By

30 Things About My Life with Chronic Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with and without Aura
2. My migraine attack frequency is: I am almost never without some hint of migraine, from the shimmering lights, tingling and numbness or ringing ears that signal its beginning, to the exhaustion that tail behind.
3. I was diagnosed in: I was first diagnosed with Basilar Type Migraine in 2007. At that time my migraine was episodic in nature. I was diagnosed with chronic migraine in 2014, although I think my migraine began transforming from episodic to chronic in 2010.
4. My comorbid conditions include: Fibromyalgia, Chronic Fatigue Syndrome, GERD, IBS and Anxiety.
5. I take 10 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack. I also receive botox treatments for prevention that involve 32 injections to the face and neck. During an acute attack, I often need intramuscular injections of toradol, which I am currently not able to obtain from local pharmacies. The shortage of this medication has impacted my quality of life significantly. I am not able to access the single most successful acute migraine treatment, a class of drugs called triptans because the neurological symptoms I experience make it dangerous to take them. As a result I sometimes receive nerve blocks, which require injections of steroid and analgesic to my head and neck in a similar pattern to the botox (over 30 injections). When my migraines are most extreme I require a 3-5 day IV infusion “cocktail” including magnesium, steroids, toradol, a medication to control nausea and benedryl in order to return to my typical levels of pain. I never expected to be a home healthcare patient at 27.
6. My first migraine attack was: My first full blown attack occurred at 18. It was absolutely terrifying. Looking back though, I believe that I experienced abdominal migraine during childhood, as I often experienced intense stomach pain and vomited without reason. I still have have GI issues, but they currently present as GERD and IBS.
7. My most disabling migraine symptoms are: Visual aura/Vertigo that occurs even when I am relatively pain free. This makes it difficult to complete simple daily tasks such as driving safely.
8. My strangest migraine symptoms are: Numbness & Tingling, & Persistent weakness on the right side of my body. MS runs in my family, and I had to have several diagnostic tests to ensure this was migraine related and NOT multiple sclerosis.
9. My biggest migraine triggers are: The Weather, Not Getting Enough Sleep, Skipping Meals, Alcohol, MSG, Artificial Sweeteners, Processed Meets, Aged Dairy (Cheese, Yogurt etc…)
10. I know a migraine attack is coming on when: My neck hurts and I am seeing shimmering lights. Either one of these things independently could just be a part of how I live my daily life, but if both occur, I am going to need to lay low.
11. The most frustrating part about having a migraine attack is: the time it robs from me. I really would prefer to be productive in the traditional sense.
12. During a migraine attack, I worry most about: What I should be doing that I am not accomplishing.
13. When I think about migraine between attacks, I think: I spend a lot of time thinking about what I can do to improve my overall health and prevent the next lurking attack.
14. When I tell someone I have migraine, the response is usually: “I’m sorry.” Still, I’m not sure most people fully understand the impact that migraine can have on someone’s life when it is chronic. It has had a major impact on my life and my husband’s l(it robs him of so much too).
15. When someone tells me they have migraine, I think: This is someone who understands my pain.
16. When I see commercials about migraine treatments, I think: If only it were that simple.
17. My best coping tools are: my husband who is incredibly supportive, my headache specialist who is VERY responsive, and homemade icepacks which are lifesavers
18. I find comfort in: distractions such as good books and good TV and movies when I am feeling well enough to engage with them.
19. I get angry when people say: “You’re too young to be sick” or “I know someone who used to have migraines until they gave up cheese or chocolate or wine” I know they mean well, but it is so frustrating after years of researching and trying just about every migraine specific diet I can find!
20. I like it when people say: I see how hard you’re working to keep up. I’m not sure this is always easy to see, but its almost always the case.
21. Something kind someone can do for me during a migraine attack is: Offer to help with something that needs to get done.
22. The best thing(s) a doctor has ever said to me about migraine is: Your symptoms are real; I believe you. Let’s work on creating a treatment plan that will reduce the severity and frequency of your pain.
23. The hardest thing to accept about having migraine is: It has no cure. Migraine can be managed effectively, although I’m not there yet. I continue to strive for that, but still it will always be a part of my life.
24. Migraine has taught me: To drink in the days and even the moments when I feel well. I appreciate these times in a manner that I never would have otherwise.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Breathe.
26. If I could go back to the early days of my diagnosis, I would tell myself: FIND A HEADACHE SPECIALIST NOW. Do not pass go. Do not collect $200. Just do it, you will thank me later.
27. The people who support me most are: My husband, who is my greatest supporter and my coworkers who are incredibly understanding.
28. The thing I most wish people understood about migraine is: It can truly be disabling. Also, migraine with Aura can effect every part of the brain and present with nearly every neurological disturbance possible from visual changes, ringing in the ears, changes in sensation, to complete loss of consciousness and/or quadriplegia.
29. Migraine and Headache Awareness Month is important to me because: It is a chance to share my truth, and hopefully help others to understand a little bit more about the reality of living with chronic migraine.
30. One more thing I’d like to say about life with migraine is: It is still a life, just a different one from the one that I had expected. What I mean by this is that I have to be much more mindful of how I choose to spend the precious time when I am feeling well. I have given up on living a “normal” life and instead accepted the beauty of living to the fullest when I am able. Still, I continually seek to find strategies to increase the amount of time that I am feeling well.

