So it’s Wednesday, heading into week 4, so here is my report from last week. In the past week, I have had 4 days with Frova and 3 days without. That is a great ratio.
This is how the week looked:
2 double frova days with level 3 migraine
2 single frova days but with a lingering ache for most of the day. That is new to me.
But the frova free days were 100% pain free. I still stop and try to feel inside my head to see if anything is coming along to blindside me but the days have truly been pain free.
What I especially love is the waking up without a migraine. That is a real treat. Now whether that is the Aimovig, the pillow or the ginger tea, I really don’t care. I am just thrilled that I am waking up pain-free. For too long I was waking with mild to severe migraine pain.
I am getting my next delivery of Aimovig on Friday but won’t inject util the 31st as I am taking it on the last day of the month.
I am also getting my Botox injections on Friday. I am not 100% convinced that they are necessary or helpful as I had daily migraine after the last set of injections but the neurologist wanted me to continue so I will this time. I’ll chat with her on Friday about the possibility of stopping the Botox if the Aimovig is proving helpful.
I am also considering returning to get more acupuncture to see if that helps. I was having it done last summer but there was so much smoke and my migraines were so severe that I felt like I was throwing an ant at an elephant with the acupuncture. Now that things have calmed a bit, maybe my body will be more receptive to it.
Well, I haven’t managed a day without frova this second week so that is not such a positive thing. I didn’t take frova Tuesday but then I took 2 on Wednesday, 1 in the middle of the night between Thursday and Friday (so technically I guess one of those days was “frova-free”), 1 Saturday morning, 1 Sunday lunch, 1 Monday morning, and 2 today.
So where are the small successes you might ask? First, I made it through a full week of work last week because I did not wake with a migraine once. Second, in 7 days, I only woke with a migraine 4 times. Third, despite having such a bad migraine on Wednesday that I was home in bed by 5pm and missed my family dinner, the rest of the time the migraines have been relatively short-lived and managed with only one frova.
It may not seem like a big deal when I have still had to take so many but to me, these small steps are positive. I was especially enthusiastic about my full week of work. I was starting to wonder if I’d ever have one of those again. I explained to my students about my frequent absences because we were talking about mental health and it being stigmatized since it is an invisible disease and I explained that having migraine is also an invisible disease that can be stigmatized. I was in no way saying that mental health issues and migraine are the same (thought they are co-morbid but more on that at a later date) but I wanted them to understand the idea about stigma and invisible illnesses.
“I thought you were just taking extended weekends and more holidays,” one of my students said. No my dear, there is nothing holiday-like about a migraine day.
So now I am half way through my first dose. Not a huge improvement but maybe a slight one to start with. No side-effects (touch wood) so that is positive too. Next week I will have botox injections again as my neurologist feels that I should continue with those for now. My last set of injections did NOTHING for me which was unusual but maybe with the Aimovig there will be more success.
I’ll check back in next week. For now I will sip my ginger tea and read my amazing book – The Wolf in the Whale. I highly recommend it.
It’s almost 8pm and I feel like today is the first day where I have been pain-free. It is hard to believe as I kept pausing and “feeling” inside my head to see if there was anything going on but so far, so good.
Yesterday did remain frova-free but I woke up at around midnight with a band of pain below and above my eyes so I took my 2 Tylenol and 1 Ibuprofen concoction which worked as I woke up this morning with no pain.
I do want to share another “must-have” in my migraine bag of tricks which is what I call my dragon juice. I discovered it when I was living in Uganda and now I always buy several tubes to bring home. It’s a roller ball with a strong methol/mint liquid that I spread over my forehead, along my nose, under my nose, and on the back of my neck. The smell is wonderful and it is potent! Last October, when I had such a terrible migraine that I actually had to go for a shot of painkillers at the clinic, I used so much of my dragon juice that it actually burned my skin. I don’t usually use that much though and the cool and tingly sensation, added to the smell, almost masks the pain long enough for me to fall asleep. The list of ingredients on the back only adds up to 70% so I’m not sure what else is in there but sometimes not knowing is better!
