Day 30 Recap: WEGO last day of posting!

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?
 It has been a pretty awesome experience. I have definitely made note of a few bloggers that I am now following on twitter, or their blog or on tumblr now as a result. Which is great. From the resources shared I have added to my own and that is also awesome. I think we have learned a great deal from each others experiences and shared our own stories. Made connections. Got through some interesting prompts that made me think.

I enjoyed all the Wordless Wednesdays... they were fun and interesting to do... as well as see.

My favorites were:

Day 4 Sharing Resources  I found this just very useful

Day 6 Letters I think writing to our illness is a great idea... get your rant on, or express yourself.

Day 7 Sensationalize The 'say what?' I can't believe someone said that to you? We have all had those. It was great to read other peoples.

Day 8 Animals This one was pretty creative and people chose some pretty cool choices for many reasons. A cool prompt.

Day 15 Sharing Commenting on someone else's post to show that they inspired you... I loved this one. And my post really was something that a lot of people with chronic migraines can relate to so this was a great one.

Day 18 'I take it back' This one is pretty important to me because I wrote about words my employer used that helped trigger my suicide attempt... but to me it reflects back on my volatile work situation and the stigma against chronic pain, as well of course, as the devastating impact of chronic migraines and their impact on me... and many others.

Day 20 Burnout Another great prompt because we all have felt it and tried to learn to avoid it.

Day 28 Must follow I like this one... I hope to find new people to follow as I check these out!

 Describe your HAWMC experience in one word!


Day 29: Congradulations! A little about me-ness WEGO 30 posts in 30 days

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!
Huh. Hmmm. I'm pretty darn good at being modest so... there is that. I'll tell you what I like to do and you can take from that what you will! (okay after I wrote this I noticed my likes resemble my likes but there are distinct differences even if they have a similar format!)
I like fantasy fiction writing and not too many people know that I write novels and publish ebooks. I don't talk about it often and publish under the pen name Michelle Mythe. You can check out the ones I have available on Smashwords if you want in a variety of formats for Kindle, html, pdf, epub and sony. This is actually a great pain distraction for me and something I enjoy immensely. Something about the escapism I suspect since I love to read fantasy fiction as well... in fact I read so much I likely spend more on books than I do on clothes, shoes, make-up combined and tripled. And writing it I can create the world and the characters and dive right in. There are times my illness gives me inspiration in fact. And another that I am doing an online blogathon before I decide whether to publish or not, I wrote also years ago, the form of magic the main character uses is visually based on auras I see... visual snow... that can be read for free as I post on a blog designed for that purpose called The Hermit. A few novels I am working on are more inspired by chronic pain than migraine auras.  Anyway, I like self-publishing ebooks because I can control the price and if my migraine brain put in a typo that my migraine brain did not see when I edited repeatedly, spell checked and grammar checked... well then when I review it later, which I do once it is out of my mind, then if I find errors I can simply upload a new version. Usually to Smashwords first since it hits all formats and then I to my Kindle and Lulu versions when I have time.

I also have a Master is Philosophy and some people know my migraines went nuts around that time, that my FM was not treated then either, that the combo prevented me from going for my Phd... and also that when I took a year off to potentially resolve this it actually got quite a bit worse due to a job choice on my side. Such is life. Obviously though it is still something I have a strong interest in or I would not have perused it. You might see a theme starting here... but anyway sometimes I post old papers or write new ones and post them on Hub Pages. There are some older health articles there as well as I sometimes will post longer health articles there and then link them to my blog, which I have a few in process.

I also freelance write and do so regularly for for Fibromyalgia, which is important to me. It keeps me up to date on the research and gets me involved in looking into the research, new things and so forth, as well as sharing the information. Examiner gave me the opportunity to write about a topic that is very important to me and to do something I love to do which is researching and writing. I would do more freelance writing in the health area if I could find the right platform. Perhaps while I am off work I will look for more such opportunities. 

As you can see it is all about research and writing for me. Writing is how I express myself and how I engage the world. I would do it without an audience but I certainly seek connection and as well as knowledge. It is why I started blogging as a main way to express myself and connect with others. If I'm not writing here as you can see... I'm writing elsewhere about the other interests I have. I like to say those three things are separate interests but the sort of resolve around that one skill-set don't they? But fiction is creative, philosophy is abstract and theoretical and freelance writing is more factual. Also... they don't interfere with more core hermit lifestyle.

