***update in post*** s/o question for migraine sufferers

[pinkly]

Have you found anything that actually works? I’ve had migraines my entire adult life. Prior to that I had chronic non-migraine headaches. I’ve come across people who’ve said they’ve never had a headache and kind of hate them instantly, lol.

I’ve been a patient at a headache clinic for 15 years. We’ve never found an actual preventative that works. Several years ago we found a rescue med combo that did, but that has run its course. Now it seems that excedrin migraine works better that that does. However, I am taking it every single day as I wake up with a headache that will turn into a migraine if I don’t take something.

It’s turning me into a raging bitch, if I’m being honest.

Anyone have similar histories or advice?

UPDATE - So my doctor started me on emgality. I’m only about 10 days in. I HAVE had fewer headaches, which is great, but it’s too soon to judge, I think. And my doctor is a liar, lol. He said it wouldn’t hurt. Perhaps I’m a wimp. I DO hate needles. But he didn’t mention the holding it there for 10 seconds but, and I think that’s the worst part.

That said, I need a Sharps container. I am terrible and judging sizes, volumes, etc. can anyone recommend one that is big enough to hold a number of these injection pens?
Thanks!

[joy]

I’ve been on three or four different preventatives. They all worked to some degree. Let’s see... zonisamide (same as topomax), corgard, aimovig, and I have amitryptaline upstairs. Currently, I’m in 40 mg corgard.

Rescue med is 100 mg imitrex. I occassionally add motrin with the imitrex. I do sometimes still take excedrin migraine when Imitrex fails.

I tried mg supplements, increased hydration, less sugar... none mattered.

What supplement really matter for me? Iron. Phew. Praise iron supplements.

[cleo29]

I just take excedrin. If i can catch it at the beginning it can stop it in its tracks.

Have you been able to determine any triggers? For my hydration seems to be the big one.

Sorry, I do not have any real advice but I feel you. I started getting headaches frequently as a kid and they just never stopped.

[pinkly]

Iron supplements. Hmm. I have been shown to have low iron in the past. That’s a thought.

Hydration is a possibility as well.

I will try to pay more attention to both of those. I’ve never had much luck determining triggers because the headaches are just so damn frequent.

Thank you both for replying, and I’m sorry you suffer with it as well.

[pinkly]

I will say, the waking up with them is just that much worse. It’s so hard to get out of bed and go about my day when it starts out like that. Absolutely miserable.

[mortomo]

I've gotten them since I was about 9, so I understand migraine pain. I've been going to a neurologist for about 2 yrs now and have tried a lot of preventatives. Some worked but had undesirable side effects. Some worked and then stopped working. I got to the point 3 months ago where I had tried a lot from many categories so he suggested Botox. I just had my 2nd round injections on Friday. If I don't notice improvement in a month he said that it's likely not going to help me.

Blood pressure meds approved for migraines have been the most successful for me. I can't take abortives with triptans in them (Imitrex, etc) because I had a bad allergic reaction. I'm stuck with stuff that knocks me out. Over the counter pain meds do nothing for them.

I do find that taking Sudafed, Mucinex, a hot shower and a nap (in that order) will sometimes help. I add a cold pack over my eyes, nose and forehead too. My migraines are just about always behind my left eye and temple.

Good luck. I hope you find something that works.

[BicycleBride]

Not really.
IV DHE sort of works to break up a particularly bad stretch but only the every 8 hour over the course of three day protocol which means hospital admission. I am really sensitive to it and it tears me up. I get IV phenergan and Benadryl prior to beginning the dose and then the DHE over an hour and usually sublingual zofran towards the end.

Having a baby sort of helped; they aren’t as severe as they used to be.

[mortomo]

Jan 5, 2020 11:54:58 GMT -5 pinkly said:

I will say, the waking up with them is just that much worse. It’s so hard to get out of bed and go about my day when it starts out like that. Absolutely miserable.

That's for sure.  This is usually when mine start.  I wake up 3 or 4 am with one.

[pinkly]

Jan 5, 2020 12:09:19 GMT -5 BicycleBride said:

Not really.
IV DHE sort of works to break up a particularly bad stretch but only the every 8 hour over the course of three day protocol which means hospital admission. I am really sensitive to it and it tears me up. I get IV phenergan and Benadryl prior to beginning the dose and then the DHE over an hour and usually sublingual zofran towards the end.

Having a baby sort of helped; they aren’t as severe as they used to be.

I am so so sorry. I went to the ER twice but because I took my rescue meds twice in the same day both times and my body did not react well to it.

[namasteak]

I get a couple a month the week before/during my period. The only thing that takes the edge off is 2 excedrin and a cup of coffee but that makes me anxious so then I have to take something for that. To get it to go away I really need a quiet dark room for awhile but i solo parent a lot so that doesn’t happen often.

