Laughter is the best medicine I have

Humor, laughter and smiling one of the greatest weapons of the chronically ill.

Smile on: The mighty power of the smile is held in the fact that when you smile your brain thinks hey there must be a reason for that smile and so I should be happy..."Facial feedback works because the brain senses the flexion of certain facial muscles (like the zygomatic major, which is required to smile) and interprets it as “Oh I must be happy about something.” Similarly, if that muscle isn’t flexed then your brain thinks, “Oh, I must not be happy”. In addition to the direct neural feedback, in the real world you also get the added advantage of social feedback. Smiles are infectious (perhaps another post on mirror neurons in the future). So even if you don’t feel much happier, the people around you are more likely to smile, and that can improve your mood as well." (Psychology today) And released endorphins even when the smile is forced. I never knew this but I knew that I could not go to work with a upside down smile. No one likes a debbie downer, man. Bad for business. So I'd fake a smile, until I could really fake a smile, until the smile was real, or really faked. It does improve your mood. You want to be around happy people, you want to keep your mood up, you want to avoid negative people. Smiling is that first step. Goes a long way.

Humor: "In one review on humor in medicine, the most promising results with the use of humor is patients’ response to pain. In studies that evaluated patients’ pain after their exposure to comedy videotapes, the videos improved pain tolerance and reduced the need for pain medications. Similarly, patients’ exposure to humorous videos increased salivary IgA levels, a measure of immune function. Humor may also have positive effects on heart disease, diabetes, blood flow, and depressive symptoms."The Network

Those of us with chronic illnesses we have our chronic illness humor don't we? And I love all that. We should be able to joke about the nuances of our illness... it relieves some of that tension. I love them. Love to share them. Helps us relate to each other else as well. All humor is important in our lives. But 'sick' humor has a place as well. It is not all doom and gloom... and a billion inspiration quotes. I joke about my illness all the time. It makes it less stressful to me and to my spouse. Makes it easier on others. But sick humor amongst ourselves are the things we get and can laugh about because we all 'get it'.

Laughter:    Laughter itself is to be encouraged at all times. I have used humor as a coping mechanism and a facade in the workplace. I liked to make others laugh and smile so I could laugh and smile. By joking around I could boost my mood and mask my pain better as well. I like also to seek hour humor. I enjoy laughing. I enjoy being goofy. I enjoy watching shows that will make me laugh. Books that will make me laugh. People that will make me laugh. I always say it is a mood enhancer. If you don't focus on the pain and use laughter it gives the brain the happy drugs it wants which boosts the mood, despite the pain. So I seek it out and create it when I can. This is only possible in the mid-range of my pain. The higher ranges I have more problems, but with my spouse I will still have our little jokes.

Stress relief from laughter

A good sense of humor can't cure all ailments, but data are mounting about the positive things laughter can do.
Short-term benefits
A good laugh has great short-term effects. When you start to laugh, it doesn't just lighten your load mentally, it actually induces physical changes in your body. Laughter can:
  • Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.
  • Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response and increases your heart rate and blood pressure. The result? A good, relaxed feeling.
  • Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which help reduce some of the physical symptoms of stress.
Long-term effects
Laughter isn't just a quick pick-me-up, though. It's also good for you over the long haul. Laughter may:
  • Improve your immune system. Negative thoughts manifest into chemical reactions that can affect your body by bringing more stress into your system and decreasing your immunity. In contrast, positive thoughts actually release neuropeptides that help fight stress and potentially more-serious illnesses.
  • Relieve pain. Laughter may ease pain by causing the body to produce its own natural painkillers. Laughter may also break the pain-spasm cycle common to some muscle disorders.
  • Increase personal satisfaction. Laughter can also make it easier to cope with difficult situations. It also helps you connect with other people.
  • Improve your mood. Many people experience depression, sometimes due to chronic illnesses. Laughter can help lessen your depression and anxiety and make you feel happier.

Productive day? Lame or not lame? Hard to know sometimes.

I woke up very late today. Just one of those days where my brain just really wanted to catch up on the whole sleep deprivation deal. I don't like it because it feels like you have then wasted the entire day. Yet at the same time I wake up feeling like I got sleep and without a migraine. So there is that.

Waking up feeling rested yet also like you wasted the day means I wanted fill time with something productive. I got myself into an organizational mood and re-organized the books in my library. This was very time consuming as I have a crapload of books stuffed onto five bookcases. It was essentially a task of Tetris book style... getting all the harcovers, in genre, onto separate shelves instead of messing up symmetry being mixed with other. Then this artform of double-layering on tall shelves, so you can see all the books and utilize all the space. But some shelves are double-layered on short shelves, so you cannot see the layer in the back. And some are triple layered, they are double-layered upward and then have a double-layer forward, so that back layer you basically never see. But I got it so most of them are double-layered upward with the most amount of visibility. And an overflowing box to give to charity.

I began to get a slow forming migraine and vertigo. The vertigo came on just from the moving around. Like it has been every single day. The more I move the faster that comes on. However, I also needed to clean the litter boxes. I did so, then swept around them. Then scrubbed the floor and walls around one cat's litter box. And that did me in. Because scrubbing is one thing that is just a bit much for fibromyalgia for some reason. The crouching down for any amount of time actually hurts like hell and that lingered. But scrubbing is painful but also causes this immediate insane muscle fatigue. Your arms just have no real strength with FM. You notice it when you lift things. You have the capacity to lift them, but not hold them... you begin to tremble right away. So you sort of learn to hold things in a way that forces you to retain a grip, so it is just the pain and no risk of suddenly dropping it. But with activities that require force and repetition... like circular motion for cleaning. It is like the energy is leached right out of you. So you have to keep switching hands. I know I have certainly learned to clean... or paint... or whatever with both hands. Even more so with the nerve pain on the right side, which can cause more pain and weakness.

