29 Things Only Someone with Severe Migraines Would Understand

Written by Delaney Ashdale and Ralph Bardeaux | Published on February 26, 2015
1. You know it’s way, way more than just a “bad headache.”

2. You heard about how doctors used to drill holes into patients’ heads and thought: “Maybe that’s not a terrible idea…”

3. A bird chirping is not your idea of a pleasant morning.

4. You don’t need a near-death experience to “see the light.”

5. You don’t need to ride the Tea Cups at Disneyland to feel horribly dizzy.

6. You’ve spent enough time sitting in dark rooms alone that you feel like a less exciting Batman.

7. You blurt out “No!” before someone can finish asking “Are you sure it’s not —”

8. That dog that won’t stop barking next door sounds like it has a gateway to your brain.

9. Just looking at a jackhammer makes your head bang.

10. You often struggle to concentrate, but don’t have ADHD.

11. There are painkillers, and then there are pills that actually kill the pain.

12. Unlike granola, migraines are the worst when they come in clusters.

13. It’s like giving birth without any joy, just pain.

14. There’s nothing silent about a “silent” migraine.

15. Drinking to dull the pain only makes your head hurt more.

16. Coffee is not the best part of waking up.

17. You know how exhausting it is to run a marathon, even though you’ve never actually run one.

18. Smells can make a severe migraine worse, so don’t even THINK about coming over here with that popcorn or salami, pal.

19. Then again, migraines can sometimes make you crave weird food and – Hey, where are you going with that salami?!

20. They sometimes start with a euphoric feeling, which is like being handed a lollipop before being hit by a truck.

21. A severe migraine can make you so tired that … oh forget it, I’m too exhausted to think of a punch line.

22. Your face can go numb when you have a severe migraine, so now your head hurts and you’re drooling. Great.

23. A really bad one can make you turn as pale as a vampire. Only you won’t live forever or run really fast.

24. You’re pretty sure a bomb shelter isn’t quiet and dark enough.

25. Someone has suggested an orgasm as a cure. Nice try, Don Juan. Now pull your pants back up.

26. A severe migraine can bring on speech disturbances. And your co-worker’s laughter at your sudden Cajun accent really doesn’t help things.

27. The auras get so bad that you feel like you’re hallucinating. And not in the fun, Burning Man kind of way.

28. Severe migraines can last a week or more, so when you feel one coming on, you know that you can write off the rest of the month.

29. After a really bad migraine, you always suspect another one is hiding right around the corner, like a sneaky, uncool ninja.

 

So. First day of the year and I had a breakdown. All of a sudden I started crying uncontrollably. Then the panic set in. Hitching sobs, breath catching, hard to breathe. Nausea, dizziness, sweaty palms, heart racing. I was fine just moments prior. Lightning fast, it came on. As they tend to do. Everything seemed to crash down on me. I was terrified of every thought I had. I was overwhelmed with feelings of loss, fear, dread. The room seemed to shrink right in front of me. The area around my chair seemed to be in a bubble. I was trapped. No way out. It seemed darker, almost ominous. I tried deep breathing, telling myself I was okay, I’d get through this, I’d been here many times before. Didn’t matter. I was in the moment and couldn’t distract myself. Couldn’t calm down. Every breath was a struggle. I was drowning. I saw  black flashes of light, not enough air. I fought my way to my room. Found my pills. Took one dry. My furbaby Samantha jumped up on the bed. I started stroking her soft fur. She laid down next to me as I sat back against the headboard. She began to purr. I tried to match my erratic breaths with her slow, steady ones. As the meds kicked in, and Sam help to ground me, my heart slowed. My crying turned into quiet sobs. The nausea faded. The panic started to ebb. I began to feel peaceful, tired, relaxed. Sam looked up at me and I actually felt a smile on my face. She calms me. I’m so thankful for her presence and our bond. She is so attuned to my moods, emotions, and eases them. She is the other half of my heart and soul. I fell asleep to her soft, healing purrs. 

It can be a frightening and disconcerting experience to speak to someone and realize that what is coming out of our mouths sounds a bit like a golden retriever.

This is one of the many symptoms of Migraine with Aura that sidelined my personal life. It was also breaking news when Serene Branson suffered transient aphasia in the middle of her live news report.
Aphasia is an acquired condition in which the patient loses the ability to do one or more of the following: speak or understand speech, read or write, perform or understand mathematical tasks.

