Tag: reader stories

30 Things Meme

My Life With Migraine

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This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine both with and without aura
2. My migraine attack frequency is: Four to five per week
3. I was diagnosed in: circa 1990
4. My comorbid conditions include: Reunaud’d syndrome, fibromyalgia, IBS
5. I take five medications/supplements each day for prevention and four medications/supplements to treat an acute attack
6. My first migraine attack was: somewhere around 1983
7. My most disabling migraine symptoms are: sensitivity to light and scents, and pain.
8. My strangest migraine symptoms are: when my hair hurts and when half of my face and head feel hugely swollen (when they aren’t). Oh, and I crave cold food.
9. My biggest migraine triggers are: SUNLIGHT, lack of sleep, barometric pressure changes (usually when it drops, but any change can be a trigger), dehydration, and many smells (onions and perfumes are big ones) and any kind of flashing or strobing lights.
10. I know a migraine attack is coming on when: my vision blurs and I get nauseated.
11. The most frustrating part about having a migraine attack is: how it limits my activities.
12. During a migraine attack, I worry most about: what my husband is having to do for me because I can’t.
13. When I think about migraine between attacks, I think: how hard it is to find a cure because everyone’s migraines are so different.
14. When I tell someone I have migraine, the response is usually: “I get them, too.” I’m amazed at how many people have them.
15. When someone tells me they have migraine, I think: “You poor soul,” and I wonder if there’s anything I can help them with.
16. When I see commercials about migraine treatments, I think: I wonder if it’ll really make a difference. Then I wonder if my insurance will cover the likely high price of the treatment.
17. My best coping tools are: A darkened room, my feather pillow, ice pack, and audiobooks.
18. I find comfort in: my husband, PJs, and my bed.
19. I get angry when people say: You have ANOTHER headache?
20. I like it when people say: They understand.
21. Something kind someone can do for me during a migraine attack is: different things at different times, really. The biggest help is when someone (my husband, usually,) just keeps my glass full for me so I don’t have to leave my dark room.
22. The best thing(s) a doctor has ever said to me about migraine is: I can help you.
23. The hardest thing to accept about having migraine is: how life-limiting they are.
24. Migraine has taught me: to appreciate little things.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I dam not really have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: it’ll get worse before it gets better, and to avoid narcotics whenever possible – in the long run, they don’t help at all.
27. The people who support me most are: my husband and my daughter.
28. The thing I most wish people understood about migraine is: they’re different from “regular” headaches.
29. Migraine and Headache Awareness Month is important to me because: it helps spread the word about migraine.
30. One more thing I’d like to say about life with migraine is: I hope my friends don’t give up on me. One day, I hope to have a life without headaches.

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.

30 Things Meme

30 things about Brenda’s Life with Migraines

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This is a reader-submitted story.

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.

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.

30 Things Meme

30 Things About My Migraines

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This is a reader-submitted story.

