Anyone else suffer from migraines?
Replies
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stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
Botox has been a game changer for me! Good luck with the approval process.
There's a new monthly at home subcutaneous injectable that has just been released that my neuro said has shown great promise. I'm hoping to find out on my next visit if my insurance will pay for that.2 -
leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.11 -
I have chronic daily migraines. I've had them since I was 10. When I was in my 20s, the hormonal part of my migraines was horrible. Two weeks out of every month I was suffering with hormonal migraines. I started taking the Depo Provera shot to stop those, and that was a miracle. My headaches were actually manageable after that, but when I was 30 they became daily and I have not been able to manage them since. I'm on 5 preventative medications, I've tried botox, and most recently I've just tried the new medication Aimovig with no success.
What gets me through my days:
Excedrin/abortives/caffeine for the headache
Thorazine for the nausea
cervical heating pad for my neck
ice packs for my head
muscle relaxers
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Just for anyone who is going to talk to their doctor about the new migraine drugs, there are 3 CGRP drugs that were approved this year. Aimovig, Ajovy, and Emgality. All three can be monthly injections, but you can get Ajovy as a quartly injection. Also, Aimovig and Emgality are subq injectors but Ajovy is just a prefilled syringe.0
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When I got them, Excedrin or some caffeine and aspirin were the only things that helped.
They stopped about a year before I went into full menopause and have not had one in 10 years (yet another reason to rejoice that I finally reached menopause)1 -
GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I completely agree they are not always completely debilitating. I managed to only miss 2 days of work during my 2 week migraine earlier this month. I went from experiencing zero issues with the botox to knocking me on my rear. I also get stroke-like symptoms like @apullum and not allowed any BC or triptans (vision impairment, can't speak clearly, loss of words, talking "funny"). I do take the beta blockers daily still as well.
The insurance definitely does NOT cover it right now for me. I got 2 free months from the maker and they do have programs to help pay for the first year while they get insurance sorted out. I took one injections a couple of weeks ago and the next in a couple of weeks. I would be happy to report how/if this works out for me.
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i get cluster head aches and migraines and are usually preceded by an aura of either smelling burning toast or having tingly finger tips. if i pay attention to the aura and get to pills b4 the pain starts, that usually makes them less worse. you should also get your eyes checked with the special tests that take pictures of the back of your eyes (an OCT). i had one done (not covered by OHIP here in canada so i had to pay for it) and they found increased pressure in my brain that was pressing on my ocular nerves and causing irrepairable blindness in both eyes. this is known as PCT or a pseudo brain tumor and is usually found in obese women. Once i got that under control, (by losing a ton of weight) my headaches have pretty much vanished. i rarely get them anymore.0
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GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I take it you were disagreeing with what I said.cmriverside wrote: »Thank you to everyone posting in this thread.
Anyone who "thinks" they have migraines should definitely get a diagnosis. I suffered with them for two decades until I went through menopause. For me they were completely disabling, I couldn't even get out of bed unless it was to throw up.
I also had those daily undercurrent headaches. I was diagnosed with two different things - cluster headaches and migraines. The migraines knocked me out of play for the duration. The cluster headaches, brought on by stress and muscle tension were with me daily and I could still go to work, school, do housework, function on OTC pain meds.
I guess it's partly that - like you said - there's a range, and partly that you misinterpreted my post. My migraines would not let me do anything other than lie down in a dark quiet room and get up to throw up.
It's just that over 20 years of people saying they had a migraine and then going on about their lives, I didn't understand how that could be possible since the pain was so bad I was hugging the toilet. There ARE other types of headaches, my post just stated, "Get a diagnosis."
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I get barometric pressure related migraines (usually a rapid drop in pressure). I have yet to need medical attention for them, as I've figured out pretty well how to manage them on my own. I am NOT heading to the gym with one though!
