Hey, doc, where is my magic pill?

help with pain

Migraines are unique in the sense that we do often think in the beginning they will be well managed and there is no reason to think otherwise. Likely, we have absolutely No Clue they can develop into chronic migraines. And ignorance is bliss.

And for a bit with episodic migraines they Are well managed. Your pain is controlled. Triptans work well and the migraines are not frequent so certainly, you do not have to worry about rebound headaches, which at the time you likely will also not have heard of.

But as they become more frequent you get in this limbo stage where you start preventatives and use your triptan the max the week. And you Still believe your doctor can help you with your pain. Because these are migraines not chronic pain, right? Surely, they can be managed much easier. No doctor says this is chronic pain and this is no longer easy to manage. And, hell, that would have been a realistic thing to say. Because it is. You can go back down to episodic and then it wouldn’t be chronic pain, unless it was high episodic which has the same impact. But let’s say you went right down to low episodic well then it wouldn’t be chronic pain anymore. But until it does… chronic pain. Until it does, it is complicated.  And because they don’t come out and say it for this limbo period we think this can’t be that bad. It can’t get worse. I’ll take the preventative and it will Substantially improve.

But it doesn’t because no preventative substantially improves anything. Best case 50%, which sounds awesome but is a rare result. And if you are daily, 50% still means chronic. So pretty complicated. You add in vitamins, lifestyle, exercise… and whatever else you need to add it, or try, or try again just to see if something works. Anything works. And at this point, it becomes pretty clear your doctor isn’t going to help much with pain management. And medication alone isn’t going to be the end all of treatment.

In the end, pain is always more complicated than we initially think.

Bubble world

Fraction.You see but a fraction.Chronic Pain.So much is unseen.But felt.An entire existencehidden from sight that affects one's entire existence.Unknown.Perhaps,unknowable..png

Chronic pain is a world. It profoundly affects our perception of self and reality. It affects us mentally, physically and emotionally.  It can break us and make us, and quite frankly, do both. It is suffering and perseverance. It is coping and not coping at all. In this world we have to understand it is a bubble world. It is different than the reality of someone without pain.

And yet, all of that turmoil, change, and adaptation is under the skin. It is an unseen world. Unknown. And perhaps even unknowable. It never ceases to amaze me when I think of the profound impact and raising awareness, how much depth there is to the experience.

I have was writing a fiction piece and the character said chronic pain was like suffocating and choking, like never getting enough air.  Choking on the pain and existence. I have myself said it is a life of inches. People move a mile a minute it seems. While we crawl and suffer for inches.

But there is a lot more to the experience of suffering than that. There is a sense of constant ‘overcoming’. A sense of perseverance. A sense of enduring. Of constant survival, if not thriving, then surviving. Not the victim, the warrior.

Then there is the constant maintenance that comes with chronic illness. All the day to day things we do to ‘maintain’ the pain and the disease itself. Not to mention our actual goals to achieve a better quality of life. And setbacks. And small victories.

There is the hefty emotional toll that has to be looked after as well. Constance self-care isn’t just physical it is mental and emotional as well. Not to mention comorbid mental illness that is so very common with chronic pain… because it is Pain and it is a trial to live with.

It is no wonder it is commonly referred to as a war that never ends. With battles, small victories and retreats but never an actual victory or end. No wonder it comes with fatigue… as we are battle worn soldiers.

And out of all that comes a lot of thoughts and perceptions about our disease and the pain. The guilt. The feeling on is a burden. Not a productive member of society. Not pullings one’s weight. A failure. The stigma often is we should blame ourselves for being ill… and then we blame ourselves for being ill. There is a lot of external stigmas but then again we internalize a lot of that stigma onto ourselves, sadly.

And yet, we can explain all of this and still never make it KNOWABLE to someone. Living in a pained body is an experience you have to have to understand. How the pain is a constant presence. How exhausting that is. How it consumes so much that it is hard to think though. How deep inside you may just feel overwhelming tired of the battle. That you may have had suicidal ideation… thoughts about the pain ending. That some days you don’t even know how you made it this far or how you can go on. But you do. But the depth of the pain, its weight on us, the deeper, darker thoughts, the feeling of trying to get things done with pain and fatigue weighing you down… all this is so unknowable.

And it is always a little sad for me when people I thought had grasped my suffering say something that tells me they really don’t. And maybe simply can’t. Maybe you can’t cross the line until pain is chronic and daily. When it is severe and it presses against you constantly, steatling your capacity, functionality and productivity.