Anyway, I cleaned this small area and felt victorious. But was also shaking from the effort. My hands were trembling for a good hour. The pain still lingers. But the pain in my knees and ankles is actually worse. Although we shall see who wins that competition tomorrow.

I also kickstarted the migraine into acute mode as well. Plus the vertigo laid me out for hours after that little venture. In this case exercise (does that count as exercise?) wasn't a trigger because I was pre-migraine already, but it sure as hell launched me into it and made the throbbing pain very, very intense.

I'm not entirely sure if I should feel very lame at the very short day and the little amount I accomplished with the rather intense consequences or if I should feel pleased I got two tiny things done on my list before the migraine exploded. Because it is hard to get anything accomplished with this vertigo issue. I have to move a lot slower. Once it kicks in I have to take extended breaks or it will just get substantially worse. So I had to spread these activities through the day. I mean, damn, I have to go down Stairs to clean the litter boxes. Don't exactly want to do that if the vertigo is severe. So I had to wait some time after doing the bookcases to even do That. Then take another break before sweeping around them. Then another before doing the scrubbing. So I should say Bravo that I managed to walk without falling and doing anything! The amount of pain that FM causes while doing these sorts of things... well that is all the name of the game. I can do more housework than light maintenance when off work, but slowly, and it is painful and only one thing a day. Just got to pace it out... in the migraine gap. But if I go to far, then the next day, have to do very little because I'll hurt like hell.

Sort of funny though. I'll push myself on that FM level because I am so used to facing the pain consequences of it. Used to the type of pain. Used to the fact that I just have to endure that pain. It sucks and the pain level increase after you do something is not fun. It will make it hard to sleep for sure. But I just deal with it. But I have to be careful of not doing too much too many times in a row or that pain really gets up there. But when a migraine hits with all its symptoms and higher more acute pain level you just lose your ability to think, moving makes it hurt more so cleaning, or other housework is not an option and your balance gets out of whack and the vertigo gets worse. So everything I do is done in that part of the day without a migraine... my wee migraine gap, if there is one.

Anyway the bookshelves look awesome. And Charlie's litterbox area is pristine... for a few days anyway.
Maybe he will keep some of the litter IN the box now. lol

I still cannot tolerate #NSAIDs

Every once in a while I test whether I can tolerate NSAIDs by taking an OTC pill. I actually threw out all of them the last time because it is not a fun experiment. But if you follow the theory that NSAIDs caused ulcers... somewhere that caused the pain, diarrhea and bleeding to occur... and you were then treated for said ulcers for some time, then one would imagine that you would have the capacity to take NSAIDs again. Especially an OTC one and not the prescription strength ones that caused the damage in the first place. For me the damage occurred, must have been seven years ago now? Plenty of time for recovery there one would think.

I assumed the long term adverse reactions I was getting had something to do with what caused the adverse reaction in the first place. The fact I had IBS to begin with and it was worse after. So I was now overtly sensitive to them. But I don't see why I would be if there is no actual damage there. But it is in fact the case that I get a boatload of pain, cramps and diarrhea from just OTC NSAIDs now.

I bought some Motrin for my spouse. He has arthritis in his big toes, which does not sound bad except you use your big toe a lot, and it moves a lot. Plus it is bad arthritis and he had surgery on one already. The cream he uses just does not last through the day. But naproxen seem to upset his stomach so I thought we would go with Mortin as I had heart Ibuprofen was the best for those side effects. And being as the pills are in the house, and I had a wicked acute migraine on a non-triptan day, I though why not take just one? Once again, not a pleasant experiment. And always surprised at the amount of pain one pill can cause. And so not something that stops quickly either. Really regret that now. Yet, sort of a good thing to try because doctors Always want to put you on NSAIDs and I say I cannot take them. And it is good to say, really, really still cannot tolerate them in the Least bit. At all. Would be very dangerous I expect to have any high dose of that medication class. At least initially the GI bleeding I had was lower GI track somewhere and was rather obvious... if it were somewhere internal, that may be less obvious. People die from that. NSAIDs cause a lot of ER visits and deaths... and as a fun alternative to opiates doctors seem rather oblivious to the stats.

What I don't know is why the adverse reaction persists. My doctor is 'looking into' the good old digestive system with a bunch of tests so maybe they will figure that out along the way. Maybe the NSAIDs caused more damage than the initial bleeding ulcers. Or maybe it is just a 'sensitivity' now. It is hard to find any information on persisting sensitivity to NSAIDs to know what exactly happened.

I did find this "The distal small bowel and colon are susceptible to the deleterious effects of nonsteroidal anti-inflammatory drugs (NSAIDs) [1-5]. The ileocecal region is a potential site for a variety of NSAID-induced injuries including erosions, ulcers, strictures, perforation, and the formation of diaphragms, which can lead to bowel obstruction [4-7]. NSAIDs can also lead to colitis resembling inflammatory bowel disease (IBD), exacerbate preexisting IBD, or complicate diverticular disease (ie, perforation or bleeding) [8,9]. The elderly and those on long-term NSAID therapy appeared to be at highest risk [9]. There may also be an association between NSAID use and collagenous colitis." Uptodate

And other references to studies of erosion to the small intestines even after short term use... which would have been the case for me. I was taken off tripans, for adverse reactions, and put on toradol and then Arthrotec... but we are looking at months and not every day because due to the side effects I had to use them less and less just to work.

And I also found this:

Genetically based impairment in CYP2C8- and CYP2C9-dependent NSAID metabolism as a risk factor for gastrointestinal bleeding: is a combination of pharmacogenomics and metabolomics required to improve personalized medicine?

