on denial

Great read to think about

Brain Storm

***This post is not directed at any one person as the p.o.v. might imply, but rather sums up my feelings about so many conversations, spoken and not, imagined and not, that happen between people with chronic incurable illness and their loved ones.***

It’s hard to accept that an illness will be chronic, ongoing, and that only gradual improvement is plausible, but I’ve done it. Mostly. And accepting my reality is the very thing that allows me to make the best of it. Time spent wishing I felt better is wasted time. Time spent finding small comforts in the moment, taking care of myself, and looking forward to the small joys of tomorrow is time well spent.

Not that I don’t sometimes still break down in a puddle of overwhelmed exhaustion and despair tinged with self pity and feel loads better afterward. I do. But it’s no longer a daily, or even…

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The disability question

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How long do you persist with working through pain? It is a question I ask myself all the time. There are a lot of factors to consider and I grasp them all. There is income stability. There is the factor of work helps with isolation, the sense of productivity and is emotionally and mentally beneficial. We feel good when we work. But then there is the chronic illness. The pain.

Continue reading “The disability question”

Triptans: Not a magic pill

 

 

I wanted to look up the efficiency of triptans because it seemed to me that often, more often than not in fact, I would just get a dulling for a couple hours and then back to full blown migraine. Or it would work for a couple hours and back to full blown migraine.

This isn’t the magic pill we are sold on. The ABORTIVE that will ABORT our migraine 100% so we can continue on with our day. But it can do that. Just not the percentages I had always assumed. The response rate of any kind of pain relief was in the 60%. Completely free of pain at the 2 hour mark were in around averaging 30% and those that sustained it in around the teens, with no adverse reactions. Those that had a migraine again roughly in the 30%s as well.

The thing was I thought the response rate was around 80. With the ones getting 100% in the 60%. And occurrence around 20%. But it shouldn’t have surprised me because Many people have the same experiences as me, so these stats must be quite accurate indeed. Even the failure rate of around 40% seems roughly accurate.

Remembering we can only take these 3 times a week, regardless of how many migraines we get… I myself have been saving them for work days because I work 3 days a week. I have to say dulling my migraine for a few hours… not helping me get through the work day. Just saying. Weel, substantially worse when I worked five days a week and had days not covered at all.

So people have to understand, yes, we have a pill to take for our migraines but it isn’t a magic pill. The responses for every migraine vary. And we are limited in our capacity to take them.

 

 

Source: Treating migraine headaches with Triptans

Migraine: The Postdrome

The Postdrome is called a `migraine hangover`for a reason… it is the hangover without having it drink it get it. Yay us. It can last for hours to days. Yay us.

The postdrome is a constellation of symptoms that persist beyond the resolution of headache. Many of these symptoms appear initially during the prodrome or with the headache phase. Commonly, patients report anorexia, nausea, muscle tension, fatigue, and cognitive impairment. This phase has been termed the migraine hangover and can last and produce disability up to 1 to 2 days beyond the headache phase. The pathophysiology of the postdrome is unknown, but likely represents a gradual recovery phase from the extreme neurologic disruption that occurs during migraine — Understanding the Patient With Migraine: The Evolution From Episodic Headache to Chronic Neurologic Disease. A Proposed Classification of Patients With Headache, Medscape

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Not much happens with the Postdrome but we feel Cruddy with it. So fatigued. And with brainfog like nuts. Once the pain is gone it is like the body and brain don`t turn back on yet… they are left lagging behind with no energy to run.

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And then, again, we get the mood symptoms back for a show. I have Never experience the euphoria… but that would be nice for sure. I have experienced the depressed mood though

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You can also feel sore all over with muscle tenderness. Just feeling uhg all over.

