It’s Been Awhile, a song made popular by the rock group Staind


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Happy New Year

Well hello there. Sorry it’s been so long! It’s been a long and very hard time last year. I’ve had some major set-backs that have made some chronic illnesses more severe, and then I’ve had intensive cervical nerve blocks followed by a couple of rounds of ablations to control my Cervical Osteoarthritis and Degenerative Disk Disease which in turn has toned down my Occipital Neuralgia a few notches. Now that has not cured my Occipital Migraines. Not in the least. It just keeps me less suicidal that when I was in 2010-2011 and keeping me from bashing my head in the wall to try to either dull the pain or end it. That idea always sounded like it would make it better for some odd reason. I think fellow Migraine sufferers that have this horrific pain that starts in the back of the head and feels like Satan himself is drilling relentlessly out your eyeball thinks sort of along the same lines. I’ve had 4 rounds of Botox for Migraines this years + the 2 the prior year. I do not think they are being effective. Along with the medication trials, those I’ve had since 1996 since the present time I had a week long migraine 2 weeks ago. Not a really fun time over the holidays.

Migraine-eye pick pain

 

And the Fibromyalgia and CFS has really been deteriorating into the severe mode. My PCP started letting me do Vitamin B12 Injections at home, 1ml every 2 weeks. Then just 2 weeks ago he changed it to every week. He’s hoping this will help for the CFS. If not he was talking about trying a low dose of Ritalin but I don’t want to go that course. My Cymbalta was increased from 30mg to 60mg and added Lyrica back 50mg 3x a day. That helps with Fibromyalgia and Chronic Pain.

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I have been trying to stick with therapy but have had medical issues and medical crisis interrupt my schedule. I hopefully plan on 2015 being a better year as my PTSD and Major Depression are not getting better. And my therapist helps with pain management. My Diazepam was changed from 5mg to 2mg. I take 2mg in the am and 4mg in the am. Helps with my PTSD and Anxiety/Panic Attacks. Yep, those still plague me.

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My SSD comes up for review this coming December 31, 2015. I just happened to come across my SSD Court Decision papers and I emailed my SSD Appeals Attorney what I do. So I’m waiting to hear back. I’m still in constant pain and the severe Fibro pain, CFS and Migraines make it hard to even work at home. I try but I need some help every so often from my BFF of over 30+ years. Very depressing to need so much help.

Migraine zombie

I belong to CMA and a few CMA branch FB support groups. I started my own FB support group: Making all Invisible Illnesses Visible. There are really awesome members in all groups, especially mine. I have pretty cool fellow co-administrators. If not for ALL these groups support this past year, my BFF and my Bible Study Group, I would have lost my mind and ended up hospitalized again. Normal people just don’t understand how bad Chronically Ill people feel. We don’t make this stuff up. We’d give ANYTHING to be more productive!!! It is NO FUN being sick all the time!! We hate this way, WAY more than you normal’s hate it!!! And all we ask for is a little compassion and empathy! Not hatred, sarcasm and spite.

This is all I can write for today. I’m exhausted. The Insomnia has been acting up again. I wish you all Peace, Love and many Blessings. Julie. xoxoxoxoxoxoxoxoxo

http://youtu.be/oT8awm90zl8

“Hard times build determination and inner strength. Through them we can also come to appreciate the uselessness of anger. Instead of getting angry nurture a deep caring and respect for troublemakers because by creating such trying circumstances they provide us with invaluable opportunities to practice tolerance and patience.”
Dalai Lama XIV

The Dark Side


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Chronic Diseases bring out The Dark Side in everyone. The person suffering one or multiple Chronic Illnesses (until they recognize and correct their attitude-if and when they do) family, friends and significant life partners-loved ones, co-workers, bosses, clients (customers) health care providers (nurses, receptionists, doctors, PT therapists, nurse practitioners, massage therapists etc). Anyone and everyone in the public and those in support groups-Facebook, Twitter (etc).

Egos are at play, how people are raised are a major key issue. Were they in a loving, stable, emotionally secure family situation. Or was it unstable, emotionally lacking in love, emotionally abusive by one or both parents. Was one parent an absentee parent-always missing to avoid the other parent due to issues in the marriage-lack of a true loving emotional bond, or to avoid confrontation to the dysfunction family situation due to their “own” dysfunction family upbringing. Or missing due to being the sole bread-winner, death, divorce or non-traditional marriage/relationship as in the past year status quo? Some dynamics in relationships and personalities in people make them seem almost emotionless, backstabbing, unloving, unstable or downright evil.

evil

So why do people act this way? Why do people reject those who are chronically ill? Why do they choose to disbelieve those who are chronically sick? Why do they always put those who are sick to the test time and time again, and yet those who are NOT sick seem to get away with anything like calling off sick from work with hangovers or trivial things, while those who are truly sick are discriminated against enough for employers to legally get away with it. Sometimes to the point of pressuring employees to quit so they don’t have to fire them, getting away with not having to pay unemployment and thus not having to come under fire with breaking any discrimination laws.

