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Loves the Quiet

This is a reader-submitted post.

1. My diagnosis is: Hemiplegic migraine, Chronic migraine, Classic migraine with and without aura, Cluster headaches
2. My migraine attack frequency is: About 4 days a week
3. I was diagnosed in: 1990 (approximately)
4. My comorbid conditions include: Hypoglycemia, Allodynia
5. I take 5 medications/supplements each day for prevention and 4 medications/supplements to treat an acute attack
6. My first migraine attack was at about 12 years old.
7. My most disabling migraine symptoms are losing vision, vomiting, disabling pain.
8. My strangest migraine symptoms are losing the ability to speak clearly, foggy thinking, yawning non-stop, tunnel vision, seeing “sparkles”
9. My biggest migraine triggers are stress let-down, changes in sleep pattern, weather, hormones, not keeping a regular food schedule, traveling.
10. I know a migraine attack is coming on when my skin starts to get hot and my stomach starts to churn.
11. The most frustrating part about having a migraine attack is not being able to do anything about it, missing out on important life events, feeling like you are constantly letting people down.
12. During a migraine attack, I worry most about my husband having to pick up all of my slack.
13. When I think about migraine between attacks, I think “No migraine? There must be ABSOLUTELY NOTHING important going on today”
14. When I tell someone I have migraine, the response is usually some “magic” thing that they think will get rid of migraines… it won’t.
15. When someone tells me they have migraine, I think that if I talk to them for a minute or two I can figure out if they REALLY have migraines or if they get they occasional tension headache.
16. When I see commercials about migraine treatments, I think “Well here is another treatment that will be overpriced, highly metered by the insurance companies, and I won’t be able to take anyway because of the type of headaches that I have.”
17. My best coping tools are knowing that I have a primary care physician who will always be willing to break a headache if it won’t go away. I rarely have to go to the ER anymore.
18. I find comfort in knowing that my husband understands what I’m dealing with.
19. I get angry when people say “oh well if you would just do X (whatever supplement/juice/thing-they-say-on-TV) your migraines would go away
20. I like it when people say “I understand that you can’t be there. It’s ok.”
21. Something kind someone can do for me during a migraine attack is just leave me alone.
22. The best thing(s) a doctor has ever said to me about migraine is that they are willing to keep trying things until something works.
23. The hardest thing to accept about having migraine is that it doesn’t go away.
24. Migraine has taught me I can’t control everything.
25. The quotation, motto, mantra, or scripture that gets me through an attack is “nothing lasts forever”
26. If I could go back to the early days of my diagnosis, I would tell myself to prepare to deal with this for the rest of your life.
27. The people who support me most are my husband and my dogs (don’t tell me they aren’t people!)
28. The thing I most wish people understood about migraine is it can’t be fixed with a magic potion.
29. Migraine and Headache Awareness Month is important to me because it let’s people here real stories from real people
30. One more thing I’d like to say about life with migraine is although it’s difficult, it’s not beyond hope.

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.

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Thank you for Reminding Me That I am Not Alone! 30 things about my migraine life

This is a reader-submitted post.

1. My diagnosis is: Chronic Migraine

2. My migraine attack frequency is: I have head pain almost daily, approximately 20-25 day’s per month. The severity and symptoms vary daily. Botox is beginning to show me some relief though, for about 6 weeks between injections!

3. I was diagnosed in: 2004 and initially I was episodic, the last few years I have been in an Intractable state.

4. My comorbid conditions include: History of TIA, Congenital Heart Defect. May be related, the Migraines started after the TIA and an Atrial Implant.

5. I have Botox injections every 90 day’s currently, supplemental daily and abortive medications.
I could not possible remember all of the deifferent medications that I have tried. The most effective form of treatment for me was Nerve Blocks. They provided relief for approximately 3 weeks and then I would slide right back in to the same chronic state though.

6. My first migraine attack was: In 2004. I thought that I was dying, having a stroke. I started initially having what I would refer to as a 10,000.00 headache (emergency room visit and the complete work up) just a couple of times per year!

7. My most disabling migraine symptoms are: Numbness, tingling, weakness (stroke like), Constant Vertigo and Head Pain. My right temple hurts constantly. Just varying degrees of pain…forgetfulness, cognitive abilities and reasoning skills and simply communicating.

8. My strangest migraine symptoms are: Constant Yawning. Cognitive impairment, trouble speaking and comprehending. Phantom smells. Last week I was in the hospital, I started to brush my teeth with blistex! The really sad thing was that I just acknowledged with the Nurse that Blistex was a great thing to give out, since you get so dehydrated in the hospital. And then, I started to brush my teeth with it!
9. My biggest migraine triggers are: Lights (fluorescent mostly), smells, noise. Weird, random, unexplained, and varying. Certain stores, hardware stores, plastics, fertilizers, exhaust fumes etc.,

10. I know a migraine attack is coming on when: The Back of my Neck starts getting stiff. This is usually but not always the first sign.

11. The most frustrating part about having a migraine attack is: I can not accurately predict it or control it. The only thing that seems to help is doing as little as possible…It is extremely difficult to work, concentrate, think clearly and/or do anything at all.

