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Getting worse with age…

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

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 1-2 a week
3. I was diagnosed in: 1998
4. My comorbid conditions include: Sleep Disorder
5. I take 0 medications/supplements each day for prevention and 1 medications/supplements to treat an acute attack
6. My first migraine attack was: 1998
7. My most disabling migraine symptoms are: Horrendous right/left temple pain, eye socket throbbing, nausea.
8. My strangest migraine symptoms are: Yawning
9. My biggest migraine triggers are: Hormones, chocolate, who the heck knows…
10. I know a migraine attack is coming on when: I start to yawn a lot, and my temples start to throb.
11. The most frustrating part about having a migraine attack is: Loss of time w/ family and friends.
12. During a migraine attack, I worry most about: When it will end, and how long I will be seperated from husband and daughter.
13. When I think about migraine between attacks, I think: Why me.
14. When I tell someone I have migraine, the response is usually: Oh god, I’m sorry, that sucks.
15. When someone tells me they have migraine, I think: What are you taking, is it better than what I’m taking.
16. When I see commercials about migraine treatments, I think: Would that work for me?
17. My best coping tools are: Maxalt, sleep, dark cool room.
18. I find comfort in: All of the above in #17.
19. I get angry when people say: Can’t you just take Tylenol? Are you sure it’s not just a headache?
20. I like it when people say: I’m sorry, that must be awful.
21. Something kind someone can do for me during a migraine attack is: Help me get to all of #17.
22. The best thing(s) a doctor has ever said to me about migraine is: There’s a drug that can help diminish the migraine.
23. The hardest thing to accept about having migraine is: Unpredictability, having them for ever, and knowing it’s only getting worse and more frequent w/age.
24. Migraine has taught me: To enjoy every second w/out migraine.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: It has to end, just go to sleep and let it pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: Learn to cope, there will be medicine that will help you one day.
27. The people who support me most are: My fantastic husband.
28. The thing I most wish people understood about migraine is: I cannot help when a migraine comes. I’m not lying to get out of your function, I’m genuinely super sick.
29. Migraine and Headache Awareness Month is important to me because: I’m absolutely terrified that my little girl will suffer as I do.
30. One more thing I’d like to say about life with migraine is: When you suffer from migraine, the truth is that it’s hard to live a whole rounded life. Sometimes that in it of it self, is tremendously depressing, and can cause server self loathing, Try to push through, because every day above ground is a good day.

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Migraine Stories: Insights from a Teenager With Chronic Migraine

Having chronic migraine is always difficult, but living with migraine as a teenager is particularly tough. At the age of 17, Sidney already knows how devastating chronic migraine can be. It’s impact reverberates throughout her life, especially in lost friendships and being behind in school. Yesterday she began a stay at a comprehensive pediatric pain rehabilitation center—please keep her in your thoughts as she goes through this intense process. I so hope she finds some relief. She shares her story up to now with you below. She’s also making notes about her stay at the pain clinic and hopes to share the experience with you. 

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

migraine-teenager-dogsI would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

migraine-teenager-nerve-stimulatorI got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

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

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30 Things About Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: chronic migraines
2. My migraine attack frequency is: almost every day
3. I was diagnosed in: 2013
4. My comorbid conditions include: IBS, Hep. C, anxiety, panic attacks.
5. I take one medications/supplements each day for prevention and one medications/supplements to treat an acute attack
6. My first migraine attack was: so many years ago I can’t even remember.
7. My most disabling migraine symptoms are: headache, nausea, neck pain and light sensitivity.
8. My strangest migraine symptoms are: odd lights and shapes dancing in front of my eyes.
9. My biggest migraine triggers are: weather, certain foods and smells.
10. I know a migraine attack is coming on when: I can’t stop yawning.
11. The most frustrating part about having a migraine attack is: I have to stop all activity and lie down. My whole day or my whole week just wastes away.
12. During a migraine attack, I worry most about: All the things that need to get done.
13. When I think about migraine between attacks, I think: How I can beat the next attack.
14. When I tell someone I have migraine, the response is usually: Very positive
15. When someone tells me they have migraine, I think: Poor thing. Let’s see how I can help.
16. When I see commercials about migraine treatments, I think: There’s no way over the counter medications can help. Been there – done that.
17. My best coping tools are: My vivid imagination. I escape to my dream world.
18. I find comfort in: I believe that one day migraines will be a thing of the past just like all other illnesses.
19. I get angry when people say: It must have been something you ate.
20. I like it when people say: You poor thing. I’ll keep you in my prayers.
21. Something kind someone can do for me during a migraine attack is: Not make any noise.
22. The best thing(s) a doctor has ever said to me about migraine is: So far, I haven’t received any good news but let’s keep hoping.
23. The hardest thing to accept about having migraine is: That it’s chronic and so far I haven’t been able to get rid of it.
24. Migraine has taught me: To take one day at a time.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “For all the things I have the strength through the one who gives me power” (Philippians 4:13)
26. If I could go back to the early days of my diagnosis, I would tell myself: Sit back and hold on because you are in for a bumpy ride.
27. The people who support me most are: My daughter and my husband.
28. The thing I most wish people understood about migraine is: That IT IS NOT a regular headache.
29. Migraine and Headache Awareness Month is important to me because: It brings awareness about a very real and debilitating disease that affects millions of people.
30. One more thing I’d like to say about life with migraine is: I don’t live with migraine. Migraine lives with me. I live with my family. I love my God. I have friends. There are days when I have to lie down but as soon as I can, I get up. Sick yes, but not vanquished.