Polymorphisms in CYP2C8 and CYP2C9 are common in all the human populations and many CYP2C8 and CYP2C9 gene variations cause decreased enzyme activity towards the NSAIDs aceclofenac, celecoxib, diclofenac, ibuprofen, indomethazine, lornoxicam, meloxicam, naproxen, piroxicam, tenoxicam and valdecoxib. This impairment in drug biodisposition alters drug pharmacokinetics, with carriers of detrimental mutations displaying increased values of AUC and decreased drug clearance. Individuals carrying the gene variants CYP2C8*3 (rs11572080; rs10509681), CYP2C9*2 (rs1799853) or CYP2C9*3 (rs1057910) show increased risk of developing acute gastrointestinal bleeding during the use of NSAID that are CYP2C8 or CYP2C9 substrates. However, it is not known whether parent drugs or products of alternative metabolic pathways are responsible for bleeding. We present an overview of the current knowledge of relevant polymorphisms of CYP2C8 and CYP2C9 genes, their association with NSAID metabolism and pharmacokinetics and a meta-analysis that confirms the clinical significance of these gene variations with regard to gastrointestinal bleeding. Pubmed

Which is interesting because a forum has mentioned in regards to GI bleeding... and then worse GI symptoms after and intolerance to NSAIDs after as well. But as to whether those people had this genetic impairment I do not know, only that they shared my problem... and that at least suggests other people have worsening GI symptoms and long term intolerance to NSAIDs after a bleeding ulcer incident with NSAIDs. And perhaps this is a common phenomena with people who had existing problems with their digestive system prior to being put on stronger doses of NSAIDs or perhaps it is a problem with how we respond to them.

What I do know for a fact is that NSAIDs can cause other problems that those initial ulcer bleeds so my previous doctor ignoring my concerns about A) it being weird that I still could not tolerate them; he kept me on the ulcer med for a long term instead even though it did nothing and B) that my IBS was worse. I think a good doctor would look into other possible harm this medication could have done. I think with my IBS being as it is that one could develop a hypersensitive reaction to a drug that causes symptoms much like a flare up but with more pain in there and simply be unable to take it anymore. Entirely possible. However, the harm NSAIDs can do, a doctor really ought to rule out all of the damage it could have caused.

In that sense I should be rather thankful for my current doctor and her thoroughness to rule out other conditions for my IBS. In all likelihood it is just IBS, so she is just being a good doctor. And they are damn hard to find.

Anyway I swear that is the last experiment I am doing. Enough time has passed. If it is still causing that much of an extreme reaction from one pill of the gentlest one of the bunch then screw it.

Migraine treatment guidelines and treatment recomendations

The American Headache Society (AHS) released a list of commonly treatments or tests for migraine and headache that are not always needed. The list comes about as part of the Choosing Wisely® initiative of the ABIM Foundation. It aims to target five areas, supported by evidence with an effort to support conversations between doctors and patients about what is really needed or necessary. This will be published in Nov-Dec 2013 journal of Headache.

American Headache Society Releases List of Commonly Used Tests and Treatments to Question
“All of us on the front lines of medicine know we have the opportunity to improve the care we deliver by engaging our patients in conversations about what care is really necessary and beneficial to their health. The recommendations in migraine and headache treatment released today provide valuable information to help patients and physicians start important conversations about treatment options and make wise choices,” said Elizabeth Loder, MD, MPH, President of the American Headache Society. Dr. Loder is Chief of the Division of Headache and Pain in the Department of Neurology at the Brigham and Women’s Hospital in Boston.
AHS’s list identified the following five recommendations:
• Don’t perform neuroimaging studies in patients with stable headaches that meet criteria for migraine
• Don’t perform computed tomography (CT) imaging for headache when magnetic resonance imaging (MRI) is available, except in emergency settings
• Don’t recommend surgical deactivation of migraine trigger points outside of a clinical trial
• Don’t prescribe opioid or butalbital-containing medications as first-line treatment for recurrent headache disorders
• Don’t recommend prolonged or frequent use of over-the-counter (OTC) pain medications for headache

 This Neurology Now article gets right into the treatments that have been looked into and recommended for migraines... Heading Off Migraine: What's the evidence for non-pharmaceutical approaches? and is well worth reading if you are looking for some ideas.

I know we often think...

But it is always about more than the medication when it comes to chronic migraines...

In a new guideline on migraine prevention issued in April, the American Academy of Neurology (AAN) reported that the following prescription medications have been shown to be effective for preventing migraine by a high level of evidence: the antiepileptic drugs divalproex sodium (Depakote), sodium valproate (Epilim), and topiramate (Topamax); the beta-blockers metoprolol (Lopressor, Toprol), propranolol (Inderal), and timolol (Istalol); and the triptan frovatriptan (Frova). (See “New Migraine Guidelines from the American Academy of Neurology,” page 15, for more on the levels of evidence supporting these therapies, and go to to access the full guidelines.)

Drugs that have been shown probably to be effective in preventing migraine according to the new guideline include the antidepressants amitriptyline (Elavil) and venlafaxine (Effexor), the beta-blockers atenolol (Senormin, Tenormin) and nadolol (Corgard), and the triptans naratriptan (Amerge) and zolmitriptan (Zomig).

On the other hand, strong evidence suggests that the antiepileptic drug lamotrigine (Lamictal) is not effective in preventing migraine, the new guideline states.
 So there are the go to medications. Or not go to medication for Lamictal I guess. There are two that I have not tried, and can try... so gives me some suggestions anyway. I bet they both cause weight gain and zombie brain.

