The big 40 birthday

Go Deep (2).png

I celebrated my 40th birthday on the 28th. That is now 20 years of migraines to date. But it went extremely well. Migraines have responded well to botox and this Oska Pulse device I am using. So low intensity and some migraine free days in there. I am also making sure to use magnesium and take B vitamins. And keeping myself hydrated.

So I celebrated on Thursday by going out with a few friends to Karaoke. I don’t sing but I support my friends. No migraine showed up after indulging in 6 beers. Which exceeded my usual limit of 3. So double. I only socially drink and rarely at that, so I have a low tolerance for alcohol so I was mighty tipsy.  But I quite enjoyed myself.

I went book shopping with my mom (the ultimate gift for me). Clothes shopping with my spouse. Due to my recent weight loss, I was looking for some jeans that actually fit me so I can give away some old jeans to charity. Instead of wearing clothes that are hanging off of me. Then my mom, my step-father, and my spouse went out to dinner. I had a low-intensity migraine but it never became much of anything, just a lot of light sensitivity made me wear my migraine specs.

It was a really good few days, to be honest. I really enjoyed myself.

Flipping into a new decade always makes you ponder things. I don’t mentally feel forty so I did skip the mid-life crisis (mid-life if I live to 80 that is). But it does mark 20 years of migraines and 20 years of fibromyalgia. That does make me think of treatment progression. Treatment when I was younger compared to now. Frustrations with coping when I had no effective treatment at all and the hopelessness of that to some modest treatment, routines at home and some acceptance in myself. It dramatically affects how you cope and live your life. Not to mention mood. When your pain isn’t managed at all, mood tends to falter. When you have no hope of any treatment, mood also falters.  So that needs to be attended to as much as the pain. It complicates things a great deal. Takes time to sort out. How we perceive pain and our lives with it changes over time as well. And our coping strategies are constantly adapting and growing. As is our maintenance routines. I have a pretty solid routine now, but in the beginning… had no concept of what would help, what wouldn’t help and what to do. And absolutely, fundamentally no guidance in the area either. Although, I, unlike some people, do have a wonderful supportive mother who has recommended things for me to try when I was younger and guided me a great deal in this journey. And I needed that. Someone who had my back.

Another thing I pondered was the price of chronic pain. Something people often do not think about when they see someone in chronic pain. They, obviously, would assume it sucks but the impact it has on someone’s life is pretty extreme. While you are trying to find treatment, messing around with treatment, trying new treatments… things suffer. Socialization, financial stability, friendships, relationships. The impact can explode all over the life you had. And trying to stabilize that can take years.

It isn’t an easy life by any means. But it is the life we have, isn’t it? And we have to live it the best that we can.

How to deal with migraine pain

I have chronic daily migraine with aura that is intractable. Pain literally can drive me nuts. It can make me suicidal. It can drive me to distraction. It can make me non-functional. But it is literally my life, so I have to deal with them one way or another all the time. Some better than others.

when-in-pain-distract-the-brain-escape-from-reality-for-a-spell

Distraction: This is by far the most common approach to coping with the pain. It cannot be used for high levels of pain, because the pain impedes of the distraction you are using but when I am at a 7 or low 8 I can distract. And basically anything that you can engage in that requires no In depth thinking can be a distraction. Some things I do:

  • Blogging- One of my favorites.
  • Coloring- Next to medication it is said to be very relaxing, and it is easy, so there is that benefit.
  • Reading- Some people can read with a migraines, others cannot. I can. Especially fluff books- ones with simplistic plots.
  • Writing- I write fiction but another way to express yourself that I do is journaling and gratitude journals. Both a great idea. In a journal you can just free flow thoughts. And sometimes free-flowing about your pain and feelings, makes them less Present.

Sleep/Rest– Sometimes when the pain is high or the fatigue is we simply need to sleep or rest, if and when we can. It can be necessary. No guilt allowed. It is part of pacing with pain to do so when pain is high.

