Preventative treatments #MHAM #MHAMSMC

Please share your experience with trying to find effective Migraine and/or Headache preventive treatments.

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I have had migraine with aura for 20 years, along with menstrual migraines and vestibular migraines (Migraine related vertigo when I was diagnosed) and persistent migraine auras. I likely had silent migraines well before that initial diagnoses given the aura presentation I had; corona auras and visual snow.

But my luck with preventative treatment medication wise has been an arduous journey that hasn’t gone too well for me. I have been a non-responder to medication with One exception to that rule.

I did respond and do respond to Sibelium for the Vertigo alone from the vestibular migraines. Which is a very good thing because it was getting to be very problematic for me. Things like driving, for example, were getting to be an issue. As in, not recommended. All motion was a trigger; from an elevator ride to a car ride. So, yes, this was and is a successful vertigo treatment. And the only successful vertigo treatment I tried.

Also, one preventative that helped me in the past for a very short duration was Topamax. I responded, somewhat, then it failed. I was put on it again a couple years ago. And I believe it helps me, somewhat, with intensity. Hard to say though. Prior to the Oska my pain, daily, was a 7-9. So… not cool. Does it help? I think a little. I did occasionally get the odd 5 to 6 in there before the Oska. But if it is doing something it isn’t doing much of something.

Other that nothing has touched the migraines in all the time of trial and error. Not even my first attempt at Botox. I am making a second attempt. The first go around had a different protocol than they do now. Fingers crossed.

Non-medication wise, I use an external pain device: see Oska Pulse post. It is an external pain device that I use for all my pain but it quite helping me with intensity and somewhat with frequency. As well as with my extreme persistent nausea issue. So it is a different type of prevention. I thought I would see results with FM but with migraines I had pretty much assumed not, since they are so… entrenched. But slowly and surely I did. So that is a sort of prevention I use now daily to manage the pain. I have a lot of low pain days in there now. Well, a lot More. I don’t track but at least 3-4 days a week I am in the 3-6 range. Some days I am migraine free which has been so long since that has happened I literally have no recollection of it. The remainder of the week is 7-9 and I get home and I have to really get using all my resources; ice, magnesium, meditation and the Oska to manage it. But it is quite a lot better intensity wise. Anyway, I am a responder to this pain wise. I should track it. So I have a clearer image. All I know is some days it really astounds me. How late the pain comes. How mild it is. But we all know there are out there other external devices for migraines specifically, and others being researched. I have other pain so this one is ideal for me. People should consider them as an option since the research is there.

Another preventative tool I am using is migraine glasses. I have used both Axon and TheraSpecs. I have photophobia all the time. My migraines are daily, so that isn’t a surprise. And I have FM, which can cause similar issues. The migraine filter is especially beneficial for light sensitivity. It not only helps prevent but helps with light as an aggravating factor.

Anyway, prevention I discovered is about a lot more than medication. I discovered this after years and years (okay decades) of failed medication treatments. Prevention is about alternative therapies like the Oska I use. Or for others, things like acupuncture (this for me triggers vertigo for some bizarre reason). It can be stress reduction techniques like meditation or biofeedback. It can be taking supplements like magnesium and your B’s. It can be lifestyle changes and trigger management.

I use currently:

Aromatherapy

Meditation

Exercise

Supplements: Magnesium, B complex

Meditation is good for the brain.png

And in the end, some of us are still going to be chronic. Because that is the way our brains are. They have become really sensitive to triggers. Pain begets pain. And we have to move on to pain management techniques. Or add that to the equation.

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Migraine management #MHAM #MHAMSMC

Please discuss elements that go into Migraine and Headache management in addition to medical knowledge.

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Medical knowledge does go a long way for sure but when you have chronic migraines you have to dig a lot deeper into lifestyle and alternative treatments. That alone is trial and error and a lot of your own research, or word of mouth from others who have traveled the same road. So the elements I would say have gone into my migraine management have been:

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Mood management: I developed depression with the migraines. At first, depression associated with a chronic pain condition and then it developed into Major Depressive Disorder that required medication. Obviously very important to manage a comorbid mental health issue. And for me what is equally important was seeing a psychologist who specialized in pain to help with pain coping strategies. Which leads me to…

Pain management: Managing pain through various coping strategies. And for me, it helped to go to the pain clinic and seeing a pain psychologist to refine my techniques. Pick up things like meditation to add to my strategies. Because the fact is, pretty much no matter what I do, there will be migraines and I have to accept this and have a life with it. This requires adaptation and coping.

