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Migraine is more than a headache – a rethink offers hope

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Re: Migraine is more than a headache – a rethink offers hope

#81

Post by apprentice7 »

Hello, fellow migraine sufferers. I sincerely want you to read the fantastic essay "In Bed" by Joan Didion. It is a fantastic reflection on what it is like to have migraines and it makes me cry every time I read it because it makes me feel seen and understood.

"For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary."

Read it; it's a google search away. You'll thank me.

Re: Migraine is more than a headache – a rethink offers hope

#82

Post by mccoyb »

Anti-CGRP medicines are life changing.

The only medicine I’ve used that has all but completely eliminated my migraines during usage (Aimovig).

Unfortunately, to get these — you have to provide an arm and a leg to insurance, even when a neurologist is vouching for you.

Nothing makes me consider violence more than meeting with a highly educated, vetted, practitioner of medicine — having a conclusive conversation about a treatment plan, and then having my fucking insurance say “ope, sorry — you have to prove you need this medicine by trying anti-depressants (which might incidentally help, but not designed for migraines), or this other thing which also may incidentally help (but not designed for migraines)”

Get this — I got a prescription for Aimovig, all positive results (for a year and a half) and my insurance is still getting in the way of fulfilling the script (each month). If I miss the dose, I get a massive rebound migraine — and I’ve missed several doses because my insurance wants to send another letter to my neuro “hey are you claiming this is still worth it?”

What does one do here? Lawyer up?

Re: Migraine is more than a headache – a rethink offers hope

#83

Post by fireflash38 »

groos wrote: post #52

I started having migraines at 8 years of age, several a week. This persisted all through my life till 42 years later, I had a blood pressure emergency where I ended up in ER with 190/100 blood pressure. Thankfully, it never repeated and was never diagnosed but as a consequence I was put on Olmesartan, a blood pressure medication that relaxes the blood vessels. Eventually, the dose was reduced to the lowest, 5mg, once…

Hmm, I was prescribed Verapamil (calcium channel blocker, also a blood pressure medication), and they helped reduce the severity of my migraines with aura for a while. I eventually went off it, and haven't had near as many since. Early twenties was so awful for those migraines.

Re: Migraine is more than a headache – a rethink offers hope

#84

Post by nooron »

fireflash38 wrote: post #83
groos wrote: post #52

I started having migraines at 8 years of age, several a week. This persisted all through my life till 42 years later, I had a blood pressure emergency where I ended up in ER with 190/100 blood pressure. Thankfully, it never repeated and was never diagnosed but as a consequence I was put on Olmesartan, a blood pressure medication that relaxes the blood vessels. Eventually, the dose was reduced to the lowest, 5mg, once…

Hmm, I was prescribed Verapamil (calcium channel blocker, also a blood pressure medication), and they helped reduce the severity of my migraines with aura for a while. I eventually went off it, and haven't had near as many since. Early twenties was so awful for those migraines.

Did you find Verapamil had any mood altering or cognitive properties for you? I take it for migraines. I think it makes me a little more emotionally stable but a tiny bit slower cognitively, especially in the mornings. It's a good trade off, especially in light of how it basically stopped my migraines, but it's one I have perceived.

Re: Migraine is more than a headache – a rethink offers hope

#85

Post by usefulcat »

caitlinface wrote: post #70

I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I…

My mom had migraine headaches pretty much all her life. For many years she had been seeing the same doctor for her headaches.

Then she got old enough that she was on Medicaid, and she had to stop seeing that doctor because he didn’t accept Medicaid. So she found a different doctor. Different doctor prescribed a different treatment and lo and behold, her headaches pretty much went away after that.

Re: Migraine is more than a headache – a rethink offers hope

#86

Post by dumbfounder »

usefulcat wrote: post #85
caitlinface wrote: post #70

I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I…

My mom had migraine headaches pretty much all her life. For many years she had been seeing the same doctor for her headaches. Then she got old enough that she was on Medicaid, and she had to stop seeing that doctor because he didn’t accept Medicaid. So she found a different doctor. Different doctor prescribed a different treatment and lo and behold, her headaches pretty much went away after that.

Moral of the story: if your doctor doesn’t make you feel better try another one.

Re: Migraine is more than a headache – a rethink offers hope

#87

Post by graeme »

dumbfounder wrote: post #68

I have been diagnosed with vestibular migraines. No pain, just dizziness and brain fog and vision issues (feels like my eyes don’t point in the same direction). I also have a doctor that says I have symptoms of mold exposure (lots of correlative testing and also house testing and remediation). I have also been diagnosed with temporal lobe epilepsy by my neurologist, but my mold doctor says that is consistent with mol…

Have you tried vestibular rehab? Essentially a series of eye tracking + neck mobility exercises that support the visual and vestibular system.

Re: Migraine is more than a headache – a rethink offers hope

#88

Post by geye1234 »

caitlinface wrote: post #70

I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I…

Yep, I was exactly the same. It took me decades to get diagnosed, then several more years before I saw a neurologist. Now I'm on a CGRP blocker, I hardly get them at all.

In addition, my anxiety/depression is almost gone and my ADHD is about 50% improved (I'm not able to tolerate anti-ADHD meds). I love Nurtec. Expensive, but worth every penny. If my insurance didn't cover it, I'd pay out of pocket without a second thought. It's that good.

Re: Migraine is more than a headache – a rethink offers hope

#89

Post by geye1234 »

cf100clunk wrote: post #43

Any other migraineurs share what I call "Silver Bullet Fatigue" at trying new treatments? I've been at this for six decades with no magic solution for my own migraine problems, and I've lost count of all the neurological investigations, meds, scans, treatments, and helpful or sometimes utterly silly suggestions that have come up short over the years. Some have come close but had undesireable side effects, others made…

CGRP blockers (specifically Nurtec) were practically a silver bullet for me, but unfortunately not for everyone.

Re: Migraine is more than a headache – a rethink offers hope

#90

Post by dumbfounder »

LeoPanthera wrote: post #51
markx2 wrote: post #2

I was around 13 when I had my first migraine. A solid block of pain on the right side of my head. That occasional migraine became more frequent over the years. I had a headache 24/7 in one specific place in my head. In my early 30's, after blood tests, food elimination, x-rays and finally an MRI I was told that I had Chronic Daily Migraines. Most days were 6-7/10 pain. Those days that were 10/10 I perfected the art o…

Research says it's no more effective than a placebo, but hey, if it works, it works. https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/...

I have tried vagus nerve stimulation and it worked for about a week and then became mostly ineffective. That is consistent with this study. So, maybe try vagus nerve stimulation first and see if that works long term.
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