Day 28: Must follow Facebook Pages: WEGO 30 posts in 30 days

Create a must follow list for your community on a single social network. Share your top 5-10
tweeters, blogs, or Facebook pages.

I'm going to stick with Facebook Pages. We already discussed resources and people we followed on twitter. People can see the people I follow on blogs here and if the go to my Tumblr the blogs I follow... all awesome for various reasons. But pages you can't see and there are some awesome ones out there.

Migraine Misfits-  Is a Facebook page where we post migraine research, resources, humor pictures, inspirations pictures. We want to promote awareness of migraines and support all those with them. I am one of a few people that do some content there, but there are a team of us.

Making Invisible Disabilities Visible This is my page so... I'm included it. My blog post automatically link to it. I also post articles of research or articles I find interesting. I add in humor pictures and inspirations pictures of course.... we all need that sort of thing. I also post my fibromyalgia articles on here. Generally I stick to topics of migraines, fibromyalgia and chronic pain in general. However, I will write about other chronic pain conditions, treatments when I come across research.

Visual Snow  Visual Snow Facebook Group... the only place of Facebook for visual snow, so it is a must follow for visual snow. And an awesome group. It is a group... but there isn't a page, so I'm adding it to the list.

Pain Puppets AnonyMooses a great page that posts articles on a variety of topics and illness.

Voices of Fibromyalgia Support page for fibromyalgia. They have a radio show as well.

Surviving Chronic Pain

Chronically Awesome Foundation A non-profit organization helping provide support and advocacy to people with chronic illness. I just landed on this one but have checked out there site and they have quite a few resources to check into and I support that sort of cause a great deal.

Fibro Fighterz A large fibromyalgia support page.

Day 27: Titles- if I were to name some book titles this would be them: WEGO 30 posts in 30 days

If you wrote a book about your life, your community, your condition, or your Health Activism
what would you title it? Come up with 5 working titles.

Titles for fibromyalgia and migraines
1- Brain on Fire: when migraines and fibromyalgia merge
2- I see Sparkles: The persistent migraine aura
3- Brain of Pain: Fibromyalgia and a brain designed for pain
4- Dualism: Me and That Damned Body
5- Misfiring Brain: chronic migraines, persistent migraine auras and migraine associated vertigo working together to distort your reality.

And here are some migraine books on my reading list recommended by Diana Lee

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache

The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health

The Woman’s Migraine Toolkit: Managing Your Headaches from Puberty to Menopause (A DiaMedica Guide to Optimum Wellness) by Dawn A. Marcus M.D

Living Well with Migraine Disease and Headaches: What Your Doctor Doesn’t Tell You…That You Need to Know by Teri Robert

And I would recommened for migraine awareness:
Migraine Expressions. The artwork is vivid and sometimes even tormented. There is something about artwork that can just tell a story so well. The poetry is full of imagery and compositions that really show a connection. I absolutely love some of them. The essays, so far are very interesting. One has the perspective of a woman living with a man who has chronic migraines, which was very revealing to me... as she had described is a pain she cannot reach, cannot sympathize and must let him handle it... and that he forgets conversations, his personality is muted and he is an absence of what he was. And of course my essay "To all those with Migraines: I too share your brain cramps", on pages 28-30. It is good for a giggle trust me. Anyway, this does bridge that gap of personal experiences and the subjectivity of pain. I saw myself reflected so many times. I like that, that others know my experience, have lived it and are surviving it. 
-Betsy Blondin Editor

I'm sorry to say I don't have any other recommendations. It is been too long since I have read any books on migraines and FM... since I was diagnosed in fact. Since I realized they said the same things or worse contrary things. I would like to read some on actual research and facts though and will look into others recommendations.

Pacemaker for the brain that switches off chronic pain- what an awesome idea

Pacemaker for the brain that switches of chronic pain An implant deep in the brain... but not for a specific injury, for widespread pain... and to do that, they had to target where we feel the emotional unpleasantness of pain... aware of the pain but not bother by it with this pacemaker active. It has a external control that can increase the 'volume' as needed. It is being used for stroke patients currently. Still... how freaking awesome is this. And I want one. Just saying. We all know simplistically speaking pain has two parts. There is immediate suffering, which is the physical pain itself, and we do what we can with the medications and treatments to handle this but with chronic pain there simply are limitations. Then there is secondary suffering which is the reaction to pain, which is the emotional response and how we cope with the pain onslaught and stress on the body as well as stress in life and how that affects our thinking and how we think about pain... and this is a big deal, a very large factor. Bleep that out and yeah how great would that be? To not be Bothered by it?