[Bernadine]

My mom has suffered with migraines for years. She gets Botox everything three months, and it has really cut back on them. She just tried to stretch it to four months, and started waking up with them every day as she approached the four month mark, so she’s going back to three months.

[brooke77]

I’ve had them since I was a kid. I had them so bad when I was in high school that I missed school pretty frequently. Mine are blinding and cause extreme nausea/vomiting. I first started a daily medication when I was 18. I was on beta blockers in increased doses until my mid-20s. Then I switched to Topamax, which I’m still on. I still get migraines about 4 times a month, which for me is amazing. I use Percocet for when they are really bad, which is maybe once every other month. I tried every other med (pill, injection, inhaler) with no results. I absolutely need to eat and stay hydrated. Reading in a car or public transportation (even on a phone - like scrolling IG) is an instant trigger.

I’m really sorry you are suffering. Are you working with a neurologist or just your PCP? Migraines are truly the worst.

@@
I was lucky and went over 2.5 years without meds while TTC/pregnant/nursing and my migraines were manageable with OTC meds.

[Nonny]

I haven't found anything that has eliminated them entirely.  I currently take 25 mg of Topamax (name brand, because the generics make my dry eyes worse - Topamax does too, but not as badly for some reason), and 200 mg of gabapentin as my daily preventatives (the gabapentin helps with my IBS too).  This combo has mostly removed my daily persistent headache.

I also use my NuvaRing continuously, because I get menstrual migraines when I'm on my period. (Although my body sucks and about every 3-4 months it insists on a period regardless).

I was on a low dose amitriptyline for awhile for a different pain, and it never impacted my migraines.

I also have a rescue med, I forget which one.  I don't use it very often though, only when I'm really desperate, because I feel like all it does it make me sort of but not really sleepy. But if I can sleep that does usually help relieve my migraine pain.

My best bets are to avoid my triggers - persistent low level irritating noises that I can't escape (this is why I hated my one neighbors and their outdoor music; and why I take the batteries out of my mom's ticking clocks when I stay at her house); certain smells (flowery, musky perfumes, cigarettes); and anything that will also trigger motion sickness (I can't read or look at my phone as a passenger in a car).

I'm "lucky" in that my migraines make me miserable, but they don't incapacitate me. 
But I have found that since I've been on the preventatives and my migraine days are fewer, I'm much more grouchy about it when I am suffering through one.

[SusanBAnthony]

I used to get migraines. They almost completely stopped after having kids. Like maybe 3 migraines in ten years.

I wonder why.

[pierogigirl]

My triggers are hydration and ? I am chronically anemic - I should see if an iron supplement would help. I take Imitrex (if that doesn't help, the only thing that works is throwing up and sleep). I am thinking about looking in to Botox - but I don't get them enough, I think.

You have my sympathies. Migraines suck.

[rt2008]

Last year my doctor prescribed me Maxalt and it was worked wonders for me when I get them. The year before that I was throwing up from migraines at work at least 2-3 times a month and it was really affecting my work and personal life. I have not tried a preventative but if I take a maxalt at first sign it one, it goes away in an hour or two. Much better than what I was experiencing before.

[lilypad1126]

I’m so sorry you are suffering. I have suffered with migraines since I was a kid, and my mom suffers with them too. About 2 years ago, they got so bad it was basically a daily occurrence.

I tried magnesium and B2 supplements. No go. I tried 100mg of Topomax. That worked for a while, but caused me to lose my appetite so badly that I lost too much weight. And then, about 3 months into my migraines came back. So I switched to amitriptalyne. I take 20mg every night and it’s amazing. I still have break through headaches that usually happen around my period. But those can be dealt with by popping a couple ibuprofen the second I wake up and then I’m good at least through the next 36 hours. And, I wake up with these headaches which is just the worst.

Excedrin never helped. No aspirin or Tylenol product has ever given me any relief. I do know that when I was trying to figure this out, my neurologist was worried about rebound headaches due to the frequency of needing ibuprofen. So I was miserable for a couple days while I “detoxed” from the ibuprofen and waited for the preventative med to kick in.

Migraines are miserable. I hope you are able to find something soon that gives you some relief.

[Eagles]

It sounds like you're experiencing both migraines and cluster headaches, and the latter are absolutely brutal. I'm so sorry.

I have 20-25 migraine days a month. Have you talked with your doctor about the new CGRP injectable preventatives? Aimovig worked better than Emgality for me, but I'm stuck going through some red tape to get back to the Aimovig.