1. My diagnosis is: Acute Migraines
2. My migraine attack frequency is: Varied depending in triggers, and medication. I also suffer from cluster headaches, tension headaches. A migraine can last for up to 9 days which had been my longest. Four days the shortest. I generally have some sort of headache daily.
3. I was diagnosed in: 2014. I had a major head trauma when I was 9 whereby an object dropped on my head from an eight floor window. The object was large piece of solid wood. No puncture wound so it was all pooling and putting pressure in my brain (causing slight damage) put into an induced coma whilst they drained. And drained. Eventually I was allowed to go home and took the next 6 months to recuperate. I have barely any memories of accident or afterwards up to about a year. My memory has been damaged. I was basically told that if my skull had been a bit harder it would have caved in. So I am extremely lucky to be alive. This is where the migraines started.
4. My comorbid conditions include: Visual aura, vertigo attack, panic attack and occasional fit like episode. Eyesight problems in the eye I suffer clusters over, double sighted, short sight and eye pulling towards my ear. I now have to wear prisms in one eye glasses which I have only just been diagnosed, I’m also having sinus problems that is not an allergy.
5. I take __5__ medications each day for prevention and __1__ medications/supplements to treat an acute attack I have also had occipital blocks (didn’t work) and am now in the middle of a lidocaine IV infusion procedure. 2/3 so far the latter being 2 days ago. Had two fits during the last procedure so my pain consultant may not proceed but look at another method. I will find out start of July.
6. My first migraine attack was: Around 10 years old. Two years ago I had a migraine whereby I also had a fit. I’d never had a for until then. Very scary and since then have been unable to go back to work due to the fits and vertigo.
7. My most disabling migraine symptoms are: Vertigo, blind spots and confusion. Just being downright yucky…I hate feeling nauseous and physical sickness makes me cry because I don’t like doing it. So when sick the crying doesn’t help the migraine! I’m now medicated for the sickness/vertigo.
8. My strangest migraine symptoms are: Smell! I smell strange things and also hearing things.
9. My biggest migraine triggers are: Sunlight, stress, flashing lights (mainly emergency vehicles) vertigo.
10. I know a migraine attack is coming on when: I start seeing zig zags…or having a vertigo attack.
11. The most frustrating part about having a migraine attack is: Losing out on family life. Not being able to string a coherent sentence together. Forgetting things, having to cancel appointments or forgetting about them.
12. During a migraine attack, I worry most about: Having a fit.
13. When I think about migraine between attacks, I think: I get angry and frustrated with missing out in things, not being able to do things like dancing and seeing live music. I also get jealous of people who can go about their normal life, job etc.
14. When I tell someone I have migraine, the response is usually: That they usually go to lie down in a darkened room with a cool cloth on their forehead (those that don’t know me) Those that do usually ask if I’ve taken my tablets and can they do anything.
15. When someone tells me they have migraine, I think: I’ll usually try and give them some advice, for instance sumatriptan is available over the counter.
16. When I see commercials about migraine treatments, I think: If only it was that easy
17. My best coping tools are: My family. I also have a morbid sense of humour so that helps. I am an eternal optimist.
18. I find comfort in: My attitude to my migraines and other physical problems I have.
19. I get angry when people say: Calm down its just a headache you’ll get over it!
20. I like it when people say: I’m not sure to be honest. I have neurological problems with my back, hip and shoulder due to 3 prolapsed discs. I’m very stubborn and very often refuse help to my own detriment. So I guess when someone insists, because then I am relieved that someone has been gutsy enough to take my stubborn irritability on!
21. Something kind someone can do for me during a migraine attack is: Telling me to take my tablets as I often forget. Not ask me if I’m ok.
22. The best thing(s) a doctor has ever said to me about migraine is: it was actually a allergy nurse. First she commented in the amount of meds I had to take as I also have to take other meds for back. We had a bit of a giggle about being a pin cushion (IV’s allergy clinic) and then she went on to say how she admired my optimism and determination to get it all sorted so I could get on with my life. That have me a nice lift mentally. The funniest thing my pain doc said was ‘wake up’ in my ear really quietly as I had fallen asleep in his waiting room! He’s a fantastic doc, and I realise how lucky I am to have him taking care of my pain management.
23. The hardest thing to accept about having migraine is: How bad tempered it makes me. I was a happy go lucky laid back person. I am that person, no more. I’m snappy, argumentative, impatient and miserable. Being in constant pain, head, arm, hands, fingers, Back, hip, leg, ankle, foot. All right sided. Having to constantly rely on others.
24. Migraine has taught me: That invisible disabilities exist! My family are great!
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Sleep will do the job.
26. If I could go back to the early days of my diagnosis, I would tell myself: Not to expect miracles. There is no magic cure.
27. The people who support me most are: Family and partner. My partner has put up with a lot. He’ll work a full day ad come home and do the chores, cook dinner etc if I’m feeling unwell. He’ll make a cup of tea if he gets home and I’m in bed with out moaning about it. He lets me sleep whenever I need to. He strokes my head to make me sleep when I’m having trouble. That actually works, we think it may have been a baby/mum thing. My kids are brilliant. One of my daughters sticks to me like glue and does all the things I’m sometimes unable. She comes to all my appointments, takes notes etc. Stops me from falling over or walking into things (vertigo)
28. The thing I most wish people understood about migraine is: It’s not just the pain, it’s the other symptoms too. My preventative tablets when working will take the pain away but not the symptoms. So I’ll still have the aura, vertigo, tiredness etc. However, it’s the aftermath of a migraine whereby it can take a couple of days before the exhaustion of having a migraine has passed.
29. Migraine and Headache Awareness Month is important to me because: I think more people need to understand how migraines can pretty much render you useless.
30. One more thing I’d like to say about life with migraine is: It’s hard. It’s painful. Frustrating, disabling, and difficult for the whole household to deal with.