That was how I “forced” to leave my job. That and I was indeed becoming more chronically ill at the same time. I do believe my cesspool of a job was triggering my illness to come on at a rapid speed. Not that it wasn’t there before simmering and boiling and occasionally acting up on occasion giving them fuel to toss onto the slow burning fire. But I was a longtime loyal, dedicated, hardworking employee with morals and standards. I did not believe in what had become the new “norm” called brown-nosing instead of actually working. The so-called “team leaders” got their jobs that way instead of actually earning their jobs, and they kept their positions that way, making us peons do the dirty work and they took the credit while they shopped online at Amazon, eBay and checked their own Facebook and Twitter accounts, or texted on their cellphones to each other or their then boyfriends who became husbands or live in significant other half. occasionally we’d have to work out-of-town on “jobs” and on the way home after injuring my shoulder I started to complain of pain. The “team leader” was so busy trying to text her boyfriend whom she must have been afraid was doing something other than what he said he was doing (she was texting him during the “job” too but was I allowed to say anything afterwards-NO) and on my other side was the mother of another team leader who had to stay “mum” as to “protect” the business you know. Well the next business day (this job was on a Sunday) I reported my injury to HR. Well later in the morning I was told that since I didn’t report it ASAP as soon as it happened I could NOT file workman’s comp for on the job injury. When I stated I did complain I was told that lo and behold “no one recalled my saying anything”. Then HR said she had to quote “do what she had to in order to protect the company”.

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So goes to show when someone wants you out of the job, out of their lives or make it as hard for you as they want (intentionally or not) there may or may not be much you can do about it. As for my job as the pressure on me was increased I had my doctor put me on FMLA then Temporary Medical Disability which was extended. I then filed for SSD. I was denied. My husband was against my going on temporary disability and FMLA. I got NO emotional support from him at all as my disease progressed from episodic to intractable daily occipital migraines and panic attacks. He did not and would not understand. Stems back from the childhood he was raised in. This was really brought home again this weekend after he was gone for a week in Florida.

I got a Total Gym Platinum Plus with 8 attachments & 4 DVD’s to duplicate the pulley exercises I learned in PT last year. I have bad Fibro, CFS, Peripheral Neuropathy as well as long-standing Occipital Chronic Migraines, Occipital Neuralgia, DDD, Cervical Osteoarthritis, etc. I CANNOT do strenuous exercise as I’ve told him time and time again. Someone else in his family has fibro and it’s always poor so and so. She doesn’t do anything major around the house-her poor hubby who is a saint does, w/o complaint or thanks does and his health is not that great does so-does he get credit. NO. Does he drop the F bomb when he does so w/o being asked. NO. I have several issues and several food intolerance/allergies and I cannot help it I have chronic diseases that prevent me from doing things-like mowing almost 2 acres-granted I could not do for most of last summer, but SHE has NEVER mowed. But I get hell for not doing a lot and when someone “else” around this house (he) has to do something the “F” bomb goes off like crazy as well as a slew of other blue words and negativity galore. Of course in that household as they were growing up chronic illness was NOT tolerated as 1 child was blacklisted and outcast due to a serious illness (life threatening asthma) by her own mother who raised 2 of her children to hate the 1 who had the asthma, and turned them against the sick one & still to this day blames her OWN daughter for disrupting mommies life with being so sick as a child!! She blamed her for everything-for things that went missing-she must have taken it-even as an adult when she moved out of the house and was never allowed a key, somehow she mysteriously vaporized into the house and took valuable rings (that mother dearest misplaced & later found but no, no that could not be bad sick daughter that disrupted her life took them & must have come in when she wasn’t there & put them back, geese) It’s a wonder she let her live to adulthood! Anyway I’ve been made an outcast also, just to give you and idea why giving you a “taste” of the family history. Anyway my Total Gym isn’t good enough for him so it’s just not good enough so I have to send it back I was told as it was “junk”. Well Bull flipping #hit!! NO #ucking way am I sending it back!! It’s set up on 6 month easy pay. It’s in the convenience of my home so with my CFS I don’t have to worry about falling asleep like I did w/PT on the way home or during my sessions and if I get too fatigued during my workout I can pause and start-up later! I’m tired of making some thick-headed insensitive dense people understand. I will continue and try NOT to be bitter, but I do need my outlet and to vent. Thank you for letting me do that here on my safe haven. But it still feels like a daily battle of good vs. evil.

good angel bad angel

As for social media you come into that as well unfortunately. There is a pecking order sometimes and you come across those who may feel jealous or feel more superior to you and want to push you to your limit or others that you have come to love and admire. And a few years ago if you had asked me if you can build real lasting friendships on Facebook I would have laughed in your face and said hell no. But now I’m here to say you most definitely can. I have met some really amazing people on Facebook through some support groups I have been a part of and I’m still in. One I can speak of as its public but restricted as you can only be invited into is Chronic Migraine Awareness-CMA. A couple of others I’m just a member of are Migraine related are private and by invitation only and I cannot mention those names. They are pretty awesome. 2 groups I am co-administrator on and they are private. There are some really amazing people in those groups and I have made some really super amazing friendships there and some really close bonds the past year or so. I have also had a few clashes with a person or 2 that were not solely about building people up, but about power struggles, superiority, ego bashing, back stabbing-it was almost like my toxic work situation all over again but in cyberspace. Just when you think you find a safe haven……………………………………………… Moral of the story is you can trust but at the same time watch your back and always, ALWAYS trust your instinct. If your gut is telling you something is amiss, trust your gut-it is rarely wrong. Save yourself from an ensuing bloodbath and free-for-all that will be up for public display that is out of your control.