Aphasia can occur suddenly or over a period of time. In the Migraineur, it is usually a symptom of aura and comes on suddenly. It feels a bit like this – One moment you are speaking and understanding a conversation, and the next moment *POOF*you’re in another country, confused and completely out of your element and out of control.

Thankfully unless the Migraine patient suffers a condition called persistent aura, or permanent damage occurs due to a Migrainous stroke, aphasia is temporary. It comes and it goes. Physicians call this Transient Aphasia, because it is not a permanent deficit. It does not require therapy to overcome.

What happens during an attack of aphasia?

It is now understood that Migraine aura is the result of an electrical wave that pulses across the brain called Spreading Cortical Depression. As the unusual electrical wave spreads across the brain, our neurons fire in an abnormal way and our brains can become confused. We see things that aren’t there. We may feel, hear or smell things that aren’t there too. Even our sense of time and space may be altered. As the spreading cortical depression hits the parts of our brains responsible for these and other functions (such as language) we experience strange aura symptoms.

There are two different parts of the brain responsible for language. They are called Broca’s area and Wernicke’s area. Each area controls different parts of language — 1. Function, and 2. Understanding.

Broca’s area is responsible for function — speaking, reading and writing words and numbers. (Words and numbers are all part of language) Aphasia in this area of the brain is often called non-fluent aphasia or expressive aphasia, because the individual has lost the ability to speak words or sentences, although the ability to understand language has not been affected. The patient will struggle to find the right word or number, and not be successful. The reason these patients have aphasia has nothing to do with loss of motor skills in forming words — it is a neurological phenomenon.

Wernicke’s area is responsible for understanding words and numbers. Aphasia in this area of the brain is often called fluent aphasia or sensory aphasia, because although the patient can speak using mostly normal words, they are often nonsensical – as if the words’ meanings had been re-arranged. The person speaking has no idea they aren’t using language correctly and will often be shocked when later presented with a recording of their conversation. They also cannot understand what anyone else is saying to them.

There are many different ways to classify aphasia, but those classifications are usually restricted to permanent deficits. When the aphasia is caused by Migraine, it is usually and simply called transient aphasia. A patient suffering aphasia is called Aphasic.

Migraine patients often may not simply suffer aphasic symptoms from one or the other area, but mixed types. Additionally, one aphasic experience may not be as severe as the next — or vice versa. Just as each aura is different, each experience with aphasia may be different too. Knowing how our brains work normally and during a Migraine is often helpful however, in relieving stress from the unknown.
Knowledge truly is power! I sometimes have aphasia — what can I do?

Carry a wallet card explaining your condition: These cards can be purchased from various aphasia websites, or you can simply create one yourself that says something like: “Hello, my name is ______ and I sometimes suffer transient aphasia as part of Migraine aura or side effect of a medication I am taking. This means I may not be able to understand or speak to you right now. To help me, please call ________.” Don’t forget to warn the person (or doctor) whose phone number you’re using that they may receive a call. Help them by providing them with instructions you would like them to give the caller such as: How to contact someone for transportation home. Where your medical information is located. Where you store your medications so a helper can get them to you. How to contact your spouse or physician.
Carry an instruction sheet that includes the information above, as well as contact information for significant others who can help you.
Carry a small pad and pencil with you.
Carry a smart phone with GPS tracking enabled. An example of one program that allows “friends” to see where you are is: Google Latitude
Consider creating a one button text code to a loved one that indicates your situation when you’re alone.
Remember to create an auto dial number for ICE on your phone (In Case of Emergency) and direct it toward someone close to you who is usually available. Emergency personnel depend on these numbers and will look for them. Multiple ICE numbers can be followed by #1, #2, etc. May also code APHASIA with an emergency number in your phone too. This will help emergency personnel or helpers to assist you.
Remember — no matter how confused and alone you feel, You. Are. Not. Alone.

What can my loved ones do to help me?