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.

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30 things about Penne’s life with migraines!

This is a reader-submitted story.

1. My diagnosis is: Chronic Complex Migraine without aura. I was first diagnosed in my 30’s. I would get a migraine once in awhile. When I did have a migraine it would put me in bed for a day or two. In 2011, specifically January 26, 2011, I got one of the worst migraines I have ever had. Since then I’ve been fighting on a nearly daily basis.
2. My migraine attack frequency is: Right now I’m still getting almost daily migraine attacks. They let up to about 2-3 a month during 2012, but have returned with a vengeance.
3. I was diagnosed in: The first time I was diagnosed was about 20 years ago.
4. My comorbid conditions include: I have some strange ones, like, excessive yawning, sleep disorders, depression, anxiety, moodiness, obsessive/ compulsive, etc.
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack. Currently I don’t take any meds for prevention, although we have tried a myriad of meds. I take butorphonol and a triptan nasal spray for use when I first feel a migraine coming on. I have also had one botox treatment.
6. My first migraine attack was: When I was in my early 30’s.
7. My most disabling migraine symptoms are: Light sensitivity, pain, nausea, and the fear of not knowing when the next headache will come.
8. My strangest migraine symptoms are: Extreme fatigue and/or excessive amount of energy, brain fog, memory loss, food cravings, frequent yawning, sweating, and runny nose.
9. My biggest migraine triggers are: The only trigger I have been able to identify is the changing of the barometric pressure. I haven’t found any foods that trigger a migraine.
10. I know a migraine attack is coming on when: I start to feel a little dazed and I become clumsy. Many times my husband can tell before I can. He says I get a certain look in my eyes.
11. The most frustrating part about having a migraine attack is: It puts an immediate stop to anything I might be doing and it doesn’t allow me to make plans with any certainty. Many people have stopped inviting us to functions because we have had to cancel so many times. Migraine life is very lonely.
12. During a migraine attack, I worry most about: The pain and how long it will last.
13. When I think about migraine between attacks, I think: I find myself worrying about the next one, where will I be when it hits.
14. When I tell someone I have migraine, the response is usually: It depends on who I’m talking to. If it’s someone who knows about migraines they are empathic, but, if I’m talking to someone who has never had a migraine or simply doesn’t know what a migraine really is, they usually give me a look of dumbfoundedness. To many people who are not educated about migraines they think a migraine is “just a headache”.
15. When someone tells me they have migraine, I think: I feel bad for them, ask if there is anything they need, and make our visit short so they can get some rest.
16. When I see commercials about migraine treatments, I think: I used to wonder if the treatment would work for me. However, after years of trying so many I now don’t even pay attention to the commercials any more.
17. My best coping tools are: My rescue meds, laying down in a quiet room, ice packs, and listening to a book on my phone.
18. I find comfort in: My husband. He has been my rock throughout this whole time. I also find comfort in the idea of a cure and more education for the public.
19. I get angry when people say: Have you tried (insert one of a variety of home remedies)? It helps my headaches. Especially when someone suggests that I should try Excedrin Migraine.
20. I like it when people say: I understand, do you need anything?
21. Something kind someone can do for me during a migraine attack is: Get my meds, ice pack, water, eye mask, and just leave me in a quiet room.
22. The best thing(s) a doctor has ever said to me about migraine is: When I was given the diagnosis of chronic migraine, it felt like ok, now I have a name for this. Now, let’s get to work on how to minimize the impact of the migraines on my life.
23. The hardest thing to accept about having migraine is: There is no cure and I am not in control of my life.
24. Migraine has taught me: To make the most of the good days and to appreciate those that have remained a strong support to me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t push yourself, you are not wonder woman, there will be bad days ahead but there will be good days too. Don’t give up!
27. The people who support me most are: My husband, and my niece who is really more like a sister.
28. The thing I most wish people understood about migraine is: There is so much more to migraines than the pain in your head, and that they can last for days.
29. Migraine and Headache Awareness Month is important to me because: Actually I just recently found out that June is migraine awareness month. I’m glad that there is something out there trying to bring awareness to the public. I believe education is the key to understanding.
30. One more thing I’d like to say about life with migraine is: It’s very unpredictable. Life is still wonderful and full of happy moments. I’m thankful for my diagnosis because there are so many people who don’t have the privilege of having a good day every now and again.