Here are the results of a study on 893 migraineurs:

RESULTS:

A total of 32.9% of IHS migraine 1.1-1.6 patients reported prodrome symptoms with an average of 9.42 hours. IHS 1.1-1.7 migrainereported 29.7% and 6.8 hours, respectively. The most commonest symptoms were tiredness, mood change, and gastrointestinal symptoms; all three of these symptoms were present together in 17% of the patients with prodrome. The duration of prodrome was less than 1 hour in 45.1%, 1-2 hours in 13.6%, 2-4 hours in 15.0%, 4-12 hours in 13.1%, and greater than 12 hours in 13.2%. IHS 1.1-1.7 patients showed similar findings. IHS 1.1-1.6 patients with prodrome differed from patients without prodrome in having more triggers as a whole (P <.01), more individual triggers including alcohol (P <.01), hormones (P <.01), light (P <.001), not eating (P <.05), perfume (P <.01), stress (P <.01), and weather changes (P <.05), a longer duration of aura (P <.05), longer time between aura and headache (P <.05), more aura with no headache (P <.05), longer time to peak of headache (P <.05), longer time to respond to triptan (P <.05), longer maximum duration of headache (P <.05), and more headache associated nausea (P <.05), more headache associated running of the nose or tearing of the eyes (P <.05), more postdrome syndrome (P <.05), and longer duration of postdrome syndrome (P <.001).

So symptoms vary as does that duration by quite a bit.

 

So now we are at the end of the migraine stages. But it is good to note these stages last for different durations. Sometimes you even skip a stage, assuming you even get the auras or the headaches. And sometimes you go from the headache stage right into another prodrome of another migraine. The stages are what a standard attack looks like, but every attack is different. You may not get a prodrome one time and have a long prodrome the next. Same with the postrome. It may be not there or last days. There is a lot of variability in there and it is good to know the symptoms to know what stage you are in. First it helps with immediately treating the migraine. Secondly it can indicate when a migraine is nearing its end… but is in still in effect.

Migraine: Headache stage

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We are all aware of the headache stage. Many people thing it is the only stage which is why we need to raise awareness of the neurological processes to the disease.

It lasts anyway from 4 hours to 72 hours. Yeah. It can in fact last that long. And it certainly does. When it lasts longer it is a different, called a status migraine which is important due to the risks associated with it. It is mild to severe in intensity.

It is pulsating and throbbing. Definitely made worse by movement.

Generally migraines are diagnosed as one-sided pain. But they can in fact be bilateral from the get go. They can become bilateral into the attack. They can also switch sides during an attack.

It is not necessary to a migraine attack. Silent migraines have no headache stage.

In this stage is the migraine symptoms that are most familiar to someone who does not suffer from a migraine. Such as the sensitivity factor: To Sound. To Light. To Odours.

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And it can include:

 

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Not to mention jaw pain, facial pain, vertigo and dizziness and more.

The pain is hard to describe in its intensity. It is hard to think through pain. Hard to want to move pain. Constantly distracting pain. With your senses all heightened making your environment quite unpleasant and aggravating.

Migraine: Aura stage 2

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I see I have a type it is Stage 2, not 1.

The aura is the flashy portion of the migraine. Often people without migraines think we all get but in fact only about 25% do. Of those who actually do experience migraines with aura, they themselves do not necessarily get a migraine with every attack… it is around 20%. Some of us get only the aura for an attack and this is a silent migraine. I have had a few of these myself.

Tactile auras- like numbness, tingling

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Allodynia: is one of the worst symptoms that can occur in this stage. It is hypersensitivity to touch in a fiery nerve pain sense. Very common for people with migraines to get it in the scalp but can in fact occur anywhere. I get it severely on the back and clothes touching my skin is hellish pain.

Visual hallucinations, auditory hallucinations, olfactory hallucinations- all the weirdness of migraines.

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Dizziness and vertigo- both of these can get pretty nasty. And vertigo can make you feel very disorientated. Not to mention cause drop attacks; where you think the ground is there but you brain says ‘nope’ so you feel you are falling and do, or over compensate and fall the other way to recover.

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Tinnitus is a EeeEeeeeEeeeing nightmare. It gets pretty high pitched with a migraine. Then your hearing goes out or goes muffled in one ear and All you hear is that ringing.

