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

 

[elle_71125]

I just started on Ajovy injections for my migraines. Like @Roselina , I have high hopes for it, as I take an awful lot of triptans and I'd love to be able to dial back on those. Fingers crossed, because these babies have been sucking the life out of me for too long now.

@Roselina I know you just started on your injections too. How has it been working for you after that initial migraine? My neurologist told me it may take a couple of months to truly take effect, but that most people do really well on it. I am so hopeful!

@JPie, I use FL-41 tinted lenses too. They definitely help. I can't imagine working on my computer all day without them. Unfortunately, I still get chronic migraines, but these babies are fantastic! I just checked out your link and saw they make even stronger tints and sunglasses, so I'll be shopping those babies later.

 

[elle_71125]

I just started on Ajovy injections for my migraines. Like @roseli have high hopes for it, as I take an awful lot of triptans and I'd love to be able to dial back on those. Fingers crossed, because these babies have been sucking the life out of me for too long now.

@Roselina I know you just started on your injections too. How has it been working for you after that initial migraine? My neurologist told me it may take a couple of months to truly take effect, but that most people do really well on it. I am so hopeful!

@JPie I use FL-41 tinted lenses too. They definitely help. I can't imagine working on my computer all day without them. Unfortunately, I still get chronic migraines, but these babies are fantastic! I just checked out your link and saw they make even stronger tints and sunglasses, so I'll be shopping those babies later.

 

[Roselina]

I just started on Ajovy injections for my migraines. Like @roseli have high hopes for it, as I take an awful lot of triptans and I'd love to be able to dial back on those. Fingers crossed, because these babies have been sucking the life out of me for too long now.

@Roselina I know you just started on your injections too. How has it been working for you after that initial migraine? My neurologist told me it may take a couple of months to truly take effect, but that most people do really well on it. I am so hopeful!

@JPie I use FL-41 tinted lenses too. They definitely help. I can't imagine working on my computer all day without them. Unfortunately, I still get chronic migraines, but these babies are fantastic! I just checked out your link and saw they make even stronger tints and sunglasses, so I'll be shopping those babies later.

Ah, thank you for asking! I was so so disappointed when I got this major migraine just shortly after the injection. I thought my eye was going to pop out, it hurt so much. I took two triptans and it finally helped a bit. The next two days I had a hint of migraine but it never really broke out. And I didn’t need meds. After that… NOTHING! I am basically migraine free for the longest I have ever been migraine free. After developing a chronic migraine over the last few years I feel like in heaven. I still can’t believe it. All I got was tension headache once and tiny hints of migraines but that was it. I hope it stays like this and I hope so much it works for you too!

 

[Arcadian]

I've talked about my migraines in the past. Mine are hideous at times and very scary. I have some interesting triggers.

The worst is when I get the numbness on one the side of my face and body. Those are always scary because it feels like a stroke (they're not, I checked) I thankfully don't get these too often.

The basic ones (where I jsut feel blah but not always with pain in the beginning stages) , and the ones with aura or just light sensitivity, Those are good, I know I got a good 30 minutes before they become full blown, so I can get stuff on board or go chill out somewhere.

But I don't always become light sensitive at first. I wish I did. I sometimes get other symptoms first and those are the ones that are much more confusing (like for instance I may feel really blah and just not myself, then get light sensitive then have a massive headache 5 minutes later)

Normal headaches are totally different than any of these. Normal headaches a couple of tylenol will work. Not so on these.

And yes I'm having one mother of one right now, but such is life. I use dark colored screens with white lettering which helps a lot. darker rooms or roooms without bright light.

In my case either the drugs don't work anymore or I'm allergic.

I remember the first time I had the facial numbness and went to the ER (they scanned my head) well apparently they could see me having a migraine

So I go strictly to management. I use MM with decent success most of the time.
If migraine is caused by barometric changes, all I can do is keep it in check but nothing stops it completely.

Straight Peppermint EO up the nose helps as well as being in a dark room. In addition, chewing fresh ginger helps to keep me from throwing up...sometimes.

I might get 2-3 a month. Various flavors I don't get to pick and choose...lol
Used to be more prior to me being on HRT.

 

[elle_71125]

That is amazing!

Ah, thank you for asking! I was so so disappointed when I got this major migraine just shortly after the injection. I thought my eye was going to pop out, it hurt so much. I took two triptans and it finally helped a bit. The next two days I had a hint of migraine but it never really broke out. And I didn’t need meds. After that… NOTHING! I am basically migraine free for the longest I have ever been migraine free. After developing a chronic migraine over the last few years I feel like in heaven. I still can’t believe it. All I got was tension headache once and tiny hints of migraines but that was it. I hope it stays like this and I hope so much it works for you too!

That is amazing! I know exactly how disappointed you must have felt when that first migrain hit, but I'm so glad that things seem to be turning around for you now.

I have such high hopes for this one. I feel like it took ages for my insurance to approve it, and I was this close to buying it out of pocket...right up until I looked up the price tag and decided patience is a virtue after all.

 

[elle_71125]

I've talked about my migraines in the past. Mine are hideous at times and very scary. I have some interesting triggers.

The worst is when I get the numbness on one the side of my face and body. Those are always scary because it feels like a stroke (they're not, I checked) I thankfully don't get these too often.

The basic ones (where I jsut feel blah but not always with pain in the beginning stages) , and the ones with aura or just light sensitivity, Those are good, I know I got a good 30 minutes before they become full blown, so I can get stuff on board or go chill out somewhere.

But I don't always become light sensitive at first. I wish I did. I sometimes get other symptoms first and those are the ones that are much more confusing (like for instance I may feel really blah and just not myself, then get light sensitive then have a massive headache 5 minutes later)

Normal headaches are totally different than any of these. Normal headaches a couple of tylenol will work. Not so on these.

And yes I'm having one mother of one right now, but such is life. I use dark colored screens with white lettering which helps a lot. darker rooms or roooms without bright light.

In my case either the drugs don't work anymore or I'm allergic.

I remember the first time I had the facial numbness and went to the ER (they scanned my head) well apparently they could see me having a migraine

So I go strictly to management. I use MM with decent success most of the time.
If migraine is caused by barometric changes, all I can do is keep it in check but nothing stops it completely.

Straight Peppermint EO up the nose helps as well as being in a dark room. In addition, chewing fresh ginger helps to keep me from throwing up...sometimes.

I might get 2-3 a month. Various flavors I don't get to pick and choose...lol
Used to be more prior to me being on HRT.

Sending big hugs your way. *big warm bear hugs*
Migraines are just miserable, and living with them feels downright depressing at times. I swear, every time I think I'm starting to get a handle on how it works, some new trigger or new symptom pops up and I'm left scratching my head like what??? Why??? I've had facial numbness too and it really threw me for a loop.

I wonder of there's a migraine bingo card out there...*hold please*... There is! Might as well try and have some fun with it.

 

[elle_71125]

Here's mine. You know, for funsies.
I've been very blessed in life not to struggle with sleep. Thank you, Jesus. Knock on wood. Whatever it takes to keep that one blessing. Lol.