June is Migraine Awareness Month

Here are some facts to get the ball rolling …
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All of those apply to me. I have definitely missed work on severe migraine days and had impaired functionality on the other migraine days I do go to work. It is a constant battle working with migraines. A battle of how much pain can you tolerate and how much can you function through. I’ve missed a few days in the last month.

Migraines don’t cause too many problems in my relationship other than the stress of me not being able to make as much money anymore… as I had to go down to part-time. And the stress of not being able to keep social obligations, but generally my spouse will go by himself and is fine with that. We have sorted a lot out. But he does more than his share and that is always a problem in a relationship.

I have migraines daily so more than once a week.

I have missed social obligations and family events. Missed planned events, parties, birthday parties but I try real hard to make it to every holiday, no matter the brain pain.

I think we all have had severe disability from a migraine requiring bed rest and restricting activity.

I have gone to the ER for status migraines, not that it ever does any good, since the ER here has no idea what a status migraine is or how to treat it.

So if you look at this… a lot of impact from social lives, family, relationship to work. Every aspect of our lives is impacted by the attacks and the pain. Which is why our quality of life suffers do to the assault of the attacks.

Yet, we still need to raise awareness because many people just do not understand that migraines are neurological, that they have many symptoms aside from the headache and that they can become quite complex and frequent complicating treatment a great deal.

Bad mood days

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The pain is getting the best of me today. The migraines have been brutal as the weather shifts from sunny to rainy on a dime. That and knowing I have to work tomorrow with the fake smiles and the game that I have to play brings in the depression I struggle with.

My depression is directly correlated to my pain. I was diagnosed with depression related to pain. But it is more complicated that that. Due to anti-depressants and their suicidal side effects I have two suicide attempts under my belt. That was being on those medications odd-label for migraines and fibromyalgia. So due to that sensitivity I cannot take them. Due to the second attempt, which was very spontaneous and sudden, they put me on Abilify for mood control.

I have not had any suicidal intent since. No active plan. But I have had suicidal ideation. That rises and falls with high pain.

Because I want the pain to end. I want peace. Silence. Darkness. Rest. All the things I cannot have working. All the things refused to me. And I tire of this game of pretending to function. Putting on the facade of wellbeing and the fake smiles.

And my brain knows an answer to that. It craves an end to pain. It tempts me with its story of an end to suffering. It is Compelling.

I don’t listen. Even though it is smart that brain. It makes some very valid points. It knows how to get me going down that slippery slope to suicidal intent.

I can’t listen because the rules say suicide isn’t right. It hurts people. The rules say you have to learn to cope with the pain. You have to function with it. You get no rest. No silence. No darkness. The rules say you have to do things that will cause you more pain because it is the right thing to do.

I don’t really believe those rules at all. I believe I need to find my own reasons to live and stick with them. Hold onto them tightly. Fake it till I make it. And know when the pain lessens slightly I will feel better mood wise.

Nevertheless, I am in a lot of pain. My mood is low. I have to work. And I am damn tired of it all. And i will go to sleep in pain. Have a crappy sleep. And work in a great deal of pain. One more day till the weekend. One more day to make it through to earn some rest, silence and darkness that a migrainuer needs to find a least a little peace to suffer in.

Something to tell my psychologist about I suppose.

The tells and the pass

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I can pass for healthy. I know because while I have FM and chronic migraines no one at work can tell when I have a migraine. Which is always. And they can’t even tell when I have a pretty damn severe on. I fake it pretty good because I am in customer service so I have to. I have the finest fake smile you have ever seen. Natural, smooth and honest. Because I am honest about being pleasant and happy. Just happens I am hiding all the pain expressions and behaviors that come with it.

So I can ‘pass’. At work. Not always at home where my spouse is more aware of my ‘tells’ that give me away.

We all have them. Although with chronic pain we are used to dampening those pain behaviors for various reason, we still have less noticeable tells. With migraines they can be quite migraine related.

Here are mine:

  1. Loss of the ability to communicate is a tell. Whether it is brainfog from the prodrome or aphasia from the aura… loss of communication that is quite noticeable is a tell.
  2. Rubbing my neck all the time is a tell. Because my neck hurts so damn much I just want to try and relieve the tension.
  3. Violent nausea and vomiting… big old tell. My relentless nausea has definitely been noticed by my co-workers as I lose weight and can barely eat. I have also thrown up but have been as discrete as possible about that. This one… pretty obvious.
  4. Vertigo is a tell but more precisely when it is severe or when I have a drop attack. A drop attack is sudden, and I will lurch to the side it is one often either falling or falling into a wall, chair or whatever happens to be there. Severe sudden vertigo on the other hand I will grip onto things and immediately find somewhere I can sit safely. It is a tell something is wrong.
  5. Then when the pain is climbing up into the 8 range lack of smiling, or difficulty maintaining a smile, lack of laughter, silence until I have to talk… is a big sign for me.

I think if people are not familiar with migraines they simply do not see the signs. Can’t recognize the tells. Think you are seriously ill, even though you explain it is just the migraines. Or don’t notice at all.

