The prevention #MHAM #MHAMSMC

Migraine and Headache Awareness Blogging and Social Media Challenge

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

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

I would probably add in other preventative things like:

  1. Meditation
  2. Exercise
  3. Supplements

Preventative treatments #MHAM #MHAMSMC

Please share your experience with trying to find effective Migraine and/or Headache preventive treatments.

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I have had migraine with aura for 20 years, along with menstrual migraines and vestibular migraines (Migraine related vertigo when I was diagnosed) and persistent migraine auras. I likely had silent migraines well before that initial diagnoses given the aura presentation I had; corona auras and visual snow.

But my luck with preventative treatment medication wise has been an arduous journey that hasn’t gone too well for me. I have been a non-responder to medication with One exception to that rule.

I did respond and do respond to Sibelium for the Vertigo alone from the vestibular migraines. Which is a very good thing because it was getting to be very problematic for me. Things like driving, for example, were getting to be an issue. As in, not recommended. All motion was a trigger; from an elevator ride to a car ride. So, yes, this was and is a successful vertigo treatment. And the only successful vertigo treatment I tried.

Also, one preventative that helped me in the past for a very short duration was Topamax. I responded, somewhat, then it failed. I was put on it again a couple years ago. And I believe it helps me, somewhat, with intensity. Hard to say though. Prior to the Oska my pain, daily, was a 7-9. So… not cool. Does it help? I think a little. I did occasionally get the odd 5 to 6 in there before the Oska. But if it is doing something it isn’t doing much of something.

Other that nothing has touched the migraines in all the time of trial and error. Not even my first attempt at Botox. I am making a second attempt. The first go around had a different protocol than they do now. Fingers crossed.

Non-medication wise, I use an external pain device: see Oska Pulse post. It is an external pain device that I use for all my pain but it quite helping me with intensity and somewhat with frequency. As well as with my extreme persistent nausea issue. So it is a different type of prevention. I thought I would see results with FM but with migraines I had pretty much assumed not, since they are so… entrenched. But slowly and surely I did. So that is a sort of prevention I use now daily to manage the pain. I have a lot of low pain days in there now. Well, a lot More. I don’t track but at least 3-4 days a week I am in the 3-6 range. Some days I am migraine free which has been so long since that has happened I literally have no recollection of it. The remainder of the week is 7-9 and I get home and I have to really get using all my resources; ice, magnesium, meditation and the Oska to manage it. But it is quite a lot better intensity wise. Anyway, I am a responder to this pain wise. I should track it. So I have a clearer image. All I know is some days it really astounds me. How late the pain comes. How mild it is. But we all know there are out there other external devices for migraines specifically, and others being researched. I have other pain so this one is ideal for me. People should consider them as an option since the research is there.

Another preventative tool I am using is migraine glasses. I have used both Axon and TheraSpecs. I have photophobia all the time. My migraines are daily, so that isn’t a surprise. And I have FM, which can cause similar issues. The migraine filter is especially beneficial for light sensitivity. It not only helps prevent but helps with light as an aggravating factor.

Anyway, prevention I discovered is about a lot more than medication. I discovered this after years and years (okay decades) of failed medication treatments. Prevention is about alternative therapies like the Oska I use. Or for others, things like acupuncture (this for me triggers vertigo for some bizarre reason). It can be stress reduction techniques like meditation or biofeedback. It can be taking supplements like magnesium and your B’s. It can be lifestyle changes and trigger management.

I use currently:

Aromatherapy

Meditation

Exercise

Supplements: Magnesium, B complex

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And in the end, some of us are still going to be chronic. Because that is the way our brains are. They have become really sensitive to triggers. Pain begets pain. And we have to move on to pain management techniques. Or add that to the equation.

Migraine management #MHAM #MHAMSMC

Please discuss elements that go into Migraine and Headache management in addition to medical knowledge.

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Medical knowledge does go a long way for sure but when you have chronic migraines you have to dig a lot deeper into lifestyle and alternative treatments. That alone is trial and error and a lot of your own research, or word of mouth from others who have traveled the same road. So the elements I would say have gone into my migraine management have been:

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Mood management: I developed depression with the migraines. At first, depression associated with a chronic pain condition and then it developed into Major Depressive Disorder that required medication. Obviously very important to manage a comorbid mental health issue. And for me what is equally important was seeing a psychologist who specialized in pain to help with pain coping strategies. Which leads me to…

Pain management: Managing pain through various coping strategies. And for me, it helped to go to the pain clinic and seeing a pain psychologist to refine my techniques. Pick up things like meditation to add to my strategies. Because the fact is, pretty much no matter what I do, there will be migraines and I have to accept this and have a life with it. This requires adaptation and coping.

