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A life with migraines

I’m a 23-year-old migraneur, first onset was sometime around the age of 13 when I also began experiencing depression and insomnia. I am currently diagnosed with Chronic Migraine Syndrome, Chronic Daily Headache Syndrome, Major Depressive Disorder, Insomnia, Insulin Resistance (Pre-diabetic levels), Temporomandibular Joint Disorder, and Peripheral Neuropathy.

I have a headache everyday and it has been like that for at least the past three years, beyond that my memory breaks down because of all the medications I’ve been on trying to fight this. On top of those headaches I also have on average 13 migraines a month. Most of them are either levels 8 or 9 on that arbitrary scale they have you use. I could never say 10 because I can imagine pain worse than a migraine. 9 is my Hell.

I’ve been through three neurologists in just as many years, one of which is considered a renowned expert but at this point non of the treatments have worked. I don’t experience aura and I respond negatively to triptans. If I haven’t been on an antiseizure medication for migraine prevention I’ve been on it at high doses for sleep. I’ve tried beta blockers and calcium channels. My insurance won’t cover botox treatments and I can’t afford it out of pocket.

At the beginning of August I’m heading up to Chicago to the Diamond Headache Clinic and I hope that they will be able to tell me something I don’t know yet. I’m going to discuss possible testing for the TRESK gene function, if testing protocols are available yet.

I need something to hold out for, some medication that doesn’t exist yet but will because I struggle to keep myself alive through all this suffering.

My only advice to others is to not expect your government to recognize your suffering and your inability to lead a life as a human being, let alone your inability to work.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • L.a. Lee
    8 years ago

    I can relate to you, Tiberius. I’ve had headaches every single day of the week, 365 days of the year since I about in grade 2 or 3. My mom took me to different doctors and get misdiagnosed and sent to optometrists who recommended eyeglasses that got changed several times of the year. Unfortunately around the 80s in the Philippines where I grew up, migraine was unheard of (or at least at 7 or 8 years old, I was too young to understand what it is). I was in high school and it was then that I started noticing my symptoms: I could smell something that no one else could smell and I described it as the smell of the insides of my head or my brain (I later realized this was my olfactory aura); I had headaches on one or two sides of my head, around the eyes and temple (sometimes, my headaches resembled sinusitis which I also suffered from); I was nauseous and at times I would faint; I had cold, clammy skin, and I perspired heavily. At the time, I still didn’t recognize what my headaches were called. I was in university when I read something about migraine and other forms of headaches. I took a test and it was then that I realized I had either migraine or cluster headaches. I was 15 at this time and I still suffered with daily migraine attacks. What baffled me the most was the “schedules” of my migraine attacks. For instance I would have migraine starting at 8 AM then it would go away at 4 PM. This interesting schedule would continue 5 days a week at 8A to 4P. After 5 days, I would have another “schedule” for 5 days. I never got to enjoy my childhood due to these headaches because I isolated myself and stayed home most of the time. At 20, I heard of an otc with feverfew in it. The label indicated it should only be used for up to 3 months max. The drug worked for me as I, for the first time in my life, experienced relief and respite from migraine attacks. This lasted for about 3 years. I got into 3 MVA and my migraine came back. This time it was worse. I was prescribed various meds but to no effect. I was on Topamax and Gabapentin for several years, but they didn’t help at all. I was also on anti-seizure drug and antidepressants currently used for pain still to no effect. One day my mom and I were vacationing in Toronto and I had a severe migraine attack. My mom, who also suffered with migraine, gave me a Maxalt wafer. It worked or me, although I felt tired and felt like I was floating in the air. I knew my migraine was still there, but it was masked by the therapeutic effect of the drug. Then it stopped working. My doctor, upon my mom’s suggestion, prescribed me with Zomig, one of the triptans. It worked like a charm. I’m in my 30s now, and I’ve been on different meds including oxycontin, clonazepam (for anxiety) and sleeping pills which I took to commit suicide coz I’ve become too depressed and in so much pain (headaches and back pains) to want to go on living. I survived my suicide attempt obviously. I’m still on Zomig and other meds. Zomig is so expensive but I have insurance and Pharmacare to pay for all my meds. Am I lucky? 🙁

  • Ellen Schnakenberg
    8 years ago

    tiberius, I truly hate to see you so discouraged. Did you know there are literally hundreds of medicines and combinations of medicines that might help you? Then there are other treatments that are not medicines. You may have another health issue that needs to be addressed as well. Have you seen a headache specialist yet? You will not be ignored at the Diamond Headache Center.

    The best thing you can do to get a head start is to journal your Migraines http://bit.ly/hgE7DK and become a very educated, proactive patient. You have many potential triggers listed here already. Getting those conditions under control and looking for further triggers that may be causing trouble is a good first step.

    I hope you’ll let us know how you’re doing from time to time. Good luck at Diamond. Hopefully they will get you on the path back to good management and a more normal life 🙂

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