The prevention #MHAM #MHAMSMC

Migraine and Headache Awareness Blogging and Social Media Challenge

What has worked for you for Migraine and/or Headache prevention?

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  1. Sibelium: for the vertigo from vestibular migraines
  2. Oska Pulse: for intensity and frequency of attacks
  3. Botox… unknown yet, but I’ll put it on there because it is my new trial
  4. Topamax: To a mild degree.

I would probably add in other preventative things like:

  1. Meditation
  2. Exercise
  3. Supplements

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

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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.

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.

 

Migraine Awareness Month #MHAM

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June is migraine awareness month. And so with it the campaign to raise awareness about migraines.

You can join in with this social media campaign HERE. It can be run through Facebook, twitter or a blog. Let’s all join in and share awareness about important migraine and headache awareness information.

It is prety important to me. I have had migraines since I was twenty and most of that time has been chronic due to central sensitization. It is pretty comorbid with hypermobility syndrome and Fibromyalgia; I was born with hypermobility syndrome and had FM pretty early as well. However, migraines were a beast that broke the camels back as it were. The pain was relentless. Daily. Unbearable. Unmanaged. On top of the existing pain. And how to cope and treat that has been a long ardous journey it-itself complicated in the last several years Major Depressive Disorder which was recently treated with medication (thankfully).

I am still chronic and may be for a long time, although I like the new research coming out. But I have had some progress with recent treatment that has made the pain much better to deal with. And I have had pain mamnagement at the pain clinic. Treatment for the depression. Things progressed after years and years of stagnation, due to my poor response (lack of) to preventatives and therefore lack of treatment altogether. And my poor response initially to botox. I am doing botox again, as the protocol is different than when I did it… back in the day. Another massive difference, for me, is using the Oska Pulse and external pain device I use for all my chronic pain that has significantly reduced my migraine intensity and somewhat the frequency as well. I was pretty astonished by my progress with this although I know these external stimulation devices are pretty effective. So I am glad I gave it a go. It has made such a significant difference in my pain management lately. (I have a discount code for that if you are looking for a external device yourself. Just type in BRAIN to get a discount). Anyway, as we progress with these treatments, lifestyle changes and supplaments we find methods to cope. But, man, I had like 15 years of pure survival mode. Trying one med, fail, trying another, fail, trying two for one, fail… endless. Wish this progress could have been a wee bit faster. That is not to say it is all easy street as is. With more than one chronic illness it is a constant process. But progress… is a beasutiful thing when it comes to quality of life.

When I reflect on that progress it is pretty awesome indeed compared to where I was at. And I’ll take that.

But awareness is pretty important for that fact. This disease is Complex. The Impact is severe. When I say 15 years where survival mode, I mean it. Not saying I tried every medication on the market… but it felt like it. And non-responsive. That is how complicated it can be. Not counting the complications of symptoms. And those can be life altering. I wasn’t able to drive because of vertigo. Which I am treated with the one medication that Does work, for vertigo (Sibelium… not available in the States). And with progress I am still chronic, just with better quality of life, pain management and coping.

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

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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

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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.