Lifestyle Management: This is where we manage the triggers we can, where tinted specs for photophobia, keep ourselves hydrated and other things we have that we can control and manage. Including things like exercise (Although, one could put exercise under pain management as well since for me it was part of my protocol).

Perseverance: It has taken me quite some time to see any improvements on the medical side of things, but there is a lot of things to try. And other changes, likewise, take time and effort. So we need to just keep going.

 

Frames of Mind

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Announcement of this awareness campaign has come out to post your art to help awareness of migraine.

Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8June 11, 2017 at the Westin Boston Waterfront in Boston, MA and other migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.

 

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.

The local ER experience

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On a local site they were complaining about the hospital and most of the complaints were invalid. Mine was not, but that is a side note. The one real complaint I have I didn’t mention because people wouldn’t get it. Because they have no idea how serious migraines can be.

I never go to the ER for a migraine unless it is a status migraine. An acute migraine that has lasted more than three days. Often I go on day 5. And I stopped even doing this long ago.

Here is what the treatment generally is:

Approximately 40% of all migraine attacks do not respond to a given triptan or any other substance. If all else fails, an intractable migraine attack (status migrainosus), that is, an attack lasting longer than 72 hours, should be addressed in an urgent care or emergency department. In rare cases, patients may need to be hospitalized for a short period and may need to be treated with intravenous valproate or dihydroergotamine (intravenously/subcutaneously/intramuscularly) for a few days Medscape

Here is a typical guideline

Or this treatment

The last time I went recently the doctor said we don’t see you often here for migraines and I said no and didn’t explain. But there are reasons. He treated me with morphine because I cannot take toradol anymore. By the way, the One doctor who Didn’t give me the stink eye because I can no longer take NSAIDs by the way. The nurse hooking me up for hydration literally said to me ‘we hydrate because sometimes a migraine can be caused by not enough fluids’. I wanted to tell her it just might… might… be the vomiting, lack of eating, and diarrhea that is to blame after five days of migraine straight. Maybe. Maybe that is why they do that. Just a thought.

Anyway, when I used to go for a status migraine I know for a fact they had no idea what a status migraine was. They always treated with toradol and nothing else. Sometimes with something for nausea, but not always. Sometimes hydrate you, but not always. And they didn’t particularly care if it didn’t work, which it just didn’t. So I stopped going because migraines are low on the list so it is always hours and hours in a very migraine adverse environment, for a treatment that does not work, to leave with a migraine anyway. No real point to it.

Then one day I had a status migraine to which I pushed through like always. Sick. Sleep deprived. On day five I woke up with a numb hand. Permanently numb and over time it spread over that hand. Until the whole hand was numb and had a sharp prickle sensation on it. Turns out it was nerve damage. One neuro says from the status migraine. Another says from a stroke in my sleep caused by the status migraine, causing the nerve damage. Either way, nerve damage. But would it have mattered? No. I would have went to the ER, gotten toradol after a 6 hour wait and left with the migraine and still had the nerve damage. Because they didn’t abort it. Because they don’t know how or care to know how. Or care that I leave that way. It is just a migraine after all. They just need the bed.

So that doctor wonders why I do not go? It never helps. I know I should. Stroke risk. Apparently nerve damage. Heart attack risk. Coma. Death. All higher risks when a migraine like that persists. But I gave up on them. People tell me, I should go to a different ER. Way out of my way and maybe, just maybe the treatment will be better. But to the people who say not to complain about that ER? Don’t even go there. I had one doctor ask Me if one of my symptoms was a migraine aura. Me. If he didn’t even know that, then I can guarantee you he didn’t know what a status migraine was. He gave me two Percocet’s. For a status migraine. Yeah, that did not work oddly enough. Because I knew that wouldn’t work I took one, drove home, and took the other praying for sleep. It failed.

The doctor who gave me morphine, and hydration and a boat-ton of anti nausea meds, well it sort of handled my nausea and it knocked the pain down to a 4… which by the way is so very low that I was one happy camper when I left. I consider him ranked one of the best damn doctors I have ever seen there. At least he had some good bedside manners and didn’t treat me horribly just because I can’t tolerate toradol. Right up there with the fellow who actually did know what a status migraine was and gave me DHE.

So I don’t go to the ER here for status migraines. When I am working, I get them quite frequently and they are a serious problem. But, I do nothing but suffer with them, because there is nothing to do with them apparently but that.