migraine Archives - Page 5 of 39

Like Being Allergic to Life

June 22, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: migraine with aura; migraine without aura; migraine variant (abdominal migraine, syncope migraine, confusional migraine, precordial migraine)
2. My migraine attack frequency is: about three a week that are mild and 3 – 4 a month that are intense
3. I was diagnosed in: 2008 at the age of sixty and began a treatment regimen for the first time
4. My comorbid conditions include: Lupus
5. I take __5__ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: possibly in 1955 when I was first hospitalized at the age of 7 and they could find no reasons for my symptoms
7. My most disabling migraine symptoms are: fatigue, cognitive dysfunction, nerve tingling/pain left side of face and left hand, symptoms that mimic a stroke and symptoms that mimic a heart attack
8. My strangest migraine symptoms are: yawning, can’t find the right words to talk, bubbles swarming toward me like bees
9. My biggest migraine triggers are: weather, certain foods, bright lights, being tired, smells, emotions (happy/excitement) . . . it’s like being allergic to life
10. I know a migraine attack is coming on when: the left side of my face starts burning/tingling
11. The most frustrating part about having a migraine attack is: feeling left out of the lives of my family and friends
12. During a migraine attack, I worry most about: how my life is affecting others
13. When I think about migraine between attacks, I think: about how I’m winning because I finally have a diagnosis, a great support team and am making progress
14. When I tell someone I have migraine, the response is usually: “I’m glad you only have migraines. I thought you were really sick.”
15. When someone tells me they have migraine, I think: what has their battle been like
16. When I see commercials about migraine treatments, I think: I’m glad I have a primary doctor and a neurologist that I can trust to guide me through the maze of “treatments”.
17. My best coping tools are: relaxation, massage therapy and distraction
18. I find comfort in: my husband and my faith
19. I get angry when people say: “l have migraines and they don’t stop me.”
20. I like it when people say: “I’m glad you’re able to enjoy today.”
21. Something kind someone can do for me during a migraine attack is: “Don’t correct me or finish my sentences when I’m struggling to talk. I’m just not always able (or willing) to tell you that (for me) it’s a migraine symptom.
22. The best thing(s) a doctor has ever said to me about migraine is: “You have Migraine and I can help you.”
23. The hardest thing to accept about having migraine is: That it’s a neurological storm that is capable of attacking anytime, anywhere.
24. Migraine has taught me: a) I am a strong person and a survivor b) I am able to help others because of my health challenges.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” 2 Cor. 3 – 4
26. If I could go back to the early days of my diagnosis, I would tell myself: “You did it! You survived. Now, you can begin to get help. It’s going to get worse before it gets better, but just be patient and trust them.”
27. The people who support me most are: my primary doctor, neurologist, husband and family
28. The thing I most wish people understood about migraine is: It’s a neurological storm that attacks individuals in different ways and not everyone responds to the same medicine or treatment in the same way. Sometimes it takes lots of trial and error to find the right mixture for a particular person. No two storms are exactly alike or respond in the same way.
29. Migraine and Headache Awareness Month is important to me because: It gives us an opportunity to become more informed about migraine and what is happening in the migraine community.
30. One more thing I’d like to say about life with migraine is: that this neurological disease that has no tests to prove or disprove its existence is a constant battle that requires patience and support from the patient, doctor, family and friends, and strength for those that are gripped in this monster’s tentacles.

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.