Zoning– When pain is high we sometimes need activities that require no thought at all. Where information is presented to us, because we have very low concentration levels and ability to focus and are easily confused. So what I do at this stage:

  • Netflix: Binge a show on Netflix.
  • Pick a comedy on Netflix for a mood booster.
  • Watch a movie. I have a lot of movies on DVD so I just choose one of those and relax to that. Again, if I feel down, I will choose a comedy.
  • Listen to music
  • You can also visit support groups online and interact with people. Makes you feel less isolated and gives that social aspect you cannot get with higher levels of pain. Goes for all social media.

Meditation: I can and do longer forms of medication, like 20 to 30 minute body scans and breathing medications with a migraine to try and calm the distress that comes with pain. Can only be done with a 7 level of pain. Higher and the pain levels seem to interfere with the whole thing, or do with me so far. But it is relaxing. And if you cannot sleep for example then this is an idea to help get you there if you need to.

 

 

Pain Awareness Month

NYC(3)

September is Pain Awareness Month. Those of us with chronic migraines will be very aware of course.

In light of this I will spread this awareness upon this blog:

Chronic: I have chronic daily migraines with aura and persistent migraine auras without infraction. Every day I have a migraine. I don’t know if people understand what that means. Often they do not. It means pain from 7-9 every day. This isn’t a low amount of pain. This is severe pain. Occasionally we can treat it down to a 6 or even a 5. Often that doesn’t work long in my experience. At least not for chronic migraines. Triptans even will just dull it, work temporarily and then back again. If at all. On days we can use triptans of course. All because medications do not do much for chronic pain, which is why we have to try dozens of complementary treatments to help us manage our pain. And we will still have pain. Just a fun fact. That is the nature of the game. We just want Manageable pain.

I am referencing this pain chart.

comparative pain scale

Continue reading “Pain Awareness Month”

I owe, I owe it’s off to work I go

Have too much ambition_ On the fast track and don't know how to get off_Try migraines.

I work part-time, now, because the pain clinic said I could not work full time. But Financially part time isn’t working for me. Either. And they do not want me on disability, for whatever reason.

Fact is I need to earn money. Preferably online in the comfort of my home where I control the enviroment and preferably a writing job. That would be the ideal. As it is I’ll take anything. Looking for admin part-time, full-time. Anything but sales. And work form home as well.

Here is the thing I missed a day at work. Because I had to. But I don’t think they get I had to. I don’t think they get pushing though the pain and working anyway to slammed by the pain and completely non-functional. They just don’t. I don’t expect them to but I get the feeling they think I am amusing myself on my sick days instead of curled up in a ball of misery. My sales have been poor because I get in a lot of pain and just do the transaction before me… and not anything else. And then when I try I am all migraine confused, befuddled and aphasia brained… it doesn’t make much sense and no one is buying what migraine brain is spitting and stuttering out. I can’t so sales anymore. Not with this pain crowded brain.

And then the guilt hits you. You let down your team. And they were likely very busy. Always the guilt.

And then you think they will find a reason to fire me. No one likes the weakest link. The sick one. The one that can’t think through the pain. Struggling to pick things up slowly. But missing too many days.

I just want to find a place and a job I can excel at with my disability. That I can feel good that I did a good job. Excel at it like I used to excel at every job.

Why don’t people pay me for my exceptional writing?

Migraineur adventures in university

Add subtitle text (2)

 

Today I am going to talk about migraines in University and College. My migraines began when I was in university and were well into chronic by the time I was in my Masters. Due to those migraines being as frequent and poorly treated I did not go for my PhD and instead entered the work field. I am not going to say going for higher education is easy with chronic pain, because it is a challenge. However, it is also rewarding. I believe it takes a lot of determination.

In University when my migraine where chronic my main issue was getting to class on severe days. Intense nausea and vomiting that was a serious issue with my migraines then. Having concentration problems, speaking problems, aphasia and brain fog. A few of the medications I tried made my brain fog substantially worse which affected my work which was obviously a major concern. I remember a paper I wrote on one preventative and when I got it back, I had passed, but it was far below my usual grade and standards. When a read it over, I could see why. It was clearly written by someone who had no focus or concentration. I knew the medication had been making me groggy and dopey but until that moment I had not realized how much. I told my doctor if I could not Function there was no point in taking it. So medications themselves cause us additional issues. I also very clearly remember due to brain fog, aphasia and pain that it took me far longer to edit my Master’s thesis than to actually write it. All those errors from writing and researching with migraines were all wrapped inside it, and I had to weed them out (you guessed it) with migraines.

