30 Things Meme

My life with Migraines

This is a reader-submitted story.

1. My diagnosis is: Seizure disorder with extreme migraines
2. My migraine attack frequency is: daily
3. I was diagnosed in: 2014
4. My comorbid conditions include: Depression, Anxiety, insomnia and PSTD
5. I take Seizure medications/supplements each day for prevention and Hydro 5’s medications/supplements to treat an acute attack
6. My first migraine attack was: 04/09/15
7. My most disabling migraine symptoms are: Vision, Nausea, Dizziness, and vomiting
8. My strangest migraine symptoms are: Vision disturbances and nausea
9. My biggest migraine triggers are: Unknown
10. I know a migraine attack is coming on when: my vision is funny
11. The most frustrating part about having a migraine attack is: Unavailability to function
12. During a migraine attack, I worry most about: Life
13. When I think about migraine between attacks, I think: Its a nice moment to not be in pain
14. When I tell someone I have migraine, the response is usually: Oh I’ve had a headache before.. Try this..
15. When someone tells me they have migraine, I think: Poor soul
16. When I see commercials about migraine treatments, I think: Why doesn’t my doctor try any of these?
17. My best coping tools are: Dark quiet room and ice packs if they are still cold
18. I find comfort in: nothing during a migraine
19. I get angry when people say: Its all in your head, or it’s not that bad. Or stop drinking diet coke…….
20. I like it when people say: I’m sorry your are in pain, or say nothing at all.
21. Something kind someone can do for me during a migraine attack is: leave me alone
22. The best thing(s) a doctor has ever said to me about migraine is: nothing.
23. The hardest thing to accept about having migraine is: not enjoying the simple things in life
24. Migraine has taught me: that not all disabilities can be seen
25. The quotation, motto, mantra, or scripture that gets me through an attack is: this too will end.. But when?
26. If I could go back to the early days of my diagnosis, I would tell myself: to change doctors
27. The people who support me most are: My Husband and my best friend
28. The thing I most wish people understood about migraine is: it is not all in my head, it is not an excuse.
29. Migraine and Headache Awareness Month is important to me because: so many people do not realize how horrible living with this condition really is
30. One more thing I’d like to say about life with migraine is: I don’t know in advance that a migraine is coming on, so if plans have to be changed, it’s out of my control.

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.

Meds & Supplements, News & Research, Treatment

Potential Problem with Pain Drug in Trial

In clinical trials of pregabalin, a new drug for treating pain and seizures, a participant abruptly stopped taking the medication and developed headaches, confusion, hallucinations and other neurological symptoms. An MRI, done three weeks after the symptoms began, showed an area of fluid buildup in her brain. This is the first case of such problems with the drug and does not indicate whether it is a rare or common response; it just tells the researchers and participants to watch out for similar cases.

How does this affect you? Anticonvulsants, like Neurontin, Topamax and Depakote, are frequently used to treat chronic pain. In particular, Neurontin is chemically similar to pregabalin. Epilepsy patients have long been warned that going cold turkey with any of these drugs could trigger seizures, but those risks didn’t seem to apply for people taking the meds for other reasons.

While many of us don’t follow our doctor’s instructions to the letter, it’s not a good idea to be a maverick on this one. Just as you have to taper off antidepressants, also frequently used for headaches, you need to decrease the amount of the anticonvulsant slowly. If you decide the drug isn’t working or you don’t like its side effects, get instructions from your doc on how to cut your dose.

Read the full article: Report Describes Potential Problem with New Drug for Seizures, Pain