It Never Stop
I had intermittent migraines from 1965 to 2006. I could go from 3-6 months migraine free and then it would hit and totally control my life for a week of hell. Back in the 60s & 70s there were no treatments for children with migraines. A real diagnosis wasn't even possible before the age of 7. But when I had them it was so bad that my pediatrition finally started me on some prescription in pill form when I was 5. I remember starting the pills on Christmas Eve. Sitting on my Grandma's screened in porch with my Mom teaching me how to swallow the pills as all the beautiful lights twinkled around us. I mastered those pills very quickly. As I aged the migraines continued but while I was on the daily treatment there was no break-through medicine they could give me so I continued to suffer. As the breakthru events continued, my pediatrition would take me off of the current daily and start a new one just in case it was the matter of my body becoming accustomed to the medication. Then I got older and there were now some 'powerful' pain meds I could have for the breakthru times in addition to the daily meds. My migraines were so bad, full of photophobia, phonophobia, vomiting uncontrollably, extreme dizzyness, loss of motor function, I could smell everything and if I even barely moved my head the violent projectile vomiting and massive increase in pain was staggering. I'd been hospitalised several times, even as a teen and adult with no success, CTs, xrays, bio-feedback, food and activity diaries for triggers, Neurologists, Therapists, Nurse Practitioners, groups. You name it, I did it. All to no avail, no leads, no change, no help. And that's the way it's been. No matter how bad I felt it was, I can't even describe how shocked I was when they started to get WORSE in 2006. They were coming more often, lasting longer with less & less time in between. PCP tried more meds for pain and a couple of daily 'preventitive' meds that helped for about 3 months and the migraines just blew them out of the water. Then in 2008, it just felt like I always had a headache. I didn't think about it until the Saturday after Thanksgiving 2008 when I was taken by ambulance to the hospital and admitted for 3 days while the docs tried to intervene. They ran tests while I hurt and experienced new medication side-effects. They did CTs, MRIs and MRAs-found nothing. Sent me home on meds that didn't help and was told to follow-up in the Neurology clinic in 1 week, which, btw, did not have any openings for 2 months. At this time I was now diagnosed with Chronic Daily Migraine and it's been that way since. There's all kinds of things that happened from then til now; too much detail for now. Today, I don't really have anything that helps and I feel like my PCP is done with it all. She told me from the start that she didn't know much about treating migraines but she'd try to help me. She's tried a few things...of course you have to give each new thing at least 3 months. Well, here I am...fresh off the Oxycodone routine of 10mg every 8 hours, which is just twice daily, and she had me trying injectible Imitrex. Well, I'd misunderstood the directions she gave me about taking it and actually ended up taking too much. No big deal to me though because it didnt make a difference, but I did have some yucky side-effects from it so I stopped it. Now, I have nothing to help but then again nothings helped for a very long time and I'm tired of it. This monster has literally destroyed my life and I don't think I can take it any longer; it literally never stops! Every single second of my day & night is filled with pain & sickness and I don't think anyone really understands. I wish every single person in the medical field would have to spontaneously be forced to live 1 week in my shoes. Today, I actually found myself wondering what would happen if I took 10 of my left-over Oxy's. Would I get to feel what it's like to have zero pain? Would I be able to open the curtains on my windows without causing the ice-pick headaches in my eyes? What's it like to go thru the day without multiple floaters distorting everything you see, distracting nausea, brain searing pain deep in my head, mind spliting constant stabs of pain randomly attacking every part of my head, neck and face? The red hot-ice cold pain that radiates in rapid waves from near my ear-across my face-down to my mouth? What's it like to be able to think my way out of a wet paper bag, actually have some kind of memory recall and be able to talk to people with an adult vocabulary? What's it like to move (let alone exercise) without spinning out of control and crashing into things or feeling all of the pain explode with a terrifying jolt? I don't know and today I don't think I'll ever know. BTW-botox was tried & failed due to sever side effects. I feel alone (although from this site I know I'm not), I have no hope of finding a good Neurologist/Headache specialist and I'm tired and even have new doc PTSD. Maybe a better life is possible for others but I no longer believe it is for me. I have no idea what happens next and I might just not care anymore.
Have you checked out the new Community Hub yet?