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Until next time sending you all blessings, love, hugs and prayers. Julie

DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and I enjoy sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

Dealing with Chronic Migraine Disease, Depression and tackling the topic of Suicide


gothic

(7-18-13)

Everyone that experiences Chronic Migraine Disease and other Chronic Pain Diseases, know all too well that along the long and bumpy road of Medical Care and Self-Help, there will be many stumbling blocks and pot-holes that we come across and must find a way to navigate and deal with these issues.  For us seasoned Veterans in this ongoing war we should be use to these setbacks, and we do expect them and for the most part we can get around them pretty well. But once in a while you get thrown for a loop and try to struggle to recover and march on. Or rather, ease on down this long and difficult road.

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For those of us who suffer this disease there are many Comorbid Conditions that go hand-in-hand with Chronic Migraine. It could be Fibromyalgia, Chronic Fatigue Syndrome, Depression, PTSD, IBS, Lupus, Lyme. I could just go on with many other devastating diseases but want to focus on my key issues for now. Chronic Migraine Disease, Fibromyalgia and Depression. I have a few others but these right now are my main areas of concern/problems.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008936/

As most of you know by now that have followed me, I have suffered Migraines for over 25 years. They started out as Episodic and turned Chronic in 2010. I get them daily and no matter how many identified triggers (of which my list seems to grow in leaps and bounds lately) and alternative therapies I use in conjunction with Medical Care and Medications, there seems to be no relief.

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Since 2006 I’ve seen 4 Neurologists, 2 Gynecologists, and 2 GP’s. All this time I have always complained about constant neck pain. I’ve actually had neck pain longer than that. I was in a car accident in the mid 80’s where I suffered whiplash from being rear-ended by a negligent driver. At the time they didn’t think it was serious and through the years I sought Chiropractic care that would temporarily help the problem but it never eliminated it. It would always come back a day or 2 after treatment and even with my doing cervical exercises at home and neck strengthening exercises, to no avail the pain persisted slowly getting worse over the years. For about the past 10 years I would hear crunching in my neck when I would rotate it and I could never fully rotate my neck to the LH side as it would hurt and pull, becoming more painful the further I’d rotate, to where eventually it felt “stuck” as it would not rotate further. My rotation to the RH side was not impeded. I did have a great Chiropractor in Bridgman that did take the time to x-ray my neck and showed it curved the opposite way of what it should. She worked tirelessly on my neck, doing accupressure and trigger point stimulation. It was feeling a little bit better and sadly this Chiropractor moved away and I could no longer get the care I was accustomed to. Good Chiropractors are hard to come by, as is Medical doctors.

Doctors

About 8-10 years ago I suffered an injury to my shoulder. I suffered a small tear in my rotor cuff as a result of falling down my basement stairs on my back all the way down the entire length. I unwittingly put my LH arm up and out to try to stop my descent and that arm ended up being twisted behind me. Stupid me thought I could go to work as the panic wore off and the adrenaline, I was sitting at my desk and the horrible pain kicked in. I had to leave and get an x-ray and then be referred to an Orthopedic Specialist who gave me Cortisone shot and PT to strengthen my shoulder. The tear was too small for surgery but big enough to require injections, which were pretty painful. I’ve had those before in my hip for Bursitis and in both heels for heel spurs and those didn’t hurt. But the one in the shoulder hurt like a son of a hockey puck!! I had prescription Motrin to help w/the pain.

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All during this time I was a guinea pig trying all kinds of medications and alternative and traditional therapies for Migraine Prevention and treatment. No combination seems to have helped so far. And all this time I still complained about neck pain but it was always glossed over and ignored. I was told “oh, it’s a part of the migraines-the migraines are causing it. I let it pass, like a fool. About a month ago after having a really bad experience with my current Headache Specialist who is a Neurologist, I sought out the help of a Pain Management Specialist. I was desperate. The neck pain was getting worse, even though I’m currently in PT and they assigned me a home cervical traction device that helps only temporarily. This doctor finally took my neck pain complaints seriously and ordered an MRI. I got my results last week and I have DDD-Degenerative Disk Disease in my 4th and 5th Vertebrae. I have arthritis settling in as well. I have some spurring and cartilage missing. And also the jack hammer ice pick Migraines I was having that no one else would pay attention to-well he finally did and I got a Bilateral Occipital Nerve Block. I was fighting one of those monsters and getting nauseated while waiting to see him on that day. Within seconds of those injections the occipital pain went away as did the nausea. He is waiting to see the results of this step before he will proceed with zapping those nerves. This coming Monday I will get more nerve blocks in my neck-Trigger Point Injections, to help with the neck pain I pray.

