For most of the last three years, I’ve been dealing with mysterious health issues that aren’t migraine-related (in fact, I’ve been doing pretty well migraine-wise thanks to the gammaCore). Brain fog, fatigue, joint pain, vertigo, tachycardia, and muscle pain, stiffness, and twitching have been the main symptoms. The symptoms come and go with one or two usually taking the spotlight at a time. I’ve seen a rheumatologist, several neurologists, three cardiologists, done lots of physical therapy, and had plenty of tests. I’ve been misdiagnosed with several conditions, none of which really seemed to fit what I was experiencing. And I’ve been terrified that I was in the early stages of a degenerative neuromuscular condition.

The Gist

I can say with 98% confidence that, ultimately, all the problems can come down to either side effects of supplements or vitamin deficiencies, some of which were caused by an excess of a particular supplement. The two main players have been a vitamin B12 deficiency and excess magnesium, though there have been other factors. I think I’ve found a balance. If you’re curious, the details are below.

Vitamin B12 Deficiency

The B12 deficiency is easiest to explain, so let’s get it out of the way. I became a vegetarian as soon as I went off the ketogenic diet and wasn’t diligent about getting enough B12. After a bout of severe vertigo—during which I spent the majority of three weeks in bed—and being misdiagnosed with Sjogren’s syndrome, I began supplementing B12 in earnest. It went great at first. My symptoms decreased fairly quickly after starting the supplement—the joint pain and vertigo were gone and the muscle symptoms improved, but didn’t go away completely.

Since I still wasn’t getting enough B12 in my diet, I kept supplementing it. Then the supplement became a migraine trigger. So I tried in earnest to eat more foods containing B12, which also became migraine triggers. And both the supplements and foods also seemed to cause my heart to race. It took months to sort out, but I eventually found that an occasional B12 injection did the trick for getting enough B12. After a while, I was able to eat it again without it being a migraine trigger. But the tachycardia remained.

Excess Magnesium

All the while, I continued taking magnesium at high doses, which I’ve done since 2011. I didn’t need it for most of my daily migraine management (the gammaCore took care of that), but it seemed to help with weather-triggered migraine attacks and I was hopeful it could help with some of my muscle-related symptoms. I was taking 840 mg a day. I’d been as high as 1,200 mg, so I didn’t think much of it. Until two months ago when I finally put all the pieces together and realized that magnesium was likely the cause of many of my remaining symptoms.

One of the unexpected benefits of the gammaCore is that I no longer needed medications I’d used for years, like Wellbutrin and cyproheptadine. I figured that out after they started causing side effects. It took literally years to consider that magnesium could also be causing side effects. Stopping the magnesium was another step toward resolving my symptoms (most notably the tachycardia, which was such a relief), but there was more work to be done.

Calcium and Potassium Deficiencies

My doctor said that the excessive magnesium may have caused an electrolyte imbalance that resulted in calcium and potassium deficiencies. Supplements often trigger migraine attacks for me, so sorting out that out has been a challenge. I’m getting close—I’ve found a calcium supplement I can tolerate and am working to get the right amount of potassium in my diet.

Vitamin D and Protein Deficiencies

But wait! I let a couple other things get out of whack. Always afraid of triggering a migraine attack, I haven’t taken my vitamin D diligently. I’ll take it for a while, get a blood test and see that it’s at a good level, then forget to take it until I get a new round of symptoms. Lather, rinse, repeat. I literally cannot remember how many times I’ve gone through that rigmarole in the last three years.

And that vegetarian thing? I really thought I was getting enough protein. I’d calculated the amount I needed when I was on the ketogenic diet and was mostly keeping up with it. Except I weighed 25 pounds less then and was sedentary. Between my long walks each day and the strength training I now do three times a week, I’m now considered quite active, which requires a lot more protein than I was getting.

Then There’s the Life Stuff

In addition to managing my fluctuating health, the last three years have been fairly stressful. I watched a loved one die of ALS and nearly lost another to suicide. I saw the end of a friendship with someone I once considered one of my essential people. And Hart and I have been trying to figure out what our life looks like without migraine horning in on our marriage all the time—it’s a good stress, but something to figure out nonetheless. On top of all that, I’ve worked nearly full time at TheraSpecs for much of the last year. Again, that’s a good stressor, but it’s taken too much time away from the health and self-care practices my body requires to stay healthy.

Where My Health is Now

I’m doing a lot better physically. I still have to get some dietary details sorted out and need to wait a while to be sure my symptoms don’t come back, but I think I’m basically on top of the problem. I’ll see another neuromuscular specialist next month to be sure my symptoms are really due to vitamin and nutrient issues rather than an underlying condition. But I feel like I’ve basically got it under control.