"When it’s stimulated, the pain is replaced by a more pleasant, tingling sensation — it’s not clear why, though it’s possibly because DBS prompts the release of mood-boosting endorphins. This helps 70 per cent of the people we take on.
However, if you’ve got widespread pain across a large part of your body — particularly common after a stroke — the area of pain is too big to be targeted in this way.So, rather than treating the pain directly, we recently decided to look at taking away the emotional unpleasantness of it. This means switching to the anterior cingulate, the part of the brain that relays sensation to another area responsible for emotion.Targeting the cingulate has already been used for patients in pain from terminal cancer — if you put an electrode there and heat it they feel immediate relief, but the effects wear off after a while.I thought if we were to implant electrodes — with control over the voltage and the pattern of the stimulation — there could be some mileage in it. We’re now convinced it works. Within a day or two, although the patient is still aware of the pain, it doesn’t bother them.It has a similar effect to morphine, without making you sleepy. But patients can still feel normal pain, for example if they were to hit their finger with a hammer — so the protective nature of pain is still there.Chronic pain is very common, but you wouldn’t put electrodes in your brain for a bit of back ache. However, 20 per cent of stroke patients suffer from intractable pain that hasn’t responded to treatment, and for them DBS could help."

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Day 26: Pain Free Pass WEGO 30 posts in 30 Days

What’s a day that you wish you could have used a pain free pass (either in the future or the past)? How would being pain or worry free impact that day?
My days beings so full of pain have a 'sameness' to them that a hermit gets when they are not able to do much other than what is essential and necessary. So no day sticks out in my mind except holidays. Every holiday I would have Loved to have a pain free pass... because I would have been able to Do some of the things I wanted to do but could not, or done more things. Instead I have to really pace myself and when we go places I can never walk far, or for long and it has to be at my pace. We can never do many things, because 'too much to handle' comes to mind.
I in fact have a short two day stay in the mountains coming up real soon. And I wanted to go on a guided tour of the ice caves. Three hour trip, two hour walk. My spouse just gave me this look, shook his head and said "Yeah, no, you can't walk for two hours on a tour like that' And I had to acknowledge he was right. It would not be at my pace for one, not in a group. There would be no rest if needed either. And it would not be a stroll on flat ground. And I have had this back thing in my lumbar spine that can flare up rather quickly from walking these days which would really hurt really fast and be very embarrassing to be stuck there... worse than the fact FM can get worse as you go until you are walking very slowly which would also be embarrassing. But it looks so absolutely stunning. And I would love to do it. So if I could be entirely pain free... I would do it in a heart beat... and then after I would go on this trail I heard about that goes up to the glaciers and is supposed to be awesome, but is not an amateur trail and is a 4km hike... doing both in one day? Not even one would be possible. But I would if I could.

Migraine aura duration.... Indeed

"Background According to ICHD-II, and as proposed for ICHD-III, non-hemiplegic migraine aura (NHMA) symptoms last between five and 60 minutes whereas hemiplegic migraine aura can be longer. In ICHD-III it is proposed to label aura longer than an hour and less than a week as probable migraine with aura. We tested whether this was appropriate based on the available literature.
Methods We performed a systematic literature search identifying articles pertaining to a typical or prolonged duration of NHMA. We also performed a comprehensive literature search in order to identify all population-based studies or case series in which clinical features of NHMA, including but not restricted to aura duration, were reported, in order to gain a complete coverage of the available scientific data on aura duration.
Results We did not find any article exclusively focusing on the prevalence of a prolonged aura or more generally on typical NHMA duration. We found 10 articles that investigated NHMA features, including the aura duration. Five articles recorded the proportion of patients in whom whole NHMA lasted for more than one hour, which was the case in 12%–37% of patients. Six articles reported some information on the duration of single NHMA symptoms: visual aura disturbances lasting for more than one hour occurred in 6%–10% of patients, sensory aura in 14%–27% of patients and aphasic aura in 17%–60% of patients.
Conclusions The data indicate the duration of NHMA may be longer than one hour in a significant proportion of migraineurs. This seems to be especially true for non-visual aura symptoms. The term probable seems inappropriate in ICHD-III so we propose reinstating the category of prolonged aura for patients with symptoms longer than an hour and less than one week"

