Migraine treatment: Full throttle

chronic-illness-to-do

So I have been talking managing migraine pain very seriously lately. Can’t use a triptan except for 2 days a week. So what to do. What to do. Go full throttle is my answer.

I use ice right away and hope I can knock the pain down a level. If so, a good head start.

I use magnesium oil to get that magnesium into me fast.

I put a migraine balm, Japanese mint oil, on my forehead and temples

I put these CBD cream on my neck, shoulders, and jaw. If I do not have this, then something high in menthol.

I do some meditation.

I take zofran, ginger, and Gravol for nausea. Maybe have a peppermint tea as well.

Water for hydration.

And I put Lavender and Sage in my diffuser. Sometimes Bergamot.

Then when the pain begins to rise I repeat any number of these steps to keep it at bay. If the nausea gets worse, more ginger, or zofran, or tea or gravol.

 

It is a full on battle plan every single day. But some days I find this works. I can knock it down to a 5 and keep it there most of the day… sometimes it bumps up in the evening. Some days, usually the ones where I wake up with it, or hormonal ones, or epically painful ones…. not so successful. And I feel my ice treatment would be better if I had an ice hat, so I need me one of those in my life. I can’t imagine being able to do this anywhere but at home. It is non-stop all day. And it only works sometimes. So a lot of effort to get the pain down. Nevertheless having it work gives me a pain break… less pain to get through the day with.

But as soon as I leave the house, all for naught I’m afraid. Migraine amps right back up from all the light, the sounds, scents and having the drive. So no idea how people get around that.

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.

 

 

If plans.

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My psychologist wants me to come up with a plan to use for my time since I am off work.

I thought it would make more sense to wait until I am approved for the disability. Despite being suicidally depressed, having FM and chronic migraines ironically this doesn’t necessarily make me disabled in their books. They think surely you can work a job, rather than die. And I think rather would die, or so my brain seems to go when I am amped up by the pain of working and failing to achieve work standards. And then they go I think you are significantly improved, so we are not going to keep you on disability, and should actually work full-time. And I go I’ll give it a go then… a couple months later… yeah I think I’ll try that dying thing instead. The last time I rather thought I’d make it at least three years before suicide was an option again, but not even close to that. I think because I hit the time frame of five years since my last attempt and statistically that is a range where people attempt again. So how very statistical of me. I told them I was suicidal the last time (well they knew since it was after the second attempt), depressed, had FM and chronic migraine and they only approved me for a few months. So hardly a sign they will approve me this time. A sign I have to watch My mental stability for sure. But not a great sign these guys particularly care that I am crippled by pain and depression. Makes me despondent with the process to be honest.

So planning how to use my time instead of working may be moot for so many reasons. Nevertheless my psychologist is the optimist and can’t see why I would be declined. I get it, everyone knows I shouldn’t be working except those in power to make the choice. It is ironic. I could be wrong, one never knows. Maybe it will work out fine and that would be a profound relief. I am tired of thinking what will happen if I don’t.

But I still have to do the exercise. So what will I do with my day?

  1. Housecleaning- I can’t really houseclean when I am working. The fatigue, the pain levels… there is nothing left. And my day off is me laid out recovering with nothing left in me for anything else. So if I am not working I am going to do my Mom’s idea of 10-15 minutes of cleaning a day. I have a lot of fatigue and pain so can’t manage much a day… this is a good daily amount. On a good day… I could try for more. But my min, daily should be Achievable.
  2. Exercise- likewise with exercise I have not been able to do it while working. Can’t exercise on a day off and increase the pain on a work day… too painful. Too fatiguing. So I will start my physio exercises and stationary biking. Stationary biking will be slow again with the FM and EDS… usually 2-5 minutes start and then it is a slow arduous process to increase. Took me six months to get up to 20 minutes. But gotta start somewhere.
  3. Writing- As my hobby I will be writing more. Blogging more and the social media that comes with this. Raising awareness more and maybe I can find ways to do more with that. I also have my fiction writing which I will focus on more. NanoWriMo which is a writing month of November is coming up so that will keep me quite occupied. I have a novel planned out for that and everything.
  4. Meditation- Focusing more on my meditation. Always never found the time to do it when working. There is no time to do it. No place to do it. So I will get into the routine of that again. It is difficult to do with chronic pain, but I think worth it.