My Mental Space

I flirted with the idea of getting angry with myself for letting basic vitamins and minerals get out of whack and for taking so long to realize that the magnesium was a problem. That’s ridiculous. I’ve been working just as hard at sorting out these mysteries as I did at finding effective migraine treatment over the years. I’ve been to doctors and talked to my therapist/naturopath countless times. I’ve been trying so hard and yet I missed some things. I didn’t fall down on the job; I had a surprisingly complicated situation to figure out.

It’s been tough to have these weird symptoms at the same time as I’ve been feeling better migraine-wise. I’ve spent much time worried that I went from being disabled by migraine to either having another disabling disease or, worse, a horrible disease that would kill me prematurely with much suffering along the way. I’ve managed these emotions as they come and they haven’t been too frequent, but they’re terrifying when they do come.

But right now I’m in a good space mentally with my health and the other life stressors I’ve juggled in recent years.

What’s Next

I can’t predict what’s next, but I know what’s now and what I hope for in the near future. I’ve cut my hours at TheraSpecs back to 20 hours a week to allow more time for managing my health and, I hope, doing more writing and advocacy work. I’ve been making time for regular exercise and now need to get on top of healthful eating again (my diet isn’t terrible, but it’s not as vegetable-forward as I’d like to it be). I’m aiming for at least one post for The Daily Headche and one article or video for Migraine.com each month this year. So I hope to be around more often in the coming months!

P.S. My latest article for Migraine.com is Green Light Therapy for Migraine. The NPR story on green light therapy that circulated in December left me with more questions than it answered, so I interviewed the lead researcher to get a better grasp on the research.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. I have nonstop migraines for months at a time
2. 3 days plus nasty day after if not continual
3. Extreme vertigo one night watching tv but first ocular no headache caring for Mom with advanced Alzheimer’s
4.4-9’5
5. Last year finally
6. Honestly changes there’s herniated discs stomach oh all kinds of issues to the point what is migraine and what else is going on Fear
7. Between vitamins ect over 20 plus plus plus ice plus physical therapy plus trigger points plus dry needles moving on to acupuncture and piercing possible
8. Madness anxiety nausea vkmiting dizziness vertigo new stuff all the time
9. Triptans major anaphylaxis reaction Maybe sulfa based Migranal allergy to dextrose feverfew allergy to NSAIDs ALL Turmeric works but swelled up muscle relaxants cortisone taurine magnesium b vitamins Xanax Not done yet!!
10. Try to get out of bed stay out of bed till must rest
11. Weather fronts Florescent lights lots sugar Emotionsl dress ESP ex because emotionally abusive
12. I don’t feel like me anymore
13. Strokes losing my mind
14. Oh try this…
15. I wish I could take aspirin
16. Dark rooms quiet and ice and support from unexpected sources
17. My home
18. Why are you so upset
19. So how’s it doing today
20. Understand when I have to cancel
21. You have a right to feel upset with having a real disease
22. I had to quit work and can’t work if tgere are Florescent lights
/3. My life has bed. Brought to a daily struggle to just do the basics
24. To have patience and many people suffer from them
25. Emotions only last 90 seconds physical your fear or anxiety will pass It’s just the migraine talking
26. Learn every thing you can about this disease NOW
27. The ones who helped me most during my parents illnesses ESP my mothers
28. There’s very little you can do to control it just trying to deal every day is truly a struggle sometimes It controls my life not vice versa
29. It needs more publicity and we need to know we are not alone in this very alienating disease
30. There are so many destructive diseases out tgere Migraines are just one of a vast amount of suffering The key us we all suffer if not now at another point so let’s practice compassion for each other (hard to do when migraines make me angry. But it’s a daily struggle!)

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is:
Chronic Daily Headache
Migraine with Aura

2. My migraine attack or headache frequency is:
I have some migraine symptoms about 20 days per month

3. The first migraine attack or headache I remember was:
I was 16 and was talking about a weird, terrible headache I was having to a guest from out of town. She said it sounded like a migraine. I have no idea when they first started

4. My pain levels range from:
My migraine frequency and pain levels have changed a lot in the past couple of years. Right now my pain ranges from 1-5, with very infrequent spikes to 6 or 7.

5. I was diagnosed in:
Approximately 1999

6. My comorbid conditions include:
Anxiety and depression

7. I take __7__ pills each day for prevention and __0__ pills to treat an acute attack
Amerge worked well for me in aborting acute attacks but I had a stress related heart attack last year and my cardiologist and neurologist both told me that I shouldn’t take triptans. I occasionally try Advil and Coke as an abortive if I notice a migraine coming on suddenly. Every once in a while this combo will help.