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HM migraines have their paralysis symptoms and stroke like effects.

Here is a short visual representation of an aura that typically lasts 60 minutes

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Visual auras can be:

  • Scotoma; the area of decreased or lost vision.
  • Phosphenes; brief flashes of light.
  • Blurry vision.
  • Wavy lines: like seen through a heat wave
  • Scintillations
  • Other visual symptoms

Others

  • numbness or tingling
  • pins and needles
  • weakness on one side of the body
  • dizziness
  • Vertigo

What is the cause?

The scientific term cortical spreading depression (CSD) describes a local disturbance of the brain function that is characterised by a transient and local suppression (depression) of the spontaneous electrical activity in thecortex (cortical) that moves slowly across this brain region (spreading). Aristides A.P. Leão, a Brazilian studying for a PhD at Harvard University was the first to describe this phenomenon in 1944 (Figure 1). He made this discovery while studying epilepsy. One year later, a better characterisation of CSD, especially of its progression, allowed Leão and his colleague R.S. Morison to propose, for the first time, that the malfunction of cortical nerve cells suspected to cause the aura might well be CSD. Indeed, both the suspected nervous malfunction and CSD shared surprisingly many common properties.Migraine Trust

Criteria for migraine with aura:

  • A. At least 2 attacks fulfilling criteria B–D.
  • B. Aura consisting of at least one of the following, but no motor weakness*:
  • 1.Fully reversible visual symptoms including positive features (e.g., flickering lights, spots or lines) and/or negative features (i.e., loss of vision).
  • 2. Fully reversible sensory symptoms including positive features (i.e., pins and needles) and/or negative features (i.e., numbness).
  • 3. Fully reversible dysphasic speech disturbance.
  • C. At least two of the following:
  • 1. Homonymous visual symptoms1 and/or unilateral sensory symptoms.
  • 2. At least one aura symptom develops gradually over ≥5 minutes and/or different aura symptoms occur in succession over ≥5 minutes.
  • 3. Each symptom lasts ≥5 and D. Headache fulfilling criteria B–D for 1.1 Migraine without aura begins during the aura or follows aura within 60 minutes.
  • E. Not attributed to another disorder.

Do you call in to work with migraine?

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This recent survey results discuss how people with migraines are reluctant to inform employers about them or tell them that is why they missed work.

Of those who missed work, just 42 percent said they told supervisors the truth that migraines and headaches were the cause. The reason? Most think their bosses/instructors don’t consider headaches or migraines a valid reason for being absent Reuters

And they are right to think that. When I call in sick, which I will for migraines with severe digestive issues (horrible diarrhea and vomiting), severe vertigo or 9 level pain… they still want me to come in when it is done. Like an hour later. Like an Hour Later. I want to say this is going to last 8 hours to 3 days. Generally 8-10 hours for me, sometimes 12-48 hours. No one hour show for me. Yet I force myself to go in. I take whatever medication I can and just force myself to do it, facing whatever hell that will be. Because I miss too much work. Because they do not comprehend a migraine and all the symptoms that go with it.

 While most managers (57 percent) view migraines as a good reason for missing work, 38 percent were less amenable, saying migraines either only sometimes justify calling in sick or don’t justify it at all. Managers were even tougher on headaches: While 43 percent responded that headaches could be severe enough to justify calling in sick to work, 53 percent said “no” or “sometimes” to the issue.Reuters

The poll revealed gender differences among those who missed work or school, with 67 percent of men surveyed staying home one day or more in the three months leading up to the survey, compared to just 44 percent of women. Even though men were more likely to miss work or school, they were less likely to be upfront with their employer or instructor about the reason. The poll shows that 60 percent of men did not mention their headache or migraine to their boss or instructor while most women—54 percent—did tell the truth.

