Hey, doc, where is my magic pill?

help with pain

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

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

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

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

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

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Children and migraines

I do not have children but many of my migraineur friends do. Some of them are going through the gut-wrenching realization their children or teens are developing migraines. Some of those children severe migraines, like their parents. It is a horrible experience to feel knowing what you go through and then seeing your child experience the same thing. No parent wants that.

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What so we know about children and migraines? Here is a presentation by the Diamond Headache Clinic that goes over some important facts:

Common Types of Migraine Headaches and Symptoms: What Kind Does Your Child Have?

Abdominal Migraine

Abdominal migraine affects mainly children between 5 and 9 years of age. Many of these children go on to develop migraine headaches (with or without aura) later in life.

 

What Are the Symptoms of Abdominal Migraine?

Symptoms may include:

  • Midline abdominal pain of moderate to severe intensity that lasts 1 – 72 hours
  • Chronic or recurring pain severe enough to interfere with normal activities
  • Mild or no headache
  • Nausea, vomiting, loss of appetite
  • Pallor with dark shadows under the eyes or flushing
  • The absence of another illness, including a gastrointestinal disorder

 

How Is Abdominal Migraine Diagnosed?

No specific diagnostic test is available to confirm abdominal migraine. A diagnosis is made through a thorough evaluation of the patient’s medical history, incidence of migraine headache in the family, symptoms, and a physical exam and tests to rule out other conditions.

What Are the Treatment Options for Abdominal Migraine?

For children and teens, abdominal migraine treatment includes rest, plenty of fluids, over-the-counter pain relievers and relaxation/behavioral therapy techniques. For older children and adults with infrequent abdominal migraine attacks, physicians may prescribe medications used for other forms of migraine, such as NSAIDs, anti-nausea medication and triptans. Frequent abdominal migraines are treated with the same preventive therapies used for other migraines.

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Migraine Headache

The average age of onset for migraine is 7 years old for boys and 10 years old for girls, although symptoms may appear in much younger children. Up to age 12, equal numbers of boys and girls suffer from migraine; by the ages 21 – 24, up to 80% of migraineurs are woman. Children with migraine often have a family history of migraine. Migraine affects up to 5% of school-aged children. From 50% to 75% of children with migraine will cease having attacks between adolescence and early adulthood, but some will redevelop migraine later.

 

What Are the Symptoms of Migraine Headache?

Common symptoms of migraine in youngsters include:

 

  • Pain on one or both sides of the head, or a child may report pain “all over”
  • Pounding or throbbing pain, although children may not be able to articulate this
  • Abdominal upset, nausea and/or vomiting
  • Sensitivity to light and/or sound
  • Sweating
  • Becoming pale or quiet
  • Experiencing an aura, or a sense of flashing lights, funny smells and changes in vision

 

Tension-Type Headache

This common headache type is triggered by stress or emotional/mental conflict.

 

What Are the Symptoms of Tension-Type Headache?

  • Generally, symptoms include:
    • Headache that develops slowly
    • Pain usually present on both sides, and may involve the back of the head
    • Dull pain or pain that feels like a band around the head
    • Mild to moderate, not severe, pain
    • Change in sleep habits

 

Cluster Headache

More common in adolescent males, cluster headache usually begins in children over 10 years of age. This headache type occurs in a series, or “cluster,” that can last for weeks or months. This series of headaches may recur annually or every other year.

 

What Are the Symptoms of Cluster Headache?

  • Common symptoms in children and adolescents include:
    • Unilateral (one-sided) pain, often behind an eye
    • The affected eye may look droopy and have a small pupil, or the eyelid may be red and swollen.
    • Congestion or runny nose
    • Swollen forehead

 

Headache Associated With a Serious Issue

If your child shows these symptoms, consult a headache specialist to determine if there is a possible serious underlying cause:

 

  • Headache in a very young child
  • Headache pain that awakens a child
  • Headaches that begin very early in the day
  • Pain worsened by strain like a cough or sneeze
  • Recurrent vomiting episodes or other signs of a stomach virus
  • Child complaining about “the worst headache ever”
  • Increasing severity of headache, or one that continues
  • Personality changes
  • Weakness in limbs or problems with balance
  • Seizures or epilepsy

 

How Is Pediatric/Adolescent Headache Diagnosed?