For mine, they have had me sick enough to leave work - usually the nausea is what kills me in that regard. I don't mess around with the pain - as soon as I feel a headache coming on, I take some tylenol. This seems to work pretty well as long as I take it soon enough and keeps the pain manageable. I can still suffer from the other symptoms, however, such as light sensitivity and nausea. A sleep aid containing doxylamine succinate and tylenol has kept even my worst ones from needing medical attention - but have definitely still left me unable to function normally sometimes. That, and that sleep aid knocks me out, so sleeping it off is pretty much the only option at that point.0 -
cmriverside wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I take it you were disagreeing with what I said.cmriverside wrote: »Thank you to everyone posting in this thread.
Anyone who "thinks" they have migraines should definitely get a diagnosis. I suffered with them for two decades until I went through menopause. For me they were completely disabling, I couldn't even get out of bed unless it was to throw up.
I also had those daily undercurrent headaches. I was diagnosed with two different things - cluster headaches and migraines. The migraines knocked me out of play for the duration. The cluster headaches, brought on by stress and muscle tension were with me daily and I could still go to work, school, do housework, function on OTC pain meds.
I guess it's partly that - like you said - there's a range, and partly that you misinterpreted my post. My migraines would not let me do anything other than lie down in a dark quiet room and get up to throw up.
It's just that over 20 years of people saying they had a migraine and then going on about their lives, I didn't understand how that could be possible since the pain was so bad I was hugging the toilet. There ARE other types of headaches, my post just stated, "Get a diagnosis."
I'm wondering how you were able to function with a cluster headache, considering on this "range" on pain, the clusters are worse than migraines. Because I was diagnosed with both. I haven't had one in years, thank god. But those are also known as suicide headaches because they are so painful, people have committed suicide during an attack. And there is no pain scale for a cluster like there is for a migraine. A cluster is a straight 15.4 -
I can barely walk when I have one so I don't go to the gym but then again I can't eat either.
Since it makes me throw up I have sugar the next day. Watermelon, sorbet, ginger ale are the best.
Mine are hormonal and much better and less frequent since being on the pill but for some people this makes them worse. Luckily mine only last a day or two.0 -
leonadixon wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I completely agree they are not always completely debilitating. I managed to only miss 2 days of work during my 2 week migraine earlier this month. I went from experiencing zero issues with the botox to knocking me on my rear. I also get stroke-like symptoms like @apullum and not allowed any BC or triptans (vision impairment, can't speak clearly, loss of words, talking "funny"). I do take the beta blockers daily still as well.
The insurance definitely does NOT cover it right now for me. I got 2 free months from the maker and they do have programs to help pay for the first year while they get insurance sorted out. I took one injections a couple of weeks ago and the next in a couple of weeks. I would be happy to report how/if this works out for me.
I'm glad the beta blockers help for you. My neurologist was not convinced that they were doing anything for me, so after I got off the birth control pill and the migraines stopped, I also stopped the beta blocker. In my case, it seemed like he kept me on it just because I couldn't take anything else. And because I was obese at the time, he hinted that I should stay on it to keep my blood pressure down...even though my blood pressure had never been high
If you're interested in hormonal contraception, you may be able to use progestin-only pills (minipill/POP), the implant, or the hormonal IUD safely, since those don't contain estrogen. There are also newer studies suggesting that modern combination estrogen-progesterone pills are so low dose that they may not be a stroke risk for migraine with aura, and may even be beneficial for preventing some people's migraines (https://onlinelibrary.wiley.com/doi/full/10.1111/head.12960). That wasn't the case for me, but it's worth checking to see what your neurologist thinks. In my case, I'm super happy with my IUD and my near lack of migraines.0 -
leonadixon wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I completely agree they are not always completely debilitating. I managed to only miss 2 days of work during my 2 week migraine earlier this month. I went from experiencing zero issues with the botox to knocking me on my rear. I also get stroke-like symptoms like @apullum and not allowed any BC or triptans (vision impairment, can't speak clearly, loss of words, talking "funny"). I do take the beta blockers daily still as well.
