motivated to change my doctor, see the psychologist, start managing my pain in new ways and took a long leave from work. I suspect I might not be here if I had not made those changes. Pain like that when not treated can really consume a person.

In the end when you survive a suicide attempt you are always at risk for another attempt. There is less of a chance of survival with a second attempt. We have to make that choice to understand the future does not mean endless suffering. The future can bring with it positive changes if we look for the right solutions and get the right sort of help that we need. It is not always easy to find and it is not always an easy solution... sometimes it is a damn hard fight, a constant endless battle to manage our suffering... but better than it would be with no help at all. With no hope at all.

We need to talk about this. We need to reduce the stigma of mental illness. And reduce the stigma of suicide. Check out: Stop calling suicide victims 'selfish'

Tuesday, August 12, 2014

Can you see? Poem

I don't think I will be sharing any poetry and images with my poetry on my Facebook page in the near future, so this was the last image I had made. It was just that recently someone had taken the words I had used and put them on their own image, which happens. But then I thought what if they did that with a poem I had created and claimed that as their own? The thought makes me feel icky inside. Took a lot of courage to share any of my poetry publicly to be honest. I have a low self-esteem when it comes to my writing and sort of generally do not share it. So the thought disturbed me, but it is the internet and no way to prevent that sort of thing. I think therefore if I create something I want to share I might just reserve it for my blog as I feel it is a bit safer here.

Can you see?

Can you see me?
All of me?
Screaming in there?
Hidden in there?
All of me?
Smiling for you?
Dancing for you?
Can you see me?
Struggling inside?
Dying inside?

Can you see me?
All of me?

 I worked up the image on this one as well. I needed a silhouette or shadow image and could not find a free to use one that worked out right. Easy enough to make one though. In this case, using my own profile.

The poem itself was is a piece I wrote specifically for the Migraine Misfits Facebook page. I got inspiration from the first few lines and it formed from there. It is meant to be a reflection of the pain of invisible disabilities. I don't think this is my best piece really but it does work for the purpose it was intended for sure.

Friday, August 8, 2014

placebo effect

A lot of people are disturbed by the placebo effect because they believe that it undermines what actual medications are doing. Just believe more and your medication will work! Well, medications do have an effect. They do have to perform better than a placebo. Let's not get carried away with the concept. However, what the placebo effect does show us is that beliefs do have an affect, positively and negatively, on the body. And that is an amazing thing. It is literally proof of mind over matter. If you want proof that meditation will do Something that there is it. However, I am not sure that there had ever been a sustained study on placebo effect. That is to say, I am not sure it would have a lasting effect. But the effect is there. Our beliefs and moods do have an effect on us physically. And that is a lesson I think is good to remember. And maybe it does make a difference psychologically speaking that they always make sleeping pills blue. I don't know. There always is a psychological factor to how we perceive things like that... that is why they do them that way.