Apparently Aimovig does have some side effects, the most common being tremors and constipation. I haven’t experienced any side effects so far which is awesome. There is a forum on Migraine.com where people who are using Aimovig can share their experiences and while some people have had great results, some people have had terrible side-effects. I hope that the side effects are few to none for me. You can follow that forum here.
This is the end of week 1 since my first Aimovig injection and I have had one truly pain-free day and two other days with pain but not triptan worthy pain. I would be happy with three days out of 7 being pain-free. It would be a huge improvement.
It’s only 7:30pm and I have slight pain under my eyes but I have been dealing with that since about 1:30 and it comes and goes so I am hoping that this means that I will have a second frova-free day in the past week. How amazing would that be. Wish my head was completely pain-free as I wonder and worry about the pain increasing and then having to take a frova but this is a small success.
I was thrilled to wake up pain-free this morning! I felt better than I had in ages. I slept well and I woke up well (although I always feel like I could sleep another 2 hours.)
So what do I attribute the pain-free morning to? Is it the Aimovig? Is it my awesome buckwheat pillow (which still feels quite hard and makes my ears physically ache a little) or do I attribute it to GINGER???
I came across and article yesterday (read it here) that says that research was done on the efficacy of ginger in stopping a migraine attack. It was found to be as effective as Imitrex to relieve migraine. A quarter of a tsp of ground ginger mixed in a small amount of warm water was supposed to be effective. I would have liked to read the whole scientific article but I had to pay $7.00 for 48 hours of access so I just used the Coles notes version from Migraine Again.
I decided to give it a try and had an inch of fresh ginger grated into a cup of hot water to make a strong tea. Maybe the ginger works as a preventative or lasts long enough in the body to abort a migraine as it begins while I am sleeping. Who knows. Who cares? If it works, I will take it.
So my experiment with Aimovig is not very scientific as there are too many variables: injection, pillow, and ginger. But if the combination of the three works, or if one of the three works and I’m not sure which one it is, I really don’t care as long as something works.
So if you don’t take Aimovig but you haven’t tried ginger, give it a try and let me know in the comments if it works for you. Or if you have tried it, let me know that as well. I am interested to know what the community of migraineurs has to say about it.
Imagine if after all these years, all I had to do was gnaw on a piece of ginger every night.
When Gus, my gentle 20lb cat, scratched at the bedroom door at 4:30am this morning to be let in, I knew that I needed a triptan if I wanted to function properly today. I use a contact lens case and have a few Frovas unwrapped** in there and a travel mug full of water and they both live by the side of my bed. I used to have to get up to go to the bathroom to get my dose but I found that often I was so groggy that I wouldn’t actually get up and then by the time the alarm rang, my migraine would be in full swing and beyond catching. This way, I can deal with it as soon as I wake enough to know that I have a migraine then fall back asleep. That usually allows me to continue with my day when the alarm rings.
When I get a migraine while I sleep, I often dream that I am battling a migraine and trying to get through my day. The people in my dream will often tell me I have a migraine or I tell them that I am trying to deal with a migraine. Sometimes, a person in my dream actually puts his face up to mine and says, “wake up” and it is so startling that I do. I do wish that my dreams were more gentle in letting me know about my migraine but then I wouldn’t actually wake up I guess.
So after my 4:30am frova, I slept until 7 and then dozed until just after 8 but woke still feeling that the migraine might come back. By mid-morning that sensation had gone and the rest of the day was good.
Now it may sound like I am trying to find an excuse for my night migraine but I did eat my supper early and I did have a medium popcorn with the movie so my level of nutrition before bed was low. We also went to bed later than usual so those two things may have triggered the attack. And the CGRP is not supposed to cure 100% of migraines (I wish) so maybe this was one of the ones leftover and not because the injection hasn’t worked or the pillow hasn’t made a difference. It’s too early to give up so easily.