Unbearable

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I save my 10’s so you won’t hear me say I have a 10 migraine. I had a couple and I compare all migraines to those specific ones. So my worst migraines are a 9. And it is non-functional. It is unbearable. It is couch bound and unable to leave the house, do chores, work or do a damn thing.

And that is today. I am writing this to distract me from the pain before bed. Not being sure I will be able to sleep because of the pain level. Not sure how I will function on my work day tomorrow if this persists.

Losing days are horrible things. Time you will never get back. And I used to feel guilty about this but it isn’t my fault the pain peaks to a level I cannot handle. That I wish I could gouge my damn eyes out. That the pain consumes all of my brains attention. That it is all consuming. I refuse to feel guilty. Yet, I hate lost days.

It is important to rest though. Important to engage in self-care. Get into a dark, silent space. Use your ice pack. Use a migraine balm. Man, I slather that stuff on. Do some relaxation pain to just breathe through the pain.

Then just curl up and binge Netflix or what I movie. Something that requires no brainpower. I binged Daredevil today. Lay in a ball of pain and watched that.

Now, here is hoping the painsomnia subsides.

MAV, Vesitbular migraines

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I have had vertigo for around 6 years now. Bouts of it for hours, weeks or even months. I feel these constant dropping sensations, swaying when I move. I can’t stand for long, walk for long. Sitting is uncomfortable with this dropping, tiling, swaying. Lot of equilibrium issues as the ground feels unable like my feet are sinking into it. I also get the other symptoms including tinnitus.

Migraine associated vertigo can have these effects : “dizziness; motion intolerance with respect to head, eyes, and/or body; spontaneous vertigo attacks (often accompanied by nausea and vomiting); diminished eye focus with photosensitivity; sound sensitivity and tinnitus; balance loss and ataxia; cervicalgia (neck pain) with associated muscle spasms in the upper cervical spine musculature; confusion with altered cognition; spatial disorientation; and anxiety/panic.” Migraine Associated Vertigo  

“Migraine-associated vertigo (MAV) is a syndrome consisting of dizziness and/or vertigo that is suspected to be related to migraine. Many patients diagnosed with MAV do not have headaches, or have chronic non-specific headaches that don’t fit into the migraine classification developed by the International Headache Society. The cause of this condition is unknown but progress is being made through clinical experience and genetic research. This condition was previously rarely diagnosed, but is now proving to be one of the most common causes of chronic dizziness and/or recurrent vertigo. Sufferers often describe chronic dizziness and dysequilibrium in the form of a “rocking” sensation when still, recurrent episodes of rotational vertigo, chronic daily headaches, migraine headaches, light sensitivity, poor visual acuity and other changes in vision, visual “snow”, nausea and severe motion intolerance. Many of these symptoms cannot be objectively observed or tested for, so physical and neurological examinations (including neuroimaging) are often completely normal. Patients generally do not have all of these symptoms – in fact those with chronic dizziness have quite often not experienced acute rotational vertigo or even a migraine headache. MAV is often misdiagnosed as Meniere’s Disease, Vestibular Neuritis or as a psychiatric disorder. A condition previously described, known as “atypical Meniere’s” is no longer recognised and is believed to be a migrainous vertigo sydnrome. ” http://www.mvertigo.org/

Migraine associated vertigo (MAV) is the old name and still often used but the new diagnostic name is vestibular migraines.. Migraines with vestibular symptoms associated with them. However, some of us have many attacks outside of a migraine which is why we often use the term MAV so often because it migraine associated vertigo, with or without a migraine, nevertheless, the correct term is vestibular migraines and those of us that get vertigo bouts outside of our migraines are just more rare and they might have to broaden the category to chronic vestibular migraines in the future.

“Migraine-associated vertigo (MAV) is a syndrome consisting of dizziness and/or vertigo that is suspected to be related to migraine. Many patients diagnosed with MAV do not have headaches, or have chronic non-specific headaches that don’t fit into the migraine classification developed by the International Headache Society.
The cause of this condition is unknown but progress is being made through clinical experience and genetic research. This condition was previously rarely diagnosed, but is now proving to be one of the most common causes of chronic dizziness and/or recurrent vertigo.

Sufferers often describe chronic dizziness and dysequilibrium in the form of a “rocking” sensation when still, recurrent episodes of rotational vertigo, chronic daily headaches, migraine headaches, light sensitivity, poor visual acuity and other changes in vision, visual “snow”, nausea and severe motion intolerance. Many of these symptoms cannot be objectively observed or tested for, so physical and neurological examinations (including neuroimaging) are often completely normal. Patients generally do not have all of these symptoms – in fact those with chronic dizziness have quite often not experienced acute rotational vertigo or even a migraine headache.

MAV is often misdiagnosed as Meniere’s Disease, Vestibular Neuritis or as a psychiatric disorder. A condition previously described, known as “atypical Meniere’s” is no longer recognised and is believed to be a migrainous vertigo sydnrome. ” http://www.mvertigo.org/

MAV is often mistaken for Meniere’s Disease

I have been given two new medications to help treat my vertigo issues. Zofran for the nausea and SERC for the vertigo itself.