The insurance definitely does NOT cover it right now for me. I got 2 free months from the maker and they do have programs to help pay for the first year while they get insurance sorted out. I took one injections a couple of weeks ago and the next in a couple of weeks. I would be happy to report how/if this works out for me.
I'm glad the beta blockers help for you. My neurologist was not convinced that they were doing anything for me, so after I got off the birth control pill and the migraines stopped, I also stopped the beta blocker. In my case, it seemed like he kept me on it just because I couldn't take anything else. And because I was obese at the time, he hinted that I should stay on it to keep my blood pressure down...even though my blood pressure had never been high
If you're interested in hormonal contraception, you may be able to use progestin-only pills (minipill/POP), the implant, or the hormonal IUD safely, since those don't contain estrogen. There are also newer studies suggesting that modern combination estrogen-progesterone pills are so low dose that they may not be a stroke risk for migraine with aura, and may even be beneficial for preventing some people's migraines (https://onlinelibrary.wiley.com/doi/full/10.1111/head.12960). That wasn't the case for me, but it's worth checking to see what your neurologist thinks. In my case, I'm super happy with my IUD and my near lack of migraines.
I am delighted to report that I no longer "need" it! I had a partial hysterectomy several years ago. I still have my ovaries and those issues were unrelated. My doctor did have a minor hope that the migraines would lessen with the hysterectomy, but they didn't. I am not unconvinced that when I lose more weight, they will be less frequent and not as bad. They have gotten much worse over the past few years when I put on a bunch of "happy" weight (newlywed). I have had a variety of health issues and I am hoping weight loss will be my magic cure for everything (a girl can hope).1 -
cmriverside wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I take it you were disagreeing with what I said.cmriverside wrote: »Thank you to everyone posting in this thread.
Anyone who "thinks" they have migraines should definitely get a diagnosis. I suffered with them for two decades until I went through menopause. For me they were completely disabling, I couldn't even get out of bed unless it was to throw up.
I also had those daily undercurrent headaches. I was diagnosed with two different things - cluster headaches and migraines. The migraines knocked me out of play for the duration. The cluster headaches, brought on by stress and muscle tension were with me daily and I could still go to work, school, do housework, function on OTC pain meds.
I guess it's partly that - like you said - there's a range, and partly that you misinterpreted my post. My migraines would not let me do anything other than lie down in a dark quiet room and get up to throw up.
It's just that over 20 years of people saying they had a migraine and then going on about their lives, I didn't understand how that could be possible since the pain was so bad I was hugging the toilet. There ARE other types of headaches, my post just stated, "Get a diagnosis."
No, I wasn't taking issue with you.3 -
YvetteK2015 wrote: »cmriverside wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I take it you were disagreeing with what I said.cmriverside wrote: »Thank you to everyone posting in this thread.
Anyone who "thinks" they have migraines should definitely get a diagnosis. I suffered with them for two decades until I went through menopause. For me they were completely disabling, I couldn't even get out of bed unless it was to throw up.
I also had those daily undercurrent headaches. I was diagnosed with two different things - cluster headaches and migraines. The migraines knocked me out of play for the duration. The cluster headaches, brought on by stress and muscle tension were with me daily and I could still go to work, school, do housework, function on OTC pain meds.
I guess it's partly that - like you said - there's a range, and partly that you misinterpreted my post. My migraines would not let me do anything other than lie down in a dark quiet room and get up to throw up.
It's just that over 20 years of people saying they had a migraine and then going on about their lives, I didn't understand how that could be possible since the pain was so bad I was hugging the toilet. There ARE other types of headaches, my post just stated, "Get a diagnosis."