Keep paper and writing tools handy “just in case”.
Use gestures if necessary.
Speak slowly and carefully and give plenty of time for single word responses.
Use drawings or pictures to be understood
Educate yourself about Migraine and aphasia so you can advocate for your loved one when they have lost their own voice.
Plan ahead and practice — what will you do if you receive a call from someone trying to help your loved one?
Be ready with hugs of encouragement. Don’t lose patience. Give plenty of time for your loved one to try to communicate with you.
Be sure to summarize a thought or idea you think they have and give them the opportunity to nod or shake their head to indicate their agreement or disagreement.
Remember this is a temporary situation beyond their control. They are alone and scared.
After the attack is over, review together what happened and make any changes to your plan necessary for the next time.
Aphasia and Migraine medications

Aphasia is sometimes a part of Migraine aura (often mistakenly called Complex Migraine — an antiquated term) but it can also be a side effect of preventive medication you may be taking for your attacks. Be sure you cross check all your prescriptions for this potential, no matter how rare they may list it. Gabapentin and pregabalin are two examples of medications that list aphasia as a potential side effect. Do you know of any others?

If you have recently (last 6 months) changed your preventive and suddenly are experiencing transient aphasia, consider talking with your doctor about it. Any changes in your normal Migraine pattern needs to be discussed anyway. Your aphasia may be a symptom from your medication and changing meds may be warranted to see if the symptom disappears on its own. Your own aphasia may be short and not affect your life much at all. Then again, it may be serious and even necessitate major life changes like it did with me. Either way, it is a severe symptom that you will want to be sure and minimize. This means education and becoming proactive.

Do you have additional ideas for readers dealing with transient aphasia? What is your story?

New Year’s eve. A time to reflect upon the past  year. Remember good times and bad. I’ve had both. A lot of painful days and sleepless nights. Medical tests and medication side effects. New meds. New symptoms. A positive outcome to a nearly five year fight for Disability benefits. Lawyers, doctors, judges, paperwork. Social services. Some assistance there. Social Security and Medicare with less hassle than I expected. Mom is doing well. Good medical reports on her health. Positive (fingers crossed and prayers said) outcome for my furbaby Samantha’s surgery. An unbelievable outpouring of love for me and Samantha from our fundraiser. Thanks again to all of the donors and well wishers. Thoughts about moving back to my home state of Delaware. Not sure just yet. I’d hate to leave my doctors, but there are plenty nearby in Philadelphia. Options. I’ve been homebound more this year than any other. Trying to stay positive and strong. I still have treatments and medications I haven’t tried. I’m pushing myself harder than ever to go out, keep appointments, even just go to lunch. Home is comfortable. I can control my environment. But I can’t let it get too comfortable or I’ll never want to leave. I have to say a huge thank you and I love you to all of my online friends. You’ve been my only link to the outside world for most of this year and previous years. You’ve all been so supportive and empathetic to my issues. I feel the love through your posts and messages and even phone calls from some of you. I’m so grateful to have my online communities and groups where I can open up about my situation and my feelings about everything. Finding people with similar interests and issues and discussing solutions and options with them. Just to know y’all are out there makes things easier. Much love to every one of you. Best wishes for a happy, healthy New Year to all of you and your families and friends. 2016 will be a better year! Carry on and Always Keep Fighting! 💕

A Former Federal Peer Reviewer’s Analysis of the Draft CDC Guidelines
Posted on December 30, 2015 in Government with 8 Comments
Brooke Keefer
Brooke Lee Keefer

In my former life prior to chronic pain and illness I had many important and fascinating jobs. One was as a peer reviewer for the United States National Institutes for Health (NIH), Center for Mental Health Services (CMHS), and Substance Abuse and Mental Health Services (SAMHSA); and New York State’s Education Department, Office of Mental Health, and Office of Alcohol and Substance Abuse Services. I reviewed multi-million dollar grants, provided consumer input to agencies, and served on publication committees and focus groups. When the opportunity arose to comment on the draft “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my peer reviewer skills to objectively identify the strengths and weaknesses of the document.

Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids. It is not objective, therefore, I found it impossible to be objective. It was biased which made me completely biased (in the other direction). Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process. A huge no no. Here is the comment I posted on the CDC site (I omitted my introduction):

As a consumer and citizen, I request you halt further activity regarding these guidelines until a consumer board can be developed—one that is solely made up of chronic pain patients who have experienced primary care access issues to opioid medication. I also request you conduct focus groups of chronic pain patients who are on opioids. Only then will you have guidelines that serve the public, the primary care doctors, and the chronic pain patients.

It is imperative a section in the guideline be created detailing how adequate pain control is a fundamental right of every patient. Point to the Joint Statement from 21 Health Organizations and the Drug Enforcement Administration, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve” (http://www.deadiversion.usdoj.gov/pubs/advisories/painrelief.pdf). In addition, in this section provide a thorough review of the risks of untreated chronic pain, i.e. suicides, depression, unemployment, lower quality of life, etc.

