Constant Cancellations – the rare friend who can navigate chronic migraine

NOTE FROM JUDI – Holly, you are so lucky to have found such a great friend! This is my hope after losing many. Love to you both! Carry on and Always Keep Fighting!
Constant Cancellations – the rare friend who can navigate chronic migraine
 Profile photo of hollybee

It’s a rare find: the friend who can handle all the idiosyncrasies that come with chronic migraine.  The requests to find a quiet restaurant, to choose the chair that faces away from a bright window or light, to avoid certain foods, and to put up with endless last minute cancellations can challenge and confuse even the most patient and kind person.  For the friend of a migraineur, becoming knowledgeable about the many triggers can feel like a job in itself, with sensitivity to light, sound, smells and foods lurking around every corner.  However, the friend that can show understanding without judging these needs is key.  So many people with migraine have felt severe judgement for this invisible condition that often gets downplayed as “just a headache.”  “You don’t look sick” is an unintentional hurtful statement we’ve all heard before.

This condition has tested many of my long-time friendships and caused me to lose several shorter-term friends. The impact of migraines on those surrounding the sufferer is immeasurable:  The worry, constant changing of plans, and sense of helplessness is both paralyzing and crazy-making.

The ability to receive chronic cancellations and not take them personally takes a confident person who truly believes and accepts the condition of daily migraine.  The pain often causes the sufferer to retreat into into a dark quiet space until the storm has passed- and can make communication impossible for windows of time.  By its very nature, migraine is isolating.

People new to me or the subject of chronic migraine are both eager to solve the challenge and confident they can.  It’s a natural tendency to want to help someone feel better and to assume someone can get better.  I have been asked many questions and offered seemingly endless ideas until it becomes clear to my new acquaintance that this is a mystery that can’t be solved and rather is a condition that needs to be accepted.  Some are not comfortable with this arrangement.  I can end up feeling judged for not trying hard enough to “get better” when truly after over 30 years of doing just that, I’ve learned that while I continue to look for solutions, my energies are better spent on my family and getting along in life rather than engaging in a battle that can’t ultimately be won.

So while it is clear that chronic migraine can wreak havoc on any relationship, it is equally clear that those who emerge as steadfast friends willing to brave the relentless and repeated storms are phenomenal examples of warmth and kindness, patience, nonjudgmental flexibility, and acceptance.

Here’s to the core group of friends and family who have weathered this storm right along with all of us.  Your humor, patience, and love has meant the world in helping us face this challenge day after day.

Pic and quote from Judi.

wpid-fb_img_1422990380527.jpg

 

Emotional Rescue

wpid-wp-1432820287000.jpegIt happened out of nowhere. One minute I’m watching Supernatural on tv, my furbaby Samantha on my lap, relatively pain-light thanks to pain meds, the next minute tears are rolling down my face. No particular reason. I didn’t see a Folgers© commercial or have Sam claw me in a sensitive area. I just started crying. And couldn’t stop. My breath hitching as I tried to keep quiet and not let Mom hear. I hate for her to hear me and worry. The more I tried to hold it in, the harder it became. I started to have trouble catching my breath, could feel the signs of a panic attack beginning. My heart raced, I was sweating, and had chills. Dizziness and nausea came next. I tried breathing exercises to no avail. Samantha was purring and kneading on me, which usually helps. But I had waited too long and gotten too worked up. I got up and made my way to the bedroom for anti-anxiety meds. I took one with a big glass of water. I took a couple deep, cleansing breaths. Slowed my breathing. Eventually stopped crying and began to feel better. I scooped up Sam and sat back down in my chair. After a while, I began to doze and fell asleep to an encore episode of Supernatural which always eases my mind. My last conscious thought was Sam purring and wondering how much worse this panic episode would have been had I also seen a Hallmark© or Phone company commercial. I’m afraid I’m turning into a emo pile of mush. Hopefully, this too shall pass. In the meantime, carry on and always keep fighting!