I have had visual auras, not associated with my persistent migraine auras, last longer than an hour before the migraine started and sometimes into the migraine itself. Sensory such as tingling does not seem to last more than an hour but I have never clocked it, the numbness on the other hand definitely does. The hearing aura, of going in and out, or muffled definitely can last longer. I think we all know the aphasic aura can last longer. It really seems to depend on how the migraine develops. Some migraines are very fast onset and you fly through the initial stages and some are not. I think an hour is just that typical guideline they give.

Day 25 Learning WEGO 30 posts in 30 days

Share something you learned from another Health Activist (that everyone should know!).
I have learned many things from different people with the same condition and others with different diseases.I have learned in some ways we are all the same. We have these illness that we cope with every day that affect our lives, our families, our jobs. We create these facades of wellbeing to function in the world and we have invisible disabilities and face stigma because of them. That we all desire the connection to others and to spread awareness about our disease. Yet we cope, we try to remain positive and share ways to adapt to our health challenges and share jokes to make each other laugh. So many different diseases but so many similarities. That I have seen from us as a whole.

I have happened upon some new resources from a few of you. New tricks with Pinterest from some of you. And I hope I learn more.

Share something you’d like to teach other Health Activists.
I don't know if I have any pearls of wisdom. 

I can't give people advice on how to treat their chronic migraines because people have different types and even those with migraine with aura do not experience them the same way or have the same triggers or same issues. It isn't a do this or that situation. It is do what works for you. Which is tricky business. Figure out what triggers are your triggers by mapping your own migraines. Which is tricky business. Some preventatives will work for some people and be horrible for others or just noneffective for others. Alternative treatments, lifestyle changes, botox and many other methods of treatment can be effective for many and many of us struggle to find some combination of many things to find something that will work in some way. What I can say is ensure you have a doctor who you can communicate with properly. Don't keep a neuro who is not doing anything for you. Take care of your emotional health and don't be afraid to utilize a therapist who may be able to help with that and other new coping strategies to manage and cope with pain. Sometimes chronic migraines will never go below episodic, but it is possible. If you currently are having a problems coping with the pain and other symptoms sometimes it isn't a good idea to constantly think  to 'push through the pain' until the weekend, till you see your neuro, until that preventative does something... sometimes it is a good idea to evaluate your work situation, work any compromises you can, maybe consider part time, disability as well as pain clinics, alternative therapy and psychologists. We do what we can with what we got, but when nothing is working for a long time we do what we must to survive because surviving is the most important thing of all.

It is the same with fibromyalgia... what works with one person when it comes to medication, diet and alternative therapy won't necessarily be the treatment for another. What I think is the most important thing to remember with fibromyalgia is that the syndrome itself varies. There are levels of disability and symptom severity. Much like there can be a difference between someone who experiences episodic migraines to someone who experiences chronic migraines so can there be a wide spectrum within FM to those disabled by the syndrome to those able to work and cope on various levels with the syndrome. I know sometimes people with migraines will make comments 'if you had a migraine you would not be doing such and such' but of course when you have chronic migraines... you learn and have to function on some level so you do many things with migraines that most people would obviously not do. And sometimes people who have learned to cope with their level of fibromyalgia don't always comprehend someone who can be completely disabled by it. I am not myself disabled by it such that I was able to work full time and cope with symptoms, not counting the comorbid conditions like the chronic migraines which obviously did cause me to stop working frequently for durations. However, I know many people are not able to work full time or are completely disabled. In fact the reason I was unable to get disability insurance on my mortgage was simply because I Have FM and statistically they believe I have a higher chance of being disabled from it... which means a higher risk of them having to payout on it, and ergo, declined... ironically migraines are the ones that caused disability in me, but whatever. Point being it presents differently, progresses differently, some people develop different comorbid conditions with it which complicates things and symptom severity is vastly different... some people like me have insane sleep dysfunction, others more cognitive impairment, others more severe IBS and digestive and stomach issues.