Remember going to university or college is a significant change in your life. Significant changes can cause increases in pain, extra emotional distress and a great deal of stress. None of which is good for migraines. It is in our nature to conceal our suffering from others in order to function but this often creates a sense of isolation and we no longer have our familiar support network of family and friends to fall back on if we are living somewhere far from home. This time in our lives strain our coping strategies because the methods we used to cope with our disability are not always effective in our new environment.

Continue reading “Migraineur adventures in university”

Migraine balm

So I have used many a product for migraine balms and I Have many a product around the house. But This one I use every freaking day I love it so much. It is an oil and you only use a few drops. It can be used for many different things and even added to bath water. 

I have used different sorts of migraine balms. Some with menthol and some with eucalyptus, lavender and things of that nature. I prefer the stronger ones. That sort of strong tangible menthol touch. Some are goopy and make your face sticky… which I rather do not like. Some are more soothing, lotions but just do not seem strong enough. I find the oils rub in just right, with no residue and are stronger.

The product I have been using is Hagina Japanese mint oil. I use it on my forehead, temples and along my upper jaw area and my neck. So soothing. Although if I am also doing ice on the neck then I avoid the neck area. It is by far the best product I have used topically for migraines. I mean, not like it is aborting it or anything magical like that, but it is soothing in just the right way especially when I cannot take medications that day or medications fail to take all the pain away. I especially like it just before I leave the house when I know the pain is going to be all hyped up.

My spouse found it for me at a local health food store along with another one that is too mild. He wasn’t sure which one to pick up so I got both. The other one is more aromatherapy and doesn’t do anything at all and sometimes can cause issues in-itself due to scent sensitivity. This one is minty for sure, but I never have an issue with that scent. And the sensation is just perfect for me.

Use:

Not recommended for full body massage.

Heating & Penetrating effects for Spot Treatment in massage, helps promote blood circulation, chest rub for chest and head colds, relieves tight muscles, cramps. Also, helps relieve rheumatic pain, helps treat sprains, swellings, dislocations, sport injuries, headaches.

A few drops massaged into a specific area:

  • Helps promote circulation.

  • Relieves tight muscles and muscle cramps.

  • Useful for injury rehab when treating sprains, strains, swelling and dislocations.

  • Headache relief when massaged on to the temples and the back of the neck.

  • Rub on the chest for head and chest cold relief.

  • Sinus congestion relief add a few drops into a basin of hot water, inhale while keeping eyes closed.

10 reasons migraineurs are awesome

_Don't look sick, you say__I know

 

Migraines are not in of themselves awesome to experience. They are a neurological condition and pain can be invited to that party, but not necessarily. It is a mind-blowing experience and not a positive one. So why would migraines make migraineurs so awesome you wonder? We experience a very difficult experience, sometimes very often. I think that makes us very strong people. Very supportive people as well. We develop strong communities and make great friends in those communities.

