My story.. a human hermit crab
I am a human hermit crab. Most of my days consist of being in dark rooms, quiet sounds. Some day i know this will change but for now it is just how it is.
I am 35 yrs old, have a 6 yr old and a 2 yr old. I can never say “yes” to anything planned, can never schedue a playdate, and if someone sets up a playdate I most likely will not make it. I know it sounds like I look at the glass half empty, but I am just telling the truth. I have Chronic Migraines. If I have a good day I can not predict when it will be or how long it will last. My kiddos are pretty much shut inside the house when home with me…about 80% of the time, because some of my headache triggers are sensitivity to light, sound, rain, hormones, bass sounds, high pitched sounds, pressure systems, dental work, and it goes on as a list that seems endless. I get migraine/tension like headaches about 28 days a month or more at this point.
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I have had aura headaches which affect my vision. Once while driving I could barely see the road or anything else for that matter. I kick myself to this day for being stupid and not calling for help that day. My headaches will stop me in the middle of walking and I have to clothes my eyes and block out sound and motion as well., Grovery store lights make my headaches worse. As you can imagine it is hard to trust myself to go on such a common road trip to the store…the things people seem to not appreciate that they can do with no worries. I celebrate a trip to Walmart that I can take by myself! “normal” days are always to be celebrated!!!
I started getting heasdaches after sports and during hormonal changes in highschool. Then in college they were a bit more often, after college more so, and then after princess Abby was born they got better for a while and started back. Ben was born and oh boy. The night that my precious baby boy was born was the worst migraine in my life! I know once again this was caused by a hormonal change. Since then my headaches went from 8 or so a month to double that and here we are at nearly everyday.
Since moving here to GA it has been very difficult to make and keep friends and playmates for me and the kids. Imagine a friend that if you ever want to see or have a playgroup for the kids, you have to go to their house or they have to cancel because they cannot drive. Not only that but all of the kids have to be quiet while there and play in the dark. Not an easy friend to have to say the least.
My husband is awesome through all of this. He supports me and will pretty much change all his plans if I have a good day just to have that wonderful time back where we can go outside, go to the park, enjoy the kids being loud if they want to!
I dont know what I would do without my mom and my sister here. COUNTLESS times they have come and taken the kids for the day because I am stuck in the dark and their pitter patters cause my head to poundd.
I’m grateful for my friends that have stuck around…I appreciate them more than I could even put into words.
I have a wonderful support network online from family members and friends that I do not see much at all but am thankfully connected by facebook.
What I have tried: physical therapy, chiropractic, neurologist (all of the preventative types used to prevent these plus some migraine treatment meds such as imitrex and finally rescue meds-pain killers), botox, in house stay at headache centers, the headache diet, feverfew and butterbur (these are natural herbal meds that have helped some migrainers), hitachi mushrooms that help a friend, soaking my feet in hot water, ice/cool rags on my head, head pad on my neck….really I try to try whatever is suggested by anyone at this point lol!
What works the best: anti seizure meds seem to be the best preventative…I have 1/2 good days some days up to almost 2 full days last weekend!
What’s next? I have been referred to a couple different doctors by friends and family. These doctors will probably starty by trying a natural approach…I guess we’ll see! I’m excited to try yet another new doctor. I cant say I’m completely optimistic because I do not want to get my hopes up to have them smashed again.
There it is in a nutshell…a big nutshell lol! i am a completely blessed woman with an incredible husband and the cutest sweetest little babies in the world! God is my Rock…i know that I am going through this for a reason… right know only God knows that reason.