And this is why I have a hard time discussing opiates and FM. We know from research that our brains don't respond like a normal person to opiates who would take them and get a good painkiller response... we don't and would need more to get an effect. And there is a suggestion over time it increases our sensitivity to pain due to how FM works, which is rather counterproductive. So it seems like this would be a bad idea to be using regularly. Yet I think as an occasional sort of thing... like a migraine rescue med, it sure would be handy. Like before I had Lyrica, which has made me more functional, those flare ups were very nasty and a painkiller in times just to get from A to B would have been nice in those extreme situations. It would be handy, but not often something we are offered certainly... we often just have to deal and move very slowly and not participate in things where we cannot use 'our' speed and 'have breaks'. And obviously we are pretty limited in other things because of the pain it causes which means exercise must be a very slow increase indeed. But I'm thinking of my level of pain and flare ups of pain. Someone with more severe baseline pain and disabled by FM may be on opiates regularly to function... and I cannot judge them for the use of opiates to be able to Function through pain on a daily basis if other medications do not help at all, given they statistically help little of us, and other medications have been tried or are Also used. Just because it is not a great solution for FM, like it isn't an awesome solution for chronic migraines, doesn't mean it isn't the only solution in some cases just for Pain Management. Maybe while they are figuring something else out. Maybe for the short term. Maybe because that is all there currently is for treatment. No one wants to be dependent on opiates just to get by... given the huge stigma in the medical field with them. So we are all in different places and different treatments are appropriate for different people with different medical histories. 

Trying to plan a short trip to the mountains... and... not so easy

We are going for a couple a days to a cabin near Jasper. Just to chill and relax. Take in the scenery. Since it is only a couple of days don't really want to do too much and the season is the time of year where there isn't too much to do.

There are things you can do when you go to the mountains that sound cool... like this canyon ice walk tour. Sounds awesome. Two hour walk time. I was thinking maybe conceivable. My spouse looks at me, shakes his head and says 'two hours? I don't think that will work.' I thought sure it would if I got to take awesome pictures. Because I have been known to walk hours and ignore the accumulating pain. Of course generally that is with breaks. And then I remembered that is My pace... not others and sometimes My pace gets substantially slower and slower which would so not work in a group situation. That could be very embarrassing. Then I remembered the whole spinal lumbar back issue and it occurred to me... two hours would be insanely hard to complete. So... I guess not. Sucks balls when you realize you would need someone skilled to take you on such a tour but unless they had a tour for really slow people and had sufficient breaks... not for your sort.

I'm thinking the gondola that takes you up to a mountain and spectacular views where you can stroll about as much as your gimpy body can allow. A nice drive about to take in some good scenery. And maybe check out one of the open trails that is said to be quite easy and I can go as far as I can... nice walk at my pace, sounds nice. Then there is a gallery in Jasper I would not mind checking out. That all sounds sufficient to me. I'm still checking the sites... because I think some of the glaciers might be worth a drive through this time of year if I plot us a course.

And now get into all the planning that needs to occur with even such a short trip.

Electric stimulation of brain releases powerful, opiate-like painkiller- trigeminal neuropathic pain

Electric stimulation of brain releases powerful, opiate-like painkiller
"In their current study, DaSilva and colleagues intravenously administered a radiotracer that reached important brain areas in a patient with trigeminal neuropathic pain (TNP), a type of chronic, severe facial pain. They applied the electrodes and electrically stimulated the skull right above the motor cortex of the patient for 20 minutes during a PET scan (positron emission tomography). The stimulation is called transcranial direct current stimulation (tDCS).
The radiotracer was specifically designed to measure, indirectly, the local brain release of mu-opioid, a natural substance that alters pain perception. In order for opiate to function, it needs to bind to the mu-opioid receptor (the study assessed levels of this receptor).
"This is arguably the main resource in the brain to reduce pain," DaSilva said. "We're stimulating the release of our (body's) own resources to provide analgesia. Instead of giving more pharmaceutical opiates, we are directly targeting and activating the same areas in the brain on which they work. (Therefore), we can increase the power of this pain-killing effect and even decrease the use of opiates in general, and consequently avoid their side effects, including addiction."
Most pharmaceutical opiates, especially morphine, target the mu-opioid receptors in the brain, DaSilva says.
The dose of electricity is very small, he says. Consider that electroconvulsive therapy (ECT), which is used to treat depression and other psychiatric conditions, uses amperage in the brain ranging from 200 to 1600 milliamperes (mA). The tDCS protocol used in DaSilva's study delivered 2 mA, considerably lower than ECT.
Just one session immediately improved the patient's threshold for cold pain by 36 percent, but not the patient's clinical, TNP/facial pain. This suggests that repetitive electrical stimulation over several sessions are required to have a lasting effect on clinical pain as shown in their previous migraine study, DaSilva says."