8. In addition to pain, other symptoms I experience include:
Nausea, light, sound and small sensitivity, dizziness, vomiting, diarrhea, trouble speaking, fatigue, confusion, drooping eye, and to go along with my neck pain, I know have pain that feels like TMJ

9. Treatments I have tried include:
Tricyclic antidrpressants
Beta blockers
Verapamil
Imitrex
Maxalt
Amerge
fioricet
Accupuncture and traditional chinese medicine
Massage
Food trigger avoidance
I’m currently trying 600 mg of magnesium and 400 mg of riboflavin
I’m sure I’m forgetting some things

10. During a migraine attack or headache, I:
lay down in a quiet dark room and cover my eyes with a cold pack. Try to meditate and rest.

11. My migraine attacks or headaches are triggered or get worse when:
I’m stressed
Around my period
I’m not sleeping or eating regularly

12. The most frustrating part about having migraine or a headache disorder is:
Having no control
Not being able to plan anything
Missing out on things I’d like to do because I know they’ll cause a migraine
Feeling like my husband is cheated out of a full life by being with me

13. Having migraine or a headache disorder causes me to worry about:
Losing my job
Migraines getting worse
My life passing while I’m in bed waiting to feel better

14. When I tell someone I have migraine or a headache disorder, they usually assume or say:
That it’s just a bad headache
That I can find a solution if I just try hard enough

15. When I see ads or articles about migraine or headache disorders, I think:
I already knew that
That’s misleading
I remember when ______ worked for me
I hope that helps someone!

16. My best coping tools are:
Rest
Meditation

17. I find comfort in:
My husband
The knowledge that I’ve gotten through years of difficult times and that I have the tools to get through this as well

18. I get angry when people say:
I get angry when family members ask me to do or eat something that I’ve explained many, many times before I can’t do/eat.

19. I like it when people say:
I’m sorry you have to deal with that

20. Something kind a person can do for me during a migraine attack or headache is:
At work, tell me to take it easy and do what I need to do for myself
At home, help me prepare the bed, cold pack, glass of water and keep me company if I ask

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is:
Migraine is fascinating
Everyone’s triggers are different
I’ve never heard of that, but I believe you

22. Having migraine or a headache disorder has affected my work/school life by:
Reducing my productivity
I don’t pursue promotion or jobs that involve travel because I know I can’t tolerate the stress or upsetting my routine

23. The hardest thing to accept about having migraine or a headache disorder is:
It’s not going to go away
Almost no one understands how bad it is
That there are debilitating symptoms besides the pain
For years I thought it was going to get better with menopause, but I’m starting to doubt

24. Having migraine or a headache disorder has taught me:
That I have to live with the reality of my life – not my life as I’d like it to be, but my actual life

25. The quotation, motto, mantra, or scripture that gets me through hard days is:
I’m going to be ok

26. If I could go back to the early days of my diagnosis, I would tell myself:
Learn as much as you can
Find doctors who listen

27. The people who support me most are:
My husband
My sister

28. The thing I most wish people understood about migraine or headache disorders is:
How it pervades every aspect of your life.
The constant anxiety

29. Migraine and Headache Awareness Month is important to me because:
Awareness has gotten so much better. I appreciate all the information that is available now

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Keeping up with the ketogenic diet and coordinating a new treatment (more on that soon) are taking all my energy right now. But I wanted to share my response to an email from someone who asked what my migraine attacks were like before I started DAO and what other migraine treatments I have tried. The list is too long to compile; instead, I summarized the migraine treatments that have helped me since finding the first somewhat effective one in January 2010. It’s an interesting snapshot.

I’ve had a gradual lessening of the pain since adding various treatments over the last six years. Before that, the pain rarely dropped below a 7 and regularly reached an 8-9. I also had a handful of attacks with level 10 pain, though I am very reluctant to rate my pain as a 10.

January 2010: Began using the NuvaRing continuously. Didn’t affect my baseline pain levels, but stopped the level 10 pain that came with menstrually associated migraine attacks.

November 2010: Moved to Arizona from Boston (weather was a major trigger for me). Made the migraine attacks a little more manageable, but I can’t quantify the improvement. The biggest part is that it freed up some of my energy to began researching and trying different treatments.

January 2012: Began taking about 700 mg of magnesium a day. After that, the pain ranged from 4-7 and occasionally got higher than 7 (maybe several times a month). I ultimately pushed the dose to about 1,000 mg a day.

August 2012: Began taking 12 mg of cyproheptadine. Pain ranged from 4-6 and hit a 7 an average of three times a month.

