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Kelsey Mohring avatar

Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 23 hours ago | Replies (7418)

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Profile picture for rhubarbtart @rhubarbtart

Hi there! I’m a chronic migraineur due to a TBI from an auto accident back in November 2017. Without meds I migrained pretty much 24/7. I can remember a 3 month period where there were only 2 days free from migraine. It took some trial and error to find meds that worked (at least by the clinical standard). I now get Botox injections every 10 weeks and occipital nerve blocks every 4 weeks, with rizatriptan for my acute med. I still get migraines, but not as frequently or as painfully (most of the time) although it’s quite variable.

The migraines cost me my job - I tried to keep working for the next 2 years, but ended up getting fired for no longer being able to do my job. I was angry and heartbroken at the time, but with hindsight they were absolutely correct. I’m currently applying for permanent disability, so fingers crossed.

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Replies to "Hi there! I’m a chronic migraineur due to a TBI from an auto accident back in..."

Hi, I have suffered from severe chronic migraines since I was 6 years old. I am now 57. I also get Botox every 10 weeks and did occipital nerve blocks and trigger point steroid injections for 2 years. I stopped the occipital nerve injections as they were so painful for several weeks after injection and I decided it wasn’t worth it. I also get a migraine infusion every 3 months called Vyepti which I feel has been helping quite a bit once I got to my current dose of 200mg. Have you tried it? Definitely worth asking your neurologist about! I have Zolmatriptan and sumatriptan for rescue meds. Also do you take any preventative medications? I was on Topamax which was working really well for a few years but it gave me kidney stones so I had to quit it. Now I’m currently on propranolol daily. I also got put on Nortriptyline for my Functional GI Disorder but I think it’s helping my migraines too! It’s a very common preventative medication for migraines. I have also done gabapentin ( did not work for me ) . There are also some weekly self administered preventative shots like Ajovy or Emgality which you should definitely look into if you haven’t already, I did Ajovy for about 5 years until it stopped working for me and I switched to the Vyepti infusion. I have, like you, had several times in my life when I was literally never headache free. I truly understand your pain. I had several years where I was ending up in the ER 2 or 3 times a month because it was so bad I couldn’t function. Got labeled a drug seeker. I no longer work but it definitely affected my ability to work and I got fired from one job because of missing too many days. They said I was unreliable, which was certainly true. I’m freaking out because my Cardiologist doesn’t want me to use triptan meds anymore for rescue meds. I don’t know what else is even available for rescue meds anymore. I have used triptans for so long. But they usually work and I am afraid not to have them available to me anymore! I’m so sorry you’re having to live with this nightmare. I wish you luck to get disability. I can’t qualify for it because even though I’m not able to work, due to Lupus and severe GI/IBS , as well as had a Spontaneous coronary artery dissection (SCAD) heart attack in 2017 and 2 strokes at age 49. My husband and I own 2 restaurants which I worked at for 30 years before my heart dissection. Because I am one of the owners of the restaurant, even though I can’t work there anymore, I can’t get disability benefits because the restaurant profits are considered income. Even though I don’t take a paycheck anymore. Disability is so hard to get and so unfair. So I pray for you to get it! But also just pray for you to be feeling better. Write back if you want or have any questions. I would like to know if you’ve tried the infusion or some of the preventative medication I mentioned?