You can totally electrocute my face if that would make it feel better.  Not that I have trigeminal neuropathic pain (TNP) mind you... just a lot of facial pain and jaw pain from the chronic migraines, but nonetheless I find the research in this area of tDCS intriguing.

Day 24: Wordless Wednesday: Pinterest WEGO 30 posts in 30 days

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

I'm fairly new to Pinterest but I do post my health articles there and my Somecards. The ones I recently posted would be...

Source: via Nikki on Pinterest

 Which is a pin (wikimedia commons picture) based on this article: Study suggests fibromyalgia pain is caused by small fiber neuropathy 

Migraine patients find pain relief in electrical brain stimulation

Migraine patients find pain relief in electrical brain stimulation

This is not something new to the treatment of pain at all (Immediate effects of tDCS on the μ-opioid system of a chronic pain patient) and has in fact been used for all sorts of chronic pain from firbomyalgia to neuropathic to pain from chronic injury. The idea being to find the location in the brain that has been rewired by pain, pulse in this electrical current, and the areas can be in effect changed to respond differently over the treatment period. For certain types of injuries the research has been promising and it will be interesting to see if it can be useful in conditions where more areas of the brain are being stimulated and affected, such as migraines... the area being stimulated that seems to help with this treatment is the motor cortex.

"Researchers from the University of Michigan School of Dentistry, Harvard University and the City College of the City University of New York used a noninvasive method called transcranial direct current stimulation (tDCS) as a preventative migraine therapy on 13 patients with chronic migraine, or at least15 attacks a month. After 10 sessions, participants reported an average 37 percent decrease in pain intensity.
The effects were cumulative and kicked in after about four weeks of treatment, said Alexandre DaSilva, assistant professor at the U-M School of Dentistry and lead author of the study, which appears in the journal Headache.
"This suggests that repetitive sessions are necessary to revert ingrained changes in the brain related to chronic migraine suffering," DaSilva said, adding that study participants had an average history of almost 30 years of migraine attacks.
The researchers also tracked the electric current flow through the brain to learn how the therapy affected different regions.
"We went beyond, 'OK, this works,'" DaSilva said. "We also showed what possible areas of the brain are affected by the therapy."
They did this by using a high-resolution computational model. They correctly predicted that the electric current would go where directed by the electrodes placed on the subject's head, but the current also flowed through other critical regions of the brain associated with how we perceive and modulate pain.
"Previously, it was thought that the electric current would only go into the most superficial areas of the cortex," DaSilva said. "We found that pain-related areas very deep in the brain could be targeted."
Other studies have shown that stimulation of the motor cortex reduces chronic pain. However, this study provided the first known mechanistic evidence that tDCS of the motor cortex might work as an ongoing preventive therapy in complex, chronic migraine cases, where attacks are more frequent and resilient to conventional treatments, DaSilva said.
While the results are encouraging, any clinical application is a long way off, DaSilva said.
"This is a preliminary report," he said. "With further research, noninvasive motor cortex stimulation can be in the future of adjuvant therapy for chronic migraine and other chronic pain disorders by recruiting our own brain analgesic resources.""

Virtual reality 3-D brain helps scientists understand migraine pain

Pretty cool if you ask me. 3D imaging of the brain during a migraine attack.

"The 3-D brain is a novel way to examine data from images taken during a patient's actual migraine attack, says DaSilva, who heads the Headache and Orofacial Pain Effort at the U-M School of Dentistry and the Molecular and Behavioral Neuroscience Institute.
Different colors in the 3-D brain give clues about chemical processes happening during a patient's migraine attack using a PET scan, or positron emission tomography, a type of medical imaging.
"This high level of immersion (in 3-D) effectively places our investigators inside the actual patient's brain image," DaSilva said.
The 3-D research occurs in the U-M 3-D Lab, part of the U-M Library." Hologram-Like 3-D Brain Helps Researchers Decode Migraine Pain

Day 23 Technology: gizmos and social media: WEGO 30 posts in 30 days

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health.

