Migraine

[kenny]

Not relevant to the above, but I am frequently indignant at the word photophobia. I am not afraid of light - I am afraid of the extreme, to the point of incapacitating, pain that can come when I go out in strong sun with a migraine.

That's not fear. That's just common sense. And my sunglasses, which I love and need like I need air, let too much light in around the top. Big brimmed hats AND shades forever!

It's not common to everyone.
So I wouldn't use the term common sense.
But sun sensitivity is common to me.

I wear the darkest Maui Jims I can buy and a wide-brim hat when outside, even on cloudy days, which IIRC have as many harmful UV rays as full sun.

 

[adlgel]

This is an interesting topic, as I’ve had very few migraines but one that was so debilitating I had to take medical leave from work for 2 weeks.

They run in my family (sister, mother, grandmother) and I never got one until my pharmacy filled the wrong birth control in my mid twenties. It triggered my first migraine. Since then I’ve only had them 1-2x a year. No auras or anything, gone in a few hours.

About six months ago I had a migraine that wouldn’t go away, and I suspect it was caused by intense stress. It lasted for over 2 weeks. Over the counter meds and even codeine did zilch. I finally went to the ER and they gave me an IV concoction and prescription Rizatriptan which cut the pain in half, and it tapered off over a few days. I also got blue light blocking computer glasses and a mount guard to see if that triggered it? I don’t know if either of those things did anything but I use them daily now

My PCP described it as a “cluster migraine”. Thoughts like “am I just going to permanently live like this???” just ate me alive! I’m terrified of getting one like that again.

I had a similar experience recently. I had been sick with a normal head cold for a few days and then on top of the existing symptoms I got a headache. Not a migraine but a pretty bad normal headache. I took Tylenol, Advil and Tylenol Sinus over the course of the next day and it didn't touch the pain. But then that following evening it transformed into "the worse headache of my life". I really thought I might have to go to the hospital but I managed to make it through.

I went to Urgent Care the next morning and they gave me a shot of Toradol. They told me that if it doesn't get better to go to the ER. Well it didn't get better so I went to the ER. They gave me an IV infusion of Benadryl and something else and did a CT scan. The CT scan showed a very small cyst in my brain. The cyst may have had absolutely nothing to do with the headache or it could be the cause. I'm having an MRI tomorrow and will be seeing a neurosurgeon but hopefully this is just something that I'll need to get periodic scans to monitor.

The IV helped reduce the pain and it was mostly fully gone by the next morning. I haven't had a headache like that since although have had 1 or 2 "normal" headaches.

 

[Cerulean]

I had a similar experience recently. I had been sick with a normal head cold for a few days and then on top of the existing symptoms I got a headache. Not a migraine but a pretty bad normal headache. I took Tylenol, Advil and Tylenol Sinus over the course of the next day and it didn't touch the pain. But then that following evening it transformed into "the worse headache of my life". I really thought I might have to go to the hospital but I managed to make it through.

I went to Urgent Care the next morning and they gave me a shot of Toradol. They told me that if it doesn't get better to go to the ER. Well it didn't get better so I went to the ER. They gave me an IV infusion of Benadryl and something else and did a CT scan. The CT scan showed a very small cyst in my brain. The cyst may have had absolutely nothing to do with the headache or it could be the cause. I'm having an MRI tomorrow and will be seeing a neurosurgeon but hopefully this is just something that I'll need to get periodic scans to monitor.

The IV helped reduce the pain and it was mostly fully gone by the next morning. I haven't had a headache like that since although have had 1 or 2 "normal" headaches.

Wow a cyst is scary, good luck on the MRI. I know cysts generally are common so hopefully they aren’t related

 

[lala646]

Hi everyone. I just came across this thread and wanted to chime in to give everyone a big, soft hug. For the longest time, I just chocked it up to bad headaches, but I finally in my mid-30's I became aware that I was experiencing migraine, and now that I'm in my mid-40's, they have mostly resolved. Mine were mostly hormonally triggered, it seems, and as my hormones are shifting, I'm getting some relief. Mine were usually 4-6 hours of intense pain, followed by 24-72 hours of hangover, 2-4x per month. My neurologist put me on Cambia, since mine weren't chronic, and it actually worked wonders for me. I have enormous sympathy for those of you who suffer from chronic episodes. I wouldn't wish it on my worst enemy.

And @elle_71125, my last really bad migraine I had tremors so bad I couldn't hold a bottle of water to drink, and muscle weakness that made it hard to walk. I actually thought I might be having a seizure. Luckily I was with my husband and a friend of ours, and they were able to get me home and to bed. It was a terrifying episode.

 

[Mreader]

I’ve been on relpax for years for my migraines. They used to be so intense that I would get very sick and throw up. Now they just are like a dull thud but won’t go away unless I take the meds. When I have one I typically have to take the medicine 2-3 days in a row bc they always rebound.

They began when I was in my 20s. My mom and grandmother had them but from very young so I thought I had escaped it. What’s really weird is my GYN attributed it to birth control and when I went off BC, it was like a light switch being turned off, and I stopped having them for years. It was so liberating. But then they crept back anyway.

