The prevention #MHAM #MHAMSMC

Migraine and Headache Awareness Blogging and Social Media Challenge

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

6a00d8341ce97953ef01b8d28550f8970c-800wi

  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.

6a00d8341ce97953ef01b8d28550f8970c-800wi

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

Meditation is good for the brain.png

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.

6a00d8341ce97953ef01b8d28550f8970c-800wi

 

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:

The Migraine Manual.png

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

12.01.19 _ 8AM

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.