SERC is actually used to treat Meniere’s Disease but sometimes its symptoms and migraine associated vertigo (vestibular migraines) are extremely similar. As they are in my case. My doctor asked me if I get vertigo, nausea, tinnitus and hearing loss and I do. But I also get the sort of vertigo associated with meniere’s.

“A typical attack of Meniere’s disease is preceded by fullness in one ear. Hearing fluctuation or changes in tinnitus may also precede an attack. A Meniere’s episode generally involves severe vertigo (spinning), imbalance, nausea and vomiting. The average attack lasts two to four hours. Following a severe attack, most people find that they are exhausted and must sleep for several hours. There is a large amount of variability in the duration of symptoms. Some people experience brief “shocks”, and others have constant unsteadiness. An unusual variant is the “invisible hand”, where individuals feel as if they are being pushed over. High sensitivity to visual stimuli (visual dependence) is common. (Lacour, 1997). During the attack the eyes jump (this is called “nystagmus”).A particularly disabling symptom is a sudden fall. These typically occur without warning. These falls are called “otolithic crisis of Tumarkin”, from the original description of Tumarkin (1936). They are attributed to sudden mechanical deformation of the otolith organs (utricle and saccule), causing a sudden activation of vestibular reflexes. Patients suddenly feel that they are tilted or falling (although they may be straight), and bring about much of the rapid repositioning themselves. This is a very disabling symptom as it occurs without warning and can result in severe injury. Often destructive treatment (e.g. labyrinthectomy or vestibular nerve section) is the only way to manage this problem. Other otologic conditions also occasionally are associated with Tumarkin type falls (Black et al, 1982; Ishiyama et al, 2003). See here for more information about drop attacks.” dizziness-and-balance.com

In particular my severe bouts do not tend to last long, but after I get a severe bout I have long lasting mild to moderate vertigo. The mild to moderate vertigo can last days to months. But the severe bouts tend to last hours or at most a day. Which is good because you can’t do anything during it. And I also am very prone to sudden drop attacks. In fact, they are so common I consider them to be a primary feature to my vertigo… this sudden severe spontaneous drop followed by prolonged instability.  S severe bout of vertigo always comes with an increase in tinnitus in one ear and sometimes with a muffled hearing in that same ear. Lately due to having to commute to work (motion being one of my sure-fire triggers) I have had a constant instability with brief bursts of moderate vertigo shocks and then sudden bouts of either drop attacks or severe vertigo. It has not been pleasant. Thus the medication change. My doctor suggested I may try not commuting, as in relocating to a workplace branch in my city, rather than the nearby city thirty minutes from home, but I will have to see if such a change is remotely conceivable within the organization. They tend not to consider my health issues to be disabling to be honest. She did write me a doctors note, but this is not like a sick note for a sick day… this is a ‘hey would you consider moving her to an entirely different location because I recommend it?’ I doubt they will go for it, considering my past history of requests and their responses. But I can ask. I mean two new medications to ‘hopefully’ manage this vertigo enough that I can walk and eat… or just not commute and my existing medication will be sufficient. Seems like such a simple solution. But nothing is ever, ever simple with a chronic illness.

Also I do not want to work at the closest branch a it is a horrible working environment. The vertigo has been slowly improving. And I have had mostly instability equilibrium issues lately.

 

Aphasia, brainfog and communication

I am having a difficult time lately with brainfog and migraine aphasia. The brainfog studies suggest is due to our pain. That is the pain takes up a lot in the brain only leaving so much for memory, focus and concentration. And I have been in a lot of pain lately.

The migraine aphasia is a migraine aura stage symptom. Causing transient aphasia. It makes it difficult to communicate verbally and written. You say a word and out pops and another word entirely. You say a word and it comes out garbled up and unintelligible. You Don’t comprehend well either. Sometimes the right word comes out but mixed up, like you mixed the letters up in your brain. Written wise you use the wrong word, transpose letters, write nonsense. You transpose numbers as well.

It is extremely frustrating at work. You are trying to talk to a customer and all of a sudden you can’t say certain words, words you need to use. And sentences come out all half-assed backward. You use the wrong word and don’t always even notice. You feel like a fool.

And oh how the internet abhors a typo. People never get slack on a typo.It is the bane of the internet’s existence apparently.  Even if it is caused by something you cannot control. I’m tired of people who have nothing better to do than point out someone on the internet made a type. What a shocking event. People are human. People will make typos.

You can follow the brainfog tips I wrote here and see if that helps any. For migraine aphasia, not so much since it is the migraine to blame.

The migraine aphasia has been driving me mad lately from dealing with work and then people online. I hope it just gives me a break soon.

A little humour

This made me chuckle when I saw it. Course it is just as elusive for neurological visual phenomenon… can’t imagine an eye exam for that either. 
Less snowy or more snowy? 
More sparkles or less sparkles? 
Oh you just had a religious experience? Wrong slide. 
Now you’re seeing dead people? Drat.