  • A super sense of smell- When we are in Stage 3 of a migraine attack, the Headache Phase, we can have Osmophobia, known as a very strong sensitivity to odors. We can smell your perfume a block away. We can smell those stinky socks you took off in the other room. It is so profound an ability we might be able to smell what you had for dinner two days ago. The only thing that messes with this trick is that we also can get olfactory hallucinations in Stage 1 of an attack, the Aura. In other words, we can smell things that are also not there. Like burning toast and sewer. Or rancid goat breath. Sometimes it is really hard to label phantom smells. And since we have a super smell machine we can look all over for phantom smells. Nevertheless, super human smelling makes migraineurs awesome. Misplace your sandwich? We are on it! Think the milk is a little off? We will know it.
  • Super human pain tolerance- I’m not one to brag or anything but I can stand, communicate and even move while my head is imploding. This is a skill mastered with chronic migraines, which are classified as more than 15 migraines per month. Once you reach migraine warrior class, I mean chronic, you have to function in some capacity with them. In order to have a life. So we develop an astonishing pain tolerance in order to do so. We are talking functioning under 7 or 8 on the pain scale. Not so much when we hit 9. But I doubt anyone can master that class of functionality. Not saying this skill is awesome in itself, but we need it… we really need it.
  • We can sense weather changes- Like your grandma with her arthritic knee we too have a sense of an impending storm and other barometric shifts. It really rather smacks us right in the brain noodle. I sense… oh my god that hurts like hell… yeah a storm is coming. Useful if we are there when you are having an outside gathering. We are your weather alert.
  • We hallucinate without drugs- Yes, we get the perk of hallucinations without having to take drugs. We can have migraine auras and see flashing lights, translucent raindrops falling from the sky, cascading multi-colored sparks of color falling over our vision. We can see warping motion of objects that are not moving. We can have hallucinations involved with Alice in Wonderland syndrome that cause our body to morph larger or smaller to our perception or the world to get bigger or smaller. I have persistent migraine auras, so I have auras with or without the actual migraine. Most people find auras very unpleasant and disruptive however since I get them so often I tend to just enjoy the varied light show. They can, be very visually disruptive given we generally need to see and AIWS in particular can be very severe. It is just an experience that we do not share with others. It is unique. It is indescribable. Sometimes entrancing and sometimes extremely disruptive. Sometimes visual and sometimes tactile.
  • We rock the sunglasses and hats- Due to our excessive loathing for light from photophobia we do not leave the house without sunglasses and/or a hat. And we rock it. We actually wear FL-41 specially tinted glasses for inside that specifically help with photophobia indoors, as well they can be used for outdoors as well in sunglass form. People often give us a double-take. Are we on drugs? Wearing sunglasses inside? Are we just that cool? No, but coolness is a side effect we are all good with.
  • We live in moderation- You won’t find us getting carried away because we have to watch our migraine triggers. Too much sleep. Not enough sleep. We will not for example go to a loud bar and get very intoxicated because a) loud bar could be a trigger by itself and b) alcohol is a horrible trigger. I personally learned this lesson in my early 20’s when I was first diagnosed. And a migraine when you are intoxicated? Not recommended. So we learn moderation. Keep it mellow. At times that happens to mean work wise as well.
  • We are always prepared- Yes we are always prepared for impending doom. Since we must live our lives when we do anything we are prepared for an attack anywhere we go. Migraine balms, triptan medications (abort migraines), naturally heavy duty sunglasses, hat and maybe some icy cold patches. For example we may want to get our rock on at a concert, but the loud noises are a massive factor, so we prepare and bring our migraine emergency kit and earplugs. Hope for the best, prepare for the worst.
  • We are empathetic- We understand pain. We understand pain that knocks you out all day. Or even for days. We understand pain that sends you to the ER. We understand pain that people don’t quite understand or can’t quite relate to. We understand it when pain becomes chronic people understand it even less. So we empathize with suffering. We know how difficult it is to manage and cope with invisible disabilities and chronic pain of any sort.
  • We are spontaneous- Because of the fact a migraine may in fact hit at any time, we do not do plans very well. We often cancel plans and feel exceptionally guilty about this. But, my friends, we do spontaneous very well. Because those low pain days or migraine free days? We want to take advantage of them. We live for them. We want to experience our lives during them. Like now now. Like let’s get out there right now and do something. In moderation, that won’t trigger a migraine, of course.
  • We are great at diets and supplements- We have tried so many restrictive diets to help with our migraines we are great with them. We know Paleo, high protein, Mediterranean diet, anti-inflammatory diet and the all-important ketogenic diet. We likely can recommend recipes. Have helpful recommendations. Tell you if we happened to lose weight, and let’s just say given we gain weight on every preventative med we are put on we consider that to be a plus. Since we have tried and are on numerous vitamins and supplements we are a fountain of knowledge on these. We know what they are for, what they help with and even what the potential side effects are. We know all the good migraine ones.