Lifestyle Management: This is where we manage the triggers we can, where tinted specs for photophobia, keep ourselves hydrated and other things we have that we can control and manage. Including things like exercise (Although, one could put exercise under pain management as well since for me it was part of my protocol).

Perseverance: It has taken me quite some time to see any improvements on the medical side of things, but there is a lot of things to try. And other changes, likewise, take time and effort. So we need to just keep going.

 

The comorbids

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Several chronic pain disorders were reported to be associated with migraine. The Nord-Trøndelag Health Study (Hagen et al., 2002) noted that subjects with headache reported more musculoskeletal pain than those without. The risk was similar between migraine and non-migraine headache patients (OR = 1.9 vs. 1.8). However, headache frequency was a strong predictor for musculoskeletal pain. Von Korff et al. (2005) also found that patients with self-reported chronic spine pain were associated with migraine with an OR of 5.2. Fibromyalgia was very common in patients with migraine with frequencies between 22 and 40%. (Peres et al., 2001; Ifergane et al., 2006; de Tommaso et al., 2009) The development of fibromyalgia was highly associated with migraine frequency. Patients who suffered from both migraine and fibromyalgia reported a higher prevalence of insomnia, lower quality of life and more mental stress (Peres et al., 2001; de Tommaso et al., 2009). It is interesting that the fibromyalgia was more frequent in female migraine patients than male patients (Ifergane et al., 2006; de Tommaso et al., 2009).

Fibromyalgia as you see is associated with higher frequency of migraines, higher prevalence of insomnia, lower quality of life and more mental stress. Therefore a comorbidity like this can have a major impact on coping with the migraines, with both. Certainly I have found this to be true. My frequency is daily, my insomnia severe and difficult to treat and both have impacted my quality of life and I do experience a great deal of stress due to the pain. Not to mention FM is chronic pain itself. I have been so insanely sore lately it is hard to sit down, hard to lay down for too long, hard to get up and walk… pain levels have been high. Add the migraines in and that is a whole lot of Overall pain we are talking about and Low level of functionality. There is times when the migraine is severe and I need to lie down… but I can’t lay down long because it causes me significant FM pain.

Depression

 In another study, which used data from an adult US population to look at the cross-sectional associations between three pain conditions (migraine, arthritis and back pain) and three psychiatric disorders [depression, generalized anxiety disorder (GAD) and panic attacks] (McWilliams et al., 2004), the associations between the three psychiatric disorders were roughly similar. In this population, 28.5% of the migraine subjects were considered clinically depressed, while only 12.3% of subjects without migraine fit the same criteria (OR 2.8). Comorbidity with psychological distress was related to a poorer health-related quality of life in patients with migraine (Wang et al., 2001). In a recent study, patients with disabling chronic headache had high frequencies of somatic complaints (OR 8.6) and major depressive disorder (OR 25.1) (Tietjen et al., 2007). We used a 30-item version of the Chinese Health Questionnaire (CHQ-30) to screen minor psychiatric morbidity if the score was > 10 in a Taiwan population. The study showed that subjects with chronic migraine had a higher chance to have a positive screening result in the CHQ-30 score (>10) than those with chronic tension-type headache (CTTH) (66% vs. 36%) (Lu et al., 2001). In clinic-based studies, patients with chronic daily headache, especially chronic migraine, had high frequencies of major depression and panic disorders (Juang et al., 2000). In addition, the presence of major depression was a poor outcome predictor in patients with chronic daily headache (RR = 1.8) (Lu et al., 2000).

Comorbidity with psychological distress was related to poorer  health outcomes and poorer health-related quality of life. Depression makes all pain harder to cope with and takes away the will to fight it as well.