Biofeedback vs Acupuncture

“Biofeedback helps someone achieve a calm inner state, diminishing the excitation of nerve cells,” explains Dr. Klein. “People can try to achieve this with meditation as well, but biofeedback offers input so that they know if they are doing it correctly.”
Biofeedback equipment allows people to monitor their automatic bodily responses, especially reactions to stress. The idea is that once the patient learns to monitor these responses, he or she can modify them, changing skin temperature and heart rate, for example.
Two kinds of biofeedback are commonly used to combat migraine: skin temperature biofeedback, which teaches people to warm their hands; and electromyogram (EMG) biofeedback, which teaches people to relax their muscles.
Why would these therapies help with migraines? The idea is that during migraines, blood flow increases to certain areas in the head and decreases in the extremities, such as the hands. Modifying a response such as the temperature of the hands might increase blood flow back to that area, reducing the pressure of blood flow to stressed or overexcited areas in the head. It might also have an overall calming effect on the central nervous system.
“A substantial body of evidence shows that biofeedback improves migraine, and the difference is almost as great as what you see with some prescription drugs,” says Dr. Lipton.

Metzger recently started seeing an acupuncturist at the recommendation of a friend, who claims the same acupuncturist rid her of the migraines that had become unbearable since the birth of her second son.
But research findings are less than conclusive.
In two large studies of acupuncture as a preventive treatment for migraine, migraineurs who were assigned to receive “real” acupuncture, in which the needles were inserted along the meridians (key acupuncture regions according to traditional Chinese medicine), did in fact see a reduction in the frequency of their headaches. But so did patients who received “sham” acupuncture—that is, needles inserted at random sites rather than along the meridians.
“One possible conclusion we could draw from these trials is that acupuncture doesn't work,” says Dr. Lipton. “That's the conventional view: that these are failed studies. Another possibility is that placing the acupuncture needles just about anywhere is an effective treatment for migraine, not just along the meridians.”
Dr. Lipton doesn't suggest that his patients try acupuncture, but he is happy to refer if a patient asks. “My clinical experience is that a lot of patients do better when they get acupuncture,” he says.

And the vitamins and supplements? How do they fair in the recommendations?

Of them all... "BUTTERBUR EXTRACT According to the new AAN guideline, the only supplement shown to be effective in preventing migraine by a high level of evidence is extract of the root of the butterbur plant. However, caution needs to be employed when taking butterbur, according to Dr. Lipton. “The root has some toxic chemicals in it, so if the extraction is done incorrectly, it's not completely safe,” he says. Dr. Lipton recommends a German brand such as Weber & Weber because Germany regulates supplements more strictly than does the United States." (neurologynow)

Alternative supplements mentioned for possible helpfulness were B2 (riboflavin), magnesium, feverfew and coenzyme Q10.


Epilepsy and migraine comorbidity

Epilepsy and migraine comorbidity in this case means people with epilepsy can be more likely to have migraines, not people with migraines are more likely to have epilepsy. Certain conditions often come with these comorbid links... other conditions more likely to occur with them but not linked to them necessarily. And studies in the past have suggested with epilepsy migraines are a comorbid condition.  One would think there would be some sort of genetic link there somewhere considering the nature of the conditions, but this study specifically looked at the possibility of a shared genetic susceptibility to epilepsy and migraine.


New research reveals a shared genetic susceptibility to epilepsy and migraine. Findings published in Epilepsia, a journal of the International League Against Epilepsy (ILAE), indicate that having a strong family history of seizure disorders increases the chance of having migraine with aura (MA).
Medical evidence has established that migraine and epilepsy often co-occur in patients; this co-occurrence is called "comorbidity." Previous studies have found that people with epilepsy are substantially more likely than the general population to have migraine headache. However, it is not clear whether that comorbidity results from a shared genetic cause.
"Epilepsy and migraine are each individually influenced by genetic factors," explains lead author Dr. Melodie Winawer from Columbia University Medical Center in New York. "Our study is the first to confirm a shared genetic susceptibility to epilepsy and migraine in a large population of patients with common forms of epilepsy."
For the present study, Dr. Winawer and colleagues analyzed data collected from participants in the Epilepsy Phenome/Genome Project (EPGP)—a genetic study of epilepsy patients and families from 27 clinical centers in the U.S., Canada, Argentina, Australia, and New Zealand. The study examined one aspect of EPGP: sibling and parent-child pairs with focal epilepsy or generalized epilepsy of unknown cause. Most people with epilepsy have no family members affected with epilepsy. EPGP was designed to look at those rare families with more than one individual with epilepsy, in order to increase the chance of finding genetic causes of epilepsy.
Analysis of 730 participants with epilepsy from 501 families demonstrated that the prevalence of MA—when additional symptoms, such as blind spots or flashing lights, occur prior to the headache pain— was substantially increased when there were several individuals in the family with seizure disorders. EPGP study participants with epilepsy who had three or more additional close relatives with a seizure disorder were more than twice as likely to experience MA than patients from families with fewer individuals with seizures. In other words, the stronger the genetic effect on epilepsy in the family, the higher the rates of MA. This result provides evidence that a gene or genes exist that cause both epilepsy and migraine.
Identification of genetic contributions to the comorbidity of epilepsy with other disorders, like migraine, has implications for epilepsy patients. Prior research has shown that coexisting conditions impact the quality of life, treatment success, and mortality of epilepsy patients, with some experts suggesting that these comorbidities may have a greater impact on patients than the seizures themselves. In fact, comorbid conditions are emphasized in the National Institutes of Health Epilepsy Research Benchmarks and in a recent report on epilepsy from the Institute of Medicine.
"Our study demonstrates a strong genetic basis for migraine and epilepsy, because the rate of migraine is increased only in people who have close (rather than distant) relatives with epilepsy and only when three or more family members are affected," concludes Dr. Winawer. "Further investigation of the genetics of groups of comorbid disorders and epilepsy will help to improve the diagnosis and treatment of these comorbidities, and enhance the quality of life for those with epilepsy."
This study is published in Epilepsia. Media wishing to receive a PDF of this article may contact
Full citation: "Evidence for a Shared Genetic Susceptibility to Migraine and Epilepsy." Melodie R. Winawer, Robert Connors and the EPGP Investigators. Epilepsia; Published Online: January 7, 2013 (DOI: 10.1111/epi.12072).
URL upon publication: The state of chronic migraines The state of chronic migraines 
"So people suffering from chronic migraine have more headache days than not. It is estimated that between two and three million Americans live with chronic migraine. But what is the real impact on their daily lives?
The Chronic Migraine in America study was conducted to find some answers. The survey was open for 30 days and includes the input of more than 1500 chronic migraine sufferers. Participants were required to be American citizens aged 18 or over, and meet the criteria for chronic migraine. What exactly did they have to share?"