Wednesday Wonderings: blurred lines

All my lines are blurred.png

Migraines are the kind of disease people like to discount. It is just a headache, they think. It is just a once a year deal, they think. So when you are chronic and a lot different for you and certainly a migraine is a lot more than a headache, you are still discounted. You can be intractable and disabled but seen as not sick enough to actually be on disability. I’ve seen it. We often hover in that blurred line of disabled and not sick enough, by others, by insurance companies, by doctors… people that matter for our lives. People who don’t listen. People we have no control over. And they randomly choose one and that affects the fate of that migraineur’s Life.

And we walk the blurred line of functional and non-functional. One moment barely function and the very next non-functional. People wonder how we could do something one day and not the next. But the pain of a migraine varies within the migraine. Or can be half treated. And migraines vary themselves. One could be a 7, and you can be barely functional at that. One can be a 9 and you cannot function at all at that. We, though, have to live in the shifting of pain and functionality all the time.

Just as we have to live in the shift of tolerable vs intolerable pain all the time. We have limits to our pain tolerance. We cannot function when we exceed those limits. A 9 migraine is an intolerable pain.  To expect anything from a person in that level of pain is idiotic. Yet, people do. I have had people expect things from me at that level. Forced me to. And I didn’t get far.

But that blurred line between who we are with pain and who we are without it can really haunt us. With it we can be irritable, moody, frustrated, exhausted, confusion, have brainfog, memory issues, concentration problems…. we are fuzzy, zoned out, tired, moody versions of ourselves.  When do we get to see that person we are without the pain? Just a glimpse here and there? And that is the saddest thing of all. I barely know that person. Barely see that person. I am more the person in pain than I am ever without migraine pain.

Oska Pulse

So this is a bit of a carry over from my other blog the Brainless Blogger. I was doing a review for the Oska Pulse hoping to see a benefit with fibromyalgia during three months, which I certainly did… but I have also seen improvements with migraines. So I think I should mention it on my migraine blog as well.

What is the Oska Pulse? Well, it is an external stimulation device designed to relieve pain, muscle stiffness and inflammation through pulsed electromagnetic field technology (PEMF). It promotes recovery for all types of pain and is drug-free.

 

Where to purchase? Price?

You can purchase Oska Pulse at OskaWellness.com. The cost is $399. With my Brainless Blogger discount enter BRAIN in the coupon code and get 5% off.

Return policy?

There is a 90-day money-back guarantee.

Benefits:

  • non-drug treatment
  • an external device, so no surgery to implant it.
  • portable and I can bring it with me anywhere anytime
  • It has a band so I can attach it do my shoulder or back or knees as the need may be. Although for migraines I just lay down with it by my head.
  • Chargeable
  • Runs on 30-minute cycles and turns off by itself.

 

Some Research

“Treatment of migraine with pulsing electromagnetic fields” involved 42 subjects had treatment 1 hour a day for 2 weeks. 73% reported decreased headaches (45% a good decreased and 15% and excellent decrease). 10 went on for an additional 2 weeks of treatment. All showing a decrease in headaches (50% good, 38% excellent).

My Results

So it took a bit to see any results in the migraine area. I use it consistently around 7-9 times a day to start for three months and then now down to 5 times a day. On the head area and body. I have had migraines for 20 years so they are pretty ingrained in me, I assume people who are episodic or with a little less time under their belt would see results sooner than I did.

What I am beginning to see is a decrease in intensity. Some decrease in frequency; I am daily but I have, indeed, had migraine free days. But mostly it is the intensity that is what I have noticed. First, it was a delay in the migraine start time… like later in the day. Then just lower intensity. Some days so low I would be hard pressed to call it a migraine without the other obvious migraine symptoms. Instead of my usual 7-9 daily range, it is 4-9, with the hormonal ones being the highest in there as they, as per usual, don’t respond to much of anything.

Secondly, and I can only assume this is because it is helping with intensity, it is also helping with one of my most problematic symptoms of late: relentless persistent nausea. For two years now that nausea has plagued me. I have eaten zofran like candy with gravol. And peppermint tea and ginger. And I lost 25 pounds because I could barely eat and struggled to keep anything down. 25 pounds of weight loss is a lot for someone with hypothyroidism. My doc wasn’t sure it Was the migraines and tested me like nuts for this random weight loss. Anyway, the Oska Pulse knocked it down about 70%. I take about 1 zofran a day or one 12 hour gravol to managed the nausea. It is such a profound relief to be able to manage that now. And eat. And actually have an appetite.