My rescue combo is Relpax, a muscle relaxer, and Fioricet. I have both Phenergan and Zofran for nausea, and for some reason Zofran has shown to help short circuit a migraine. I literally carry a sequined makeup bag full of meds everywhere I go.

I make hydration a priority and absolutely notice when I haven't had enough water. Sleep is big too. Hormones. I could go on and on.

My one piece of advice is to start tracking everything. There's a free app called Migraine Buddy that works really well for this. Also, if you are having more than 15 headache days a month, you qualify for more intensive treatments like Botox and CGRP blockers.

[af1212]

I also go to a headache clinic where I’m seen by neurologists. I take duloxetine as my preventative and rizatriptan with compazine and naprosyn as my relief med.

It sounds like you are getting rebound headaches since they are daily. When that happens to me my neurologist gives me a steroid taper pack to get things back under control then we start fresh. Has yours suggested anything to reset? Another friend of mine had to go in for two days when hers get out of control and they reset her via iv meds.

I can’t take topomax due to some pretty serious side effects I had, and can’t take beta blockers due to low blood pressure. The duloxetine isn’t perfect but it’s doing ok for me at the moment. I tried amitriptyline as well but couldn’t get out of a constant drowsy state.

Good luck! If you’re in mid-Atlantic area feel free to pm me and we can chat docs.

[litebright]

I have had terrible headaches since I was a kid, worsening as I got older. I tried migraine meds during my 20s and even got my wisdom teeth pulled in part because of the possibility that they might be contributing to the headaches (they weren't, or at least getting them pulled didn't change anything). Meds didn't really do anything more for me than ibuprofen, so I generally treat with that and an ice pack. A few years ago, I had a stretch where I was woken up in the wee hours by a raging migraine, every night for three months. I would get it under control, feel okay during the day, and every night hope it wouldn't come back and it did. I thought I was going to lose my mind. I tried supplements, reducing alcohol and caffeine, etc. and saw no difference.

My doctor basically told me to try to break the cycle by spending an entire weekend with as little stimulation as possible, sleeping as much as I could, no screen time, etc., plus short-term meds. I don't recall which one specifically, but the headaches were back as soon as I came off of them. She gave me a choice then of starting a daily preventative med or trying acupuncture. I figured I didn't have anything to lose and tried the acupuncture, even though I was skeptical.

It was life-changing, and I am not exaggerating. I saw a reduction in frequency and intensity within a few days of treatment and am down to 1-2 headaches a month, usually around my period, and they are minor compared to what they were before. I wish I had been open to it years ago, because it made a huge difference in my quality of life. I started off going 2x weekly for a few weeks, then once weekly for a few more, then tapered to every other week, then every month. We moved cross-country and I delayed finding a new acupuncturist, and after about six months of no treatment they started ramping up again. I found a local acupuncturist but didn't have as good a result, so I tried a different one and they are back to being rare. Insurance doesn't cover it and I pay OOP, because I consider it necessary to function.

[TR]

I don’t get migraines, but have you considered a daith(sp?) piercing? They’ve been shown to help some people.

ETA: www.medicalnewstoday.com/articles/317637.php#Daith-piercing-and-migraines

[rooster222]

I started getting migraines after I had kids. I've tried a few preventatives and they made me feel awful until I found propranolol. It's been a game changer for me. There are a few side effects but it's very tolerable compared to the others I tried.

I also take Imitrex if I do happen to get a migraine. It works but I don't prefer to take it.

[cleo29]

Jan 5, 2020 11:54:58 GMT -5 pinkly said:

I will say, the waking up with them is just that much worse. It’s so hard to get out of bed and go about my day when it starts out like that. Absolutely miserable.

Oh I agree. Or you finally fall asleep and think it will be gone and then not long after waking it comes back. I did go through a period where I had unrelenting headaches for two weeks and it was my vision. So, not sure how your eyes are, but that can be worth checking into too.

[katyintx]

I’m sorry, I don’t have my advice on how to handle them because the only thing that worked for me was vomiting, meds, and sleep in complete blackness and silence, in that order. Like, if one didn’t happen, nothing would work.

But I wanted to suggest getting your allergies tested if you haven’t already. I found out I’m allergic to peanuts and since I’ve stopped eating peanut butter all the time (sad trombone cuz I love PB!) my migraines are pretty much gone. I always thought I knew my triggers, but I guess not... My neurologist didn’t suggest allergy testing, so I apologize if this is a repetitive and non-helpful suggestion.

I hope you get the answers you need though! I know how awful and debilitating my migraines could be, and it makes me sad so many people have them. 😔

[mellymel]

pinkly I saw where you said you have been waking up with headaches/migraines. I thought I would throw this out there. I used to wake with headaches and migraines all the time.
I was taking sumatriptan when I would get a migraine but it wouldn’t always help and I am limited by what I can take due to having early stage kidney disease. I started feeling very fatigued all the time and went to my PCP and he suggested a sleep study.