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.

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Debbie’s Migraine Life

<em>This is a reader-submitted story.</em>

1. My diagnosis is: Chronic migraine

2. My migraine attack frequency is: Often daily, sometimes 15-20 migraine days per month

3. I was diagnosed in: My early 20’s I am in my late 40’s now

4. My comorbid conditions include: Neck and back pain

5. I take 2-3 medications/supplements each day for prevention and 2-3 medications/supplements to treat an acute attack

6. My first migraine attack was: Twenty some years ago due to hormonal fluctuations

7. My most disabling migraine symptoms are: Confusion, head and neck pain, pain, blurred vision, nausea

8. My strangest migraine symptoms are: Blurred vision, somewhat of an aura of nauseating blechhh feeling before any headache symptoms.

9. My biggest migraine triggers are: Wine, food, sleep, heat, certain smells, pulled back hairstyles, certain bras

10. I know a migraine attack is coming on when: A wave of nausea comes over me, followed a while later by sharp pain behind my eye

11. The most frustrating part about having a migraine attack is: Not being able to participate fully, missing work or trying to participate with work or family activities while feeling awful.

12. During a migraine attack, I worry most about: Disappointing my family

13. When I think about migraine between attacks, I think: About how much I appreciate feeling well.

14. When I tell someone I have migraine, the response is usually: Some recommendation of OTC medicine to try.

15. When someone tells me they have migraine, I think: I respond with compassion and empathy.

16. When I see commercials about migraine treatments: I usually have tried it already! Also, while I like the idea of not missing out on things, rest is still important during a migraine flare. The commercials will have you think that you will be running through a field of daisies with your children without missing a beat.

17. My best coping tools are: Abortive meds.

18. I find comfort in: Pajamas, some quiet couch time.

19. I get angry when people say: You really need to figure out about these headaches. Ummm.. ok!

20. I like it when people say: I am so sorry, can I get you anything?

21. Something kind someone can do for me during a migraine attack is: Offer to fix something quick to eat so that I can keep my meds down.

22. The best thing(s) a doctor has ever said to me about migraine is: There are a lot of things we can try. Also, that many women get better after menopause.

23. The hardest thing to accept about having migraine is: That I need to take a break from whatever is going on, and include rest in my treatment along with the abortive meds. I tend to just keep on going.

24. Migraine has taught me: To be compassionate towards others with chronic illnesses. Also, that today may be a bad day, but tomorrow will be better.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass.

26. If I could go back to the early days of my diagnosis, I would tell myself: Find a neurologist who is a headache specialist and start trying different treatments.

27. The people who support me most are: My husband, kids and dogs.

28. The thing I most wish people understood about migraine is: Migraine is a chronic neurological illness that affects the entire body.

29. Migraine and Headache Awareness Month is important to me because: It reminds me that I am not alone in this.

30. One more thing I’d like to say about life with migraine is: Chronic migraine affects the entire body. Sometimes it feels like something horrible is really wrong, like a stroke or worse. I am trying to accept this as a chronic illness, and learn my limitations, and how to handle my bad days so that maybe I will be back to my good days faster. One thing that is very frustrating is dealing with the insurance company in getting the proper amount of medication to treat the amount of migraines that I have. If I could schedule fewer headaches per month, I certainly would but the thought of having one without medication is just awful. While I am on daily preventatives, I haven’t had great luck with them. I hope that new and better medicines are developed.

<em><a href=”http://www.thedailyheadache.com/wp-content/uploads/2015/06/MHAMgiveaway.png”><img class=”alignright wp-image-8336″ src=”http://www.thedailyheadache.com/wp-content/uploads/2015/06/MHAMgiveaway-300×234.png” alt=”MHAMgiveaway” width=”205″ height=”160″ /></a>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 <a title=”Migraine &amp; Headache Disorders 30 Things Meme” href=”http://www.thedailyheadache.com/30things”>share YOUR 30 Things</a> about living with a headache disorder.</em>