I am upfront about my migraines with my employer due to the fact they are chronic migraines. I know they will have an impact whether I will or or not. Whether I want it to or not. So they need to know. Just a fact. I don’t care if they know about my other health conditions but I don’t talk about them because they have little to no impact. FM for example can flare up horribly but I’ll be at work… it isn’t the same sort of pain and therefore one I can ‘think’ through. And at a non-physical job one I can adapt to to some degree, but not to say it isn’t painful and I don’t have issues with the pain and other aspects, just that I have taught myself to ‘get through it’. Certain levels of migraines I endure because I Must, and some I just Cannot.

  • Men and women experience different types of pain. Twice as many women as men in the poll reported that they suffer from migraines (17 percent of women vs. 8 percent of men), while more men in the survey reported missing work for tension headaches (38 percent of men vs. 31 percent of women).
  • Migraines and missing work. The leading reasons people gave for missing work were migraines (37 percent), followed by tension headaches (35 percent), cluster headaches (10 percent), sinus headaches (10 percent) and other types of headaches (6 percent).
  • Personal experience counts. Those who experienced headaches and migraines themselves were more likely to say they personally feel a headache or migraine can be severe enough to justify calling in sick to work.

 

The one thing I hate about chronic migraines is that I can’t miss work for a migraine anymore. I used to know a lady with episodic migraines and she would miss work when she got them. Everyone was accommodating and understood. It is a migraine after all. But when you have chronic migraines, you miss work too much so it is not seen the same way. They doubt. They wonder. Why do you get that many? What is wrong or different? They are not so accommodating. Even though you are not missing work for Every migraine just the out of control pain migraines or out of control symptoms. You don’t get to miss work for a migraine. ‘Just a migraine’ is just another day. That is what I hate. It is not a pain that is meant to be functioned through and the neurological symptoms can be really messed up.

So I am not missing work for a migraine. I am going to work with a migraine every damn work day. I am missing work for a mother trucking migraine. The mother of all migraines. To have a employer not get that is not fun. I wish they had a taste of it. Just one day of the worst migraine every, with the combo platter of symptoms. I would want they to work through it and tell me how they ‘feel about that’.

Migraine: The prodrome

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We don’t talk about the prodrome often because it isn’t as flashy as the aura or the pain of the headache stage or the fallout of the postrome. We sometimes forget it is there. But other times, it is very there. Sometimes it hits you like a wall of fatigue and stupid. And you could literally drop into a nap anywhere on a seconds notice. Having a conversation becomes a tangled complicated affair. And everything becomes so much more frustrating and complicated than it needs to be.

If we do not have migraine with aura, and have another migraine type like migraine without aura… then the prodrome can indicators can be important to help us to know when to take our tiptan for maximum effectiveness. It can be tricky to pay attention to them though. I, for one, have other chronic conditions so when I start feeling these I tend to wait because it just may be a ‘bad day’ in the other illness department. Yawning though is generally a good one and then, for me, an aura in the next stage obviously the clincher. Here is Research about treating during your prodrome. Basically earlier is better which has always been the suggestion. And our main complication with chronic migraines as well due to the fact we have more migraines than triptans we can take… and our tendency to ‘wait and see’, thus making our treatment less effective.

This tidbit was intriguing “The triptan treatment paradigm is shifting.[15-18] Earlier treatment of the headache phase of the migraine attack itself improves the percentage of patients responding to triptans, reduces the need both for a second dose of triptan and for rescue medication, and reduces recurrence. However, treatment during the aura phase has not been documented to prevent or reduce the headache attack.[19] Prodrome, conversely, appears to offer a unique opportunity for early treatment.” Medscape

I know I am in the prodrome when I get the Yawns. I mean excessive yawning. Over and over again.

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Somewhat embarrassing at work mind you.

Food cravings is an intriguing one due to the fact there is the speculation chocolate is a craving and not a trigger. Because it occurs in this before the migraine area it can be mistaken of a trigger. For me it is definitely a craving. I get it right in this initial onset stage.

Continue reading “Migraine: The prodrome”