Throughout this document it is mentioned there are no adequate long term studies that prove opioid medication is effective, leading the reader to believe opioid medication never helps patients long term, which is not true. If you conducted a focus group of chronic pain patients you would understand the complexities of opioid pain management and long term effect. It became clear to me this document was written in a biased manner when I read the “Effectiveness of Alternative Treatments” section. It boasted these treatments effective under 6 months. Nowhere in this document did I see a similar positive citation for opioid treatment for short term use though hundreds exist. The writers excluded the fact these alternative treatments, like opioids, had no proven long term benefits. Furthermore, the alternative pharmacological agents, i.e. gabapentin, SSRIs, NSAIDs, etc. are touted as excellent treatments with little to no risks. The writers should have included information on the hundreds of possible side effects, some very serious, each of these drugs carry. The risk of death, overdose and suicide is very real for some of these medications and literature citations stating as such was discluded.

The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting. It also does not define whether in overdoses there were additional drugs or alcohol contributing to the overdose (polydrug overdose) and whether these overdoses were legitimate pain patients or illegally obtained prescriptions. These guidelines should not include such statistics. This is not a paper about criminal activity and misuse. Only statistics for actual pain patients should be included.

Information must be included describing the fact primary care doctors may be the only opioid prescriber in their area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. I did like that you included a few sentences encouraging physicians to be compassionate. Please expand on this. Most of us are treated like a nuisance and criminal. Include information on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications.

Information about actual pain conditions is slim, which is disconcerting. The fact you include cataracts as a painful condition and not severely painful conditions like chronic pancreatitis, complex regional pain syndrome, shingles, back and spine issues, trigeminal neuralgia, endometriosis, adhesion pain, kidney stones, and more shows the lack of familiarity of the team of writers with true chronic pain populations.

Teach patients basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication. Also, the naloxone section should be removed or limited to a sentence. True chronic pain patients rarely experience overdose and should be dealt with by emergency personnel.

—End of comment—

The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic and they are incapable of being objective. A document like this must be objective and unbiased.

Brooke Keefer is a mom to three sons ages 28, 19, and 4 and has a 2 year old granddaughter. Brooke has a Bachelor of Science degree in Mathematics from the State University of New York at Albany. For over 15 years she worked as a not-for-profit director, lobbyist, advocate, and a grants writer, manager, and reviewer in the field of children’s mental health. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, http://www.sodae.org.

Readers Give Thanks for the Largest Donation Ever to Migraine Research
By Kerrie Smyres—December 14, 2015Readers showed a stunning outpouring of gratitude for the Wendy and Leonard Goldberg’s $8 million donation to migraine research, part of a $10 million donation to UCLA Health Services. Many of the comments were spontaneous expressions of joy, beautiful in their heartfelt simplicity: “10 million likes!” “Woo hoo!” “So grateful!” “WOW!” “Awesome!” “Amen!” Here are some more words of thanks from Migraine.com readers and patient advocates:

“The Goldbergs have touched a nerve. It’s so significant that it’s hard to explain. Perhaps it is that migraine has simply been ‘heard’ by kind hearted souls whom are able to make a real difference. Thank you to the Goldbergs for listening and giving. “

“Is there an emoji for doing cartwheels with rainbows and unicorns in the background? Because that’s how amazing this is!”-Katie Golden, Migraine.com Patient Advocate

“I am so grateful. I have tears in my eyes right now. My husband has had daily migraines for the past 10 years. So grateful someone cares this much.”

“Wow! So generous and so reassuring that someone actually understands what so many of us are going through and that we’re worth the research efforts.”

“Dear Wendy and Leonard: Your amazing gift makes it the first time in history it can feel good to be a migraine sufferer. Thank you so much.” -Lisa Benson, Migraine.com Patient Advocate

“Seriously brought tears to my eyes. Such a beautiful thing.”

“Good things are on the horizon, I can just feel it!!”

“this is the most wonderful news i have heard in a long time.”

“sooo wonderful for all of us and we thank them from the bottom of our hearts” ❤

“Oh my goodness! This is exciting news. They are wonderful, generous people and I pray God’s blessings for them.”