2016 The Road So Far

Some days are better than others. I don’t mean a little better, but drastically better. Just like some days are worse than others. Much worse. Such is life with chronic pain. I don’t have good days as opposed to bad days anymore. I have a variety of low pain, extreme pain, high stress, low anxiety, panic filled, relatively bearable, can’t take it anymore days. Or hours. Or episodes. Time is broken down differently. I can’t foretell an entire day, so I break it down into small increments. I got out of bed. Success. I attempted to shower. Couldn’t do it. Will try again tomorrow. I got dressed for appointment with psychologist. Took my pills. Hit with wave of extreme exhaustion. Couldn’t hold my eyes open. Went back to bed. I guess 4 hours sleep last night didn’t cut it. Slept for an hour and pain woke me up. Got into chair with heating pad for lower back and ice for hip. Tried to eat. No appetite. Got frustrated thinking of all I had to do and couldn’t. Started crying. Exacerbated migraine. Took more migraine meds. Couldn’t stop crying. Took more anxiety meds. It’s now 9:00 am. Appointment is at 2:00 pm, 20 minutes away by interstate. Will the side effects let up by the time I have to leave?! Will I be able to wait until I get back home to take more meds. What if I get there and can’t drive home?! Dizzy and uncoordinated from meds. Can I drive?! What if I get pulled over?! Will there be a “missed appointment” fee?! Will Social Security get involved if I miss another appointment regardless of reason?! Depression and self-doubt. Guilt and self-pity. Fear. Why can’t I do simple things anymore?! Why does every part of my body hurt?! Why doesn’t the medication work?! Will I live the rest of my life like this?! Can I?! Do I want to?! Why is this happening to me?! My emotions are all over the place. My body hurts. My brain hurts. I’m physically and emotionally drained. I try so hard to stay positive. To believe that things will improve. I know this moment will pass. I’ve been through this so many times before. Deep breaths. In and out. Calming breaths. I can do this. I am stronger than this. I can beat this. I WILL beat this. Just not today. I’ll try again tomorrow. Better days ahead. wpid-wp-1422496248237.jpeg

2015 review of migraine research  

wpid-wp-1432820251735.jpeg
Profile photo of Tammy Rome

We have all heard that there are limited funds for migraine research, a shortage of qualified doctors, and infrequent launches of new treatments.  When was the last time you heard anything about what is actually being done to improvetreatment for migraine patients? The really great news is that researchers are working hard on shoestring budgets, trying to find better ways to help us manage migraine. They haven’t given up, so neither should we.

Here is where we stand right now.

Sumatriptan intranasal — Avanir Pharmaceuticals, Inc.
This new intranasal delivery device for low-dose powdered sumatriptan, ran into problems when subjects had difficulty using the device properly during clinical trials. In late 2014, the FDA declined to approve Sumatriptan intranasal until the company assess the cause of these user errors. Avanir planned to provide new data in 2015, but was acquired by Otsuka Pharmaceutical Co. Ltd. Since the acquisition, no new information has been released. Hopefully they will finish the job in 2016.

Semprana® (inhaled DHE) – Allergan, Inc.
Allergan has been working on an inhaled version of DHE that has received three FDA denials. The company announced FDA approval would come in mid-2015, but there’s been no news. I doubt this one will be available any time soon, if ever.

Lasmiditan — CoLucid Pharmaceuticals, Inc.
Phase 3 Trial: A Study of Two Doses of Lasmiditan (100 mg and 200 mg) Compared to Placebo in the Acute Treatment of Migraine: A randomized, double-blind, placebo-controlled parallel group study

If it gains approval, this will be the first triptan without vasoconstriction. This would be a boon for patients who cannot tolerate the side effects of vasoconstriction or for whom it is contraindicated. The Phase 3 clinical trial will enroll over 2000 subjects who all have risk factors for cardiovascular disease (making them ineligible to use current triptans). The study is projected to be completed in mid-2016. Let’s keep our fingers crossed that this one gets to market very soon!