An accurate diagnosis is the first step to effective treatment in children and adolescents with headache. A pediatric headache specialist should evaluate your child thoroughly, including a physical exam, inquiries into medical and family history, and diagnostic tests. The child may be asked to describe the pain, its location, the duration of the headache and more. The specialist may ask parents about changes in behavior, personality, sleeping patterns, emotional stress and if physical trauma preceded the headache. If symptoms indicate migraine or tension headache, specialists may not recommend further testing. But sometimes, additional diagnostic tests may be necessary; these may include blood tests, an MRI or CT scan, or a polysomnogram to check for a sleep disorder.

 

What Is the Recommended Pediatric/Adolescent Headache Treatment?

Each child receives an individualized treatment regimen that may include these components:

  • Medication
    Specific therapeutic agents are prescribed, and patient response is closely monitored to evaluate efficacy and minimize side effects.

 

  • Lifestyle Modification
    Patients are instructed in the areas of diet, recreation, sleep patterns and other habits linked to headaches.

 

  • Biofeedback Training
    This is a non-drug therapy that enables patients to actively participate in their treatment while alleviating headache symptoms. About 70% of all patients, and especially children, benefit from this training. Biofeedback augments other therapies and is particularly useful for patients for whom stress is a major contributing factor to headaches, or for those patients who are unable to use standard headache agents.

 

Presentation courtesy of Diamond Headache Clinic.

 

We all have migraines that exceed our capacity to cope. Mind-blowing pain. Roll up into a ball and just wait out of the pain.

Well, it so happens I have been having some high-intensity migraines this week. Not a pleasant ordeal. Just a little too many days in a row and it has made me emotionally fragile and just drained to the bone.

Yet, I had a doctors appointment and no ride to get there. The migraine at that point was sort of in the range of tolerable so I drove myself.

Mistake.

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10 way you know you are having a migraine

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  1. You’re not tired but you keep yawning and yawning. It starts other people in the room yawning. And soon it is the continuously triggered yawn fest going on.
  2. You’re stuffed up all of a sudden. Allergies? Or impending doom?
  3. You are smart, but suddenly you are stupid. You have a case of the Stupids. You may find yourself saying ‘I am an onion.’ instead of ‘I see funyuns’. Which brings me to the next one,
  4. You may crave funyuns. Salty or sweet. Or both. Nom. Nom. Which brings me to,
  5. Your body now rejects all the foods.So much for craving, because now you are insanely nauseated. When you peak on nausea then you hit vomiting. Tossing your cookies, if you ate cookies.
  6. You can’t see out of your eye. There is the sparkly, warping thing in your eye that makes it difficult to see through. It started small but then it consumed your entire eyeball. Then tingling numbness spreads down your face. Or far weirder auras. Your brain may get quite creative on the hallucination side of things.
  7. Massive mind-blowing pain erupts into your brain causing an existential crisis.
  8. You can’t stop peeing.
  9. Light stabs you in the eyes. Sound smacks into your ears. Scents assault your nose. Yes, the senses have gone quite mad.
  10. You feel like your brain is a puddle of goo after the explosion that occurred in it and now you think you might be brain dead but certainly, you are dead to the world tired.

The hormonal migraine

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I’ve hit a bad stretch of high-intensity migraines. Amplified by the lack of sleep due to the pain. Pain-lack-of-sleep cycle.

It started with menstrual migraines. Shhh I said menstrual.

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These migraines are triggered by hormones during a woman’s cycle. Estrogen drops and progesterone.

They generally start 2 days prior to the cycle and usually 3 days in. Which is exactly how I am… now. I say usually because you can get ‘stuck’ in them, likely due to the whole lack of sleep issue, dehydration, and stress. Almost seems like what can happen is that it starts off hormonal and can go status. Or at least, that is how to seemed to me at my most brutal of stretches.

Here is the actual criteria: (I am the second one. I so have migraine with aura. But I also have migraine without aura. And vestibular migraines. Hormonal migraines, it is true, seem to be rather without aura, oddly enough. Although, extreme nausea for me, which is quite unwelcome.)