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But I have suffered another set-back. Even though last week I was finally seeing light at the end of the tunnel, my Depression had to make a rude reappearance, and it made it big time. I thought it was under control with the meditation and other holistic approaches I was taking, but I do believe it started to skid out of control after my lack of care from my recent former Neurologist-he was not available for a major migraine due to medication withdrawal as he didn’t want to be quote “contacted for Migraine emergencies on a Friday” unquote from his answering service. And I refuse to go to the ER with a migraine and be treated like a drug seeking addict. So I had a major meltdown in front of my husband and daughter. Up until that point they never took the pain I was having serious until that night. I was at the end of my rope with all the chronic, improperly treated Occipital Migraines and neck pain. Even though this new doctor is helping this Depression is not letting up and seems to have gotten worse. With the Fibro and CFS the Insomnia has been really bad again. To the point I’m getting more forgetful, more clumsy, more touchy and more in the dumps. I can’t shake it off. When chronic Insomnia builds up it really damages the psyche over time.

http://www.webmd.com/depression/guide/treatment-resistant-depression-what-is-treatment-resistant-depression

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When you are down and in your weakest point emotionally and physically, it’s easy for the dark thoughts to take over and crowd your mind. If the Depression is left untreated it can become really dangerous, especially if one has a history of entertaining thoughts of ending it all because the fight is too hard to maintain over a long period of time, and you just get battle weary. Battle fatigue sets in along with the chronic fatigue and pair that with poor medical care and poor pain management, well that is like throwing gas on a raging inferno if left untreated and unrecognized. After dealing with this for so long you think I would know better by now, but the subconscious mind is very powerful and oftentimes hard to break free from. And I don’t care how religious you are, until you suffer the unrelenting pain of horrible daily Migraines, if you haven’t been there you have no idea and have no right to judge that a person is not “Christian” enough to battle the demons of Depression. Support groups are essential for those in Chronic Pain. But recognizing and validating the pain someone is going through is sometimes better medicine than you could ever imagine.

http://blog.advancedmigraine.com/blog/bid/297694/Fighting-the-Blues-Chronic-Migraines-and-Depression

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The Social Stigma for Chronic Migraine Disease, Fibromyalgia, Chronic Fatigue Syndrome and importantly Depression has got to be put to an end! It’s the stigma and public perception, as well as the poorly educated Medical Profession, that makes people become more desperate and sink deeper into despair.

http://www.webmd.com/migraines-headaches/news/20130627/migraine-sufferers-face-significant-stigma-study-finds

http://youtu.be/TlAZKbMz3Lk

And if left unchecked and untreated it is an all-consuming anguish that some people think the only escape from the pain is to end it all. They cannot focus on other people or their “religion” because the pain is too severe and all-consuming. And if you have bad doctors who are not there when you need them the most, and no support from family and friends, you are more of an outcast than someone that has Leprosy. Getting people to understand that these “Invisible Illnesses” are real, legitimate and not just “in your head” is so vitally important. I know I can talk until I’m blue in the face to people, especially family and friends, but to no avail I get a blank stare and then get “unsolicited” advice on what I should try when in all due respect I’ve more than likely tried it more than once already in the past 25 years!! So please don’t tell me something I already know. I’ve been to a so-called “Headache Clinic” in the past and they do the same that all the other doctors do-turn you into a guinea pig and just experiment with different drugs. I was told to go to Mayo Clinic, but they don’t have the answers either. Why do you think they were partners in the launch of the current campaign :36 Million Migraine Campaign. Check out their YouTube video at this link:

http://youtu.be/23ZG0cc7TXg

And check out the official website link here:

http://www.americanmigrainefoundation.org/support-the-foundation/36-million-migraine-campaign/

I was so happy when I saw this on the National News when it was first launched with Cindy McCain, also a long-time Chronic Migraine Sufferer. This will hopefully bring more awareness, education and much needed funding to further develop Migraine Treatments. But also so that we can be treated with more respect and not less than 2nd class citizens.

http://www.nimh.nih.gov/health/publications/depression-and-chronic-pain/index.shtml