Topofen™ gel (ketoprofen) – Achelios Therapeutics
Phase 1B Trial: Study to Determine the Efficacy and Safety of ELS-M11 in Acute Migraine

This one caught my eye because I used to be able to get ketoprofen over-the-counter. It was my preferred abortivefor years, working much better than Excedrin and almost as good as triptans. This topical ketoprofen gel can be applied to the skin over the 3 branches of the trigeminal nerve at the first sign of a migraine attack. So far, there has been one small Phase 1 trial with promising results. 45% were pain-free from 2-24 hours after application. 50% were pain-free after 24 hours. Unfortunately, there’s been no news about future trials.

Subcutaneous Histamine dihydrochloride – BioHealthonomics Inc.
Phase 2 Trial: A Multicenter, Randomized, Double-blind, Placebo-controlled Trial to Assess the Efficacy and Safety of Subcutaneous Histamine Dihydrochloride for Migraine Prophylaxis

In late 2013, filed an application with the FDA for a small human trial. Unfortunately, the study is still listed as “not yet recruiting.”

Intranasal Kinetic Oscillation Stimulation – Chordate Medical
Phase 2 Trial: A Randomized, Placebo-controlled, Double-blind, Multi-center Pilot Study to Evaluate the Prophylactic Effect and Tolerability of Intranasal Kinetic Oscillation Stimulation (KOS) Using the Chordate System S200 in Patients Diagnosed With Migraine

This study was scheduled for completion in 2015. We can expect trial results to be available sometime in 2016.

Intranasal Oxytocin (TI-001) – Trigemina, Inc.
Phase 2 Trial: TI-001 (Intranasal Oxytocin) for Treatment ofChronic Migraine
Study results are expected in early 2016.

Occipital Nerve Stimulation – Boston Scientific Corp.
Occipital Nerve Stimulation (ONS) for Migraine: OPTIMISE will evaluate the safety and efficacy of the ONS Precision System for the management of intractable migraine. Results are expected in June 2017.

Neuromodulation System – Scion NeuroStim
A Non-Invasive Neuromodulation Device for Treatment of Migraine Headache
This study is scheduled for completion soon, so watch for results late in 2016.

MLD10 (magnesium l-lactate dehydrate) – Pharmalyte Solutions, LLC
Phase 2/3 trial: MLD10 in the Prevention of Migraine in Adult
This study is scheduled for completion in late 2016 so results won’t be available until 2017.

MK 1602 (Small molecule CGRP antagonist) – Merck & Co. (acquired by Allergan)
Phase 2 trial is complete. Phase 3 study to begin soon. Watch for details coming later this year. This is the only oral CGRP antagonist currently in development.

LY2951742 (humanized CGRP antibody) – Eli Lilly and Co.
Phase 2B: Randomized, Double-Blind, Placebo-Controlled Study of LY2951742 in Patients With Episodic Migraine

Results were reported in 2015 showing that this once-monthly injection safely reduced migraine headache days for episodic migraineurs. This confirmed previous study results. No word on the start of Phase 3 trials. However, Lilly has initiated two Phase 3 trials for episodic and chronic cluster headache. The FDA fast-tracked these trials based on the severity of cluster headache and the woeful lack of available treatments. If it succeeds, this will be the first preventive for cluster headache in history.

ALD403 (CGRP antibody) – Alder Biopharmaceuticals, Inc.
Phase 2B trial: A Parallel Group, Double-Blind, Randomized, Placebo Controlled, Dose-Ranging Phase 2 Trial to Evaluate the Efficacy, Safety, and Pharmacokinetics of ALD403 Administered Intravenously in Patients With Chronic Migraine

The study of this genetically engineered humanized CGRP antibody began in late 2014. News of the results are expected in early 2016.  Alder also initiated a Phase 1 study to investigate quarterly self-administration of ALD403. Following announcement of the results (also in early 2016), a Phase 2B study will determine optimal dosing for episodic migraine patients. Alder also has a Phase 3 trial planned for high-frequency episodic migraine and one for chronic migraine.