See you tomorrow.
**Who decided that triptans needed to be packaged in child and migraineur-proof wrapping? The little tear off corners always just rip as soon as I pull on them making the frova impossible to pop out. There I am, just wanting to crawl into a dark cold cave with a mint facemask and I am rummaging around trying to find some scissors or something to pierce the blister holding my meds. It’s not fair. They should be easy to access, not locked away like some cruel joke to see how desperate a migraineur actually is for the triptan. Obviously not a migraineur who invented that.**
It’s 9:30 pm and I haven’t taken a triptan yet. My head started to twinge a bit around 5:30pm but I wanted to give the feeling time to move in or move out before I jumped to Frova. Luckily, it moved out! So I can officially say that this is day 1 without a frova since my injection on Tuesday. I have been thinking about it all day and wondering if I was going to get a migraine so it wasn’t a relaxing, carefree day of no migraine but I am not complaining. I’ll take and celebrate the triptan-free day!
Now I will see if this migraine-free status remains throughout the night and if I wake migraine-free. That will be a big hurdle that I have overcome if I do. Not that one night without triptans and without pain means that I have overcome it forever but I will celebrate the small successes.
The new pillow was not easy to fall asleep on… because it is smaller than my normal two pillows, my arms hurt from being in unusual positions. I was also cold because there was no connection between the pillow and the covers so I need to figure that out tonight. My husband said that it reminded him of sleeping in a bowl of rice crispies because of the noise that the pillow makes each time you move your head and it’s true, but it’s not loud and difficult to sleep through. Once I was asleep, I didn’t wake up from the sounds of the buckwheat moving. Tonight I will see if the new pillow helps to avoid a migraine attack during the night.
Even managed to watch a movie – Hotel Mumbai. If you haven’t seen it and you are interested in movies based on real life, I strongly recommend it but it is brutal. I cried through half of it. Maybe that released some pressure inside of me and that flushed out the migraine! It’s hard to accept that humans can be so brutal to each other.
Wish I could say I have been triptan free but I haven’t. Took a frova before bed last night and again today at 4:30pm. Almost 24 hours later so that is good but would prefer a full day with no triptan use of course.
I woke up with slight pain behind my right eye and thought about taking a frova but decided to get myself ready for work and hope that the walk to work would help. It did and the pain left, returning slightly at lunch then leaving again. But it came back after work and though I hoped it would just fade away, it didn’t so I took the frova even though I really didn’t want to. I know I would like to be frova-free but it’s not worth suffering in pain just to say, “I managed a day without frova!” Not much point if the managing means feeling like my eyeball is going to pop out.
Nights used to be my saving grace and I knew that a good night’s sleep would cure most of my migraines but for a couple of years, and more frequently recently, sleep has actually been a curse that brings a migraine a good 50% of the time. It is cruel that something that I cherish (I love a good night’s sleep) can bring such pain that I am incapable of getting out of bed in the morning. I keep reading articles about what to do to avoid morning migraines and have tried several suggestions including:
getting a humidifier
eating a snack before bed
going to bed and waking up at the same time
But nothing has helped so far. So now I am blaming my pillows but not the height or firmness of them (those I have changed to no avail) but the actual composition of the pillows. Maybe the ones I have are off-gassing and giving me my migraines?
I decided to invest in buckwheat pillows to see if something more natural would help with my morning migraines. They arrived today so this will be my first night with them. We used them in China when we lived there as they were cooler and more comfortable than the foam pillows and we loved them so I am excited about trying these ones. I bought a side sleeper pillow and a travel pillow for when I am overseas. Maybe this will be what I need to make my mornings migraine-free?
My feeling of being human was short lived and by 9pm last night, I was reaching for the ibuprofen and tylenol. This is a concoction that a doctor once told me to try so I decided to give it a shot.