If you know of anyone suffering Chronic Migraine Disease and think they are suffering un-Diagnosed Depression, or even if it is diagnosed, PLEASE do not tell them to “snap out of it” or “it’s all in your head”. You are just adding to the burden and the ostracism they are experiencing and will cast them further into that dark abysses of despair and desperation. It could very well add fuel to tragic thoughts they are thinking. When someone is Depressed and contemplating suicide it’s not a chicken way out, and they are not thinking what it will do to those that are left behind. They are too consumed with pain, anguish, untreated suffering and unrelenting Depression. They are not thinking like a normal healthy person because they are NOT healthy and may not be for quite some time. Not until they find a cure or better medication for this Neurological Disease. Please have empathy for us who suffer sometimes in silence. And offer a helping hand, not medical advice. But best of all be a friend in time of need and do not pass judgment. In reality all too sadly those who are in deep despair internalize their deepest thoughts and keep them hidden so as not to be labeled “Psycho” or “Psychotic”” or “crazy”. It can have tragic consequences. Just recently the Chronic Migraine Community lost yet another beautiful soul to suicide. We have to work to eliminate the stigma of Chronic Migraine Disease, Chronic Pain Sufferers-all those who have an Invisible Illness are ostracized and stigmatized and scared to speak up. Some are afraid of being locked up and institutionalized. Please don’t add to this stigma anymore and please help us fight to bring theses diseases to light and get rid of Stigmas.

http://www.save.org/index.cfm?fuseaction=home.viewpage&page_id=705c8cb8-9321-f1bd-867e811b1b404c94

http://www.metanoia.org/suicide/

http://www.metanoia.org/suicide/samaritans.htm

http://www.suicidehotlines.com/

Need help? In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

#MHAMBC Migraine & Headache Awareness Month #27: Anger Management: Goosefrabba: How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?


June Migraine awareness month

Managing anger, resentment and rage at a disease like Chronic Migraine Disease is a daily but hourly challenge. As those of us that have to deal with this monster non-stop as it’s always prevalent in our lives, we have to find healthy ways to vent and release or it will eat us alive.

Blogging helps and being able to share and interact with other sufferers on different online support groups is another great outlet. We can vent, share, exchange idea’s and lift up each other and support each other. And what’s said in the support group stays there so it’s a safe sanctuary. Blogging is a little different because you open yourself up and make yourself vulnerable, but getting the word out is more important that sparing a few harsh words from some non-believers or non-supporters. Everyone gets bashed and knocked down once in a while. You just find a creative way to release this anger.

Having a close personal friend is also a good way to release the frustration, anger and fear that comes with this Chronic Disease. Even though they may not fully understand, having someone to listen to you and not judge you is so important.

I have even punched pillows on the bed, ranted to myself vocally in the house when no one is here of course-the dogs look at me like I’m off my rocker but they don’t judge me.

But trying to manage anger is a constant battle and one cannot sit back on their laurels and think it will just go away on its own, because it won’t. And if one doesn’t acknowledge the anger they are fooling themselves and those around them because you cannot help but be angry at all this disease has taken away from us, from me. It’s robbed me of my life and I want it back, darn it!

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

#MHAMBC Migraine & Headache Awareness Month #26: Men in Black: Migraine Neuralizer: How do you cope with the way Migraine/Headache Disorder can impact our memories?


June Migraine awareness month

I am constantly struggling with memory issues. I even went so far as to as my Neurologist if I was going senile, or early Dementia or worse Alzheimer’s because I cannot remember from one minute to the next. And also having Fibromyalgia on top of Chronic Migraine Disease I get the double whammy of Brain Farts I call them.

It has made a huge impact on my life for the worse! I have turned on the kitchen faucet and walked away to come back to a sink overflowing because I forgot I had the sink filling-and in such a short amount of time. I’d put food on the grill and make something inside and forget about the grill completely until much later-crispy chicken jerky later, slightly charred. I’ve burnt stuff left and right, which is not the normal me.

Of course everyone gets to that stage where you “normally” forget things, but it’s been running more rampant and on a day to day hour to hour basis it seems. I’m always forgetting where I put my cell phone and spend several minutes looking for it. I do the same with my glasses, if I take them off it takes quite a while to find them again. I’ll set down my water glass as I’m always chugging down water and forget where I put it. I set alarms on my cell phone for when to take medications, and even have a chart on the cabinet door, but if I turn off my alarm and get slightly distracted I forget about my meds and end up taking them late and not on schedule. I get so angry with myself. My spouse and daughter get more aggravated with me and I’ve explained to them many, many times that on top of these Brain Farts that come with these diseases, it’s also a side effect from some of the medication.

I lost count of how many lectures I get about how I forgot to do this and that. I just sit or stand and wait for them to finish and then I have to remind them I have no control over it. I wish I did, but I don’t, and that is a depressing and stressful part of this condition. I have also forgot to pay bills. Not normal for me at all. And then I write checks from the WRONG bank, in which the account was closed-don’t ask me why those checks were still around but they were. That mess is fixed at least.