When it comes to comorbids I have many. I have fibromyalgia, depression, suicidal thoughts and actions, allodynia (which can be extremely painful), asthma and I believe thought not in this article Hypothyroidism is a comorbid and I have that one as well. Under CVD is our white matter brain lesions, and I have those as well. That would be these:

Sub-clinical vascular brain lesions

Sub-clinical cerebral lesions, especially in the posterior circulation or white matter, were reported to be more frequent in patients with migraine (especially migraine with aura) in a case-controlled MRI study (CAMERA) (Kruit et al., 2004). The same group also demonstrated that most (88%) infratentorial infarct-like lesions had a vascular border zone location in the cerebellum and, further, that a combination of hypoperfusion (possibly migraine attack-related) and embolism is the most likely mechanism for posterior circulation infarction in migraine (Kruit et al., 2005). Recently, MRI was performed in participants of the AGES-Reykjavik Study, more than 26 years after the initial headache diagnosis. Women, but not men, with migraine with aura in midlife were associated with increased cerebellar infarct-like lesions in late life (Scher et al., 2009).

So there is a long list of comorbids under each group I listed on my graphic. And other miscellaneous ones like asthma and even narcolepsy. I have 7 of them so that should show how easily it is to get these comobids once you have one. Although FM came first for me. Nevertheless you end up with a cluster of conditions all working against each other than need to be treated. Like FM making the migraines worse, and migraines making the FM worse. And then the hypothyroid needing to be treated well but it mimics some symptoms of the FM so hard to know if you are getting the right amount of meds. Then asthma springs up from god knows where. So there is another med, which by the way may trigger a migraine when you take that.

The picture becomes complicated. The pain becomes very complicated.

 

Source: Comorbidities of Migraine

Migraines and missing work #MHAM

All ready to go to work.So is the 9 level migrainetriptan failedwhat do you do_

I am Canadian but I assume the numbers in ratio to population are similar.

I can say that days are missed in my work from migraines.

I have daily migraines so I do work with migraines. But there are also times when the migraine pain levels are unbearable, there is insane nausea and vomiting or moderate to severe vertigo or diarrhea. So there are days when I really just can’t make it in.

When I was working full time it happened more often. I was very stressed. There was more days to be there and therefore more migraines. Only three of the five work days could be treated with tripans. The sleep deprivation issue I get from working full time caused monthly status migraines. So I missed too much work. When on leaves every couple of years. Went on a long term leave as well.

This is all stressful as an employee. You know it causes problems when someone on the team isn’t there, you know that work has to be shuffled to someone else. And you feel guilty about it.

It is stressful for an employer. They don’t know how to ‘fix the problem’. But they want a employee that is dependable. They might try to figure out a best way to handle it that works with you. Or they may try threats and ultimatums. It depends on the employer.

It works for no one. No one wins.

I feel often at where I work now that they don’t take my migraines seriously. I call in. And they ask when I can get in… because it is busy and they need me. Well, I just said I have a wicked migraine without going into the details of my very frequent bathroom breaks… And I don’t know how long this migraine will last but generally the pain phase lasts 10-14 hours. So, no? But she still insists. So I med myself like crazy to get in there all drugged to the gills. Making more errors I might add, and in extreme pain, trying not to toss my cookies or otherwise rush to the bathroom for the other end too many times. And it is hell for me.

We do not want to miss work. I certainly don’t. I know in the States they have something called FMLA but we do not here. I make it to work or I am sick. There is no other options. That is why I had to change roles and go down to part time. There was not other option available to accommodate me in my other role.

Under the hat ‪#‎underthehat‬ ‪#‎MHAM‬

As a part of Migraine and Headache Awareness Month, the American Headache and Migraine Association (AHMA) is participating in the European Headache Alliance’s “What’s Under the Hat?” initiative to raise public awareness of Headache Disorders. AHMA has selected today – Saturday, June 25th – to be our “Under the Hat” day.

Share your story, along with a photo of yourself wearing a hat, to Facebook or Twitter OR create a video story and post it to YouTube, including the hashtags ‪#‎underthehat‬ ‪#‎MHAM‬ and Twitter handle @AHMAOrg.
You can find helpful tips on participating here: http://www.europeanheadachealliance.org/under-the-hat/

I wasn’t at all online today and then came across this social media campaign when I got home. Had I known sooner I would have promoted it, but it caught me by surprise so here it is. I posted to twitter, instagram and facebook. And a awesome idea that it is considering my love of hats due to migraine photophobia.

