Will I ever have a life again?

By jessmarie1005

2 min read

I've had migraines since I was a child, I'm 48 now. I have memories of them. I'm sitting in bed with my mom next to me, rocking back and forth, crying in pain. Sometimes we'd be in the bathroom and she's holding a bucket in front of me and I'm on the toilet sick from both ends(sorry, gross) but, that's how bad they were. I couldn't have more than 9 or 10. I can still see the pink flowers on the black wallpaper go in and out of focus. I felt like they would never end and I would just rock until I finally fell asleep exhausted.

Migraine diagnosis

My diagnosis came around age 16. Menstrually related migraine without aura. Woohoo, something to make my monthly flow even worse. My periods were awful, 12 days long, cramps, heavy flow, and merciless migraine-like clockwork. I was given something for pain and told to rest when they happened. So basically...deal with it.

Family history

I come from a migraine family. Dad had them his whole life. Mom had them until menopause. My sister has them. Her son has them. My two daughters have them. Yes, we're all in the family here, but lucky me has it the worst these days.

Over the years I've seen lots of specialists and had several different diagnoses. One that stands out for me is when I was diagnosed with Pseudo Tumor Cerebri or PTC for short. I had several lumbar punctures(about 16 or so over 2 years) that led to that diagnosis. Which also led to have a lumbar shunt placed to drain off the excess fluid per the PTC. Well, there wasn't excess fluid, so it drained too much and I basically had a spinal headache immediately after surgery. Which continued until they got me readmitted to the hospital and in surgery again and took the shunt out. I remember bits and pieces of that week and I begged my family to kill me, the pain was so horrendous! That was in 2004.

Chronic migraine

Fast forward to the present. I'm now disabled from Chronic Migraine with Aura. I'm on my 2nd CGRP medication Emgality(Aimovig caused too much constipation). Don't know yet if it's helping yet. I also take Topamax but want to stop it if Emgality helps. I currently have daily headaches and between 4-6 migraines per week since stopping Aimovig. It had gotten me down to 3-5 but the side effects were too bad.

I just want my life back a little bit. I want to be able to do more than 1 thing per day. Maybe shower and cook, not either-or. I hope I get there again one day.

Thanks, everyone! Every day may not be good, but you can choose to find good in every day!

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Allyson.Ellis Community Admin
Uff, I hear how much you endure living with migraine, Jessica. It is miserable to suffer so severely for so much of your life. It is frustrating when a medication's side-effects are more difficult than the symptoms! I hope making the switch to Emgality will be positive for you and produce fewer side-effects. There are many in the community who have had a positive experience switching from Aimovig to either Ajovy or Emgality so I hope that will be true for you as well! Please keep us posted on how you are feeling and how you respond to Emgality. Wishing you a gentle day. ~Allyson (Migraine.com team)
jessmarie1005 Member
Update: I'm currently on day 10 since my 2nd Emgality injection. I had been down with a constant migraine, flu-ish symptoms and severe exhaustion since the morning after giving myself the injection. These side effects lasted all the way to day 8 when I finally had enough and called in my Dexamethisone prescription to break the cycle. I started feeling a bit better by the next day. It's hard not to be discouraged after this episode with my new medication, however I'm hoping my next injection won't be so bad. I'm also hopeful that between now and then I may see some improvement.
lindaann Member
This article hits very close to home for me, also a chronic migrainer. My first 9 months on Aimovig were great, cut my migraines in half. Because I was doing so much better I slowly took myself off Topomax. Was okay for a month and then boom, right back to where I was before Aimovig. Not sure if its the topomax but very frustrated!
hh45612 Member
Jessica, you've been on my mind since I read this... so much sympathy for you and even tears... and understanding. I, too, am at the chronic/constant level for over a decade now, with co-diagnoses, and 24/7 aura. Aura is so life-involving, isn't it? We have to see through that mess that our brain "sees" to even be able to see what our eyes are looking at. And the nausea it brings with it, like being constantly car sick. And that's on top of the constant pain. I hear you, understand, relate... and prayed for you. I applaud your bravery to keep trying, to keep wishing for betterment, to purpose to find something good!