But I would give anything to get my memory back and make it better. If only there was a way short of finding a cure for this horrible disease. Then I can toss all these rotten pills and injections and would not have to see so many doctors and clinics. In my dreams for now.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

Negativity: Migraine Disease Bashers: Invisible Chronic Illness Community is adding to Stigma


blue face of depression

It saddens me to think that everyone that is in the Invisible Chronic Illness Community, that includes Chronic Migraine Disease as well, do not band together to get the true issue out about what is fact and fiction when it comes to someone from the outside touting that “alternative” therapies are the “only” treatment for a known Neurological and Genetic Disease of Migraines. I have struggled with this disease for over 25 years and have tons of research as I’ve had to in many cases be an educator for my Neurologists and PCP‘s as they still as of today don’t have a clue as to what is going on with Migraines. Many doctors do not get skilled teaching on Migraine Disease as it is such a complex Disease requiring a lot of time, effort and research. And there are many different types of Migraines as well, so to get correctly diagnosed and treated properly can take years. There is no “one size fits all” diagnosis or protocol for any one patient. But the fact remains clear, those who do suffer Chronic Migraine Disease do need pharmaceutical intervention in ADDITION to alternative to make a well-rounded approach to the care of everyone who suffers from this terrible disease.

No one ever once stated that Aromatherapy was not a good treatment. It was only pointed out that when a “sales person” was promoting a product she sells as the “only” solution was where the problem began. And again, I cannot stress it enough, as with any other chronic disease or illness there is NO one size fits all answer and there are more pieces to the puzzle than just essential oils. I have on some of my past blogs where I have noted I use alternative treatments as well. We all do. But it’s part of the “complete” regimen and does not replace medical care as this person professes.

ALL of us, myself included, do practice healthy living-eating right, avoiding dietary triggers, exercise, physical therapy, massage therapy, cognitive therapy, Chiropractic, Acupressure, Acupuncture, Bio-Feedback-to name a few. We all have tried and do use aromatherapy when it’s tolerated. We all have tried and use different muscle rubs on the head, temples, neck and scalp to help reduce pain-those are alternative therapies, as is using ice packs, heating pads, bed of nails mat, Chillo‘s, cooling patches-all again are alternative therapies-we all do anything and everything possible to try to stop the pain. But we use all these things in ADDITION to preventive RX medication and RX abortive medications prescribed by a qualified physician. Everyone I have come across, and myself included, have tried just about every alternative therapy known and then some, as well as trying all types of medications to try to manage, stall and abort a Migraine Attack. When all approaches fail we often have to resort to emergency intervention, be it the dreaded ER or to get into an infusion center, or have our doctor call in a cycle-buster. I am not a lazy, incompetent, self-serving, attention seeking Migraine Disease Sufferer. I have fought and battled this beast for many years and will continue to do so. I have spoken out in the past when approached with a Stigmatizing statement and will continue to do so. If someone reading this doesn’t like it then it’s your problem, not mine. I will continue to investigate, research and blog on what is medically sound information. If you don’t agree you can offer your own Medical and Scientific research to dispute that.

It is nice to be able to go into support groups and be supported for a Chronic Disease. People always have opinions that differ, but that does not mean people have to be mean, nasty, hateful and disagreeable. Especially when someone is SUPPORTING the cause, not fighting against it. This part I do not understand and never will. All Chronic Disease have a Neurological factor. They just don’t appear out of thin air for no rhyme nor reason. Like cancer, we know some forms are genetic. Is anyone going to dispute that as well and say the “only” way to cure it is with aromatherapy. While it may soothe it cannot and will not banish those nasty cancer cells. For that you need trained medical intervention. The same with Migraine Disease, Fibromyalgia, Lupus and many more diseases. If you’re not being treated correctly you need to shop for another doctor who will. You just don’t sit there and settle and not try to get better. You have to fight with all your might and all your worth.

We also know that it is neurological and it is genetic. I can paste the webpages yet again from well-known institutions that support this fact. But again this is all getting to be so repetitive. If you cannot support the correct education of what this disease is then you should not promote anything. I’m for the truth, will remain truthful and tell nothing but the truth. Some people cannot understand that concept but that is what I’m about.

In closing I’d like to wish all of you-Chronic Illness Community and all those who do and do not agree, a low pain day and sending you Blessings to you all as I do not wish to be a disagreeable person. I just merely want to present the facts and share the truth in this Disease. I do not lead people astray.

bible-quotes-3

#MHAMBC Migraine & Headache Awareness Month #21: Oblivion


June Migraine awareness month

First one must ask what is the definition of Oblivion. Webster Dictionary states this:

1. the fact or condition of forgetting or having forgotten; especially   : the condition of being oblivious

2: the condition or state of being forgotten or unknown

When it comes to the education and awareness of Migraine Disease I’m going with the meaning of the unknown-being Oblivious.