There are some pretty good migraine and chronic pain recording apps on the iPhone which I rather like and I find easier to use than the ones that used to be on the computer... since I can just pick up the phone rather than have to go to the computer and log into the system. And I can track my medications and appointments on there as well.
I wish I could have a little portable brain scanner. Make 3D images of the brain so doctors could see the migraines or see the changes due to FM over time. That would be pretty awesome. Even better if they could develop something so that it could show how I literally see out of my eyes... all the distortions I see from my persistent migraine auras and visual snow. And then I could give that little video to the neuro and say This is how I see. The reason for that being while I try to explain how serious those auras are they don't seem to understand... so I am the one who ends up trying to find different ways to help myself see better and trying not to drive, but obviously if my medical condition overall is never taken seriously and I go back to work then I do drive. On bad days that is not a good idea, on good days I like to think I can see past the distortions and ignore them but the fact is they are there and a constant distraction. Certainly driving at night is out of the question. So a device that could show my visual reality to someone else would be valuable. Plus they would make some awesome videos for migraine awareness given all the weird auras I get.

Write about how your life would change if there was no social media.
I am old enough to remember this actually. So there. I have had a blog for a long time and in the beginning you are communicating with yourself and then just a small select group of people. I have had chronic pain, FM and chronic migraines, before social media existed and that creates a lot of isolation right there because over time I had to cut out a lot of my social life in order to function on some level at work. And there was no local support groups, had there been I wouldn't have had the extra energy to go to them. I used my blog to reach out beyond myself to others to get past some of that isolation and have that sense I was not alone. Also message board and forums... very valuable. Still you have this feeling you are cut off from the world, from your peers because you are so limited by your illness that you cannot make the connections that last and endure that others do... just these short passing acquaintances when your health permits, which for an introvert is fine but does not stop the feeling being alone in a group and the lack of anyone being able to comprehend your particular issues. Social media though gives me a vast resource of connections. Many ways to interact and connect to other people. Many ways to share experiences. More groups and forums. More methods to share and receive information and research. It gathers communities of people and people will then group together, share information, share support and communicate. 

Without it... I would be cut off. Isolated. I am a hermit and I get that. But I have this road for communication when I cannot go out and socialize. When I cannot find people in my area for support. When I cannot leave my house. It may seem like a limited way of interacting but it is extremely valuable if it is one of the only ways you interact. I could live without it certainly. I would write more likely and find different avenues to publish those writings because that is what I do. I just wouldn't have the interactions and the connections in the immediate way that social media offers. I would however still have support through various forums because that I find to be fairly necessary. I value it because it gives me back a little of something I had to give up for one. And I value it because it has a way of bringing together large numbers of people who have the same conditions, or invisible disabilities so I know I am never alone, I know that people will always understand what I am going through and people will also not only comprehend my story but have similar stories.

Day 22: Day to day WEGO 30 posts in 30 days

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism.
Nature inspires me. Walks at night in the silence when no one is around. Walks by the lake, with just the breeze and the water. Going into the mountains and seeing how absolutely majestic it is with the mountains above and the thick forest around me. These things move my spirit and remind me that I am alive. That in that moment I can just Be. Beyond pain, and stress and obligations and social constraints and stigma. I can take in a deep breath and just relax. Know that there is more to this existence than just this illness. And it gives me the strength to carry on. All the Noise sometimes hinders things, but silence and nature soothes me. It fuels my soul and so it fuels my activism because you can't motivate yourself if you are bogged down by negativity let alone motivate others. Sometimes I think we all need to get away from everything and find someplace beautiful to just Be for a while.