January 2014: Began DAO (diamine oxidase) in conjunction with a heavily restricted diet. My pain typically ranged from 2-4, but hit a 5 at times. This is when triptans (Amerge) were first effective for me, so I was finally able to abort migraine attacks before they got bad.

March 2015: I once again began getting migraine attacks every time I ate. The pain is usually 2-4. It sometimes hits a 5, but doesn’t get above that. Amerge is not longer a reliable acute medication. Fatigue and cognitive dysfunction are now far more disabling for me than the pain.

January 2016: Began a ketogenic diet. In the last month, I’ve been able to eat 250 calories without always triggering an attack. I typically still have at least one attack a day. (In addition to eating still triggering some attacks, I am much more sensitive to other environmental triggers and can’t go out in public without having an attack.) Amerge helps inconsistently. My pain ranges from 2-4. I can’t remember the last time it was a 5. The cognitive dysfunction is a lot better, but the fatigue is still disabling.

(I followed up with another email clarifying that I have particularly intractable chronic migraine and that this man’s wife will likely find an effective migraine treatment far more quickly than I did.)

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is: Chronic Migraine.
2. My migraine attack frequency is: sometimes daily, at least five a month. Menstrual migraines too.
3. I was diagnosed in: 1989
4. My comorbid conditions include: IBS, low blood sugar, anxiety
5. I take Pizotifen and magnesium medications/supplements each day for prevention and Imitrex and ginger root tea (made from raw ginger root, and boiling water) sometimes metaclopromide to stop nausea if the ginger is not working: medications/supplements to treat an acute attack
6. My first migraine attack was: aged 9
7. My most disabling migraine symptoms are: agonising right or left head pain, the lethargy and tiredness, the watering eye/sinus pain, the yawning
8. My strangest migraine symptoms are: no longer have the aura but still have terrible vertigo and sensitivity to light
9. My biggest migraine triggers are: hormones, change or routine, and I don’t know what. genes?
10. I know a migraine attack is coming on when: Yawning, watery eye, eye socket pain, lethargy.
11. The most frustrating part about having a migraine attack is: the loss of time. We don’t live long and about a half of my life is being wasted. My poor boyfriend who sees me suffer.
12. During a migraine attack, I worry most about: My poor boyfriend.
13. When I think about migraine between attacks, I think: Dear God what did I do to deserve this.
14. When I tell someone I have migraine, the response is usually: Oh, I had one once.
15. When someone tells me they have migraine, I think: Do you have a cure? What works for you?
16. When I see commercials about migraine treatments, I think: Tried that…. #fail.
17. My best coping tools are: Dark room. Quiet. Triptans. Ginger root (helps with sickness and head pain). Cold compress out of freezer. Shower. Hot water helps.
18. I find comfort in: knowing it won’t kill me.
19. I get angry when people say: Oh, you have a headache……………try tylenol.
20. I like it when people say: Oooh that’s really bad. How do you function? I hope you find a cure.
21. Something kind someone can do for me during a migraine attack is: Find me somewhere to hide, help me take my triptan. And a nice lady who gave me a clean nappy bag to throw up in in some dignity. You are a Nice Lady.
22. The best thing(s) a doctor has ever said to me about migraine is: Hopefully the menopause will help finish this a bit.
23. The hardest thing to accept about having migraine is: That it is probably genetic and I’m saddled with it for another 20 years. Damn.
24. Migraine has taught me: to value being well. And not to drive when taking triptans.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: YOU WILL GET THROUGH THIS. Relax. Go to your inner self. Sooth. Breathe. Shower. Rest.
26. If I could go back to the early days of my diagnosis, I would tell myself:
27. The people who support me most are: My boyfriend. (love). My friends, my doc even though he can’t cure me.
28. The thing I most wish people understood about migraine is: That it is a serious debilitating neurological condition, not an excuse not to come to your wretched party.
29. Migraine and Headache Awareness Month is important to me because: I can support the cause.
30. One more thing I’d like to say about life with migraine is: Thank you for inventing Triptans, big pharma. Now can you please make them cheap (as cheap as it is in Austria, 13 Euros for six tablets)

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

I wonder how she got that. I’m doing pretty well right now, I thought. A week later: J. was totally right. I’m barely hanging on.

I’d written about how great I felt on Adderall and was hoping the effects of were not dwindling. They were. After a three-week energy boost, I returned to about 75% of where I was before the June infusions. This might seem disappointing, but it was a huge improvement. (The fatigue was so severe in August and September that I almost bought a walker to get around the house. Walking to the dining table took so much energy that I ate on the kitchen floor. I tripped over the slight ridge in a slate floor tile because couldn’t lift my foot high enough to clear it. I was living with crippling fatigue, yet the severity was still nearly unfathomable. So, even though I was no longer super-charged, I was pretty happy with the result.)