It is great to see a study on chronic migraines specifically. I was intrigued to see the details on this.

Obviously these symptoms are not restricted to chronic migraines, but it is good to think about. You have 15 to daily migraines in a month... and it is not just the pain you are contending with here. It is this mix of neurological symptoms... and other symptoms such as digestive or nausea or vomiting. Just think of that. Every second day, or more, your brain goes nuts, with pain, and random chaos. Light and sound and smell sensitivity to the extreme. Cognitive issues. Maybe visual auras or numbness and tingling. Mood changes. Vertigo.

This is the battle with chronic migraines. Once you hit this chronic phase it is a battle to get 'less'. Preventatives to decrease frequency or intensity. We try just about anything to squeeze in a day or two less. Because a decrease of any amount means a lot. And we are aware any decrease is a battle and medications only do so much and will only get you so far, if you find them and if they continue to work. Sometimes we have a steady increase in frequency and have never seen an improvement. Sometimes there have been years where we have seen a slight reduction but it did not last. Sometimes we have found things, or a combo of things, that have reduced our frequency or intensity. Personally I see a lot of hope in those success stories because I know it is possible I just need to get that right routine or that right balance or that right combo for my brain. What is clear here is that chronic migraines are complex and difficult to treat but not impossible to see improvement.

I get that. Nothing is really better than laying down in a dark room. When you can. If you can.
Just not always an option.

Everything. Anything. A bit of anything and everything.

Some triggers as you might imagine we can mange and control. Some are just there in life. Like environmental triggers, light, fragrances, hormones and such. Lack of sleep is a brutal one. You would like to think it is one you can manage but chronic migraines make it rather difficult... with all that fluctuating neurotransmitters, migraines at night causing so much pain the pillow itself hurts against your head and you cannot get any sleep causing the migraine to persist into the next day... not as easy as people think.

Chronic migraines are a beast of a condition. They are migraines and they perpetuate themselves and they complicate themselves. And they do not respond well to treatment. Nor can the person actual treat the existing ones very well due to the fact the more frequent they are the less they can treat them... don't want to cause rebound headaches, or imply slightly that you are overusing medication. No less is more they say. More pain they mean. So more suffering. So more ways to try and manage that suffering. Yes, complex indeed to try and manage that and somehow have a life. Tricky, tricky.

Just some ideas on how to relax

I think this guy is a genius. I see a psychologist who specialists in pain management to help me with all that lack of pain management. It is all about relaxation techniques, meditation, biofeedback... blah, blah, blah. There is a fundamental flaw in all of this and that my failure to grasp the three steps outlined above.

Fundamentally along the way with chronic pain we figure out to mask the pain and to push through the pain... all in the aim to function on some level. Often a crappy un-fun level, but what counts is that we do things. And doing things is what is important to people. Other people mostly. Other people who do not have a pain problem. You suck other people. Anyway, we get this mental line. We have Intolerable Pain and Tolerable Pain. Functional Pain and Non-Functional Pain.

That just seems like a chronic pain fact of life. The chronic pain life-style. Obviously one that does not work well when the pain exceeds our coping but for the most part it just is the way it is.

So we have that learned behavior of masking pain plus trying to function through it. Then we have the compounding issue of every time the pain is intolerable or we are non-functional we can be plagued with guilt for not being able to do all those things that the peoples want us to do. Guilt can be a rather large compounding factor, even if it is just so wrong that we plague ourselves with guilt over an illness that is not something we can control. The final compounding factor is that people tell us we should actually be able to control it and we really are to blame when we cannot.

Well what does any of that have to do with anything? It means for me that being 'productive' seems to have a lot of extra 'meaning' attached to it. It isn't how much pain am I in today, it is how much was I able to do, even though I was in pain. How much of the day did I 'lose' to pain. Such that even though I am told to do all these helpful techniques that might help manage my pain... it feels wasteful to me. So wasteful to meditate for a half-hour when I could be slowly doing some housecleaning which likely will trigger a migraine earlier, compound the one I have and definitely cause other pain... but productive. Then, oops, caused a massive migraine and there goes the rest of the day and I didn't fit in that meditation or relaxation I was supposed to do. Damn it. I feel in some way that using the small gap of the day I have without a migraine doing non-productive things is wasteful and I should feel guilty about that. Yet other people are permitted downtime and relaxation free of guilt. I won't even let myself do things that could improve my existence because I have conditioned myself to 'get things done' in pain and to feel bad about it when I don't, so I need to fill all that low pain time with as much as I am capable of. So while we are conditioned to feel guilty about what we cannot do, we are at the same time told we should be able to control our illness to an amazing degree, but without actually spending any time on it apparently... because we have to be as functional as everybody else.