30 Things Meme

migraines

June 22, 2015August 8, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: common migraine
2. My migraine attack frequency is: anywhere from 1-2/month to daily
3. I was diagnosed in: 1982 and again in 2012
4. My comorbid conditions include: depression, insomnia, eating disorder
5. I take _4___ medications/supplements each day for prevention and __1-2__ medications/supplements to treat an acute attack
6. My first migraine attack was: age 10
7. My most disabling migraine symptoms are: pain, sensitivity to sound and smell, dizziness, cog fog,fatigue, irritability
8. My strangest migraine symptoms are: sensitivity to head position changes like bending over, pain with chewing, having to drive and hitting bumps in road
9. My biggest migraine triggers are: weather/barometric drops, hormones
10. I know a migraine attack is coming on when: storms/rain in is forecast
11. The most frustrating part about having a migraine attack is: lack of knowledge of everyone I’m around, response to get treatment, the hopelessness and weariness that it will never end, disruption to my life- parenting, work, hobbies
12. During a migraine attack, I worry most about: lack of attention to my kid, I’m a single parent, my job. Covered by FMLA but what do people think
13. When I think about migraine between attacks, I think: ugh can please not ever have another????
14. When I tell someone I have migraine, the response is usually: very empathic, they usually say that they know someone who also has them and they are very debilitating
15. When someone tells me they have migraine, I think: I’m so so sorry, I hope you have good meds, a good MD and have good control of them
16. When I see commercials about migraine treatments, I think: meh?
17. My best coping tools are: meds, quiet, fetal position on left side
18. I find comfort in: the continued research on the brain
19. I get angry when people say: buck up
20. I like it when people say: let me know how I can help
21. Something kind someone can do for me during a migraine attack is: be understanding and keep things quiet
22. The best thing(s) a doctor has ever said to me about migraine is: let’s keep working until we have this figured out
23. The hardest thing to accept about having migraine is: disruption to daily life, accepting that I have precious little pain tolerance
24. Migraine has taught me: that I am not cut out for chronic pain
25. The quotation, motto, mantra, or scripture that gets me through an attack is: you can do all things through Christ who strengthens me
26. If I could go back to the early days of my diagnosis, I would tell myself: find that tryptan!!!!
27. The people who support me most are: friends and family, work not too bad
28. The thing I most wish people understood about migraine is: it is horrible and not just a bad headache. So many accompanying symptoms due to neurological/vascular issue in the brain. We also know the research that we are much more likely to have a CVA than the gen pop.
29. Migraine and Headache Awareness Month is important to me because: I would people to know that I am not using my vacation time from work curled up in a dark house for fun.
30. One more thing I’d like to say about life with migraine is: it’s hard when you plop it onto someone’s life who is already dealing with depression. Add chronic pain to depression, it’s just not a great mix. It really is an uphill battle so many days. I need almost an army of a support team to keep me going.

30 Things Meme

30 Things About My Life With Migraine and Chronic Migraine

June 20, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is Migraine and Chronic Migraine.
2. My migraine attack frequency is 10-20 per month, depending on the season.
3. I was diagnosed in 1986.
4. My comorbid conditions include depression, anxiety, and fibromyalgia.
5. I take 0 medications/supplements each day for prevention and 4 medications/supplements to treat an acute attack. I will be trying Botox again for prevention.
6. My first migraine attack was in 1986 when I was eight years old.
7. My most disabling migraine symptoms are head pain, photophobia, phonophobia, neck pain, and occasionally nausea.
8. My strangest migraine symptoms are tinnitus and droopy eyelid.
9. My biggest migraine triggers are weather/environmental factors, alcohol, MSG, nitrites/nitrates, loud noises, bright lights, strong odors/heavy scents to name a few.
10. I know a migraine attack is coming on when I get tinnitus, neck pain, strange food cravings.
11. The most frustrating part about having a migraine attack is not having adequate pain relief.
12. During a migraine attack, I worry most about whether I should go to urgent care or the ER knowing that the relief would be very temporary and a rebound headache would be the result of it.
13. When I think about migraine between attacks, I imagine how nice it would be to never have another migraine again.
14. When I tell someone I have migraine, the response is usually to offer up suggestions, cures, and treatments which drives me insane.
15. When someone tells me they have migraine, I show compassion and understanding, listen to his or her story, and only offer advice if it is asked of me.
16. When I see commercials about migraine treatments, I think “Been there, done that”.
17. My best coping tools are rest, relaxation, ice packs, and mindfulness.
18. I find comfort in my family.
19. I get angry when people say to drink more water or exercise or to try whatever it is that “cured” their friend, cousin or co-worker who had migraines.
20. I like it when people say that they didn’t know how serious and debilitating migraine is and are grateful for educating them about it.
21. Something kind someone can do for me during a migraine attack is provide dinner for my kids so that I don’t have to worry about cooking or trying to order in and can just relax and sleep.
22. The best thing(s) a doctor has ever said to me about migraine is…. I’m still waiting on that.
23. The hardest thing to accept about having migraine is that it’s not going to go away.
24. Migraine has taught me patience, understanding, forgiveness, and compassion.
25. The quotation, motto, mantra, or scripture that gets me through an attack is, “I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.” – Mother Teresa
26. If I could go back to the early days of my diagnosis, I would tell myself to not to be so angry. It’s not something you prefer to live with but you can find happiness within this life.
27. The people who support me most are my family, close friends and the migraine/chronic pain community.
28. The thing I most wish people understood about migraine is that is not a headache and is an extremely difficult disease to manage.
29. Migraine and Headache Awareness Month is important to me because it allows myself and others to educate others, shine a light on how little migraine research is funded, and chip away at the stigma around migraine and other headache disorders.
30. One more thing I’d like to say about life with migraine is although it is a life filled with pain, I have learned that the little things in life are what is important and to cherish and hold on to them.