A1.1.1 Pure menstrual migraine without aura
Diagnostic criteria:
A. Attacks, in a menstruating woman,1 fulfilling criteria for 1.1 Migraine without aura and criterion B below B. Documented and prospectively recorded evidence over at least three consecutive cycles has confirmed that attacks occur exclusively on day 12 (i.e. days 2 toþ3)2 of menstruation1 in at least two out of three menstrual cycles and at no other times of the cycle.
Notes:
1. For the purposes of ICHD-3 beta, menstruation is considered to be endometrial bleeding resulting from either the normal menstrual cycle or from the withdrawal of exogenous progestogens, as in the use of combined oral contraceptives or cyclical hormone replacement therapy. 2. The first day of menstruation is day 1 and the preceding day is day 1; there is no day 0.
A1.1.2 Menstrually related migraine without aura
Diagnostic criteria:
A. Attacks, in a menstruating woman,1 fulfilling criteria for 1.1 Migraine without aura and criterion B below B. Documented and prospectively recorded evidence over at least three consecutive cycles has confirmed that attacks occur on day 12 (i.e. days2 toþ3)2 of menstruation1 in at least two out of three menstrual cycles, and additionally at other times of the cycle.
Notes:
1. For the purposes of ICHD-3 beta, menstruation is considered to be endometrial bleeding resulting from either the normal menstrual cycle or from the withdrawal of exogenous progestogens, as in the use of combined oral contraceptives or cyclical hormone replacement therapy. 2. The first day of menstruation is day 1 and the preceding day is day 1; there is no day 0.
A1.1.3 Non-menstrual migraine without aura
Diagnostic criteria:
A. Attacks, in a menstruating woman,1 fulfilling criteria for 1.1 Migraine without aura and criterion B below B. Attacks do not fulfil criterion B for A1.1.1 Pure menstrual migraine without aura or A1.1.2 Menstrually related migraine without aura.
Note:
1. For the purposes of ICHD-3 beta, menstruation is considered to be endometrial bleeding resulting from either the normal menstrual cycle or from the withdrawal of exogenous progestogens, as in the use of combined oral contraceptives or cyclical hormone replacement therapy.

 

So, okay, we have 5 days of extra migraine hormonal fun. However, I have found these to be the most brutal of migraines. For one thing, for me, they are One continuous migraine. Non-stop. For another, they are excessively high intensity. And thirdly, they are extremely difficult to treat. In my case, anyway.

I will say initially my cycle was longer and, as I said, I tended to get ‘stuck’ in longer stretches of these migraines. Then I gave the depo shot a go. Estrogen-based birth control is a no-go for me because I have migraine with aura. I gave the shot a go and it, unfortunately, made my vestibular migraines significantly worse. However, when I came off of it, my cycle has been less than half what it was. And since that, I have been straight up typical for this migraine type. No longer getting ‘stuck’ into it and generally looking at 4-5 days of hormonal migraines. And, damn, that is awesome. Otherwise, I had few options since I cannot take NSAIDs and I cannot take triptans daily.

Treatment is complicated due to the trigger. Birth control is an option. As is continued use of a NSAID during the duration. And continued use of a triptan during the duration. Something to carefully consider with a doctor or specialist for sure. Look at the highlight I put on treatment for an indepth analysis on treatments… the best by the way was triptan treatment.

 

 

 

10 Reasons Migraineurs Are Awesome

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Migraines are not in and of themselves awesome to experience. They are a neurological condition and pain can be invited to that party, but not necessarily. It is a mind-blowing experience and not a positive one. So why would migraines make migraineurs so awesome, you wonder? We experience a very difficult experience, sometimes very often. I think that makes us very strong people, and very supportive people as well. We develop strong communities and make great friends in those communities. Here are some other things:

1. A super sense of smell — During a migraine attack, some of us have osmophobia, known as a very strong sensitivity to odors. We can smell your perfume a block away. We can smell those stinky socks you took off in the other room. It is so profound an ability, we might be able to smell what you had for dinner two days ago. The only thing that messes with this trick is that some people also get olfactory hallucinations; in other words, they can smell things that are not there. Like burning toast and sewer. Or rancid goat breath. Sometimes it is really hard to label phantom smells. And since we have a super smell machine, we might look all over for phantom smells. Nevertheless, superhuman smelling makes migraineurs awesome. Misplace your sandwich? We are on it! Think the milk is a little off? We will know it.

2. Superhuman pain tolerance — I’m not one to brag or anything but I can stand, communicate and even move while my head is imploding. This is a skill mastered with chronic migraines, which are classified as more than 15 migraines per month. Once you reach migraine warrior class, I mean chronic, you have to function in some capacity with them, in order to have a life. So we develop an astonishing pain tolerance. We are talking functioning on a seven or eight on the pain scale. Not so much when we hit 9, but I doubt many people can master that class of functionality. Not saying this skill is awesome in itself, but we need it… we really need it.

3. We can sense weather changes — Some of us may have a sense of an impending storm and other barometric shifts. It really rather smacks us right in the brain noodle. I sense… oh my god, that hurts like hell… yeah, a storm is coming. It’s useful if I’m there when you are having an outside gathering. I am your weather alert.