The Adderall also keeps my pain from getting above a 4 most of the time, even during a migraine attack. I’m grateful for this, but the pain has been the least of my migraine woes for the last couple years. (I never thought I’d say that!) Even with Adderall, I am severely fatigued during an attack. The fatigue continues to be even more disabling for me than pain at a 6 or below.

This up-and-down cycle of fatigue (plus cognitive dysfunction) has been going on since early November. I can’t predict how severe the migraine attack that follows eating will be, even when it’s a food I eat frequently. I never know how much energy I’ll have when I wake up or how long it will last. If a few good days follow tweaking something in my regimen (like increasing my magnesium or Adderall), I’ll think I’ve figured it out… then the benefits will dissipate.

I was eager to start a ketogenic diet January 3. It’s a high-fat, low-carb diet that’s used to treat epilepsy in children. (It’s also a trendy diet for body builders and people wanting to lose weight, but the version for epilepsy is a lot higher fat and lower carbohydrate.) The ketogenic diet seemed like a drastic change that could really make a difference. I saw no improvement. As January wore on, the migraine attacks seemed to get even worse. I was demoralized and panicked. The ketogenic diet was my trump card; I had no idea what to try next.

Ten days ago, the dietitian changed my meal plan to increase the fat and decrease the carbs. It’s brought some remarkable, but sporadic, improvement. I still have to take an Amerge and two Midrin every time I eat, but some days I barely notice the migraine at all. Then I’ll do something reckless, like try a vitamin D supplement(!), and have a downturn for several days. I’ve felt really good on about half of the past 10 days. Yet the progress feels substantial enough to have restored my hope.

I’m back to feeling like maybe the ketogenic diet will make a difference. The dietitian said it can take three months for the metabolism to fully shift, so I am hopeful more progress is ahead. Also, there’s room to increase the fat and decrease the carbs in my diet, which could mean even greater improvement. The fatigue is a drag and I wish I could think more clearly, but I’m optimistic that I’m on the right track.