12. During a migraine attack, I worry most about: all of the symptoms, could this be more than a migraine…what if I am having a stroke?

13. When I think about migraine between attacks, I think: Wow, I feel half decent today 🙂

14. When I tell someone I have migraine, the response is usually: Oh, yea, I hate headaches etc.

15. When someone tells me they have migraine, I think: Oh, I am so sorry, how can I help you?

16. When I see commercials about migraine treatments, I think: Yea, whatever! Very frustrating to see all of the so called cures/guarantees for migraine sufferers. “Dr. Oz said” yea, yeah, yea…

17. My best coping tools are: Quiet and Rest.

18. I find comfort in: My doctor’s understanding of Migraines and my personal support system, my spouse and my family members that understand.

19. I get angry when people say: Did you have another headache?

20. I like it when people say: I can’t imagine what that is like and/or I hope that you can find relief soon.

21. Something kind someone can do for me during a migraine attack is: Be understanding that I am not myself, physically, cognitively and/or emotionally. Try not to ask me a lot of questions or try to engage in conversation. It is just too difficult to think, let alone communicate effectively.

22. The best thing(s) a doctor has ever said to me about migraine is: You are not alone. There so many people just like you, in chronic pain. We will keep trying 🙂

23. The hardest thing to accept about having migraine is: It is unpredictable and only slightly manageable.

24. Migraine has taught me: To embrace my good hour’s and occasional day’s to the fullest. Get as much accomplished as possible while I feel decent!

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: You ain’t seen nothing yet, yikes!

27. The people who support me most are: My husband and my Neurologist.

28. The thing I most wish people understood about migraine is: It is not just a bad headache and each of us have our own array of triggers, symptoms and solutions. Caffeine does not bother me even though it may trigger others. Icing my forehead does not help me either, it makes me feel worse. Yes, I get plenty of rest, I eat well, I take pretty darn good care of myself!

And as soon as my head stops hurting and the constant state of dizziness lets up for a little while, I will begin to exercise more too 🙂

29. Migraine and Headache Awareness Month is important to me because: Unless you have experienced a migraine, you couldn’t possibly understand all of the complex neurological side effects that go along with the headache.

30. One more thing I’d like to say about life with migraine is: Challenging, enjoy your good day’s to the fullest 🙂

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.

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My migraine life!

This is a reader-submitted post.

1. My diagnosis is: Migraines
2. My migraine attack frequency is: 5-7 times/mo +
3. I was diagnosed in: 1985
4. My comorbid conditions include: Diabetes, Arthritis, High cholesterol
5. I take Metformin + many sup.____ medications/supplements each day for prevention and sumatriptan____ medications/supplements to treat an acute attack
6. My first migraine attack was: ?
7. My most disabling migraine symptoms are: Nausea and flu like feeling
8. My strangest migraine symptoms are: My nosebone gets very heavy like I have heavy glasses on
9. My biggest migraine triggers are: Weather
10. I know a migraine attack is coming on when: The bridge of my nose gets heavy, my eyes get congested, my ears clog up like being under water and then my head starts hurting
11. The most frustrating part about having a migraine attack is: Not being able to think straight
12. During a migraine attack, I worry most about: Being present in life with work and home and taking too much medicine
13. When I think about migraine between attacks, I think: I try to enjoy not having one and NOT think about it and then I think WHAT can I try to get rid of them!
14. When I tell someone I have migraine, the response is usually: Oh that’s awful
15. When someone tells me they have migraine, I think: Oh that’s awful, I can relate
16. When I see commercials about migraine treatments, I think: MAINSTREAM meds!
17. My best coping tools are: Ice and Sumatriptan
18. I find comfort in: Knowing that the Sumatriptan still helps
19. I get angry when people say: After you go thru menopause they’ll go away
20. I like it when people say: You poor girl
21. Something kind someone can do for me during a migraine attack is: Don’t talk to me
22. The best thing(s) a doctor has ever said to me about migraine is: The allergist told me to go see a neurologist
23. The hardest thing to accept about having migraine is: That it probably will be a life long problem
24. Migraine has taught me: To live in the moment and revel in the days migraine free
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Hang in there
26. If I could go back to the early days of my diagnosis, I would tell myself: At least now I know what is going on
27. The people who support me most are: My family
28. The thing I most wish people understood about migraine is: How disrupting and unmanageable it can be
29. Migraine and Headache Awareness Month is important to me because: It brings attention to the disease
30. One more thing I’d like to say about life with migraine is: It sucks!

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.

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Oigh – again today…..

This is a reader-submitted story.