This is for headache awareness.

So if you have a headache disorder and a hat… get in while there is time today. Let us blow that Hashtag up shall we. It is the 25th here anyway. 🙂

For this awareness I will state that I have daily chronic migraines with aura. At this current point medication is not working for me, but I’m going to give botox another go. Just to say I did. And because I truly enjoy a numb head. Or was it I hated that? Whatever, it will take care of any wrinkles I happen to have going on in odd areas that wrinkles don’t tend to happen anyway. Which I don’t have. I’ll suggest my migraines are also lower in the eye area. Kidding. Like I’d want the numbness there too.

I’ve had migraines officially 19 years. However when I was in my early 20’s they were episodic. Still monthly from the get-go but not chronic. They sort of just picked up steam as I went along. I am told in my case due to central sensitization. Because I certainly wasn’t on any MOH medications and limited my triptans. Just the way it was.

Chronic migraines are complex to treat. People often wonder ‘how I have them so frequently’ Well…

No one gets migraine frequently.
It isn’t rare. Not like I am some weird anomaly. They then ask ‘Why can’t anything be done?’ I say they are trying. Hell are they trying. One neuro said I simply do not respond to treatment. Flat out said, your brain sucks balls. But the fact is there are many preventatives, none of which are designed for migraines, to try. And I simply have not responded to them. If I had a Perfect response even then you are looking at a max 50% reduction in migraine frequency. Which would leave me, well, still chronic it seems. But I have never even come close to that perfection for sure. I would love 50% reduction.

It would be a long post if I went into impact. Let’s just say every aspect of my life has been impacted.

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Canada and migraine stats #MHAM #CDNmigraine

_1 in 4 people, like me, have a Mental Health problem. Many more have a problem with that._

I’m going to let you in on a little secret. There is little migraine awareness in Canada. I piggy-back on the US migraine awareness because we have none. No day, week or month. Here is our list of days Canada awareness days. And nary a day for migraines.

I try to do everything I can to advocate for migraine awareness during June because I believe it is important people are awareness this disease can profoundly affect a life. But in Canada there simply isn’t that much awareness to promote. I do it all online. There are no events, talks or large organizations to support.

In the states they talk about lack of funding for migraine research. Imagine what it is here. Imagine with the lack of people thinking about it, talking about it and being aware of it what our funding is. Nill I expect. And very little research I expect, although I have seen some crop up from here.

In fact I only found a few sites on the topic at all and none of them are promoting awareness at all.

Chronic Migraine

Canadian Headache Society

Neurological Health Charities Canada

Migraine Canada FB

Nevertheless us Canadian Migraineurs have a voice as well, that isn’t often heard in the discussion. Here are some of our Canadian stats from 2010/2011

In 2010/2011, an estimated 8.3% of Canadians (2.7 million) reported that they had been diagnosed with migraine

Females were more than twice as likely as males to report migraine (11.8% versus 4.7%), a pattern that prevailed among all age groups except children younger than 12 (Figure 1). Fewer than 1% of children had migraine, and no significant difference emerged between boys and girls. For both sexes, prevalence was highest at ages 30 to 49; the mean age for women was 43, slightly older than for men (40) (p < 0.01).

On average, migraine was diagnosed at 26.2, 3.6 years after symptoms were first experienced (p < 0.01). There was no significant difference by sex, contrary to earlier findings that onset peaks earlier for men than women

Compared with the national figure, migraine prevalence was lower in Quebec (6.8%) and higher in Manitoba (9.5%), Nova Scotia (9.1%) and Ontario (8.8%).

The majority of migraineurs reported symptoms of depression—63% were classified with minimal or mild depression, and 20% had moderate to severe depression.

About one-quarter of migraineurs experienced pain that prevented activities (26%) or felt left out of things because of their condition (26%). More than half (53%) reported that migraine had prevented them from driving, at least for a short time. Migraine limited getting a good night’s sleep for three-quarters of migrainerus (76%). Almost a third (30%) reported limitations in educational opportunities.