TEV-48125 (humanized CGRP antibody) – Teva Pharmaceuticals
Phase 2 trial: A Multicenter, Randomized, Double-Blind, Double-Dummy, Placebo-Controlled, Parallel Group, Multi-Dose Study Comparing the Efficacy and Safety of Subcutaneous LBR-101 With Placebo for the Preventive Treatment of Chronic Migraine

Phase 2 trial: A Multicenter Assessment of TEV-48125 in High Frequency Episodic Migraine

TEV-48125 is a humanized monoclonal antihuman antibody that binds to CGRP, blocking its ability to interact with human CGRP receptors. The results of two Phase 2 trials published in 2015 generated a lot of excitement within the migraine community because 15% of the subjects treated with the drug experienced a full 12-week remission of migraine headache symptoms. 11% experienced a 75% reduction and 53% experienced at least a 50% reduction in migraine days. Even better, no serious side effects were reported. We’re still waiting for news about Teva’s plan for Phase 3 trials.

AMG 334 (fully human CGRP receptor antibody) – Amgen
Phase 2 trials:
A Phase 2 Study to Evaluate the Efficacy and Safety of AMG 334 in Migraine Prevention
A Study to Evaluate the Efficacy and Safety of AMG 334 in Chronic Migraine Prevention
Study to Assess the Long-term Safety and Efficacy of AMG 334 in Chronic Migraine Prevention

Phase 3 trial: Study to Evaluate the Efficacy and Safety of AMG 334 Compared to Placebo in Migraine Prevention

AMG 334 is a fully human monoclonal antibody that targets the CGRP receptors. Results from the Phase 2 trials are expected in 2016. We will have to wait until 2018 for results from the Phase 3 trial.

These are just the highlights.

According to the National Institutes of Health, there are over 622 clinical trials studying the mechanisms of migraine as well as drug and non-drug acute and preventive treatments.So the next time you start to feel discouraged, thinking that nobody is doing anything to help migraine, remember that there are scientists hard at work trying to ease the burden of migraine.

Many Symptoms of Migraine

By Kerrie Smyres – January 30, 2012
Pure pain best describes the migraines I’ve had this week. My entire head, including the roof of my mouth, throbs in time with my heartbeat. I hear blood whooshing in my ears.

They demand my attention for hours until, if I’m fortunate, two Midrin let me sleep. When I awake my head is usually still throbbing.

Those who have never had a migraine tend to think of it as a raging headache. While sympathetic folks may understand that the pain is awful, even they don’t realize that a migraine is not only a headache. While it is certainly a major aspect, pain is one of many symptoms of migraine. Personally, pain was a primary concern until I started taking indomethacin last June. Nausea, dizziness and fatigue were often present, but were overshadowed by the pounding. Now, indomethacin generally controls the pain well enough that I’ve been able to see just how debilitating the other symptoms are.

This recent bout with high pain levels has me thinking about how misunderstood migraine is by the general public and even by migraineurs and health care professionals. The pain is a big deal, but it is only a small part of this neurological disorder that impacts the entire body. Migraine: The Complete Guide, a book published by the American Headache Society in 1994, has the most comprehensive list I’ve found. Though the book is old and no longer available this list is invaluable.

Visual Aura (before the pain begins)

a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
flashes of light and color
wavy lines
geometric patterns
blurred vision
partial loss of sight
Sensory

numbness or tingling on the face or upper extremities
a sense that limbs are a distorted shape or size
heightened sensitivity to light, sound, and smells
smelling odors that aren’t actually present (like natural gas or something burning)
skin sensitivity and intolerance of being touched (allodynia)
Motor

partial paralysis
weakness or heaviness in the limbs on one side of the body
Cognitive

mental confusion
disorientation
inability to concentrate
difficulty finding words
problems understanding spoken or written language
Digestive

food cravings (particularly for carbohydrates, candy and chocolate)
stomach rumblings
constipation
Fluid disturbances