1. Chronic Migraine – 33 years into this
2. 25/month average
3. 1994
4. Several kinds of Aura, Temporary blindness, Aphasia, Intense pain on left side, neck ache, hyper active prior to, depression, suicidal, does not respond to painkillers
5. Topomax, imitrex, cipralex, percacet, T3’s, magnesium, VitC
6. When I was about 10 years old
7. Blindness and not being able to think or speak. stroke like symptoms
8. burst of energy just before a big one
9. life
10. energy burst, I am happy
11. it dampens events, stops me from being the most I can be, Isolation from others
12. not being able to make it through the day, having to take too many pain killers
13. I don’t think about them between attacks. I’ve had enough
14. Indifference, cold, ignorance, stereotypes.
15. I test them and if they do, we bond, if they don’t, I call them out gently and educate
16. I get very very angry because it is usually BS stereotype building on a mass scale, then I write letters
17. Distraction, keeping myself extremely busy, dancing, art, socializing
18. Ice packs, my sons and a few close friends knowing the truth, my dogs
19. Stupid herbal remedies. A drop in the bucket. “Have you tried…….” “you won’t know unless you have tried”. I want to scream “have you had a horse kick you in the head and applied a leaf to stop the pain?!”
20. I’m sorry. I understand that that is very painful.
21. Accept me.
22. It’s not my fault. It’s okay to take more pain killers. What I have given you will not harm you. You don’t blame a diabetic for having to take insulin, so don’t blame yourself for what you have to take.
23. Untapped personal potential on a physical level
24. Patience, compassion, perseverance, intellectual stamina, empathy, wisdom, inner strength, spirituality, meditation, humility, acceptance.
25. This always ends. You’ve broken this many times. This monster does not win.
26. It’s not your fault. You do not cause this.
27. My migraine friends. My best friends. My parents now. My sons.
28. It is not a headache. It is a neurological brain disorder. It is IN the brain. Saying you have a migraine when you only have a headache is like saying you have epilepsy when you only have the shivers. Stop using migraine as your sympathy card. It is a hell card.
29. It is one more positive step towards bringing awareness and removing stereotypes. It gives a voice to those who have it.
30. There is no cause and there is no cure. It gets progressively worse for many people, myself included. So many people have been suicidal at some point in their life. There is so little hope in this disease with some 50% chance of cure like there is with other diseases. It is an unwanted marathon with no finish line and no reward. It’s not a headache …….compassion please.

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.

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Living My Life With Migraine

This is a reader-submitted story.

What’s it like for you to live with migraine?
I was diagnosed as being chronic, but have recently been re-diagnosed as transformed.
I usually have one migraine a month lasting 7-10 days.
I was diagnosed in 1991.
I usually am sensitive to light, sound, smells and I have tension in my shoulder, my left ear hurts and sometimes my eyes hurt.
I take six different kinds of medications as my preventatives, two different abortives, and I have seven different things I can take during the migraine.
My first migraine attack was while I was pregnant with my son in 1990.
My most disabling symptoms are the light sensativity, when my eyes hurt, smells, and noise.
My most disabling symptom is the light/eyes.
the strangest is my left ear hurts.
My biggest triggers are smells, especially perfume/cologne. When I forget to eat.
I can tell a migraine is coming; I start yawning a lot, I feel tired, I drink more liquids.
The most frustrating part of having a migraine is not having a room dark enough or cool enough or when your medications don’t work.
I worry most about my job, my income, and being able to pay my bills when I have a migraine.
I hope I don’t have another migraine for a long time so I can have a normal pay check.
people usually don’t say to much when I say I get migraines, especially at work. So I usually don’t share.
when someone shares with me they get migraines, I sympathize with them and usually share I do too.
When I see commercials, I get irretated because how they portray the people. They make it seem like migraines are not as debilitating as they are. People lose their jobs, homes, spouses, etc
MY best coping skill is knowing that I’m doing everything that I’m supposed to be doing.
I find comfort in knowing I’m not alone and I’ve made friends on Facebook support group.
I get angry when people suggest to me to just start over with all of my medications. Or when they say I take too much medication.
I like it when people express an interest in wanting to genuinely learn more about migraines.
Something kind someone could do for me when I have migraine is making sure I have food or something to eat.
The best thing my doctor ever said to me was they don’t have to worry about me abusing my pain meds.
The hardest thing to accept about migraine is you never know when they are going to hit you.
Migraines have taught me that having good health is priceless.
Love all, Trust a few, Do wrong to none-Shakespeare
I would tell myself to take care of myself, practice yoga more and meditate more.
I’m not sure how to answer who supports me. I guess it would be the people in the FB support group.
The thing I wish people understood about migraines are; it’s not a choice, they are real, we are not faking it, and there is real pain involved.
Migraine Awareness Month is important because it is our opportunity to bring awareness to the public.
Migraines are not a part of my life that I would have chosen. It seems like they have increased due to major life changes over the last five years. I would give anything to go back five years and have my health back and less stress. I feel I try my best to do what I’m suppose to do; eat right, get enough rest, try to avoid stress, etc. I don’t want to miss work anymore, (I want to be treated the same at work), I want a full paycheck to be able to pay my bills, I don’t want to struggle pay my bills anymore. I want to be able to have enough money to buy groceries. I need new glasses, but how do we get those when we cant pay all the bills or buy groceries. (This is on a single ingle income) These are all my concerns in my vicious circle; so scratch the stress.
This is Living My Life With Migraine

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.