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.

30 Things Meme

30 Things meme

reader

This is a reader-submitted story.

1.My diagnosis is: Intractable chronic migraines.
2.My migraine frequency: 3-4 days every week.
3. Was diagnosed in: Officially sometime in 1997.
4. My co-morbid conditions include: Hydrocephalus, with multiple shunt revisions, the last surgery was in 2004, when shunt was removed.
5.I take 5 medications/supplements each day for prevention and 9 medications/supplements to treat an acute attack.
6.My first migraine attack was: Can’t remember the exact date, but it was several years before the official diagnosis. Maybe 1993, 1994.
7.My most disabling migraine symptoms are: pain, nausea, light sensitivity, sensitive to smells and noise.
I feel like if I move I could vomit. Nurses don’t understand the light “sensitivity”. I Hate that terminology. It’s more like photophobia.
8.My strangest migraine symptoms are: I feel like every nerve in my body is exposed. I try to explain that it’s more than just a headache. But nobody believes me.
9.My biggest migraine triggers are: My migraines started after my first shunt revision in 1993, before that no headaches. Other triggers, weather changes is the big one. A strange one that I just recently noticed is onions cooking on the stove. The smell is too strong.
10. I know a migraine attack is coming on when: I don’t get aura’s. I usually always have some sort of mild headache pain, but when the nausea kicks in I know I better start with my anti nausea meds or its all over. I can go from a pain of 2-3, to 9-10, in 30 minutes at times . Other times I can have a mild headache for days that I’m treating at home before I have to go in for injectons, or for my infusion protocol.
11.The most frustrating part about having a migraine attack is: Wondering if this one will last 2-3 days, or if it’s going to last 2-3 weeks. Wondering what comments the nurses are going to make when I get to the infusion center.
12.During a migraine attack, I worry most about: Just praying that the meds work, so that the pain will at least be bearable, and I won’t vomit, and maybe I can at least get something on my stomache to stop the spiraling.
13 When I think about migraine between attacks, I think: Thankful that I don’t have one today. Each day is a gift, it’s up to you how you use it. I don’t dwell on my migraines when I don’t have them. Yes, they are a part of my life, but they don’t control my life
14.When I tell someone I have a migraine, the response is usually: Oh I’m so sorry, make sure you drink plenty of water. Call if you need something.( and then I usually don’t hear from them until my headache is over.) It’s like I have the plague or something.
15.When someone tells me they have a migraine, I think: Oh, I am so sorry! What can I do for you? My heart truly aches for them.
16.When I see commercials about migraine treatments, I think: I wish that would work for me.
17.My best coping tools are: Strong support system, faith, I like to go in a dark room, I do use a headset with piano music when I go in for infusions to drown out the noise of the IV, Nurses etc. Believe it or not, when I don’t have a headache, I don’t talk about them, and even when I have mild headaches I choose to not too about it. To not give it power, the more you talk about it, the more you become focused on the pain. I’m not saying to never talk about it. I m just selective.
18.I find comfort in: dark rooms, quiet rooms, warm blankets, soothing music ,(depending on pain level).
19.I get angry when people say: it’s just a headache.
You were in yesterday? Didn’t the meds help? Do you plan on coming in tomorrow too?
Why are you crying? Why do you need the lights off , you sat out in the waiting room for 45 minutes and the lights were on out there?
You have 30 seconds left before I can give you your med. I have every right to give you your med late if I want to.
20.I like it when people say: I can’t imagine living in the amount of pain you do every day.
Every time I see you you always have a smile on your face , and you never complain.
21.Something kind someone can do for me during an attack is: A friend once drove 2 hours just to sit with me during an attack that lasted 2 weeks. She brought soup, took me to an appt. Etc. Was nice to just have someone there.
22.The best thing a doctor has ever said to me about migraines: I believe you!!
23.The hardest thing to accept about having migraines: I had to go on disability, worked as a nurse for 10+ years. Loved my job. Miss my job.
24.Migraine has taught me: Perseverance.
25.The quotation,motto, mantra, or scripture that gets me through an attack: This too shall pass.
26.If I could go back to the early days of my diagnosis, I would tell myself: Hang in there. You are strong enough. You can do this. God has a plan for your life.
27.The people who support me most are: My best friends, Karen, LeAnn, Sheila, friends from church, my primary physician, family.
28.The thing I wish most people understood about migraine: Its so much more than just a headache, and what works for your headaches doesn’t necessarily work on mine.
29.Migraine and Headache Awareness Month is important because: So many people don’t understand and have misconceptions about migraines.
30.One more thing I would like to say about life with migraine is: As bad as some days get, the saying ” That which does not kill you makes you stronger” is true. Hoping for a cue, but have accepted them as a part of my life.

