I have chronic migraines, had them for 30 years. I have several triggers and possibly some temporal lobe seizure activity that also is a trigger but that proved to be difficult to rule in or out as a definite cause. What I am currently on is a betablocker (inderal), an anti seizure med (topamax) and cyproheptadine which is a antihistamine shown to help with chronic migraine. For an active headache I take fioricet. Zofran for the N/V that goes along with it. Hope you find a regime that works for you, it can be trial and error getting there but the relief is worth it.
Sue B, That makes sense that might well work, (nonscientific take) coffee and chocolate may naturally enhance serotonin levels which in turn helps tame the pain causing brain blood vessels! I will definitely keep that in mind in the event I start getting bad side effects from the sumatripan (right now fortunately I only feel relief!)
Beta blockers at the lowest doses work for heart arrhythmias fine without affecting blood pressure.
My BP also runs low and the tiny bit I am on for an arrhythmia, the smallest pill and cut in half, doesn’t bother it at all.
I would ask my Dr about it if you have not tried it yet.
Also know several women that had terrible headaches for years, that as they got older and went thru menopause, the headaches about disappeared.
If someone has intractable headaches, they need to keep asking their doctor for relief or a referral to someone that may help.
That is one time to be the squeaky wheel.
Sue B, you sound just like me. Dark sunnies and all - I live in mine and a hat, even indoors.
Aspirin and “real” Coke was a remedy given by the nurse, best if the coke is warm and flat too.
But I think chocolate might be a trigger for me, damn it!
I definitely agree, I need to chase up this neuro referral. I will ask about the beta blockers… and funny about the antihistamines. I took a restavit last night because I couldn’t sleep (after sleeping for most of 36 hours) and was feeling pretty horrid still, and this morning I feel the best I have in four days. Restavit is a hayfever med that makes you drowsy, and we take it after night shift (to get a full “day” sleep). I don’t get migraines after night shift…
My migraines were directly connected to some neck issues, so not helpful. But, in the course of figuring that out I found out a couple of other things. Among which was the benefits of more magnesium (for me it solved almost unbearable muscle twitches). The reason I bring that up is not necessarily because magnesium is or isn’t a thing for you, although I believe it can help certain types of migraines, but because my levels of magnesium were directly related to what I was eating on certain days because of my work patterns. It was low all the time, but way too low on certain days.
If you eat and drink substantially different things on work days versus off (yay for shift work!!! Not) there might be something there to look into.
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30 year migraine sufferer here…I live in Calgary, Alberta and we are one of the worst places in the world for headaches (we live at high altitude and have extreme pressure changes when our weather changes and our famous Chinook winds blow…hell on earth for migraines!) But on a good note, we never get turned away from ER and we have a specialty dept at one of our hospitals dedicated to migraines!
I was getting 15 or more a month (blech), so I started on Botox, and it’s a life changer! I still get migraines, but they are a lot fewer (mostly hormonal now) and easily calmed with OTC meds or if not only a single Relpax (my Triptan of choice!). I get Botox every3 months and insurance covers all but $25 (otherwise it would be about $800 per treatment). It’s about 34 injections, between my eyes, across my forehead, above my ears, across the top of my head, at the nape of my neck and across shoulders. Takes about 10 minutes and does not hurt at all!
I also take Topomax daily to help with the auras (mine are dizziness and spinning, not nice) and I’ve been able to go down to 50mg a day since starting Botox! I also take Relpax as my “OMG I have a migraine “ pill of choice…took a few different trials before I found the right one for me! Remember, triptans will only work on a true migraine! Rebound headache are easy to get into with OTC meds (like excedrin etc) as they only mask the headache and then it comes back and you get into a vicious cycle.,…most of us have probably been there! I personally didn’t find magnesium helped me for my weather related migraines but it did for hormonal related ones (Botox did not help the hormonal ones!). Oh and I also find cold ice packs over my eyes and on the back of my head help when I’m having a bad day!
Good luck at your appointment…I hope you are able to find some relief!
Our daughter had bad migraines for years. She tried many different drugs to just get through the day. A few gave her scary hallucinations. Thankfully Aimovig came along and she is down to a few migraines a month now. She has identified a few triggers (weatherfronts, tomatoes,red wine) but most triggers are unknown.