The last year has frayed my optimism, leaving me with tatters that I feared could not be rewoven. Slowly, slowly I’m finding the threads and knitting them back together. I can’t say I’m out of survival mode, but I no longer feel like I’m in constant crisis. With my hope and optimism returning, I feel more able to cope with the setbacks that are sure to come.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: AT LEAST once per week
3. I was diagnosed in: 1995 with Migraine but developed chronic migraine in my early 20s
4. My comorbid conditions include: None that I’ve been diagnosed as having
5. I take magnesium, Saw Palmetto each day for prevention and over the counter PM pain killers to help me sleep through an acute attack. I’ve tried relpax, avamigraine, tonopan, depakote, imitrex, nortriptilene and the list goes on with no success. I’m getting ready to meet with a new neurologist. The last did all he could but the prescription meds did nothing to help me – story of my life.
6. My first migraine attack was: 1995 (15 years old)
7. My most disabling migraine symptoms are: Excruciating Headache, Nausea, Blurred Vision, Depression, Light Sensitivity
8. My strangest migraine symptoms are: Frequent Urination which I experience prior to an attack and sometimes during one.
9. My biggest known migraine triggers are: bananas, not eating on time, physical exertion, sunlight
10. I know a migraine attack is coming on when: I see twinkling lights, a black circle blocks out the field of vision in one of my eyes, I feel Euphoric, I feel depressed, I smell citrus when there’s no citrus present,
11. The most frustrating part about having a migraine attack is: My life has to be put on hold.
12. During a migraine attack, I worry most about: If it’s a whammy the pains too much for me to worry. If it’s not, I worry about being a burden and I worry about everything that needs to be done but I can’t do. Sometimes I worry about dying.
13. When I think about migraine between attacks, I think: Is this it? Have I finally struck upon something that works? or Take your time, don’t over do it, you don’t want to trigger a migraine. N.B. I’m very rarely migraine free.
14. When I tell someone I have migraine, the response is usually: Oh I’m so sorry/I have them too.
15. When someone tells me they have migraine, I think: Honestly – I wonder if they really know what a migraine is. Then I think aww… not another sufferer.
16. When I see commercials about migraine treatments, I think: LIARS!
17. My best coping tools are: My religious beliefs and the support of my family.
18. I find comfort in: reading and mediating on the Bible; praying; attending congregation meetings; low key nights with my hubby; family gatherings – when I can attend; blogging and assisting in volunteer work when I can.
19. I get angry when people say: I have headaches too. You just need to get out more. You need to exercise more.
20. I like it when people say: Tell me what your life with migraine is like. Not for pity, I just want to be understood.
21. Something kind someone can do for me during a migraine attack is: Phone to find out if I need something to eat.
22. The best thing(s) a doctor has ever said to me about migraine is: You have chronic migraine. We need to break the cycle. I never knew that the majority of my headaches (which never stop – literally), were migrainous. My husband and I were on the search for what was wrong with me. That neurologist finally answered our question.
23. The hardest thing to accept about having migraine is: You must work within your limitations.
24. Migraine has taught me: To be empathetic towards others.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: 1 Corinthians 10:13: No temptation has come upon you except what is common to men. But God is faithful, and he will not let you be tempted beyond what you can bear, but along with the temptation he will also make the way out so that you may be able to endure it. and Isaiah 41:10, 13: 10. Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.’ 13. For I, Jehovah your God, am grasping your right hand, The One saying to you, ‘Do not be afraid. I will help you.’
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a headache specialist.
27. The people who support me most are: My husband, parents and sister-in-law.
28. The thing I most wish people understood about migraine is: It’s not just a headache. It’s disabling neurological disease.
29. Migraine and Headache Awareness Month is important to me because: Because we need to be understood and we need better treatment plans across the board. Not just one or two patients who happen to strike upon the right doctor.
30. One more thing I’d like to say about life with migraine is: This neurological disease takes so much away from you. It takes your life, your freedom, your self-esteem, your passion and so much more.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: nearly every day
3. I was diagnosed in: 2012
4. My comorbid conditions include: Ehlers-Danlos Syndrome, which has also led to dysautonomia, GERD, IBS, panic disorder, and body-wide joint issues
5. I take propranolol, verapamil, B2, CoQ10, Prozac, & Magnesium each day for prevention, and Frova, Zofran, Antivert, & Xanax to treat an acute attack
6. My first migraine attack was: as a young child, we now think I had abdominal migraines nearly from birth.
7. My most disabling migraine symptoms are: vertigo & brain fog
8. My strangest migraine symptoms are: olfactory hallucinations
9. My biggest migraine triggers are: lights — bright, fluorescent, or blinking
10. I know a migraine attack is coming on when: my vision gets wonky
11. The most frustrating part about having a migraine attack is: never knowing when they’re going to happen
12. During a migraine attack, I worry most about: not freaking out my kids
13. When I think about migraine between attacks, I think: um… is there a between attacks?
14. When I tell someone I have migraine, the response is usually: 50% some idiotic suggestion for drinking vinegar or some other ‘cure,’ 25% sympathy/empathy, 25% suck-it-up
15. When someone tells me they have migraine, I think: Oh you poor thing!
16. When I see commercials about migraine treatments, I think: Right. Treatments work that well without nasty side effects. NOT.
17. My best coping tools are: distraction, Netflix, cuddles, ice packs
18. I find comfort in: soft dark fuzzy
19. I get angry when people say: If only you would…
20. I like it when people say: What’s that like for you?
21. Something kind someone can do for me during a migraine attack is: point out that I should grab an ice pack & take some meds
22. The best thing(s) a doctor has ever said to me about migraine is: I will not give up on you.
23. The hardest thing to accept about having migraine is: there is no cure
24. Migraine has taught me: not to make plans that I can’t unmake in a hurry
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I don’t really have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: Go see a decent doctor in your 20’s you idiot!
27. The people who support me most are: my husband and my kids
28. The thing I most wish people understood about migraine is: it can steal your life, and there is no cure
29. Migraine and Headache Awareness Month is important to me because: I don’t think enough people understand how nasty this disease is and how many people it impacts
30. One more thing I’d like to say about life with migraine is: Migraine doesn’t just affect those of us with the disorder, it also has profound impacts on our family members, friends, and other caregivers

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

My name is Brenda and I am 34 and lived with Migraines for what feels like all of my life. I am new to living with Mulitple Sclerosis in addition to my friend the migraine and blog about living with these invisible diseases at www.stellarevoltuiondesigns.com. I also sew and knit ALOT….It was interesting to read fellow folks answers so I thought I would share mine!