Anyway, it is helping me at work since work always increases pain. Such is life. So instead of hitting really high points and needing a lot of medication to just get through and crashing when I get home, I am more of a mid-range and getting through with little to no medication.

I am on botox, but only the first round and as a previous non-responder I do not respond to the first round and maybe not at all. At my last appointment when it hadn’t done anything yet my doc wasn’t very optimistic. But I am going for another round anyway. So the results I have been getting are unlikely to be that. Also I ran out last month as I am late to get in for the next round, so actually shouldn’t be responding at all at this point. Nevertheless, I believe in all avenues of treatment so I am going to do Both. Other things I currently do for treatment are magnesium oil, B vitamins, ice, Japanese mint oil topically and exercise. Medication: topamax and relpax.

 

 

Mental Health Awareness month: Depression and migraines

There is no such thing as pain without emotion. Pain comes with an emotional reaction. Often with chronic pain depression and anxiety. (2)

With migraines, we are three times more likely to develop depression.

This is notthe lifestyleI ordered

And we have a higher risk of suicide as well, even factoring in the depression.

This week is mental health awareness week and I think depression is an important topic with chronic migraines specifically. With chronic pain, we tend to have this belief that the pain would make anyone have troubles coping. That anyone would be down. Frustrated. Have dark moods. And depression, if we acknowledge to ourselves it is even that. We say everyone must feel like that sometimes… because of the pain. Indeed, pain itself is a suicide risk factor all on its own and it is a risk factor with migraines aside from depression… because suicide is what happens when we exceed our coping strategies and have no hope in resolving that problem. And that situation is something chronic migraineurs find themselves in often. But we also blame the depression on the pain, feeling it is normal to be like that with pain. In fact, depression associated with a medical condition like chronic pain… is a type of depression. But it is depression. And it can be dangerous if it is not treated along with pain management. If the pain is out of control the depression will respond to that. So both need to be effectively managed at the same time. It is my belief the depression treatment will not be very effective if it is therapy based if the pain isn’t being managed at all. When it is depression associated with chronic pain that is. You have to show there is some Hope in pain management. I am all for therapy though. Very valuable for this type of depression because a therapist that

In fact, depression associated with a medical condition like chronic pain… is a type of depression. But it is depression. And it can be dangerous if it is not treated along with pain management. If the pain is out of control the depression will respond to that. So both need to be effectively managed at the same time. It is my belief the depression treatment will not be very effective if it is therapy based if the pain isn’t being managed at all. When it is depression associated with chronic pain that is. You have to show there is some Hope in pain management. I am all for therapy though. Very valuable for this type of depression because a therapist that specializes in chronic pain can help with the depression and with coping with the pain, and how they work together and tangle together. And oh, how they tangle together.

Sometimes depression isn’t depression related to a condition, sometimes it is Major Depressive Disorder and ignoring it can be dangerous. It can lead to suicidal thoughts and actions even without the risk factors of the pain and migraines. This is the type of depression I was diagnosed with. Actually did exactly what I said, ignored it for years because I thought it was the pain. Just the pain causing it and I could deal with it. But it wears on a person. Gets the best of them. And going to the pain clinic, seeing the pain psychologist and ultimately being put on Abilify (I have severe adverse reactions to antidepressants) was the best thing that ever happened to me. Trying to cope with pain while fighting your brain is a difficult battle every day. Makes it twice as hard to cope. It is a heavy burden to bear. Having it lifted enough to deal with it effectively makes me able to use all the strategies I need to cope with the pain. Depression doesn’t just make you fight yourself mentally and emotionally. It saps your energy and motivation. You have strategies and habits you want to maintain… but then just can’t find the will to do them. Or even why. Why bother? What ever changes? What is even the point? All those thoughts happen. But every bit counts in a routine with pain, as we all know. Ice helps. Magnesium helps. Vitamins help. Meditation helps. Medication helps. You add all the things that help and you get something that helps you manage your pain.

Management of our comorbid mental health conditions is vital. There is no shame in it. There shouldn’t be anyway. There is the stigma. There is even doctor stigma. There is so much stigma it is insulting to me and to society as a whole. I have been pretty insulted by the stigma myself. But that is on them, which is why we need awareness. But don’t you feel shame just because of that stigma. 1 in 5 people will have mental health problems in their life. That is a lot of shame if people expect us to feel that. And we have no reason to. Our neurtransmitters are a little out of sorts is all.