MHAMgiveawayReader-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.

By

30 Things About My Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Basilar-Type Migraine with episodic Cluster Headache
2. My migraine attack frequency is: 15-17 days per month
3. I was diagnosed in: June 2010
4. My comorbid conditions include: None
5. I take __3__ medications/supplements each day for prevention and up to 5 medications/supplements to treat an acute attack
6. My first migraine attack was: April 2010
7. My most disabling migraine symptoms are: blindness during aura, loss of motor control during aura, vomiting
8. My strangest migraine symptoms are: forgetting how to do common things–walk, talk, drive, etc.
9. My biggest migraine triggers are: weather, not sleeping
10. I know a migraine attack is coming on when: I get the munchies, visual aura
11. The most frustrating part about having a migraine attack is: not being able to do what I want when I want. Fear of getting stranded somewhere because it’s not safe for me to drive during an attack. Having to leave a job I love and take disability because I could not consistently show up for work.
12. During a migraine attack, I worry most about: being able to take care of my dogs and my family
13. When I think about migraine between attacks, I think:What did I do? Why is this happening–I was 48 when this all started, am 52 now.
14. When I tell someone I have migraine, the response is usually: falls into 2 camps: sympathy or eye-rolling
15. When someone tells me they have migraine, I think: i am sorry you are having this, is there anything I can do to help you.
16. When I see commercials about migraine treatments, I think: I wish it were that easy. Botox has taken me down from daily migraines to 15-17 per month and I am grateful for those good days.
17. My best coping tools are: knowing that I will have a good day at some point during the month
18. I find comfort in: my dogs and my neurologist.
19. I get angry when people say: My family member/friend uses XYZ drug, why don’t you? Like I haven’t tried it or can’t take it because of my migraine type
20. I like it when people say: Can I call someone for you or drive you home
21. Something kind someone can do for me during a migraine attack is: let me know they will make sure my dogs are fed if I am down for more than a few hours
22. The best thing(s) a doctor has ever said to me about migraine is: This sucks and I am sorry it happened to you. Let’s try to get your quality of life back.
23. The hardest thing to accept about having migraine is:
24. Migraine has taught me: To value every good day but not to overdo it.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: You will have a good day this month, just hold on.
26. If I could go back to the early days of my diagnosis, I would tell myself: Take the disability retirement now, don’t wait. I tried to work full-time for 4 years when missing more than 1/2 a month of work on a regular basis. I took 3 rounds of leave under FMLA and relocated before I realized I just couldn’t keep up any more. This was the most frustrating part of this whole thing, having to leave a job I loved because I could not do it consistently anymore.
27. The people who support me most are: my family.
28. The thing I most wish people understood about migraine is: How frustrated I get because I can’t follow through and plan like I used to.
29. Migraine and Headache Awareness Month is important to me because: I hope it gets more money into research for medications that might work 1/2 as well as advertised (LOL).
30. One more thing I’d like to say about life with migraine is: Don’t give up. It may take a while to find the right doctor and the right “cocktail” to manage your symptoms. Be your own advocate; keep up with research, new drugs, trials, etc. Don’t forget to enjoy the good days!!