And that is all I have so far. Hard to think of things other than the things I am supposed to be doing for my health like the mediation, physio and exercising that I can’t do when working. And the housecleaning I can’t keep up with.

The lies we tell

liar

On my blog I will say I am in a crapton of pain. To my family, sometimes, I will mention it as well… if it is in that high range that is getting to me. But I lie a lot to others and to family.

I lie because… I don’t need to validate my pain to everyone I meet.

I lie because… I don’t always feel like talking about my pain, I feel like surviving it and coping with it.

I lie because… I don’t feel like getting false sympathy.

I lie because… I don’t feel like getting ‘advice’.

I lie because… I know most people do not really want to know how I feel and are just being polite.

I lie because… no one benefits from the explanation of my pain and I just want to get through it. Sometimes the facade I use gets me through the day better if I just pretend.

I lie because… explanations tire me. I get tired of constantly explaining to people what I migraine really is like and how it is really affecting me.

I lie because… I don’t want my loved ones to know how bad it really is.

I lie because… it isn’t anyone’s business but mine, unless I choose to tell them. It is my prerogative to keep it to myself.

 

It has a lot to do with functioning in society with people I don’t know, acquaintances and co-workers. I don’t owe anything to any of these people. I tend to hide the pain with my stoic pain facade. Or when at work with my super customer service facade. And I want to get through the day with pain alive. It is only friends and family that we really need to connect with communication wise. The rest of them it is on a as need basis. Or if the pain is too high to hide. It is just as simple as that. So we lie by omission. We do not tell people how we really feel. And if we did, they would think we were chronic complainers. Or saying too much information. Or fake sympathy. It does no one any good to know really.

It does create a sense of isolation working in a lot of pain, faking your way through the day masking the pain as best as you can struggling to function… when no one notices and/or cares. And we wonder why no one cares about the suffering we have to endure. Few people, if any notice. The few that do, wouldn’t know what to do about it regardless.

 

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.

 

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How do we even do this? #Blogboost

EmilyD

There is something special about chronic migraines. In its unbearable suffering. I admit I have not exactly been responsive to treatment. Recently at the pain clinic my doctor put me on 200mg of slow release tramadol for pain. And nada. I actually wondered if it was a strong pain killer but someone else at the same pain clinic… for sever TMJ was getting a 1/4 the dosage and was doing great on it. Either I respond poorly to it, or it just doesn’t do it for migraine pain. It actually moderately helps with fibromyalgia related pain, which I rather like. Not a lot, just sort of takes the edge off the sharper pain. But it is like it ignores the migraine pain altogether. However, there is no other pain killer he would put me on due to rebound effects. He did consider a NSAID but due to my rather unfortunate response to previous NSAIDs and now side effects that wasn’t an option. He is completely right to do so. My doc once put me on codeine for a rescue med and I rebounded like crazy on that. More than twice a week and the headache From it was nuts. There is no winning with rescue medications. The only reason they tried the tramadol at all with me is because I have been completely non-responsive to medication. I do however respond to triptans, just have bad side effects so cannot take them very often at all.

So there actually is no option. Aside from trying botox for a second go around, when it failed the first time. Nevertheless, I am going to try it, because rather nothing else to do. And when you have nothing else to do, you repeat and hope for the best.

The pain is mind-boggling. So difficult to even attempt to function through. To even want to contemplate functioning through. But doctors all encourage work. Only part-time, but work. And it is just so freaking exhausting to try to manage the pain.

If I didn’t have a medication to manage the depression associated with all this pain, I would in fact be suicidal from it, as experience has told me. As it is, my mood still dips quite a bit. Because, well, it isn’t exactly fun and games is it? But it is constant. A constant battle of pain every damn day. This is because the pain levels are quite high. For example FM pain varies from a baseline pain of around a 4-5 with more intense pain in specific areas of around a 6… flare ups get to 7 or 8. Migraine pain ranges from a 7-9 all the time. So all the time I am in 7-9 pain. Best case 7. Good day.