You can read even more thank yous on Migraine.com’s Facebook post about the donation.
Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

Chronic Pain Patient to CDC: “I AM NOT AN ADDICT”

Posted on December 20, 2015 in Government with 8 Comments

After 5 yrs of episodic migraines, I’ve graduated to chronic daily (intractable) migraine. I’ve tried Botox, chiropractic, biofeedback, vitamins, minerals, supplements, acupuncture, acupressure. Looking for preventive. I’ve tried around 20 of them with no lessening of symptoms, or side effects worse than the Migraine itself. Abortive triptans have too many side effects, beta blockers didn’t work. Antidepressants, Elavil, Zyprexa, numerous others, no luck. I’m currently in the hell of pain management. Awesome doctor, trying injections, but dependent on Opioids as main drug. Ativan for anxiety, Prozac for depression, Toradol injectable works for 1-2 days, but can only use 2x/mo. I don’t want to live like this. I want to get my life back. I’ve been unable to work since 2011. I was finally approved for SSDI after 4 yrs., 3 appeals, and an awesome lawyer. Once benefits start regularly, whenever that many be, I will try injections under anesthesia and a Ketamine nasal spray. (Expensive!) I don’t know if it’s become MOH now or not. Any ideas? Trying desperately to carry on and #AlwaysKeepFighting! 

The migraineur in your life wants you to know:

Migraine is a real disease.
There is no test for Migraine.
There is no known cause.
There is no cure.
It’s not just a headache.
It’s not a mental illness.
It is possible to have a migraine attack every day.
Bright lights, loud noises, strong smells, certain foods…they really do trigger attacks.
It can take days to recover from a single attack, even once the pain is gone.
It isn’t safe to drive during a migraine attack.
All those meds are not the problem.
Meds don’t always work.
Most doctors are not trained to treat Migraine.
Emergency rooms are not always kind to Migraine patients.
There’s a shortage of qualified doctors.
There will be months, even years of trial and error.
I am sure this all seems unbelievable. What you observe appears confusing at best and frustrating in your weaker moments. I understand. I also love a few people with migraine. Despite living with this disease for over 40 years, I still have moments when I doubt my loved one’s truthfulness. Sometimes I wonder if they “did something” to trigger an attack. I get frustrated when it appears they are not taking their medicine as prescribed. Nothing irritates me more than to hear one of them complain about the pain and then tell me they haven’t done anything to try to abort the attack.

As a wife and mother to migraineurs…
These very behaviors drive me nuts. After all, haven’t they heard my lecture about treating attacks early and aggressively? Don’t they remember the lessons on sleep hygiene, trigger avoidance, keeping a migraine journal, taking medicine as prescribed, and so much more? I get frustrated because they have the opportunity to learn from an advocate any time, day or night. They are the only ones who get to wake me in the middle of the night because of a migraine attack. Not everyone gets that chance. Honestly, my irritation is more about my own ego than about their journey with migraine.

As a migraineur…
I completely understand why someone would choose to risk an attack by intentional exposure to a trigger. Forgetting to take medicine or delaying treatment also makes sense to me. It’s never about not wanting to get better. We get tired of always watching for triggers and setting alarms to take medicine two, sometimes three or four, times a day. It’s exhausting to manage this illness and it’s only made worse knowing that most people won’t believe that we are really sick. Some might understand and still not care. Sometimes we just want to live like a normal, healthy person for just a while. We know it’s an illusion, but we just need a break from being sick. So we pretend to be healthy to distract us from the never-ending hypervigilance of an incurable disease with no known cause.

Yes, we do put on a show.
At some point we may even try to push through the pain in order to participate in an important social event. Try as we might, we just can’t put on that show 24/7. Sooner or later we’re going to break. Often that is at home with our loved ones. If we can’t fall apart with you, then what other option do we have? We know that we are unreliable. This disease has made us that way. We also know that you are irritated, annoyed, and frustrated. We take it all very personally. It’s okay to feel that way – we certainly do. We just want to know that you are still on our team – that you will go to bat for us when we need it most.

We need you.
We need you to learn about this disease. Although we didn’t ask for this, it has taken control of our lives. It would just be so much easier if just one person really understood what we go through. We really want that someone to be you. Living with migraine is so lonely. Having you makes this life brighter and more hopeful. You matter to us, even when it seems like we don’t care about anyone. Please take the time to learn, to understand, and to accept migraine. It will mean the world to us if you do.