increased thirst
frequent urination
bloating/fluid retention
Mental/Personality

fatigue, lethargy
mood changes
irritability
high energy
irritability
depression
anxiety
nervousness
euphoria, feeling of intense well-being
Digestive

nausea
vomiting
intolerance of food odors
loss of appetite
diarrhea
constipation
Skin

paleness
cold, clammy hands and feet
facial swelling
goose bumps
bloodshot eyes
black circles around eyes
sweating
Respiratory

frequent yawning
sighing
hyperventilating
nasal congestion
runny nose
Circulatory

changes in blood chemistry
changes in blood pressure
blood vessel dilation
difficulty regulating temperature
changes in heart rhythms
Though quite detailed, this list is by no means complete. I can add dizziness and trembling. What about you? Which of these symptoms do you have? Do you have other symptoms not listed here?

NOTE FROM JUDI – Since I hear at least once or twice a week “it’s only a headache!” (Cue music from “Psycho!”) This article bears posting over and over again! Thanks Kerrie! Much love! 💕wpid-wp-1432820181903.jpeg

Fear of losing my caregiver By Tammy Rome—January 12, 2016

January 12, 2016

Our caregivers are a valuable and necessary part of our health care team. Without their help with day-to-day needs, our lives would be so much more difficult. Have you ever wondered what would happen if you lost your caregiver? Does the thought fill you with panic? Do you know how you would cope? Recently, that very thought caught me unprepared.

My turn as caregiver

In October, my husband needed outpatient surgery. We were scheduled to check in at 5:30 am. Knowing I might be waiting for several hours, I stocked a backpack with water, snacks, and entertainment to occupy my time. At 9:30 am the surgeon informed me that he was in recovery and should be ready to go home in about 30 minutes.

Hours passed without any news. I started to worry that something might be seriously wrong. A nurse finally called me at 12:30 pm. She explained that my husband was having trouble waking up from the anesthesia and estimated he would be ready to leave within the hour. I was relieved to hear that he would be able to go home soon. Unfortunately, that was just the beginning.

Ninety minutes later, the surgeon reappeared asking me to follow him. I entered a tiny room where my husband was sitting up. A nurse was encouraging him to take deep breaths. She explained that although awake, he was still struggling to keep his oxygen levels high enough. She urged me to keep him awake and breathing deeply as he would not be released until his oxygen levels stayed high for at least 2 hours.

That is when things got scary.

He was upright, but certainly not alert. He kept falling asleep and resisted my attempts to wake him up. I watched the monitor as his O2 level dropped lower and lower. I reported this to the nurse and she called the doctors to recommend admission overnight for supplemental O2 and monitoring. I knew he would not like that idea, but still agreed with her assessment. I was really scared for him.

A respiratory specialist was called in to evaluate him for admission. By the time she arrived, he was a lot more awake and talking. After a chest x-ray and exam she determined the problem was undiagnosed sleep apnea. He would need a sleep study in a few weeks, but otherwise he was okay. After 10½ hours, he was finally going home!

It’s easier being the patient.

Even in the middle of a bad migraine attack, I am still in control. Sitting on the sidelines, watching my husband struggle, and being unable to do anything about it was nerve-wracking. I felt so helpless. Instinctively I started breathing deeply as if my breath could somehow give him the oxygen he needed.

My mind wandered to that unthinkable outcome: “What if he dies?”

He is my rock, and quite practically, my caregiver when things get bad. The thought of living without him is difficult to imagine. In addition to the emotional loss (which would be unbelievably horrible), there are practical matters – things that he always does. I like to think that I am pretty independent, but the reality is that I depend on him a great deal. The transition to living alone would be difficult.

Just the thought of it is scary. Thoughts spun out of control…

Who would give me those precious injections when migraine spins out of control?
Who would drive me to the ER at 3:00 am when nothing else worked?
Who would fetch ice packs, a drink of water, or something to eat when the pain weakened me?
Would I be able to take care of our dog and cat alone?
How would I ever keep up on the house?