4. Some of us hallucinate without drugs — Yes, many of us get the “perks” of hallucinations without having to take drugs. We might have migraine auras and see flashing lights, translucent raindrops falling from the sky, cascading multi-colored sparks of color falling over our vision. We might see warping motion of objects that are not moving. We might have hallucinations involved with Alice in Wonderland syndrome (AIWS) that cause our body to morph larger or smaller to our perception or the world to get bigger or smaller. I have persistent migraine auras, so I have auras with or without the actual migraine. Most people find auras very unpleasant and disruptive; however, since I get them so often I tend to just enjoy the varied light show. They can be very visually disruptive given we generally need to see and AIWS in particular can be very severe. It is just an experience that we may not share with others. It is unique. It is indescribable. Sometimes entrancing and sometimes extremely disruptive. Sometimes visual and sometimes tactile.

5. We rock the sunglasses and hats — For those of us with an excessive loathing for light due to photophobia, we do not leave the house without sunglasses and/or a hat. And we rock it. Some of us actually wear FL-41 specially tinted glasses for inside that specifically help with photophobia indoors, and can be used outdoors in sunglass form. People often give us a double-take. Wearing sunglasses inside, are we just that cool? No, but coolness is a side effect I’m good with.

6. We live in moderation — You won’t find us getting carried away, because we have to watch our migraine triggers. Too much sleep. Not enough sleep. We likely will not, for example, go to a loud bar and get very intoxicated because a) a loud bar could be a trigger by itself and b) alcohol can be a horrible trigger. I personally learned this lesson in my early 20s when I was first diagnosed. And a migraine when you are intoxicated? Not recommended. So we learn moderation. Keep it mellow. At times that means work-wise as well.

7. We are always prepared — Yes, we are always prepared for impending doom. Since we must live our lives, when we do anything we are prepared for an attack anywhere we go. Migraine balms, medications, heavy-duty sunglasses, hat and maybe some icy cold patches. For example, we may want to get our rock on at a concert, but the loud noises are a massive factor, so we prepare and bring our migraine emergency kit and earplugs. Hope for the best, prepare for the worst.

8. We are spontaneous — Because a migraine may hit at any time, we do not do plans very well. We often cancel plans and feel exceptionally guilty about this. But, my friends, we do spontaneous very well. Because those low pain days or migraine-free days? We want to take advantage of them. We live for them. We want to experience our lives during them. Like now. Like, let’s get out there right now and do something — in moderation, that won’t trigger a migraine, of course.

9. We are great at diets and supplements — Many of us have tried so many restrictive diets to help with our migraines, and we are great with them. We know paleo, high protein, Mediterranean diet, anti-inflammatory diet and the ketogenic diet. We likely can recommend recipes. Have helpful recommendations. Tell you if we happened to lose weight, and let’s just say if we gain weight on every preventative med we are put on, we will probably consider that to be a plus. Since many of us have tried and are on numerous vitamins and supplements, we are a fountain of knowledge on them. We know what they are for, what they help with and even what the potential side effects are. We know all the good migraine ones.

10. We are empathetic — We understand pain. We understand pain that knocks you out all day. Or even for days. We understand pain that sends you to the ER. We understand pain that people don’t quite understand or can’t quite relate to. We understand it when pain becomes chronic, people understand it even less. So we empathize with suffering. We know how difficult it is to manage and cope with invisible disabilities and chronic pain of any sort

How to deal with migraine pain

I have chronic daily migraine with aura that is intractable. Pain literally can drive me nuts. It can make me suicidal. It can drive me to distraction. It can make me non-functional. But it is literally my life, so I have to deal with them one way or another all the time. Some better than others.

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Distraction: This is by far the most common approach to coping with the pain. It cannot be used for high levels of pain, because the pain impedes of the distraction you are using but when I am at a 7 or low 8 I can distract. And basically anything that you can engage in that requires no In depth thinking can be a distraction. Some things I do:

  • Blogging- One of my favorites.
  • Coloring- Next to medication it is said to be very relaxing, and it is easy, so there is that benefit.
  • Reading- Some people can read with a migraines, others cannot. I can. Especially fluff books- ones with simplistic plots.
  • Writing- I write fiction but another way to express yourself that I do is journaling and gratitude journals. Both a great idea. In a journal you can just free flow thoughts. And sometimes free-flowing about your pain and feelings, makes them less Present.