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.

30 Things Meme

30 things about your life with migraine

reader

This is a reader-submitted story.

1. My diagnosis is: Occular Migraines + Trigeminal Neuralgia
2. My migraine attack frequency is: 2-3 per month
3. I was diagnosed in: 1991
4. My comorbid conditions include: Joint Hypermobilty Syndrome, severe Anxiety, Probable Fibromyalgia.
5. I take __2__ medications/supplements each day for prevention and __4__ medications/supplements to treat an acute attack
6. My first migraine attack was: 1988
7. My most disabling migraine symptoms are: visual disturbance; pain
8. My strangest migraine symptoms are: my left eye (usually) won’t open
9. My biggest migraine triggers are: stress, tiredness
10. I know a migraine attack is coming on when: I develop a stammer
11. The most frustrating part about having a migraine attack is: speech aphasia
12. During a migraine attack, I worry most about: my kids; both their reaction and how to handle the day ahead.
13. When I think about migraine between attacks, I think: feelings of dread and annoyance.
14. When I tell someone I have migraine, the response is usually: sympathy, followed by ‘have you tried..? (The answer is yes, frequently)
15. When someone tells me they have migraine, I think: you poor bastard
16. When I see commercials about migraine treatments, I think: uhuh. Yep, that sounds likely.
17. My best coping tools are: my eyepatch, which helps the photophobia and lack of ability to visually focus
18. I find comfort in: My eyepatch + the ‘inverse colours’, dimmer slider and ‘greyscale’ functions on my iPad so I can sometimes read.
19. I get angry when people say: ‘if you just lost weight, your (whatever symptoms) would disappear /reduce.” Yup. I have never, ever, been told this by one of my many doctors. You know, the ones with actual medical training.
20. I like it when people say: ‘do you want me to take in/pick up your kids to/from school?’ Practical help is the best.
21. Something kind someone can do for me during a migraine attack is: keep my kids occupied/fed so I don’t have to deal with food smells or seeing movement
22. The best thing(s) a doctor has ever said to me about migraine is: ‘it’s unfair, and I know how debilitating they are. I will prescribe [x] and we’ll see if it helps.
23. The hardest thing to accept about having migraine is: the more I stress, the worse it gets
24. Migraine has taught me: sometimes you need to ask for more help than you are comfortable with.
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: If you think it helps, it does. Ignore him.
27. The people who support me most are: my Dad and my family/friends
28. The thing I most wish people understood about migraine is: it doesn’t define me, even when I have an attack.
29. Migraine and Headache Awareness Month is important to me because: if it helps someone find their own shortcut to coping, that’s awesome.
30. One more thing I’d like to say about life with migraine is: find out your triggers, manage them as best you can, then get on as best you can. We got your back, and know how hard you are trying to cope.

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.