This article is likely behind the Washington Post paywall, but it is interesting, and some may have access
Sniips:
“If you think of a pressure cooker, it’s adding more steam to the pot,” said Akhil Chhatre, an assistant professor of physical medicine, rehabilitation and neurosurgery at the Johns Hopkins University School of Medicine. Chhatre added that he has seen a “dramatic uptick” in both new patients and people with a history of headache disorders who say they are suffering more.
At the Mayo Clinic in Scottsdale, Ariz., Amaal Starling, a headache specialist, said she has had to adjust treatment regimens for at least 50 percent of her patients who have had “significant worsening” of their symptoms.
My neuro was hesitant to try a beta blocker because I tend to have lower blood pressure, but eventually we did try it. It tanked my blood pressure so much I started getting extremely dizzy if I stood up quick and had no energy (I felt like I needed a nap during the day). We waited it out for three weeks to see if I adjusted but finally pulled me off of it because my resting heart rate was so low.
OP, migraines are hell. I’ve had them my entire life, and they got significantly worse during my final and most stressful year of grad school. Botox helped immensely for 2 years before it stopped working. Now I do monthly injections of Ajovy (a CGRP inhibitor - a very new type of migraine preventative). I’m also on Topamax and gabapentin, with Zomig as my triptan of choice for acute treatment. Things that did not work for me: propanol (beta blocker), zoloft, nortriptyline, and a nerve block of my head. But that does not mean they wouldn’t work for you!!
I cut coffee out of my life two years ago on the advice of my neuro. It sucked and the “withdrawal” gave me the worst migraine of my life and was managed with steroids (and I was drinking 1-2 cups a day, nothing excessive). Now I use caffeine to treat my migraines as needed, instead of relying on the caffeine as a daily necessity.
I find that change in routine triggers my migraines. So it may be for you, that your on again off again schedule just routinely triggers your migraines because it is change. I find that when I go back to work after a break or vacation I tend to feel terrible for a few days. I avoid alcohol (mostly) and try to keep my sleep on some kind of schedule (which I am not great about).
The biggest, most helpful part of managing my migraines was finding a neurologist who was in my corner, took my pain seriously, and specialized in migraines. I do a lot of my own research so that way when something is recommended or discussed I can be an active participant in the discussion about my health vesus just taking a pill bottle and hoping for the best. To be fair, this also made me terrified to try to Topamax because it can have some scary side effects, but you reach a point where you become willing to try anything.
Yes, when they put me on a 25 mg dose, the smallest pill they make, it hit me like a ton of bricks.
I kept falling asleep every time I sat down, was wiped out.
At the Dr, my blood pressure was so low, the first nurse that took it asked if I was ok, tried again, then called the head nurse and by then I was getting worried and bp started going back up.
Since it had helped right away with the arrhythmia, we tried half that dose and have been on it without any problems for 15 years now.
All I can say, any medication can be scary, you never know how any one will react to any of them.
Glad that you found a good doctor, sure helps to at least have confidence in them.
That is exactly how I felt…I was fighting not to take a nap at my desk. But absolutely I was glad to try it and rule it out. For migraines, my neuro told me the minimum therapeutic dose is generally 60mg, and wasn’t sure I could ever tolerate that.
Yes, the pharmacist assumed it was to lower bp, mine is already low anyway, but should have known by the dose it was not, but for arrhythmias, way too low dose for bp.
I didn’t know for migraines the dose needs to be higher also.
I think it helped with my migraines, but they were already starting to go away after menopause.
Cause and effect may have been blurred there.
Good to be aware of those particulars of different drugs for different purposes.
I suffered from migraines my whole life, at least one weekly, finally came to the realization I am gluten intolerant and when I went gluten free the migraines stopped. I feel like I have been given a new lease on life honestly.
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It’s validating, if also saddening, to read of all the other migraineurs’ experiences.
I’ve had friends who say Botox was a lifesaver. My vet used to get 22 migraine days every month and she said Aimovig has saved her sanity.
Topomax, for me, resulted in night terrors that were really awful. Now I take Risatriptan when they come on, which does help, though it doesn’t take it totally away.
Mine are brought on by any one or more of these: disrupted sleep, a lack of drinking water during the day, periods, too much salt, and - numero uno - weather pressure changes.
Things that help after the initial acute stage:
- sipping a real Coke
- some kettle style potato chips. I swear, the action of chewing really crunchy chips and the fat has some helpful quality.
- my husband to rub my inner forearms. This knowledge came to us from a friend, who’d been taught it by a Mexican curandera. (We live on the border.) Lo and behold, when I (and my friend) get migraines, it often results in funny little knots in the forearm. I had no idea this happened until my friend was treated by the curandera. So, try it?