I did the sleep study and it turns out I have obstructive sleep apnea. Mine is only a mild/moderate level but it still meant I was stopping breathing 8 times per hour throughout the night and my oxygen saturation levels were dropping throughout the night due to the apneas. The lack of oxygen during the night was causing my headaches.

I got a CPAP and have been using it for a year now. I rarely ever get headaches anymore. You might want to check into a sleep study to get checked for sleep apnea if you haven’t already. I know it’s not the only driver of headaches and migraines but I never honestly made the connection before and it’s been life changing for me.

[mags]

Ive had them for 30 years. My mom had them, and 1 of my sisters used to have them as well.

I have tried everything under the sun to prevent them including botox. Nothing has worked. I have not trieD aimovig I guess that will be next. I suffer from anywhere form 10-20 a month Imitrex is my life saver. Relpax worked for me as well to get rid of them, but I prefer Imitrex. I take 50-100 mg depending on the headache. Sometimes I take advil with it.

I had a hysterectomy a few years ago and that took a few away each month, but not as much as I had hoped.

A hot hot shower sometimes gives me a little relief with some peppermint oil on my temples. Biofreeze om my neck also can help a tiny bit.

Laying down, napping, or sitting in a dark room does not help me.

I do have Imitrex injectable for really bad bad days, but sometimes I need to go to ER.

All of you sufferers certainly have my sympathy.

[Eagles]

Also, fellow sufferers - cluster headaches weren't even on my radar until I mentioned offhandedly that I was waking up frequently around 3 or 4 a.m. He asked some more questions and said "that's not migraine, that's cluster." Apparently the middle of the night onset is a hallmark, and worth asking about.

[Aquatica]

I used to have occular migraines and cut my screen time down and made sure to get regular eye check ups and update my glasses yearly.

Within the past year, I experienced horrible migraines suddenly onset by the fine dust/air pollution in South Korea. I would go to bed and wake up with a migraine, no relief, and it would last weeks at a time. My doctor tried multiple pills such as vasodialators, recuse pills, and finally I was given a shot that was like a muscle relaxer and sent for multiple tests with a neurologist.

I started Topiramate and haven't had an issue since. I get headaches every once in a while now.

[pinkly]

Jan 5, 2020 12:53:17 GMT -5 brooke77 said:

I’ve had them since I was a kid. I had them so bad when I was in high school that I missed school pretty frequently. Mine are blinding and cause extreme nausea/vomiting. I first started a daily medication when I was 18. I was on beta blockers in increased doses until my mid-20s. Then I switched to Topamax, which I’m still on. I still get migraines about 4 times a month, which for me is amazing. I use Percocet for when they are really bad, which is maybe once every other month. I tried every other med (pill, injection, inhaler) with no results. I absolutely need to eat and stay hydrated. Reading in a car or public transportation (even on a phone - like scrolling IG) is an instant trigger.

I’m really sorry you are suffering. Are you working with a neurologist or just your PCP? Migraines are truly the worst.

@@
I was lucky and went over 2.5 years without meds while TTC/pregnant/nursing and my migraines were manageable with OTC meds.

I saw a neurosurgeon really early on in this whole process. Had an MRI even. All they found was that I have less curve in my neck than normal.

I imagine some of the doctors at the clinic are neurologists. I really don’t know. I’ve been going there so long that I don’t think about that, I guess.

[pinkly]

Jan 5, 2020 15:00:11 GMT -5 Eagles said:

It sounds like you're experiencing both migraines and cluster headaches, and the latter are absolutely brutal. I'm so sorry.

I have 20-25 migraine days a month. Have you talked with your doctor about the new CGRP injectable preventatives? Aimovig worked better than Emgality for me, but I'm stuck going through some red tape to get back to the Aimovig.

My rescue combo is Relpax, a muscle relaxer, and Fioricet. I have both Phenergan and Zofran for nausea, and for some reason Zofran has shown to help short circuit a migraine. I literally carry a sequined makeup bag full of meds everywhere I go.

I make hydration a priority and absolutely notice when I haven't had enough water. Sleep is big too. Hormones. I could go on and on.

My one piece of advice is to start tracking everything. There's a free app called Migraine Buddy that works really well for this. Also, if you are having more than 15 headache days a month, you qualify for more intensive treatments like Botox and CGRP blockers.

We have not discussed the newer meds, but maybe it is time. I’ve heard of the Fiorocet as well, but that is one that hasn’t been prescribed.

Botox has been tossed around as an idea but I have terrible anxiety when it comes to needles. I may need to decide which is the lesser of two evils at this point though.