That is a conflicting message people. So. 1) Do stuff 2) Stop it 3) Lie down. Concise simple rules to relax. How you relax is up to you. The stuff you do is up to you. And maybe you prefer to sit rather than lie down. But every day give yourself the downtime to do these simple steps for you and your health. If you are anything like me stop this silly notion that you must fill every moment of every day, that would be the functioning moments, with 'productive' and 'worthy' activities. Just stop and absorb the silence for a moment (or if you are also like me and have tinnitus, you might want to stop and just listen to some mellow music. No one likes the sound of high pitched ringing. Not relaxing.) I don't care if you give yourself 10 minutes or half an hour. But you deserve to give yourself a little peace each day. I know the studies on meditation are pretty awesome so it could be quite beneficial for us to give ourselves this time to engage in meditation, relaxation techniques of some sort or biofeedback.

Also screw guilt. I hate guilt. I hate the people that imply we should feel it. I hate that I think I should feel it. It is so fundamentally useless.

Also screw people that suggest we are in any way to blame for our illness or lack of spontaneous full recovery. They don't know our path or lives or the complexity to the illness we have. Now most people are not in this category. They are very sympathetic and mention things they have heard without knowing you have tried them... they just want to help and understand. I'm not talking about normal people who might not understand people who have a chronic illness, or do but don't have your specific illness, and just honestly don't know what to say, want to relate in some way or want to recommend something helpful. I mean screw the people who have the audacity to suggest it is literally our lifestyle that is to blame for our illness and that we literally are failing to cure ourselves by our lack of effort. There may be some things that can improve our health and we seek them out, we do a vast amount of seeking them out, doing and trying and seeking. So there is no lack of effort. Sometimes lack of hope. Sometimes we are discouraged. We are aware there is no cure for sure. But we certainly do a great deal, so definitely do not listen to such judgmental attitudes...

and one thing we can do for ourselves is 1) Do stuff 2) Stop it 3) Lie down.

Did the barium test on the stomach and upper GI system today... walk it off, walk it off

For those of you that have never done the barium x-ray series on the stomach and upper GI tract it is unpleasant. What makes it unpleasant is the barium itself, a white, radio-opaque powder, used to light up the digestive system to show up on the x-rays. I have had the stomach one twice in the past. I believe they were looking for ulcers... which i found odd at the time because the symptoms I had would suggest the ulcers I had gotten from NSAIDs, or damage from them, was in the large intestines but whatever. I suppose they wanted to rule it out. Point is I have had experience with the first part of the test... the stomach version, which is shorter.

Now, barium shakes taste like chalk. I have never eaten chalk before but that has to be what it tastes like. Like a thick paste. It is revolting. That is the first aspect of this test that is a problem. The stuff is nasty.

When I had first taken the barium stomach test it actually was worse than it is now. I had been put on a tilt table that kept moving and rotating to keep getting the right angle on my stomach for images. I had to drink a huge glass off the thick barium shake. I believe because back then they did not have other ways to help with coverage. Or that specific time they had a specific purpose for that method. So more was better. But when you have issues with nausea more is not better when being moved around on a table. I really felt sick and actually saw my stomach move like a fist clenching as I tried not to throw up. But that was then. Now they have you change positions a few times, but no rotating table. And they make you eat... pop rocks? I don't know what they are but they are basically fizz machines that create gas. So you eat them, swallow the barium and down the hatch it goes. Stomach expands, barium coats. Then you take another couple big gulps of the goo and you are good to go. Not nearly as bad as it used to be back in the day.

It would not have been a big deal if it had ended there. Some discomfort but not an issue.

The upper GI tract test is longer. What they wanted to do is time how long it takes for the barium to get from the stomach through the upper digestive tract. They say you have up to two hours for the test. With my digestive system I was estimating far less than that. In this case, you get a thinner barium shake and a massive glass of it. It was disconcerting they wanted me to not only drink all of that, without throwing it up, but not just drink it... chug it. You see, you need to down it fast, to get it going through at around the same pace. So I did. And it was extremely disgusting. I think I really could go on one of those reality TV shows and eat bugs at this point given my amazing control. Then you are instructed to walk about for half an hour so they can take an image.

Here is where the issue starts. Ever down a bottle of water and then go run? Me neither because it causes a cramp. This is more like swallowing a brick and trying to 'walk it off'. You have the thick barium in there, the gas bloating issue which is causing pain and discomfort and too much liquid that is heaving just sitting like a rock in your gut... and told to walk for half an hour. Ooh walk it off, walk it off. Look like an idiot in your hospital gown and robe pacing a track down the halls. One young man eyed me up. I was like seriously? What, are my calves totally sexy in this gown? Or you just giving me the full body check out because I am pacing around in a damned gown and robe. I was less than pleased with his rather obvious look over. So I didn't walk in the more populated areas after that. There was another fellow waiting for a friend and he was walking about as well. He said to me 'Must get tired of pacing the same track.' because at that point I was going up the hall, down the hall, up the hall, down the hall. Made me smile. I replied, 'Just doing my time.' I was actually joking around with a few people in the sitting room... because let's be honest no one likes the barium test and a few were familiar with it. It is really like with IBS eating something that did not agree with you, eating too much of it, but not being able to sit down for it to settle... you really do not feel well at all.

So I go and get the picture taken and turns out that wasn't good. So had to walk some more. Half an hour later, still no good. Half an hour later, Still no good. So at the hour and a half nothing. This is odd for me but then again the barium wasn't agreeing with me at all. So they come out with Another Full glass of that barium and ask me to chug that to 'move things along'. I was like 'oh no, how can I possibly fit this in my stomach and not have it revolt on me.'  I did it but I felt quite a bit worse. However, half an hour later it was finally good. So literally took the longest amount of time for that test. I thought I was never going to get out of there. Also decided I was not going to eat that day as I was really, really full. I did eat of course, but not pleased about it.