I'm wondering how you were able to function with a cluster headache, considering on this "range" on pain, the clusters are worse than migraines. Because I was diagnosed with both. I haven't had one in years, thank god. But those are also known as suicide headaches because they are so painful, people have committed suicide during an attack. And there is no pain scale for a cluster like there is for a migraine. A cluster is a straight 15.
Since there are dozens of different types of headaches, I don't think arguing about pain levels and duration and diagnoses is really something I care to get into.
It was weird when I got some headaches - usually the exercise induced ones - my entire left side of my head would be red, and the other side normal color; like there was a painted line down the middle of my face. I also got sinus headaches, barometric headaches, food sensitivity headaches, hormone-induced ones..
I mean we could go on and on. We're all different, yeah?1 -
cmriverside wrote: »YvetteK2015 wrote: »cmriverside wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I take it you were disagreeing with what I said.cmriverside wrote: »Thank you to everyone posting in this thread.
Anyone who "thinks" they have migraines should definitely get a diagnosis. I suffered with them for two decades until I went through menopause. For me they were completely disabling, I couldn't even get out of bed unless it was to throw up.
I also had those daily undercurrent headaches. I was diagnosed with two different things - cluster headaches and migraines. The migraines knocked me out of play for the duration. The cluster headaches, brought on by stress and muscle tension were with me daily and I could still go to work, school, do housework, function on OTC pain meds.
I guess it's partly that - like you said - there's a range, and partly that you misinterpreted my post. My migraines would not let me do anything other than lie down in a dark quiet room and get up to throw up.
It's just that over 20 years of people saying they had a migraine and then going on about their lives, I didn't understand how that could be possible since the pain was so bad I was hugging the toilet. There ARE other types of headaches, my post just stated, "Get a diagnosis."
I'm wondering how you were able to function with a cluster headache, considering on this "range" on pain, the clusters are worse than migraines. Because I was diagnosed with both. I haven't had one in years, thank god. But those are also known as suicide headaches because they are so painful, people have committed suicide during an attack. And there is no pain scale for a cluster like there is for a migraine. A cluster is a straight 15.
Since there are dozens of different types of headaches, I don't think arguing about pain levels and duration and diagnoses is really something I care to get into.
It was weird when I got some headaches - usually the exercise induced ones - my entire left side of my head would be red, and the other side normal color; like there was a painted line down the middle of my face. I also got sinus headaches, barometric headaches, food sensitivity headaches, hormone-induced ones..
I mean we could go on and on. We're all different, yeah?
Yeah, but I just never heard anyone who had cluster headaches every say they functioned daily with them, let alone functioned at all with them. And that is a very, very specific type of headache. So that just caught my attention when you said that.0 -
leonadixon wrote: »leonadixon wrote: »GottaBurnEmAll wrote: »leonadixon wrote: »stephj1216 wrote: »Thank you everyone! I saw my neurologist yesterday and we decided that my current regimen was not working so we switched it up a bit. She recommended botox as soon as insurance approves it now that I have failed 2 different preventative medications.
I feel much better than I did 2 nights ago but still having some postdrome headache which should go away soon.
The botox has been amazing for me this past year. Unfortunately, it's been losing its efficacy each time I get the next injection. It wore off 6 weeks early this time (I have just gotten over a 2 week long migraine and had to be treated with prednisone to break it). We are now going to try the brand new Aimovig which is supposed to be the first FDA approved preventative for migraine. I hope you get them under control! They are so debilitating!
Yeah, I'm starting to have it wear off too. My neuro is looking to switch me over on this next visit.
Regarding people saying "if it's not debilitating, it's not a migraine"... I take issue with that, and my neurologist (who is staff at a headache research center) would as well. I still get the debilitating kind, but it's important to remember that migraine is a systemic disease with a host of symptoms. Headache is only one of them. And the severity of the headache can vary in people who have migraine disease whenever they have a migraine.