1. My diagnosis is: Migraines
2. My migraine attack frequency is: off medication-15-20 per month,on meds-3-4 per month
3. I was diagnosed in: Migraines were part of my life for so long, but only really got properly investigated in 2010.
4. My comorbid conditions include: Relapsing-Remitting multiple sclerosis, Polycycstic ovary syndrome
5. I take 2 medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack
6. My first migraine attack was: full of vomit, I’m sure
7. My most disabling migraine symptoms are: photosensitive, sensitivity to smell, photosensitive, dizziness, nausea, mental fog
8. My strangest migraine symptoms are: numb side of face, mixing up names or lack of remembering them at all.
9. My biggest migraine triggers are: smells, weather changes, stress, hormones
10. I know a migraine attack is coming on when: I get sharp ringing in my ears, numb side of my face, visual disturbances
11. The most frustrating part about having a migraine attack is: there is really no stopping it
12. During a migraine attack, I worry most about: how to drive myself home from where ever I am
13. When I think about migraine between attacks, I think: I try not to…
14. When I tell someone I have migraine, the response is usually: I get headaches too…ugh
15. When someone tells me they have migraine, I think: to ask what works for them, compare notes/meds and also feel their pain.
16. When I see commercials about migraine treatments, I think: that list of other side effects is something I don’t need
17. My best coping tools are: McD’s french fries (salt and magnesium) and Coke (caffeine) to shrink those nasty blood vessels
18. I find comfort in: my dark gray bedroom
19. I get angry when people say: I get headaches too.
20. I like it when people say: I’m sorry you have to deal with that. Is there anything I can do to help.
21. Something kind someone can do for me during a migraine attack is: my husband knows that he will have to go buy some food as any smells during an attack make it incredibly worse.
22. The best thing(s) a doctor has ever said to me about migraine is: they are real
23. The hardest thing to accept about having migraine is: I’ve lived with them so long I almost prefer them to having an attack of my Multiple sclerosis because I know how to deal moderately successfully with migraines, I am still learning how to deal and accept my MS diagnosis.
24. Migraine has taught me: to listen to my body and not just push through
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I’ve got a good success rate going, survived 100% of days up to this point.
26. If I could go back to the early days of my diagnosis, I would tell myself: start taking preventative meds sooner
27. The people who support me most are: my husband, close friends, some coworkers
28. The thing I most wish people understood about migraine is: how hard it is to function when you have one, and how much relief can come from a dark room.
29. Migraine and Headache Awareness Month is important to me because: it opens up avenues of communication and reminds me I am not alone in this.
30. One more thing I’d like to say about life with migraine is: life goes on, make time for your own health and so accept things as they are by having back up plans B, C, D, E, F for everything.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. I have had chronic daily headache (CDH) for 5 years.
2. The first headache I remember is: I was nine years old, and it was around Christmastime. My third grade teacher was making gingerbread men ornaments for us to take home, and the smell of the spices was so strong it triggered my very first migraine.
3. After my first headache, it took 5 years to get a diagnosis of migraine headache. At that point, I began taking daily preventatives. My migraines were episodic at the time; they transformed into chronic daily type in 2011.
4. My pain level fluctuates.
5. My typical pain level ranges from a 6 to a 10, but normally hovers around a 7.
6. In addition to pain, my symptoms include: dizziness, nausea, vomiting, confusion, aphasia, mood swings, ringing in my ears, blurred vision, depersonalization, neck spasms, sensitivity to light and sound, allodynia on my face and scalp, and irritation to my trigeminal nerve (I also have trigeminal neuralgia).
7. Treatments I have tried include: everything, basically, but to break it down, I’ve tried beta blockers, calcium channel blockers, anti-epileptic agents, gabapentin/lyrica, oral contraceptive, SSRIs and SNRIs, Botox, occipital nerve blocks, DHE infusions, deacon infusions, methergine, massage, acupuncture, and cognitive therapy. I’ve tried others, I’m sure, but that’s what I remember from the top of my head.
8. I take too many medications/supplements each day for prevention and not the right medications/supplements when the pain becomes unbearable. My go-tos for prevention are nadolol, methergine, Savella, magnesium, clonazepam, topamax, iron, and oral contraceptive. My abortives are indocin, migranal, tizanidine, vicodin, promethazine, zofran, and compazine.
9. When the pain gets bad, I usually wind up stuck in bed for days/weeks on end and inevitably I wind up admitted into the hospital for inpatient treatment.
10. The most frustrating part about having CDH is my loss of autonomy.
11. Because of CDH, I worry about not being able to provide for myself and not being able to be a productive member of society; my mother and my grandmother need my help, specifically, and with me being this sick, I can’t do anything for them at all, even though I desperately want to.
12. When I tell someone I have CDH, the response is usually a mixture of lack of understanding and a shallow “oh I hope you get better soon” which, really, is the same thing.