Now here is the real ironic part. I think my digestive system was really mocking me. They told me 'drink lots of water for the next few days' because barium can cause constipation. The moment I get into the car my abdomen 'gurgles' and then some more. And I think you know if you have IBS that means one thing. When I got home lets just say I think most of the barium is gone. So went from really slow to hyper speed, but they didn't get the hyper speed part which was the whole damn point of the test. Anyway, I still have abdominal discomfort which tells me I still have some of the stuff in me which likely will cause some problems but I did get rid of a lot of it so there is that. I do think this sort of demonstrates that this is IBS and not something else. Because of these sudden flares, which while frequent, suggest without them there is no other issue there. But that is really the point of doing these tests. Other things were never ruled out, so I have to do all the tests that should have been done years and years ago just to determine it is in fact IBS and not another condition.

My mom gave me a lift to the hospital for the test even though it is a short drive and I had thought maybe I could drive myself. I don't know why I think these things though. I got a massive migraine while there. And that 'walking about' triggered vertigo. This was disappointing to me that the vertigo could be triggered just by me moving around. Towards the end there I was having troubles walking straight and was getting disorientated but I could not stop the walking obviously. That really compounded my misery; having such an acute migraine and then the vertigo kicking in on top of all that abdominal discomfort. It was a pretty horrible feeling in that first half hour to start to feel the floor tilting and knowing just moving around was causing that damned vertigo to kick in... and there was nothing I could do about it. Since it kicked in it stuck around. I could not even stand to cook supper, the floor kept shifting even when I was just still.

Anyway next on the list is some blood work to test for food allergies, including lactose intolerance. Then... a colonoscopy. Joyness. That is that for the digestive tests I hope. I hope then mystery will be solved. I did tell the specialist my doc sent me to that I 'might' have a lactose 'sensitivity' since somewhere in my early twenties my digestive system decided to disagree with milk. So I stopped drinking it and rarely have cereal... and regret having cereal when I do. But I don't know if that makes me lactose intolerant per sa. Guess we shall see.

Sometimes these motivational posters irk me... but there is a little truth in everything

This is so true.

As soon as I stop having migraines every day my life will be changed. The routine is getting so tiresome.

Sometimes these motivational posters irk me.

Yet at the same time the fact is daily routines are important. And the fact is when you have chronic illness daily routines are very important. And the fact is when you are chronically ill daily routines can also be very problematic.

Sleep routines for example are vital and also very problematic for me. Damn you sleep my eternal foe. Sorry. I did not mean that. I love you, sleep, I love you so much i crave you more than I crave chocolate. I mean it. Just because you hate me doesn't mean I will stop loving you. Point is with fibromyalgia I have horrible sleep, even if I try all the best sleep routine advice in the world. And I have. Since I was a kid. And sleeping pills now that I am older and those do not even work like they do for healthy people, who don't even need them, but at least they help enough to get me some restorative sleep. I love you sleeping pills. And I really do mean that. Pain on the other hand has a way of making sleeping pills useless once it gets 'up there'. So pain can really distort my crappy sleep cycle into something that is rather erratic. So half-decent sleep one night to falling asleep well past dawn the next night to waking up after four hours sleep the next night... it is just never the same. So no routine means lack of sleep triggers migraines. Migraines of a certain pain level prevent sleep. And off we go on a horrible merry-go-round. I would love to change this daily (er, nightly) routine and this would definitely help.

But we try our best. Still you have to think about the habits. Habits of thinking or doing things that do or don't work for you. So, yeah, ones that don't work obviously will not help in progress. Habits are habits for a reason though. Hard to notice or hard to break. We all have them. When i was younger and coping with FM I think the worst barrier was my habitual negative thoughts. It was just the way I was. Just sarcastic and the glass is half-empty and rather cynical. It didn't help me when I was suddenly living on my own dealing with pain, stress and fatigue... and wanting to be like everyone else my age. I did not want limitations and moderation. I just wanted to live like everyone else. And when I could not those negative thought patterns bit me in the ass big time. When I dealt with that, sort of broke that record of thinking and let out that inner goofball it really helped me cope with my chronic illness. And then adapt, understand my limits and moderate my lifestyle. Changed my thinking, then changed my behaviors. It did not change the pain. Or the chronic insomnia. Or the fatigue. Or the cognitive issues. Just how I coped.

I think there will be times in our life when this happens. When our thinking is harmful to our coping. When we want more than we are capable of. When my pain exceeded my ability to cope with chronic migraines and working I encountered this again. It does not matter that I have coping strategies that worked great in the past, what mattered was that they failed with the pain level I had and I failed to acknowledge the situation. No one wants to acknowledge they cannot work. That they are at that level of nonfunctioning and that doctors will not help them. Instead I did what many people in my spot would have... I pushed through the pain on this faint hope doctors would grasp my pain and would help me. So I failed to adapt because I failed to acknowledge I could not function or cope with working full time. And now I have to adapt to this idea that I am not working, at least for now. We want to believe we have more control than we actually do. But I still have this hope that I do have this potential control over the pain if I get the right resources. Because with the right strategies, more control over my enviroment and routines maybe it will not be as bad. I just don't know if that will mean I have the capacity to ever work a normal full-time job because I feel that would sort of ruin the effect.

My migraine relate Bitstrip cartoons

I have had a great deal of fun with Bitstrips on Facebook where you can make little cartoons of yourself and others. These are my migraine creations.

It just won’t quit- poem

I wrote a poem for Migraineur Misfits Facebook Page help out with content on. I don't often write poetry but maybe I should more often. It is a more concise way to express the emotions or a precise statement. This one was inspired by two things. The fact that with chronic migraines it is not only the migraines themselves that do not quit it is that we must continue to function, keep on keeping going that does not quit. And that was a price to it. It feels like a punishment for a crime we never committed to be expected to function with all this pain, that we can only even treat a few times a week and have to endure the rest. Sometimes we are not allowed to express because in order to function we must hide the pain. Something we cannot even protest because for some reason this is turned against us... noncompliance with treatment and if we say you cannot work, oh, what a battle. Such a battle. It just never quits. Not the pain. Not the battle to function with it. Not the battle to get understanding from others, medical professionals, insurance companies and employers.