The public in general see’s Migraine Disease as “just a headache” when in fact it is so much more than that. It is a Genetic and Neurological Disease. http://www.ninds.nih.gov/disorders/migraine/migraine.htm

It is in the classification of Headache Disorders but it is more complex and hard to diagnose as there are so many different types of Migraines:

Types of Migraine: from the International Headache Society’s International Classification of Headache Disorders, 2nd Edition:

1.1 Migraine without aura

1.2 Migraine with aura

1.2.1 Typical aura with migraine headache

1.2.2 Typical aura with non-migraine headache

1.2.3 Typical aura without headache

1.2.4 Familial hemiplegic migraine (FHM)

1.2.5 Sporadic hemiplegic migraine

1.2.6 Basilar-type migraine

1.3 Childhood periodic syndromes that are commonly precursors of migraine

1.3.1 Cyclical vomiting

1.3.2 Abdominal migraine

1.3.3 Benign paroxysmal vertigo of childhood

1.4 Retinal migraine 1.5 Complications of migraine

1.5.1 Chronic migraine

1.5.2 Status migrainosus

1.5.3 Persistent aura without infarction

1.5.4 Migrainous infarction

1.5.5 Migraine-triggered seizures

1.6 Probable migraine

1.6.1 Probable migraine without aura

1.6.2 Probable migraine with aura

1.6.5 Probable chronic migraine

 Old school thinking was that Migraines were vascular and cause inflammation. That is far from the truth. After years of research and study they have concluded that Migraines are Neurological and Genetic. In fact Migraines can be life threatening and lead to stroke or death if not treated in time: http://health.usnews.com/health-news/news/articles/2013/01/15/migraine-with-aura-may-raise-risk-of-heart-trouble
But yet people are Oblivious to this scientific backed information. A “regular” Headache cannot give you a stroke or kill you. And the fact it’s Neurological also bears fact that a Migraine attacks the WHOLE body and not just the head. Head pain is only ONE out of many symptoms of a Migraine Attack:

A “regular” headache doesn’t cause any of the above symptoms. A Migraine sufferer will experience many of those symptoms and maybe more. The whole person as a whole is under attack. And yet the public continues to stay in their Oblivion to this Disease. Those who are not privileged to suffer the regular old run-of-the mill “headaches” are not bombarded with an overwhelming menu  of Preventive Medications to try to control the disability that comes with Migraine Disease:

ANTIHYPERTENSIVES (blood pressure meds) Alpha-2 agonists:

  • Clonidine, aka Catapres
  • Guanfacine, aka Tenex

ACE Inhibitors:

  • Benazepril, aka Lotensin
  • Captopril, aka Capoten
  • Enalapril, aka Vasotec
  • Fosinopril, aka Monopril
  • Lisinopril, aka Zestril, Prinivil
  • Moexipril, aka Univasc
  • Perindopril, aka Aceon
  • Quinapril, aka Accupril
  • Ramipril, aka Altace
  • Trandolapril, aka Mavik

Angiotensin II Inhibitors:

  • Candesartan, aka Atacand
  • Eprosartan, aka Teveten
  • Irbesartan, aka Avapro
  • Losartan, aka Cozaar
  • Olmesartan, aka Benicar
  • Telmisartan, aka Midcardis
  • Valsartan, aka Diovan

Beta Blockers:

  • Acebutolol, aka Secral
  • Atenolol, aka Tenormin
  • Betaxolol, aka Kerlone
  • Bisoprolol, aka Zebeta, Emconcor
  • Cartelol, aka Cartrol
  • Labetalol, aka Normodyne, Trandate
  • Metoprolol, aka Lopressor
  • Nadolol, aka Corgard
  • Penbutololm aka Levatol
  • Pindolol, aka Visken, Syn-Pindolol
  • Propranolol, aka Inderal
  • Timolol, aka Blocadren

Calcium Channel Blockers:

  • Amlodipine, aka Norvasc
  • Bepridil, aka Vascor
  • Diltiazem, aka Cardizem, Tiazac
  • Felodipine, aka Plendil
  • Flunarizine, aka Sibelium (Canada)
  • Isradipine, aka DynaCirc
  • Nicardipine, aka Cardene
  • Nifedipine, aka Adalat, Procardia
  • Nimodipine, aka Nimotop
  • Nisoldipine, aka Sular
  • Verapamil, aka Calan, Verelan, Isoptin

Other Antihypertensives:

  • Guanfacine, aka Tenex
  • Mirtazapine, aka Remeron

ANTIHISTAMINES:

  • Cyproheptadine, aka Periactin
  • Pizotifen, aka Sandomigran (UK)
  • Benadryl

ANTIDEPRESSANTS Tricyclic antidepressants (TCAs):

  • Amitriptyline, aka Elavil (discontinued), Endep
  • Amoxapine, aka Asendin
  • Clomipramine, aka, Anafranil
  • Desipramine, aka Norpramin
  • Doxepin, aka Sinequan
  • Imipramine, aka Norfranil, Tofranil
  • Nortriptyline, aka Pamelor, Aventyl
  • Protriptyline, aka Vivactil
  • Trimipramine, aka Surmontil

MAOI Antidepressants:

  • Isocarboxazid, aka Marplan
  • Phenelzine, aka Nardil
  • Tranylcypromine, aka Parnate

Selective serotonin reuptake inhibitors (SSRIs):

  • Citalopram, aka Celexa
  • Escitalopram oxalate, aka Lexapro
  • Fluoxetine, aka Prozac
  • Fluvoxamine, aka Luvox
  • Paroxetine, aka Paxil
  • Protriptyline, aka Vivactil
  • Sertraline, aka Zoloft