MHAMgiveawayReader-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.

By

30 Things About My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with Brainstem Aura (formerly Basilar-Type Migraine), Chronic Vestibular Migraine (Migraine Associated Vertigo), Chronic Migraine without Aura, possible Cluster Headaches (undiagnosed as yet).
2. My migraine attack frequency is: 25 out of 30 days per month.,
3. I was diagnosed in: 2004, approximately 23 years after my first migraine.
4. My comorbid conditions include: Cervicogenic headache, Cervical spondylosis, Occipital neuralgia, Fibromyalgia, Sleeping disorders, Major depression and anxiety, IBS, Endometriosis, Asthma, and Raynaud’s Phenomenon.
5. I take 13 medications/supplements each day for prevention and 11 medications/supplements to treat an acute attack.
6. My first migraine attack was: in my teens around my menstrual cycle.
7. My most disabling migraine symptoms are: passing out during my aura, vertigo, balance and cognitive difficulties.
8. My strangest migraine symptoms are: hiccups and a chill up my spine.
9. My biggest migraine triggers are: the weather, blinking lights, turning my head sideways and sensory overload.
10. I know a migraine attack is coming on when: I get a chill up my spine, buzzing in my ears, I start yawning and I get irritable. But many times I have no warning and just pass out and drop where I am, no matter what I’m doing.
11. The most frustrating part about having a migraine attack is: the unpredictability. It makes it extremely difficult to even schedule doctor appointments, let alone get together with family or friends.
12. During a migraine attack, I worry most about: the effect it has on my family. When I’m in an attack, I can’t handle noise or conversation or even TV. I need things absolutely quiet or I get sensory overload. I miss so much family time because of this.
13. When I think about migraine between attacks, I think: about when the next one is going to strike. It’s a neverending cycle.
14. When I tell someone I have migraine, the response is usually: a story about them or someone they know who has migraine and what helped them.
15. When someone tells me they have migraine, I think: I am overwhelmed with empathy. No one knows the agony of a migraine attack except those who have gone through it. I wouldn’t wish it on my worst enemy.
16. When I see commercials about migraine treatments, I think:they just don’t get it.
17. My best coping tools are: guided imagery CDs, a dark and quiet room, ice or heat, soft pillows and sleep.
18. I find comfort in: never, ever losing hope.
19. I get angry when people say: “I just saw this on TV, it says it will cure a migraine. Have you tried it?”
20. I like it when people say: they will pray for me.
21. Something kind someone can do for me during a migraine attack is:check on me in my room, bring me a glass of ice water and make sure I’m comfortable.
22. The best thing(s) a doctor has ever said to me about migraine is: it’s a real neurological disease; it’s not in my head. He believed me. That validation did wonders for my self-esteem.
23. The hardest thing to accept about having migraine is: all the things I have missed out on. Over ten years of my kids growing up. Not being able to be the kind of aunty I want to be to my three nephews. I’ll never get that time back. It makes me angry.
24. Migraine has taught me: to live in the moment and be thankful for each moment that I feel well.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day, saying ‘I will try again tomorrow.'” I also like “When the world says, ‘Give up,’, Hope whispers, ‘Try it one more time.'”
26. If I could go back to the early days of my diagnosis, I would tell myself: to stand up for myself, be more assertive with my medical team and not take no for an answer.
27. The people who support me most are: my mom and dad.
28. The thing I most wish people understood about migraine is: how debilitating it is.
29. Migraine and Headache Awareness Month is important to me because: it is a time when we, as patients, and our loved ones can band together to become advocates. There are so many ways to participate and many of them are so very simple. There are 36 million of us patients in the United States. If we each did one thing during Migraine Awareness Month to make our voices heard, it would go a long way to raising funds and increasing funding for the National Institutes of Health from Washington. It only takes one person to make a difference. June is the time. Please, do your part. We have to help ourselves.
30. One more thing I’d like to say about life with migraine is: hope and patience are the keys to living any semblance of a life. Hope that there will be new and better treatments coming soon, and patience to wait for them! 🙂

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.