The internal battle of coping #Blogboost

We have a lot of lifestyle things we do in our treatment plan. Things we adjust and do on our side aside from medications. But it can be a lot of effort to keep it all up, especially if you really see no immediate benefit from anything.

The angel on my shoulder said exercise, avoid triggers, eat right, meditate, do your physio, do yoga and take your vitamins.

Lately I have been feeling angry, frustrated and somewhat drops of depression with the pain in relation to my migraines. Because there is nothing they can do. Because the pain isn’t managed. And I get into these moods, likely Not helped by my depression I’d say, that says it literally doesn’t matter what I do the migraines never change. So why bother even doing these things. What Is Even The Point. And so I slack off on the exercise. The medication. My vitamins. And I isolate myself a little more than usual because I just want to deal with the pain in the comfort of my own home for a bit.

I have never seen any response from anything I have ever tried. So that devil on my shoulder has ammunition. Literally nothing I have done or not done has changed my migraines from daily to less than daily. But this devil… he really just has no hope. He says be hopeless. Slide into a depression. Give up. Don’t think about it at all anymore. Nothing matters.

Then my other side kicks in and says I have to try. Maybe none of the things I do, do a damn thing. Maybe combined they do. Maybe over time with medications they will. Maybe, maybe, maybe. All I know is they do no harm. They give me something to focus on. And hope for I suppose. I think in the sense they give me something to strive for.

However, as you might imagine I never have much of a routine fluctuating between the two of these. Depression has a way of messing with my routines anyway as it saps all motivation to do a damn thing. Generally when I am in high pain at that.

Kudos to those that do dramatic diet changes and massive exercise programs. Because seriously I have to convince myself that doing these things in theory is even worthwhile. I have to then pretend I have hope. I have to work myself into some motivation.

I will say I seem to have developed a mindful meditation routine at night. No matter what it seems to be easy to get into. And relaxing before bed. At least I can say I have that down.

It would be more Consistent if I did all the things in my treatment plan… even if I felt like crap, depressed and felt it was all pointless anyway. That seems to be the goal. Then I would lose no momentum.

What interferes with your treatment plan?

Mine is clearly a) Depression b) pain levels c) frustration with lack of progress ever.

 

/

Some little lifestyle changes I am doing

Get your zen on

Three parts of my migraine protocol are:

1) Getting my zen on- Meditating every day or more if I want to. I do mindfulness meditation. It works the best for me. We all know there are benefits to meditation other than stress reduction. It helps preserve an aging brain. It helps with depression and anxiety. That depression factor is a perk for me. It improves concentration and attention. And it leads to some interesting changes in the brain:

In 2011, Sara Lazar and her team at Harvard found that mindfulness meditation can actually change the structure of the brain: Eight weeks of Mindfulness-Based Stress Reduction (MBSR) was found to increase cortical thickness in the hippocampus, which governs learning and memory, and in certain areas of the brain that play roles in emotion regulation and self-referential processing. There were also decreases in brain cell volume in the amygdala, which is responsible for fear, anxiety, and stress – and these changes matched the participants’ self-reports of their stress levels, indicating that meditation not only changes the brain, but it changes our subjective perception and feelings as well. In fact, a follow-up study by Lazar’s team found that after meditation training, changes in brain areas linked to mood and arousal were also linked to improvements in how participants said they felt — i.e., their psychological well-being. So for anyone who says that activated blobs in the brain don’t necessarily mean anything, our subjective experience – improved mood and well-being – does indeed seem to be shifted through meditation as well. Forbes

2) Exercise- which is supposed to help with pain. It is also supposed to help with mood regulation and depression, but I recently read a study that suggested otherwise. Nevertheless, I have more than one chronic pain condition so exercise it is.

3) Gratitude Journal- List at least three things a day I am grateful for. It also lowers stress and helps with depression. It is focusing on positive things each day.

Now I have an app for that.

I use Breathe for my meditation and Happier for my gratitude journal. There are lots out there if this is the way you want to go, but those are the two that I have chosen to help me with my progress. I don’t use anything for exercise even though there are plenty because it is a very slow painful process to me, so I track it in my daily progress at the end of the day.