About one-third of migraineurs reported limitations in job opportunities (34%), although the majority were currently employed (70%). Over one-third of those currently working (36%) reported missing at least one day of work in the past three months owing to migraine. Nearly one in five (18%) who had previously been employed reported that they had changed their work activities (hours, type of work, or stopped work) for at least three months because of migraine. Previous studies indicate that migraine is strongly associated with lost productive time, most of which is linked to presenteeism (reduced productivity) rather than absenteeism Stats Canada

The educated patient

Headache and Migraine patients educated about their disorder have better outcomes. #MHAM

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I have not exactly had a great outcome since I have yet to find a preventative I respond to and didn’t even respond to botox. And my neuros basically said there was nothing more for me.

Nevertheless, educating myself was one of the best things I have done. I learned about not taking my triptans more than three times a week. I learned about MOH. I learned about triggers in more detail than my doctor bothered explaining it. I learned to track my migraines.
Continue reading “The educated patient”

Migraines and suicide #MHAM #CDNmigraine

Suicide attempts are 3 times more likely in people with #Migraine with aura. #MHAM

Suicide attempts are 3 times more likely in people with #Migraine with aura. #MHAM

 

Pain itself is a suicide risk factor. Suicidal ideation and intent can happen when pain exceeds our coping strategies. Which happens when we have no pain management and we are exceeding our pain limits.

During the 2-year followup period, persons with migraine or severe headache were at least 4 times more likely to attempt suicide than controls. The odds ratio in migraineurs — adjusted for sex, psychiatric disorder, and previous history of suicide attempt at baseline — was 4.43 (95% Confidence Interval [CI] 1.93, 10.2). Persons with non-migraine headache of comparable intensity and disability also had a greatly increased likelihood of suicide attempt as compared with controls: odds ratio, adjusted for the same covariates, was 6.20 (95% CI 2.40, 16.0). [Due to the wide, overlapping CIs the difference between the 2 odds ratio estimates was not statistically significant.]
Continue reading “Migraines and suicide #MHAM #CDNmigraine”

5 docs for migraine diagnosis #MHAM #CDNmigraine

Most people see up to 5 doctors before an accurate #Migraine diagnosis. #MHAM
Most people see up to 5 doctors before an accurate #Migraine diagnosis. #MHAM

I actually find this stat surprising. It didn’t take me long to get diagnosed with migraine once I mentioned it. I believe this is because when I mentioned it I was getting straight up textbook migraine with aura. You could literally check the typical symptoms off one by one. And the aura was the typical scintillating scotoma you get if you look up migraine aura. This was prior to my aura becoming a persistent migraine aura and becoming quite varied. Prior to my migraine associated vertigo, now called vestibular migraines. So it was pretty clear these were migraines with aura and not, say, sinus headaches.

Sinus headaches are a common misdiagnosis because we do get sinus symptoms with migraines. And not everyone gets auras. So that complicates the diagnosis quite a bit.
Continue reading “5 docs for migraine diagnosis #MHAM #CDNmigraine”

There is no Cure #MHAM #CDNmigraine

There is no cure for #clusterheadaches or #Migraine.

There is no cure for migraines. Let’s be upfront about that. Don’t post cure sites. I am tired of it. To be honest treatment for chronic migraines is difficult enough. I am pretty tired of posts about internet and fad treatments that are generally called ‘cures’. I’m sorry but maybe they do work for a migraine but with chronic migraines most actual doctor recommended treatments have failed. I doubt a handful of almonds or Gatorade is going to do the trick. Even together. Even if I made the gross green smoothy with Gatorade and almonds.

You know what I like to do for acute treatment? Triptans. When I can use them, that is what I do. Triptans. Made for acute treatment of migraines. And when I can’t? I use ice and migraine balms and meditation and I suffer. Because that is what people with chronic migraines do a lot of. Suffer. And trying to find ways to make that all right. Trying to find ways to cope with that. And people flashing their ‘cures’ frankly is insulting and ticks us off. If it were so easy. Damn, if it were so easy.
Continue reading “There is no Cure #MHAM #CDNmigraine”