To everyone else, I appeared calm, self-assured, and in control of my emotions. I was his rock, steady and solid. My nightmarish thoughts never broke the surface. I locked them away and let my subconscious catastrophize at will. There wasn’t time to process that mess. I was needed in the real world.

Making a plan

A few days later, I gave myself permission to unpack the mental box where I had stuffed all that worry. Examining my thoughts and emotions, a realization emerged. The odds are good that I will someday be a widow. It probably won’t be for decades, but women do have a longer life span than men. It doesn’t hurt to think about how I will cope from time to time. This won’t be the last time I sit in a hospital, worried about him.

When he was fully recovered, we talked openly about the possibility of his death, my fears, and then created plan. We scheduled an appointment with our insurance agent to discuss changes to our life insurance. While nothing can ever replace him, we now have a plan to ensure there are funds available should I require hired help. We’ve never avoided discussions about death. We just never thought about migraine in that context. Thanks to my temporary panic, we were able to plan for that possibility. Should he ever get sick again, I will be much better prepared to deal with any outcome, including my own irrational thoughts.

If you haven’t planned for your medical needs in the event of your caregiver’s death, please think about it. Just having a plan can make the fear of his or her death a lot less scary.

NOTE FROM JUDI: Tammy hit on one of my biggest fears in this article. In my case, it’s my Mother. I pray daily for her continued good health as we take care of each other. As hard as it is to think about, we must have a realistic conversation and a plan for the future. Thanks Tammy for touching on a subject so near and dear to all of the chronic pain warriors in our lives. Continued good health and happiness to you both. 💕wpid-wp-1422496248237.jpeg

Step Into My Shoes

wpid-fb_img_1422635977059.jpgI’m not a cruel person. I don’t wish harm or pain on anyone. I am empathetic and compassionate. I value health and happiness above all else. I want that for everyone. Myself included. In my case, the health part has hit a snag. I have Chronic Daily Migraine, chronic pain, and Fibromyalgia. Most mornings, after little or no sleep the night before, I struggle to get out of bed. Some mornings I’m successful,, others not so much. I take pills when I get up, more at lunchtime, midday, dinnertime, and before bed. Rough nights, I may need something overnight. These pills are my only option right now to allow me to function. Depending on your idea of functioning. Most days I can’t leave the house. If I must, you know, it’s doctor appointments for me or Mom or vet visit for my emotional support furbaby Samantha. Pharmacy and grocery store are my other fun outings. I have to plan a day in advance to try to leave the house. Depending on the time of day, my pain level, when I took pills, side effects, weather, and many other outside forces that impact my ability to drive or even walk. I’m in Pain Management and my doctor assures me even though we haven’t exhausted all options yet, even with treatment, I’ll still likely be dependent on pills to get through the days. I have many doubters. I know I do. “It can’t be that bad.” “It’s just a headache.” “I’m sure you could work if you really tried.” “Be stronger and fight harder.” I’m the nicest person you’ll meet. Like ever. But I want to knock these naysayers and deniers on their collective asses! If they could only see my daily struggle to act normal. To do normal activities. To BE normal! And these comments are from colleagues and “friends.” Now I’ve got the government and CDC getting involved and lumping me in with drugs abusers and addicts. Trying to take away my access to the legal, prescribed pills that are my only source of relief right now. I resent the implications that I am a poverty stricken, low class criminal. I am without a job and unfit to work due to my medical and emotional issues (the emotional comorbid to the medical). I have never committed a crime and have worked full-time since I was seventeen years old. I EARNED my benefits. I am relying on Medicare and Social Security to LIVE or at least get by. I’m sure it’s just a matter of time before they try to take that away too. BTW, I had to fight for almost five full years to be awarded those Benefits, none of which I’ve actually seen yet. I won my Disability appeal hearing in October and still have seen no monetary payments. So, in conclusion, for now, the fact that strangers (laymen, NOT doctors) are going to decide if I can keep taking my prescribed pain medications is beyond insulting. I wish they could all spend a day with me or better yet, take even a few steps in my shoes. (If I can bend down to put them on.)