It Just Wont Quit

The brain pain came today. As every day.
 It just wont quit. I want to rest, I want to sit.
My brain is torn. I’m so weary and worn.

The brain pain came today. Please take it away.
No rest for the wicked. What crime was this and when was it committed?
Why can’t I rest? Why can’t I even protest?

The brain pain came today. It seems here to stay.
Pain never expressed. Until I’m depressed.
There’s never an end. Is that so hard to comprehend? 

It just wont quit.

This is the image I made, but seems I have a typo at the end. Dang it.

I wonder where I went

This can't be me I think sometimes. This is just the pain. The fatigue. This isn't me. I am smart and articulate. I am not here anymore. And I don't know where I went.

This can't be me I think sometimes. I had goals and ambitions. I wanted to get my phd and teach philosophy. Those days are so long ago and that person is long gone. Replaced with a realistic person who just wanted a job she could hold down. I was proud I could make that into a career but I yearned for that abstract theories and research life I had to leave behind. That part of me I had to crush in order to survive.

This can't be me I think sometimes when the pain consumed everything and it exceeded my ability to cope. Took my desire to live. Took my job that I struggled to hold onto just to hold onto something.

Where am I, I wonder? Do I exist in those small pain gaps? But no those have the fatigue constant from this battle and the post-migraine and the pre-migraine. No, there is very little me to be found there. But more than when the migraine hits and my brain function declines.

I exist in the constant state of pain flux, neurological chaos and fatigue. My personality itself is dimmed by it but clearest in the pain gaps. If I have the energy. Is this who I am? Just a constant flux of pain and neurological symptoms distorting my perception of existence and my ability to function in reality?

How can I be my authentic self when my self cannot even come out to play? How can I find a way to exist well in this chaos when there is no stability?

You have to wonder. You have to wonder because if you get just one migraine free day... it is like a cloud lifts from your brain. There is this massive amount of clarity that descends upon you. You can truly see the world. You can truly comprehend people. You can truly remember what they say. You can think straight. You can absorb massive amounts of information and use it just as quickly. And you realize This is how your brain ought to work. Without brain fog and glitches and thinking through pain.

And then it is gone. You are sucked back into this vagueness of brain fog and never getting all you can from your enviroment because pain makes you focus on what is directly in front of you. Ah, and, you lose so much to the haze of pain. So many memories become so vague.

I do not mourn the me of the past. The past is gone. Yes, I made compromises to survive. I survived so it worked. I just wonder how be me in this existence I have now. This me. How can this me be more than just this illness. How can I form a self-hood from all this hazy chaos.

The only authentic me through pain, or at least the lower levels..  is the me that laughs and acts goofy with my spouse despite it, or even because it... I do believe laughter is the best medicine for my spirit anyway. And that is authentically me. I am a goofy person who loves to laugh at goofy things.

And the other authentic me is the me that writes. And writes about everything. I write to understand myself, this illness, my experience of this illness and I write fiction. But while this is authentically me I wish that my illness did not get in the way of it with the endless fatigue and higher levels of pain. Or I would find more productive ways to make an income from this. I am just too exhausted to think of them. I am sure that is partly from the depression I fight from time to time.

Otherwise, I fight to be me. I fight to be more than Fatigue and Pain. They press down on me and repress all that I am. Dulling all of that which has always defined me as me.
A moment free of sunglasses and a hat. Wow.

Brain on meditation and me on meditation

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There is a lot of research on meditation. You don't need to show me brain scans to prove to me it has benefits.
I do however suck at it.

It is partly that I never feel I should pause long enough to do it. There is this concept that I should use my time doing something 'productive' and if I don't I should be 'guilty' about that. I know it would be more productive to take the time to do something that might actually help me in some way. But there you go. You spend decades of your life trying to push through the pain every moment of the day to function and work that you feel guilty for any downtime. Perhaps all that time with untreated pain, 'pushing through it' creating all that stress just trained the brain to feel it more. Perhaps we should take the time to train our brains to calm down a bit. Perhaps people should give us a moments peace to do so. There are many things we could do that might improve our existence... but damn doing all those things instead of being productive members of society, well, then we are just lazy are we not? Not to mention some of those damn alternative treatments are costly so not like we can afford do all the things that might benefit ourselves. But meditation is one that is free and does have benefits even in small doses a day.

There is an additional issue I find. The pain itself. Not like it just shuts up and lets you zen out. So you get to your quiet spot. Do whatever you do. Think of a perfect spot. Think of one word. Focus on your body. Whatever. And then... I personally become aware of the ringing in my ears. So silence not good. Okay, so play some mellow music. Good.

Begin again.

Then control your breathing. Take some deep breaths... become aware than when you do your head feels like it is swelling with pain. Ouch. Damn that is unpleasant. Okay. Shallow breathing it is.

Begin again.

Become aware of how bad your migraine actually is. There is something to be said for not sitting there focusing inward. Distraction techniques are a good thing when it comes to chronic pain. Hard to get around this one when you have an acute migraine. Okay. No meditation with an acute migraine. Stop. Do it later.

Much later.... Begin Again.

Meditate for a bit. Get sort of bored. Wonder if it is doing anything. Start thinking about story ideas. Wonder if that is more daydreaming and not meditation. Draw my thoughts back to my boring 'peaceful spot'. Sigh. Start daydreaming again. Realize I like daydreaming.

Get tired. Feel like having a nap. Start having a nap attack. Wonder if this means I am 'relaxed'.

Start to actually fall asleep. Okay meditation done.

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...