Selective serotonin and norepinephrine reuptake inhibitors (SSNRIs):

  • Duloxetine hydrochloride, aka Cymbalta

Other Antidepressants:

  • Bupropion, aka Wellbutrin, Zyban
  • Mirtazepine, aka Remeron
  • Trazodone, aka Desyrel
  • Venlafaxine, aka Effexor, Effexor XR

Attention Deficit Hyperactivity Disorder Meds Selective Norepinephrine Reuptake Inhibitor:

  • Atomoxetine HCl, aka Strattera

ARTHRITIS MEDS Cox-2 Enzyme Inhibitors:

  • Celecoxib, aka Celebrex

NEURONAL STABILIZING AGENTS (antiseizure meds)

  • Carbamazepine, aka Tegretol
  • Clonazepam, Klonopin
  • Clorazepate, aka Tranxene
  • Divalproex, aka Depakote
  • Gabapentin, aka Neurontin
  • Levetiracetam, Keppra
  • Lamotrigine, aka Lamictal
  • Oxcarbazepine, Trileptal
  • Pregabalin, aka Lyrica
  • Tiagabine, aka Gabitril
  • Topiramate, aka Topamax
  • Valproate Sodium, aka Depacon
  • Zonisamide, aka Zonegran

Ergot Alkaloid:

  • Methylergonovine, aka Methergine (the only ergot used as a preventive)

Leukotriene Blockers:

  • Montelukast, aka Singulair
  • Zafirlukast, aka Accolate
  • Zyleuton, aka Zyflo

Other:

  • Baclofen, aka Lioresal
  • Botulinum Toxin Type A, aka Botox

Medication for Alzheimer’s Type Dementia:

  • Memantine, aka Namenda

A person who suffers the occasional standard headache would not be prescribed any of the above preventives nor the following array of Abortive Medications:

Analgesic Agents:

  • acetaminophen (APAP).
  • aspirin (acetylsalicylic acid, ASA), which can be used alone or in combination.
  • NSAIDs.

Narcotic:

  • butalbital

Ergot alkaloids:

  • cafergot
  • Migranal
  • DHE
  • Sprix

Triptans:

Muscle Relaxers:

  • baclofen (Lioresal)
  • cyclobenzaprine (Flexeril, Flexmid, Amrix)
  • Orphenadrine citrate (Norflex)
  • Tizanidine (Zanaflex)
  • carisoprodol (Soma)
  • chlorzoxazone (Parafon Forte DSC, Lorzone)
  • diazepam (Valium)
  • metaxalone (Skelaxin)

These medication lists are just a sampling and are reserved for those who suffer Chronic Migraine Disease who cannot get relief from OTC Medications used for regular headaches. More medications that are not marketed for Migraine Prevention and Abortive Treatment are being tried on a daily basis. I don’t think they can even compile a complete lists because doctors everywhere are trying other medications out of desperation.  Now some Migraine Patients have been advised they can utilize OTC WITH their medication regimen but it doesn’t take the place of. We use other “alternative therapies” along with our prescribed medications to help with our own care, but not take the place of regular Medical Care.

But yet the public still remains Oblivious to the chronic suffering of Chronic Migraine Sufferers. They prefer to see them as “drug seekers” “whiners” “complainers” “attention seekers” even going to the point of telling us it’s “all in our heads” “we’re making it worse than it really is” “get out and do something and you’ll feel better” “it cannot be that bad” or my favorite “can’t you just take a pill for that”. Even some in the medical profession still do not take Migraine Disease as a legitimate Disabling Neurological Disorder and will treat patients who come to the ER’s for emergency treatment. These patients in desperation are turned away, again labeled as “drug seekers” and treated with contempt. They too remain Oblivious even though there is more proof it is a “REAL” disease. And yes, it can prove fatal to some who can get no help for their chronic condition, who can not get relief from the relentless pain, and they will tragically take their own lives to escape the ridicule, disdain, mistreatment, mismanagement and isolation: http://www.puttingourheadstogether.com/2013/06/dont-tell-me-migraines-dont-kill.html

 

We are isolated because the world, the public, continue to be Oblivious to our plight. The Stigma of Migraine Disease is too real, too prevalent and needs to be erased from our society: http://www.helpforheadaches.com/articles/2010/Migraine_Stigma_AHS10.htm

Enough is enough. People, stop being Oblivious and open your eyes. Become educated to the plight of Chronic Migraine Disease. Don’t walk around in Oblivion to the plight of those who are suffering and need support.

 

THIS SITE DOES NOT CONSTITUE NOR TAKE THE PLACE OF PROFESSIONAL MEDICAL ADVICE. PLEASE SEE YOUR OWN PHYSICAN FOR DIAGNOSIS AND PROFESSIONAL CARE. I AM ONLY A BLOGGER THAT LIKES TO DO RESEARCH ON MY OWN AND SPREAD THE WORD TO GET THE STIGMA OF MIGRAINE DISEASE TAKEN AWAY,  AND EDUCATE OTHERS AS WELL AS MYSELF.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.