13. When I see how little research and information exists on CDH, I feel invalidated. Billions of dollars can go towards obesity, for example, which in most cases can be completely prevented, and yet migraine is left out in the cold.
14. Having CDH has affected my work/school life so negatively that I can no longer enroll in classes. I should have graduated with my diploma in 2011. It’s now 2015 and I still have almost 2 years left before I’ll be done.
15. Having CDH has affected by family life in the sense that it has fractured my relationships with everybody. Not being able to handle phone calls and not being able to drive places to meet with people, or not being able to handle looking at my cell phone to FaceTime relatives has been horrific because I have essentially been cut off from my family.
16. The one word that best describes my experience with CDH is chthonic.
17. My best coping tools are sleeping, praying, sleeping, and spending time with my mom. And sleeping.
18. I find comfort in knowing that I am not alone. I am not the only person suffering from CDH, and that gives me more comfort than words can say.
19. I get angry when people say it’s just a headache, because it really isn’t.
20. I like it when people say that my pain is real and that I am allowed to have my moments of remorse over my situation.
21. Something kind someone has done for me in relation to CDH? One time my mom rubbed cream into my feet for four hours while I was vomiting and sobbing my eyes out from pain on Christmas Day in the ER of all places when my migraines had just started to transform to chronic daily. I will never forget that. Ever.
22. The best thing a doctor has ever said to me about CDH is that he believes my pain is real. By contrast, the worst thing a doctor has ever done was prescribe two Tylenol pills to swallow while I was actively vomiting while admitted inpatient to treat 10/10 pain.
23. The hardest thing to accept about having CDH is knowing that at the age of 26, I might never live to see a pain-free day for the rest of my life.
24. Having CDH has taught me patience. It has taught me to be patient with other people (like doctors and nurses and strangers when I’m not feeling well), but most importantly, it has taught me to be patient with myself. I can’t rush myself to the point of pain, to the point where I lose my sanity or my health. My well-being has to be a priority, and I am the only person capable of ensuring it remains that way.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH comes from a Catholic saint who was a nun back in the 1600s. St. Teresa of Ávila suffered from chronic daily headaches and everybody basically thought she was crazy until some of her writings were corroborated by writings that were being made in convents in other locations at the time, so basically, she was vindicated. She lived every single day in excruciating pain, and yet she had the peace of mind to write these words:
“Let nothing disturb you,
Let nothing frighten you,
All things are changing:
God alone is changeless.
Patience obtains all things.
Whoever has God lacks nothing;
God alone suffices.”
26. If I could go back to the early days of my diagnosis, I would tell myself to buckle up because it’s gonna get bumpy, but DON’T GIVE UP. Also, ginger really helps with nausea so buck up and ignore the taste.
27. The people who support me most are my mom, my step-dad, and my grandma. If my dogs counted as people, I would include them as well.
28. The thing I most wish people understood about CDH is that it is a DAILY headache. It’s not a cop-out excuse. I sort-of hate the word “headache” in the official terminology because at least for me, it’s not a daily “headache” – it’s a daily “want-to-vomit-oh-god-the-room-is-spinning-the-sun-is-too-bright-why-is-everything-so-freaking-loud” migraine. And maybe that’s what I wish people would understand most about CDH. It’s so much more than daily head pain. It’s a complex syndrome of neurological symptoms that actively impedes daily activities and interferes – quite painfully, at that – with every attempt to eke out an actual “quality-of-life” existence in spite of the pain.
29. Migraine and Headache Awareness Month is important to me because it provides the opportunity for a common condition to receive the recognition and visibility it so deserves. Migraine is not just a head pain. It is a neurological condition that has a widespread effect on a person’s body, within a person’s family unit, and upon a person’s community. Advocacy for research for treatments and, hopefully a cure, will hopefully allow millions of people to live a life free of pain and other symptoms. It will let people like me return to living a normal life.
30. One more thing I’d like to say about living with CDH is: It’s hard. It’s hard to wake up every morning and have that split-second where you think that your head might not hurt that day until you blink and realize that the pain is still there. It’s hard when you sneeze and a lightning bolt shoots from the base of your neck towards the back of your eyes. It’s hard when your favorite foods become fodder for the toilet. It’s hard when you see your social circle slowly begin to dwindle and, eventually, disappear altogether. Living with chronic illness like CDH is not easy. It is not something a person wishes upon oneself. It’s not something you can say “it gets better” to or “just don’t give up” and magically feel better about it. However, there will be glimmers, sunny days and smiles and laughter and reminders of who you were before this disease consumed your life. And when you’re reminded of who you were, cling to that memory. Underneath the pain and confusion and hurt and trauma of being invisibly ill, you’re still you. And you are beautiful. And you will survive.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.