Sleep/Rest– Sometimes when the pain is high or the fatigue is we simply need to sleep or rest, if and when we can. It can be necessary. No guilt allowed. It is part of pacing with pain to do so when pain is high.

Zoning– When pain is high we sometimes need activities that require no thought at all. Where information is presented to us, because we have very low concentration levels and ability to focus and are easily confused. So what I do at this stage:

  • Netflix: Binge a show on Netflix.
  • Pick a comedy on Netflix for a mood booster.
  • Watch a movie. I have a lot of movies on DVD so I just choose one of those and relax to that. Again, if I feel down, I will choose a comedy.
  • Listen to music
  • You can also visit support groups online and interact with people. Makes you feel less isolated and gives that social aspect you cannot get with higher levels of pain. Goes for all social media.

Meditation: I can and do longer forms of medication, like 20 to 30 minute body scans and breathing medications with a migraine to try and calm the distress that comes with pain. Can only be done with a 7 level of pain. Higher and the pain levels seem to interfere with the whole thing, or do with me so far. But it is relaxing. And if you cannot sleep for example then this is an idea to help get you there if you need to.

 

 

Nightmare

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I woke up into a nightmare. That line speaks a lot of truth. Sleep is something I crave just for the relief. Mind you sleep is near impossible to get with painsomnia and FM, and frequent wakings due to pain and sleep disturbances. But when i do, I dream of weird story lines and people I have never been, often with a fantasy theme because I read a lot. They are fun and entertaining dreams.

But I wake up.

The moment my consciousness becomes aware I get anxiety. This profound overwhelming feeling and this tightness and restricted feeling in my chest. A sudden surge. My psychologist tells me, because it happens on work days, that my brain is anticipating having to function in increased pain levels and is panicking. I get that. It isn’t fun. I calm it down best I can.

I am groggy. Confused. Fatigued beyond belief. I can’t think clearly. I am already in the prodrome of the migraine. Sometimes in the aura; with numbness, visual auras, tinging, tinnitus, hearing issues. I want to shake the fatigue but I can’t, it is stuck to me and I am suffocating on it.

I want to eat, in the sense I know I should but I have no appetite. The nausea has stolen it from me along with any enjoyment from eating at all. Just get some food in there to survive. Hope it stays in there, one way or another.

I muddle through a bit of the day as best I can with my brain in a haze when the pain kicks in. Sometimes it is hard as a wall in the fact. Other times starts slower with a lower level pain and eases up and up and up. Either way by the end of the day I am suffering hard and it is hard to even think straight anymore. It is weird how confusing things can get. Like the time I got lost in an airport for three hours. Or how hard it is to stay awake, like the fatigue is just weighing you down so much everything is just shutting down. You can’t think, process, and just want to curl up in a ball and sleep. But you can’t sleep. That pain is too high.

And repeat.

ad infinitum

The lies we tell

liar

On my blog I will say I am in a crapton of pain. To my family, sometimes, I will mention it as well… if it is in that high range that is getting to me. But I lie a lot to others and to family.

I lie because… I don’t need to validate my pain to everyone I meet.

I lie because… I don’t always feel like talking about my pain, I feel like surviving it and coping with it.

I lie because… I don’t feel like getting false sympathy.

I lie because… I don’t feel like getting ‘advice’.

I lie because… I know most people do not really want to know how I feel and are just being polite.

I lie because… no one benefits from the explanation of my pain and I just want to get through it. Sometimes the facade I use gets me through the day better if I just pretend.

I lie because… explanations tire me. I get tired of constantly explaining to people what I migraine really is like and how it is really affecting me.

I lie because… I don’t want my loved ones to know how bad it really is.

I lie because… it isn’t anyone’s business but mine, unless I choose to tell them. It is my prerogative to keep it to myself.

 

It has a lot to do with functioning in society with people I don’t know, acquaintances and co-workers. I don’t owe anything to any of these people. I tend to hide the pain with my stoic pain facade. Or when at work with my super customer service facade. And I want to get through the day with pain alive. It is only friends and family that we really need to connect with communication wise. The rest of them it is on a as need basis. Or if the pain is too high to hide. It is just as simple as that. So we lie by omission. We do not tell people how we really feel. And if we did, they would think we were chronic complainers. Or saying too much information. Or fake sympathy. It does no one any good to know really.

It does create a sense of isolation working in a lot of pain, faking your way through the day masking the pain as best as you can struggling to function… when no one notices and/or cares. And we wonder why no one cares about the suffering we have to endure. Few people, if any notice. The few that do, wouldn’t know what to do about it regardless.