- being the right temperature during the headache. This may mean a blanket or donning a sweatshirt or finding a cool spot.
I’ve been told that once menopause is past, I’ll have fewer headaches. I hope so. I will get a second wind headache the day after - not as bad, but a headache, plus I’m cognitively slower, hungover-feeling and generally low, emotionally and physically.
Hope you find some relief, OP!
Thank you everyone for your advice, encouragement, kind words, and personal experiences. I haven’t had any headaches since my last (posted) experience… however, I am chalking that up to the fact that on NYE, the heavens opened… and opened… and opened. It is cool, overcast, and raining here, and my head feels so much better.
However, I also feel that the double-dose of SSNRIs and the COQ10 tablets have also really contributed to me feeling a lot better. I did experience a period of really bad insomnia, probably from taking the tablets at night (Yeah don’t do that!!) and I dropped the magnesium due to having the taste and effectiveness of epsom salts (do. not. fart.)
I visited my chiropractor today and discussed my recent experiences with him. His suggestion was that it sounds like a low oxygenation issue (so to the poster who suggested oxygen - Thanks!!!).
I was also having a cuppa with my neighbours and bemoaning my insomnia and headaches, and they told me about Avjoy.
So I have some things to take back to my doctor to discuss.
Either that, or take up scuba diving! Apparently the combination of increased gravitational pressure and oxygen would make it the perfect sport for me…
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So for years my DH has had horrible migraines- can’t see, can’t function, throwing up, curled in a ball in a hot shower type migraines. He’s been to every specialist we could work through our insurance, tried a ton of meds, etc- nothing really worked. Then we found the CoQ10, B, Mag vitamin thing and tried that- it worked pretty well and reduced them a good bit for a while and then after doing it for months they came back a bit- maybe 2 a week? And he just kind of decided he had to just live with them.
This past September- we did a major diet change for both of us as part of a training/conditioning plan in hopes to start running trail ultras and maybe do an adventure race. Since cutting out all sugar and all grains- 100% not even honey or quinoa or anything- he is down to maybe 1 migraine a month and it’s not nearly as bad. I am so elated for him but angry too that no doctor we went to ever suggested diet change, not one. Just medicate this and medicate that.
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I have migraines also. Know most of my triggers, red wine, fetta cheese, to much caffeine, to much sleep, not enough sleep, barometric changes, etc. I am on daily doses of Amitriptyline (25mg - 1x day), verapamil (80mg - 2 x day) and Tokenedi xr (200mg 1x day). I also take Sumatriptan as a rescue med and use ice packs on my head to help with the pain. Chiro helps some, I’ve tried acupuncture, massage, vitamins, sea salt, pickle juice, and just about every other voodoo cure that you could try. But my current cocktail keeps them manageable to where I can work and function. Before I couldn’t function and was looking at trying to get disability. 
I’ve found that no two migraineurs are the same. But, a good doctor is priceless!
I was on Imitrex, but you had to take it when it first started or it would not work.
After one that lasted 11 days and I finally had to go to the Dr, they gave me a shot, told me to lay on a couch right there and sleep it off, then let me go home.
I wish I had asked them what that shot was, never found out, but it worked.
My triggers were barometric changes and hormones mostly.
A friend never found what his triggers were, but being hung over made them way worse, he could not even walk around when one hit then.
I’m in the same bucket with you all but mine have changed in the last 5 years.
I used to get Visual Migraines… my left eye would lose vision and/or I’d get a circle of blurry vision, almost like looking thru glass block with water running down it. Once that stopped, there’d be a crescent-shapped prismatic light flashing. I knew I had about 30 seconds after that stopped to down 2 Excedrin Migraine with a Coca-Cola or a Naratriptan to stop it.
Now that I’m in perimenopause, tho, that migraine version has all but disappeared. The only one I’ve had in 4 years was triggered by flashing strobe lights at a concert.
Now it’s the Cluster Migraines that do me in. I wake up with them, so everything I’ve been prescribed so far doesn’t touch it. They’re a guaranteed two-day headache. From the back of my neck, around to & behind the left eye and left temple. The temple spot feels like someone is driving a table leg into my head and the eye feels like there’s someone with a pitchfork stabbing it out from the inside. Nausea, some vertigo etc.
We just changed insurance at work, so I’ve got a Neuro consult coming up to see what’s new out there in the prescription med department that’ll work.
