Migraines / headaches

[eclipse]

I’m sorry your Botox wears off after 2 months and hurts! That sucks! I don’t mind the injections, more like a pinch for me (yep there’s a lot isn’t there) the one that hurts me is the injection into the back of my head, right where the tendon goes into the skull…I used to get a lot of headaches from there and couldn’t even palpate that tendon! Now I can push on it with no issues…dr figures that’s why it hurts when he injects into it!

I do have to add though, the afternoon of treatment, my head always feels heavy and I am tired…and usually have to sleep the afternoon away…sitting up as we get told not to lay down for 4 hours!

[pompeiii]

@eclipse

months and hurts! That sucks! I don’t mind the injections, more like a pinch for me (yep there’s a lot isn’t there) the one that hurts me is the injection into the back of my head, right where the tendon goes into the skull…I used to get a lot of headaches from there and couldn’t even palpate that tendon! Now I can push on it with no issues…dr figures that’s why it hurts when he injects into it!

I do have to add though, the afternoon of treatment, my head always feels heavy and I am tired…and usually have to sleep the afternoon away…sitting up as

I’ll take 2 good months over 3 terrible months (and those 3 terrible months are far better than they were before trokendi/topiramate). As for the pain during the injections? It’s not everywhere that really hurts. Just certain places. The neurologist can even tell/hear when injecting. For me, behind my right ear and the base of my neck are by far the worst and I’ll almost pass out if we’re not careful. They gave me the last batch laying down and it was a lot better. Hurt, but no dizziness. On the other hand, the shoulder area actually feels good.

I definitely don’t feel great the rest of the day after botox. This last time it was 2 days that I felt heavy/achy/exhausted.

I say all of this when for some reason I’m stuck in some migraine cycle right now. Daily migraines since Monday. Lost of aphasia. Lost of nausea (don’t always have). Lots of pain. Not severe though (I get a lot of functioning migraines in that I can plod through life with them). I’m not even 2 months into the botox. All I can think is it is the weather pattern plus allergens. Either way, it’s not very enjoyable. And then I remind myself, this was every day for years when things were really bad. But I’ve lost my tolerance now that I’ve found stuff that works.

[Old_Mac_Donald]

Thanks Seabreeze. As we are coming into our winter months, my migraines have decreased considerably.

Also, I recently broke my collarbone and had to have a month off of work. When I saw the doctor for my return-to-work certificate, I mentioned “while I’m here…” that I needed a new triptan script (not my usual GP as he was booked out), he had a casual look over my history / MRI and got a bit excited. Turned out that migraines were of an interest to him, and he explained that often triggers are on a “points” scale. For example, if 0 is normal, and 100 is “migraine event”, then different triggers might be worth different points. Not enough sleep might be 20 points, too much coffee 20 points, change in weather / pressure - 50 points. Etc.

So, if I am at a 0, and have a run of “not enough sleep”, it might not trigger an event. But combine “not enough sleep” over several days, with too much coffee and a glass of wine - boom. 100+ points, migraine event. He said often it will take up to two weeks for someone to return to a “zero”, hence why you might get a run of events.

He gave me some excellent insights, and even described (without me telling him about it!) the “first day of holidays/weekend” migraine events - I thought it was just me who got the migraines on my first day off. He also strongly encouraged very pro-active use of the triptans (which work for me, and that I had been feeling like a drug-user by taking too frequently), and said if one doesn’t work, take a second (yay!!)

In the past four weeks, since I broke my collarbone, I have had only two migraines, one trigger by the fall / trauma that broke my bone as my neck took a bit of a bashing. The second was after a rather hot day. Both were controlled by the medication; the first was unavoidable and the second was “cut off at the pass” by the triptans .

I’m writing this on my third shift back at work - night shift, 3am in the morning, third night running. I will update as to whether or not I get a migraine as a result.

My doctor has set me to look at triggers in a new way, and to document as much as I can around my events so I can work out possible triggers and how much they contribute to events (rather than a trigger being in isolation).

[eclipse]

It’s very interesting isn’t it…when I went in for my last surgery, this anesthesiologist was very young, when she saw I was a migraine sufferer she also had me take a Triptan before I came to the hospital and then said she would add something to my IV to stop any migraines from even starting (she also added a steroid to help my rotator cuff, but that’s a different story LOL)…Another of my triggers is Stress, so she realized surgery is stressful so headed off a migraine before it could start and this was my first surgery where I haven’t got a migraine!