 

[GliderPoss]

Interesting thread which proves to me how INDIVIDUAL migraines can be, I've had them all my life (also hereditary) and spent many years trying to figure out triggers and visiting many doctors who all offered same generic advise I do know some of the obvious like loud noise/music & heat/dehydration definitely trigger me as well as hormones during my period cycle.

I get a very specific kind of "pre-headache" which warns me it's coming then I have about 30-60mins to go home & hide in black room with ice pack on my forehead. Feel like I'm having a stroke, speech gets slow & slurred. I struggle to focus on anything. Pain is utterly excruciating.

Mersyndol used to be my best bet (only via prescription though) then a colleague suggested Endep (anti-depressant) as preventative and honestly it was life changing! I was on it for years and my migraines went from weekly to monthly and now really only every few months. It's a miracle. Have had to wean off as trying for baby so fingers crossed they don't come back with a vengeance...

 

[Mreader]

Interesting thread which proves to me how INDIVIDUAL migraines can be, I've had them all my life (also hereditary) and spent many years trying to figure out triggers and visiting many doctors who all offered same generic advise I do know some of the obvious like loud noise/music & heat/dehydration definitely trigger me as well as hormones during my period cycle.

I get a very specific kind of "pre-headache" which warns me it's coming then I have about 30-60mins to go home & hide in black room with ice pack on my forehead. Feel like I'm having a stroke, speech gets slow & slurred. I struggle to focus on anything. Pain is utterly excruciating.

Mersyndol used to be my best bet (only via prescription though) then a colleague suggested Endep (anti-depressant) as preventative and honestly it was life changing! I was on it for years and my migraines went from weekly to monthly and now really only every few months. It's a miracle. Have had to wean off as trying for baby so fingers crossed they don't come back with a vengeance...

Being pregnant may help! When I was pregnant and breastfeeding they disappeared again. Then after weaning they came back. It seems hormonal changes can have a big impact!

 

[Roselina]

I know this is an older discussion, but I wanted to ask those who have tried Aimovig. I suffered a long time, tried several therapies and finally, finally my insurance agreed that I can try Aimovig. I was so excited. I had my first shot last Monday. Well, I felt it coming yesterday evening and today, on day 3, I woke up with a major migraine. I am quite crushed. Can it just be that it will kick in later or is it a bad sign?

 

[empliau]

Hi @Roselina - Migraine is, unfortunately, a many-headed Hydra. There are those who had relief from Botox, and Emgality, and Imitrex, and indeed wonderful results - I had none. I have had good results with Vyepti, but I had to go through: triptans, antidepressants, injectables, Botox, and now finally an infusion every three months that gives me relief (mostly) for two. But the third month isn't as bad as my life before Vyepti, so I can deal.

Miigraines have multiple causes, and different people respond to different treatments. Are you working with a neurologist? If you can that is usually the best option.

Know that the insurance company will likely cycle you through treatments based from the least to the most expensive. A neurologist's recommendation that you need to try something else is really useful, because insurance will want you to cost them as little as possible.

I have suffered from migraine from nearly sixty years, and found a treatment that helps two years ago. Keep trying - I really hope you will find the thing that gives you relief. For me, most-of-the-time relief, even if I have a few migraines, is like having a life I've never known, and I'm really grateful for.

 

[Roselina]

Hi @Roselina - Migraine is, unfortunately, a many-headed Hydra. There are those who had relief from Botox, and Emgality, and Imitrex, and indeed wonderful results - I had none. I have had good results with Vyepti, but I had to go through: triptans, antidepressants, injectables, Botox, and now finally an infusion every three months that gives me relief (mostly) for two. But the third month isn't as bad as my life before Vyepti, so I can deal.

Miigraines have multiple causes, and different people respond to different treatments. Are you working with a neurologist? If you can that is usually the best option.

Know that the insurance company will likely cycle you through treatments based from the least to the most expensive. A neurologist's recommendation that you need to try something else is really useful, because insurance will want you to cost them as little as possible.

I have suffered from migraine from nearly sixty years, and found a treatment that helps two years ago. Keep trying - I really hope you will find the thing that gives you relief. For me, most-of-the-time relief, even if I have a few migraines, is like having a life I've never known, and I'm really grateful for.

Thank you for your reply. Yes, I am treated by a neurologist. We tried many things, antidepressants, epilepsy medication, Beta Blocker, triptans (I still take them when I suffer an attack, bit I take too many, that is why we are looking for another therapy). I am through pretty much everything and that is why the insurance company agreed to finance the expensive Aimovig. I hope it will work after all, but got quite depressed when I go this migraine today.

 

[JPie]

I had my first ocular migraine in college and then I was fine for years. Had my first really bad migraine in my late 30s and then I was getting them once or twice a year. I think it’s related to stress, but they’re infrequent enough that I don’t know my triggers for sure.

I started wearing FL-41 lenses just over a year ago and haven’t had a migraine since. Maybe it’s just the placebo effect but the rose tint does make my laptop monitor less harsh on my eyes.

People generally find that the tint helps with light sensitivity:

https://www.reddit.com/r/migraine/comments/18y76s3/are_pink_tinted_fl41_lenses_worth_it