And a 9 is extremely high intensity pain. Yet I am told to work through it. To push myself because the pain will be there regardless and I need to work. That is effing high pain. I have troubles driving with that level. Troubles just moving. Thinking is very narrow and tightly focused… and not all there. It is like the pain gives you blinders. It crowds your brain so you have to narrow your focus to the specific task in front of you. Inch by inch, get though the day. Plod though things slowly and methodically. Praying for no errors. And just counting down the minutes until you can get home to suffer in peace. Time becomes infinitely slow. Drawn out. Endless.

And I wonder how the hell am I even managing this? Not well really. Not well enough at work, still, even part-time. The pain specialist said the pain and medications make things difficult cognitively. Not to mention migraine pain specifically does. How the hell do we manage all this pain? Affecting our capacity to think to function to move to sense our environment with accuracy… Because we must, obviously. But I don’t know why we don’t just up and quit one day. Enough! That is it! I’m not moving from my dark house until I have to… screw you society! You can’t make me suffer more! Course they can. And they do. And we continue on.

Where does all that damn strength and courage even come from? Some days I cannot get out of bed because of the pain and the creeping depression that tells me I just don’t want to move in all that pain. Those days are days the pain wins. How I manage to get out of bed on other days… I have no idea.

We must be badass mothertuckers. I don’t feel like I am, but to do what I do in pain I must be. All I ever feel? Is the guilt of not doing when in pain. And I am sick of the bad pain days. Because there are too many of them. If I could just decrease the intensity of these migraines I would be so relieved. As it is, I feel like I am running in a dream… where my legs don’t work and are stuck in thick air and I get nowhere at all. Nowhere fast. Can’t escape.

I wonder if I am the only one that wonders… how will I get through tomorrow with this pain? And how long can I endure this pain? Years? decades? So maybe I am a badass Mothetucker but I am a tired one. Far too tired of this pain game. Worn to the bone. How I have survived this long is something that surprises me. I don’t know how I did it. Moment by moment of course. Still decades of pain wears a person down. Yet we carry on. Tired. Badass with our freaking shear determination and guts. I will win this day! And we do.

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Roadblocks

I have been listening to the Migraine World Summit and so far I have not picked up anything I didn’t already know but it is interesting to listen to neurologists perspectives.

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One thing I think so far is that I suck. Ehm. My brain sucks. That is to say I’m in a bad mental place to improve that fraction we have some control over. And this angers me. But I realize it is predominately for two reasons.

  1. I am depressed. My brain is telling me adamantly that nothing I do will make any difference. That is hopeless. That this pain will last forever. That nothing will ever chance. In my brains defense neuros giving up on me and saying nothing will help me doesn’t help. Thanks for that. Point is brain is set on sucky mode. And then there is the crap motivation of depression. So I know the irrationality of my thinking and I know what I should be doing about it specifically. However I lack any motivation to do anything. And then my brain rolls back to, well, it isn’t going to have any effect anyway so why bother. Sort of want to smack myself at that point.
  2. Long history of no change. I have had chronic daily migraines for 13 years. I calculated that out when blogging for this topic and Holy Hell. And in that 13 years absolutely nothing I have tried or done has had any effect at all on the daily migraines. I know what caused them to go from chronic to chronic and daily though. As soon as I entered the work force they bumped up from 15-20 to every single day. And have not changed since. Depression set in about five years ago due to pain levels and stress at work. All that unmanaged pain. No preventative has really worked for me and working with daily migraines is no bloody fun. Then the stress of missing work and leaves of absence. None of that helps any. Point is nothing gave any indication of any hope at all. And if the past predicts the future, I think I am screwed. And that is what my brain tells me.

 

This is not to say I am not trying. Just means I have some mental roadblocks to deal with. And I have been told in my case it is simply about managing the pain. Sort of depressing that fact. I like to believe that fraction we have some control over… the lifestyle aspect may have some impact. If I do it consistently and all together. Even if it never has before. I would just like some migraine free days in there somewhere. Just a little break in the flow. Unlike some people I do not have constant migraines. I have distinct migraines not a non-stop migraine. So I may wake up migraine free, which is generally the case but as you know some last days. And then get one a few hours after waking. So there are hours in a day without a migraine. I do have comorbid pain, so not pain free, but migraine free. I just want migraine free days a month. Down to 20 or 15 would be ideal. Seems like a fantasy at this point but I believe entirely conceivable.