Coping, Treatment

Steroid Withdrawl? DHE/Methysergide Side Effects?

June 18, 2015July 18, 2015 Kerrie Smyres

Courtney at 1-800-Contacts dealt with an irrationally angry customer yesterday. This customer was furious that after the wrong contacts were delivered on Monday, she was promised a replacement pair would be delivered by 10:30 a.m. Wednesday, then found out that the person who made that promise couldn’t actually guarantee a delivery time. The customer demanded an explanation for what happened and complained about the terrible customer service. The customer was me.

But that’s not me at all. I’m understanding and easygoing with customer service. Mistakes happen. I realize the person I’m talking to is not responsible for the problem and does not deserve to be dumped on. I err more toward being a doormat than being the attack dog. Unless it’s Courtney from 1-800-Contacts.

I didn’t stage this interaction as an example of how I’m not myself this week, but it’s a perfect illustration. I ask Hart for his opinion, then get annoyed when he offers it. I’m irked that the farmers’ market was open when the website said it wouldn’t be. I’m mad I’m unable to be at the American Headache Society conference this week. My messy house feels so oppressive and agitating that I’m ready to haul everything out to the curb. I blew up at poor Courtney. Although the depth of my unexpected sorrow on Sunday was shocking, it’s far more familiar than this anger.

Hypotheses:

I’m going through steroid withdrawal after my last dose Friday night. Steroids are notorious for causing mood changes, so this seems the most likely. Anecdotally, people who have IV steroids for MS report similar issues. They also report fatigue, which I have this week, too.
The DHE-45 and/or methysergide has caused some bizarre lingering side effects. DHE doesn’t have recorded mood effects. Methysergide does, but they’re vague and rare. I did find a case study of someone who had “psychiatric side effects” with methysergide, though they were different than mine and he was on it for weeks, not a day. From the literature, this seems an unlikely explanation. But my response to methysergide on Sunday keeps me from dismissing it.
The exceptionally mild migraine attacks I’ve been getting when I eat are altering my mood in addition to making my feet cold and causing slight fatigue. I tested this by taking naratriptan (Amerge) and Midrin after I ate, but had no change in any of my symptoms. (Which makes me think maybe it’s not migraine at all, but something else. I got tested for anemia today.)

I’m going with a combination of steroid withdrawal and a wild reaction to methysergide. My symptoms are improving each day and I continue to take it easy. This means not being very involved in Migraine and Headache Awareness Month or sharing as many 30 Things on social media as I’d like. It’s strange to have being sick interfere with a job that relies on being sick, though I should be used to it by now.

By the way, I apologized to Courtney. I’m not happy that my contacts were not delivered until 10 hours after they were promised, but it wasn’t her fault.

P.S. Taking a picture of my angry face resulted in far more pictures of me smirking and laughing than growling. This is a good sign.

7/18/15: I asked my doctor about this last week. He thinks the steroid was to blame. He said he’s never seen a reaction like this to DHE or methysergide, but has to steroids.