Even with botox, I still have a daily low-level headache. I am never entirely pain free. I also always have mild nausea. The meds I'm on (tricyclic, anticonvulslant, and an anti-emetic - I don't tolerate beta blockers well) help to keep me at a manageable level most days. I can function.
Until something triggers a bad one. I don't tolerate triptans (they close my throat), so I'm on old school DHE as a rescue med.
Anyway, that daily low-level throbbing headache is part and parcel of my migraine disease, but it's not a full-blown migraine where I need to pull out all the stops. But it's still a migraine.
I completely agree they are not always completely debilitating. I managed to only miss 2 days of work during my 2 week migraine earlier this month. I went from experiencing zero issues with the botox to knocking me on my rear. I also get stroke-like symptoms like @apullum and not allowed any BC or triptans (vision impairment, can't speak clearly, loss of words, talking "funny"). I do take the beta blockers daily still as well.
The insurance definitely does NOT cover it right now for me. I got 2 free months from the maker and they do have programs to help pay for the first year while they get insurance sorted out. I took one injections a couple of weeks ago and the next in a couple of weeks. I would be happy to report how/if this works out for me.
I'm glad the beta blockers help for you. My neurologist was not convinced that they were doing anything for me, so after I got off the birth control pill and the migraines stopped, I also stopped the beta blocker. In my case, it seemed like he kept me on it just because I couldn't take anything else. And because I was obese at the time, he hinted that I should stay on it to keep my blood pressure down...even though my blood pressure had never been high
If you're interested in hormonal contraception, you may be able to use progestin-only pills (minipill/POP), the implant, or the hormonal IUD safely, since those don't contain estrogen. There are also newer studies suggesting that modern combination estrogen-progesterone pills are so low dose that they may not be a stroke risk for migraine with aura, and may even be beneficial for preventing some people's migraines (https://onlinelibrary.wiley.com/doi/full/10.1111/head.12960). That wasn't the case for me, but it's worth checking to see what your neurologist thinks. In my case, I'm super happy with my IUD and my near lack of migraines.
I am delighted to report that I no longer "need" it! I had a partial hysterectomy several years ago. I still have my ovaries and those issues were unrelated. My doctor did have a minor hope that the migraines would lessen with the hysterectomy, but they didn't. I am not unconvinced that when I lose more weight, they will be less frequent and not as bad. They have gotten much worse over the past few years when I put on a bunch of "happy" weight (newlywed). I have had a variety of health issues and I am hoping weight loss will be my magic cure for everything (a girl can hope).
It’s hard to say whether weight loss will help, but I really hope so. It did help a lot of my medical problems. I was able to stop all of my prescription medications when I got about halfway to my goal.1 -
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The frequency of my migraines dropped markedly in my 50's but I had severe migraines from early teens until then with worst time in my late 30's and early 40's. Stress, irregular and insufficient sleep were big factors at that time.
Plenty of them defeated my meds especially if they came on overnight while I slept, I had a very short window from onset in which to get my meds onboard and absorbed before my stomach went into stasis. If not caught early it was a darkened room and a sick bucket for company.
At my worst I was running 4 migraines a week and could only take meds for 3. Then I did use exercise to break the cycle, basically I would exercise (cardio) until the point of really quite exquisite pain which then seemed to force the blood vessels in my neck and head to relax. No I wouldn't advise anyone to do it as it was brutal but I was desperate and would accept short term very extreme pain over long term severe pain and no life at all.
I really don't miss those days!
A good Doctor and neurologist helped enormously as I tried many drug regimes before finding two that worked best for me, pizotifen as a preventative and migril for the acute attacks. The imigran family did nothing for me.
The drug's effectiveness did drop off over time though.
i do share the frustration of people confusing a simple headache with a migraine. I used to describe mine as feeling like a red hot spike being driven through the base of my skull and emerging through one eye. Not fun.4 -
Yes and exertion and exercise triggers them. Luckily i usually only get them once a month. They are hormonal. I take medicine when i have to.-1
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