[TheJenners]

Another sufferer. I also have a lot of related or unrelated neck pain and am hoping for botox for THAT and migraines. I am on a daily PPI (propranolol) that has helped. I am not 100 percent on headaches, there are “bad headaches” and there are “migraines” with specific migraine symptoms, but I fully believe some/most of the bad headaches are also migraines. Some are specific to associated neck pain, like if my BF pushes on a knot in my scalene muscle I will have instant migraine/headache pain, it is like an ice cream headache that goes on and on and… I have literally cried when he does this. When he releases, it generally goes away and my neck will feel better too. I have arthritis up and down, C2-C6 or something and when I move I hear and feel all sorts of creaks and pings and meaty crackling and it pops a lot.

The one thing is that the PPI stopped most of the daily headaches (yay) but as time has progressed, if I get a migraine it is days long and I have to take Maxalt as much as my rx allows, often up to five doses. And I still get the neck pain. Oh and it has effected my motivation quite a bit as I dont have high bp, and I’ve gained a lot of weight.

I have an appt with the PA who got me on the PPI tomorrow and then a neuro later in the month.

[baybrio]

@Old_Mac_Donald

I had been feeling like a drug-user by taking too frequently

When I pick up scrips I walk out with a huge bag. My only meds are for migraine.

I like the additive point system. I wish more docs would spell that out for us. I use a FREE app called Migraine Buddy (I know, the worlds worst name). It allows you to add notes as well as migraine symptoms, duration, meds records the weather, you can put in sleep. Plus it’s very easy and intuitive. It would be very easy to add notes with points.

I’m interested in exploring the first day off syndrome. I always thought that was just that I slept too long.

[baybrio]

@baybrio

Migraine Buddy

Just to be clear, I don’t work or benefit in any way from Migraine Buddy.

When I suggested it to my friend she kind of groaned because she had tried other apps. She gave it a try and because it’s so easy to use she kept track of her symptoms, migraines etc and was astonished at how many she was having. This allowed her to talk to her neurologist with much better frequency and intensity information and get on a better program, including Botox.

[eclipse]

I use that app too…migraine diaries are extremely useful!

[SummerRose]

@pompeiii

I say all of this when for some reason I’m stuck in some migraine cycle right now. Daily migraines since Monday. Lost of aphasia. Lost of nausea (don’t always have). Lots of pain. Not severe though (I get a lot of functioning migraines in that I can plod through life with them). I’m not even 2 months into the botox. All I can think is it is the weather pattern plus allergens. Either way, it’s not very enjoyable. And then I remind myself, this was every day for years when things were really bad. But I’ve lost my tolerance now that I’ve found stuff that works.

That’s absolutely miserable. And like you, since I’ve found something that works, my tolerance level for migraines has dropped significantly.

As per my neurologist, when a migraine lasts for days, a feedback loop is created where the pain of the migraine actually triggers the next wave. It’s miserable.

When I get into those cycles, I either go to the ER/urgent care for treatment or, if it’s early enough in the cycle, my neurologist will prescribe a course of steroids. Those can have significant side effects but they can stop migraines. https://headaches.org/2007/11/02/case-studies-issue-novemberdecember-2006/

I’m on Aimovig now which has reduced my migraines to one or two per month and they usually don’t last longer than a day or two.

Just an aside but I had to LMAO when I picked up a prescription for Nurtec, which I haven’t used before. The packaging was designed by someone who painfully obviously has never had a migraine in their life - it’s just a cardboard box so it isn’t even intended to be childproof but it is the most over-engineered, complicated cardboard box I’ve ever seen. You have to press on one specific spot on one side of the box while simultaneously pulling a small tab on the other side of the box to get the tablets out. I know I can easily tear the box open to get to them, but even the thought of trying to get the tablets out mid-migraine makes me ill … during migraines, my vision is off, my fingers don’t work, and my reading comprehension stinks. And yet the package designer thinks I’m going to be able to neatly pull the tablets out when I’m in that state? HAH. Not a chance.

[eclipse]

Ugg my Botox has worn off (I get it again I 2 weeks) and I’m currently in migraine hell…our weather in Calgary is bouncing all over…20c day before yesterday, snow yesterday, 1c today then 17c tomorrow…ugg…why does this happen before my next treatment? My tolerance has definitely dropped!

[baybrio]

I empathize. My Botox used to wear off about a month before the insurance would pay for another treatment. Insurance changed so now I’m only about a week
off. Post Botox migraines are horrible.

[nlf212]

Yes! I didn’t use an app but I kept track of my migraines in my notes on my phone and it was amazing how frequent I was having them! It made it much easier to talk to my doctor about them too when I had a log