Write about the things you couldn’t live without list 10 things you need or love most.
1. My common law spouse.
2. My three tubby furball cats. Frank, Bobby and Charlie.
3. Books. Many, many books. My primary source of entertainment.
4. My family.
5. The Internet for entertainment, research and connection with others

6. My computer or laptop for writing.

7. Sleep... that most elusive creature.

8. Music to sooth the soul and raise the spirits and make me boogie.

9. Medication of course. That necessary evil

10. And all the little things like ice bags and muscle creams and migraine balms.

Fibromyalgia and Growth Hormone treatment

In Overview of fibromyalgia and sleep dysfunction I stated " It can also cause the level of growth hormone in the body to be low as growth hormone is primarily distributed during stage four sleep (80% comes from delta sleep). Lower levels of growth hormone leads to more muscle pain and degeneration. Lack of stage four sleep also causes cognitive impairment or brain fog as well as fatigue and muscle aches." However growth hormone does a little more than this. The point being where we might get our low numbers comes from our sleep dysfunction. I can imagine if sleep is adequately treated such that there is refreshed sleep this might not be an issue but in many people with FM where sleep quality is always an issue the levels might be low.

Growth hormone "produced by the pituitary gland, spurs growth in children and adolescents. It also helps to regulate body composition, body fluids, muscle and bone growth, sugar and fat metabolism, and possibly heart function. Produced synthetically, HGH is the active ingredient in a number of prescription drugs and in other products available widely over the Internet." WebMD

Which might be the inspiration for this study GH/IGF1 axis disturbances in the fibromyalgia syndrome: is there a rationale for GH treatment? "Fibromyalgia Syndrome (FMS) is a frequent idiopathic condition in which patients experience intense pain in specific tender points, profound fatigue and sleep disturbances. Although pain had not account so far in growth hormone deficiency syndrome (GHD) description, symptoms of FMS are very similar; and there is strong evidence of decreased GH secretion at least in a subset of FMS patients. Is there an overlap of the two diseases? A systematic Medline/Embase search for preliminary proof-of-concept trials, but also larger placebo-controlled studies, have shown that GH replacement in low-IGF1 patients can significantly improve some symptoms of FMS and quality of life, suggesting a direct causal effect of GH deficiency. Despite the use of relatively high doses of GH in these patients, treatment seems to be well tolerated. Several mechanisms of action for GH in FMS relief have been suggested, including both central modulation of pain and peripheral musculo-tendinous effects, as already described in classic GHD."

Symptoms of adult growth hormone deficiency are Adult growth hormone deficiency: (I did see they added FM to the list there and one does wonder if that is a case of misdiagnosis or if it is a case of comorbid conditions)
  • Changes in memory, processing speed and attention
  • Lack of well-being
  • Depression
  • Anxiety
  • Social isolation
  • Fatigue
  • Lack of strength
  • Fibromyalgia syndrome
  • Neuromuscular dysfunction
  • Central adiposity
  • Decreased muscle mass
  • Decreased bone density
  • Impaired cardiac function
  • Decreased insulin sensitivity
  • Accelerated atherogenesis with increased carotid intima–media thickness
  • Increased low-density lipoprotein
  • Prothrombotic state
  • Decreased sweating and thermoregulation
 Now, while I find this intriguing because some of us are known to have lower levels, the fact remains... one would really need to have that Verified and know the Risks of growth hormone treatment. Fact is, some people get that treatment to feel good, look young and I've heard it is even part of some weight loss plan.

"Possible side effects of HGH use include:
  • nerve, muscle, or joint pain
  • swelling due to fluid in the body's tissues (edema)
  • carpal tunnel syndrome
  • numbness and tingling of the skin
  • high cholesterol levels
HGH can also increase the risk of diabetes and contribute to the growth of cancerous tumors.
Furthermore, if you get the drug illicitly, you may not know what you are really getting. Because of the high cost, HGH drugs have been counterfeited. If you are not getting HGH from your doctor, you may be getting an unapproved product. You also should speak with your doctor before considering any form of HGH." WebMD

I have heard such massive debates about this because of people using it for other things that honestly it freaks me out a little. Because they don't actually know the long term side effects of such treatments. However, it isn't the same thing when people take it to be 'youthful' and people who take it because they are actually deficient. But again, one would need to verify that and not just start taking it... that seems a way too risky to me. Maybe if I found out my levels were abnormally low I would consider it... but I'm not too keen on cancer, so maybe not... maybe I would just stick to the sleeping pills and hope I get enough HGH that way. Still, an interesting study to say the least. I mean, what if we did significantly feel better and slept better? I think I'd wait for more studies but it is still intriguing.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...