30 Things Meme

Migraines: A blessing and a curse

June 18, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is:
Chronic migraine, migraine with aura, Cluster Headaches
2. My migraine attack frequency is:
This varies. In the city at least 20 migraine days per month.. Away from the city 8 days, or less per month. I moved to a different climate to see whether a more suitable environment would help and it has. If I visit the city, I’m back to the same pattern.
3. I was diagnosed in: 1998, but I have had migraines since I was 8 and was told I was being dramatic, or lying.
4. My comorbid conditions include: Multiple Chemical Sensitivity, Cluster Headaches
5. I take ___6_ medications/supplements each day for prevention and ___3_ medications/supplements to treat an acute attack.
6. My first migraine attack was:
Age 8
7. My most disabling migraine symptoms are: Aura, Light sensitivity, Smells feel like they’re attacking me.
8. My strangest migraine symptoms are:
Not being able to explain what us happening, because words make no sense.
9. My biggest migraine triggers are:
Artificial fragrances, smell of fish, falling atmospheric pressure with rising humidity.
10. I know a migraine attack is coming on when:
I feel euphoric, or bitchy for no reason
11. The most frustrating part about having a migraine attack is:
Missing out on fun activities, people judging and blaming me for something I can’t control, people giving me ridiculous advice and then being angry when I don’t follow it.
12. During a migraine attack, I worry most about:
I don’t really worry about anything, but I wish it would just stop.
13. When I think about migraine between attacks, I think:
How much can I get done while I am pain free, I find ways to enjoy every moment of pain free time. I wish life was always this simple.
14. When I tell someone I have migraine, the response is usually:
I usually only talk about migraines to people who get them too. I can’t help being furious with people’s judgments and negative feedback, so I try to fake my way out of the situation.
15. When someone tells me they have migraine, I think:
When people tell me they have migraine, I feel like I have found a kindred spirit.
16. When I see commercials about migraine treatments, I think:
I never pay attention to commercials about anything
17. My best coping tools are:
Solitude, cool places, medical marijuana, silence, wearing sunglasses indoors, avoiding contact with people who lack compassion, avoiding all chemical exposure.
18. I find comfort in:
Knowing that there are other people out there who also deal with this.
19. I get angry when people say:
“Just drink salt water, or lemon juice” or some other substance that 40 years of migraines have proved useless.
20. I like it when people say:
“is there anything I can do to makes things easier for you” Usually the answer is no, but just having people ask the question makes me feel they care.
21. Something kind someone can do for me during a migraine attack is:
Usually there are no people around, but if there are, I prefer them to do their own thing. If I need something I will ask. Neck and shoulder massages or fire cuppng do helpl
22. The best thing(s) a doctor has ever said to me about migraine is:
I really can’t help you. Honesty. Acknowledging that nothing has made a difference and giving me a prescription for medical marijuana.
23. The hardest thing to accept about having migraine is:
Everything: Housing (I have to live where people don’t use fragrances), Employment – I have to be self-employed, so that I can avoid exposure to toxins, money – I am just getting by, social relationships – I come across as weird, especially around this fragrance issue, friends – not many, people don’t get it. I try not to let people know I have a migraine, but sometimes I just have to get out of the situation to somewhere safe fast.
24. Migraine has taught me:
Compassion. endurance, the art of doing things by feel, determination, to love the dark, research skills, Pharmacogenetics, neurochemistry, herbalism, how to make my own medicines, thinking outside the box, rebellion, a healthier lifestyle, living in the moment.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
” What doesn’t kill me makes me stronger”
26. If I could go back to the early days of my diagnosis, I would tell myself:
“Look for older, more obscure research”
27. The people who support me most are:
Online community.
28. The thing I most wish people understood about migraine is:
No one chooses migraines. We haven’t done something wrong, or not done something right. We really don’t want pop culture advice. Just because it worked for one person, doesn’t mean it works for everyone, we’re all biochemically unique.
29. Migraine and Headache Awareness Month is important to me because:
There are so many myths about migraine out there. Education is key.
30. One more thing I’d like to say about life with migraine is:
The positive things about migraine for me are:: I have done a lot of research and educated myself. I understand migraine really well. I have a deeper sense of compassion for the suffering of others, I have looked at so many options and all this searching has made m e a better, more self-aware human being. My understanding of the limitations of modern medicines has allowed me to take my own path and find my own solutions. I have let go of the hope that people will support me. I have to walk my own path, and always choose health before anything else. This knowing that I am on my own, inspired me to get rid of everything move to a different climate on a shoestring budget. This move has decreased the frequency and duration of my migraines. I can avoid a lot more triggers here. I have learned about rural living, small communities, organic gardening and herbal medicine.