The night was awful. It was one of those nights when I feel like I haven’t fallen asleep even though I must have at some point. But between 3 and 5:15, I was wide awake. I managed to doze 30 minutes before my alarm went off for work.
It almost felt as if I was waking up to see if my migraine was getting worse or better. Each time I moved, I would try to feel how I was feeling. When I got up, my head hurt like yesterday with pain under my eyes and above my eyes. I thought I would be better after a shower but no.
I had to take a frova.
Getting rid of the migraine was more important than braving it and being able to say that I was triptan free for the day. Work beckoned and I needed to answer.
I felt groggy and foggy for most of the morning but the migraine did go and while the pain threatened to return a couple of times, it did just gently ease away. Now, at 8:30pm, I am feeling a twinge of pain behind my right eye again but I am hoping that it will fade away on its own.
At about 5pm this evening, I said to my husband, “I almost feel human again.” This is no small statement as I have been battling a persistent migraine since Thursday (beyond chronic – just all the time there) but now, if I dare say it, it almost feels gone. I have been taking triptans every six hours or so since Thursday and knew that I needed to break the cycle but when you feel that your head is going to explode, it’s hard to just grin and bear it and not take anything.
I had my first Aimovig injection yesterday at 12:30 and took my last frovatriptan yesterday at 1:30pm. Since then, I have taken 4 extra strength Tylenols, 3 extra strength ibuprofens, and 1 decongestant so not drug-free but the combination of drugs and the addition of time seem to have worked.
When I woke this morning, the migraine was different. Usually it feels as though a watermelon is being pushed through my right eye socket but today it was general pain under both eyes and above both eyes, almost like sinus pain (hence the decongestant). I know migraine can present as sinus (see this article in Migraine Again) but I wanted to try anything that wasn’t a triptan.
I truly just wanted one day to be triptan free.
I have been off work this week and plan to return tomorrow to the mayhem that is Middle School. It is not an easy environment to be in with chronic migraine and I have missed so many days this year that I start to wonder if I shouldn’t consider moving to something else. But I love my job and want to try anything to make it work. So now I try Aimovig.
So this is what I looked like last night (thanks to my husband who thought these made great photos):
While I had intended to remain triptan free, by 9:30pm, I was in agony and couldn’t sleep so reached into my drawer of goodies and tried a naratriptan which was new to me. I also had to take an anti-nauseant to keep it down. This morning I woke with pain around my eyes, like I had been punched, which gradually moved into another migraine that was treated with a frova. I don’t feel like I’ll ever get away from those.
However, at 10am, my giant box of Aimovig arrived. I have decided to name my injection Bach as I prefer the soothingness of Bach to the fiery heat of habanero (although it did burn a little as it was injected…). I’ll need to make alternate arrangements for the delivery of Bach next month as I plan on being at work because this is going to work SO WELL that I will never have to miss work again.
After unpacking the box and letting the injection come to room temperature, I decided to inject it into my thigh. The white cap did not gently slide off as the video shows, I had to pull quite hard to get it off. The injection itself was easy but I could feel some pressure and stinging as it went in. My injector clicked twice as it started and ended. The video shows the window becoming a light yellow, almost liquid filled, but in actual fact it’s a yellow plastic plunger that fills the window. There is no mistaking that the medication has been pushed in.
The injection site hurt for a while if I touched it accidentally and my leg felt like there was a light line of pain going down to my foot but that only lasted a minute or two after the injection. Overall, it was quite easy and fairly painless.
I did the injection at 12:30 and took a frova at 1:30 to clear the remaining migraine from yesterday (and the four days previous). So now I wait to see what happens. Some people say “Miracle!” and see an improvement immediately. Others see no improvement. Others still see a worsening of symptoms and a resistance to triptans. Best case scenario? My migraines are gone. But I would be happy with a reduction of 50%.