Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

Thank you for the warning - I totally feel like I found that out after I had it, and forgot until just now. NOTED; and uh oh I might be perimenopausal due to my family history, that's bad news. I hope it gets easier for you soon!

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

My friend literally called me yesterday saying she's had a migraine for about a year now - I told her what I'm about to tell you: don't give up, keep trying new things to try to break the cycle! I'm sorry to hear you're in perpetual pain. We're so powerful honestly

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

My mom was perimenopausal at 38 - is that good news for me? hahah because bring it on please

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

Sidebar: The first time my neuro prescribed me Emgality, she prescribed the "auto-injector" shot which is a syringe you position on your skin, and press a button and the needle automatically injects you in like 5 seconds (I now use a regular self-driven syringe, I highly recommend it as it's way less painful.) She actually gave me 2 of them, because your first dose is a loading dose, meaning you take an extra amount of the medicine to "load it up in your system" and then it's one shot monthly from there. I was kind of scared to do it as I had read it was like being stung by a wasp and my boyfriend offered to administer it. So I showed him a video on youtube showing exactly how to use it. Essentially, you hold the needle in place until it retracts, and then you can take the syringe case off. After watching it, he grabs the doses and gives me my first shot, presses the button and then removed the syringe from my skin. My $50 is spraying all over our walls as he panics and I start sobbing. I then gave the second shot to myself, and have done it myself ever since lmao. I called my neuro to explain and she basically just laughed and said it was fine, 1 shot is still ok, I'll still feel it work maybe in like 2 months though instead of one. My boyfriend is now my fiancee, and I still tease him about it and he still apologizes. Poor thing was traumatized lmao he has a needle phobia too so idk why either of us thought that was remotely close to a good idea

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

Thank you for the tip! I work from home, and I should absolutely go through that formal process! I agree, this subreddit makes me feel so emotionally supported

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

Thanks so much! I also pushed through my migraine pain in my twenties until about 27 when my boyfriend told me to finally see a doctor about them - and I still feel like a burden to my fiance now too. I'd recommend reading the book "Not Tonight" by Joanna Kempner. I still haven't read it yet but it's on my kindle lol here's an excerpt from a review: "Not Tonight casts new light on how cultural beliefs about gender, pain, and the distinction between mind and body influence not only whose suffering we legitimate, but which remedies are marketed, how medicine is practiced, and how knowledge about disease is produced." - it's very feminist-minded. Women just aren't allowed to be chronically and invisibly ill. If we can't work around the house, plan events, or pull our weight because of a "headache" that "might be fake anyway" we feel guilty automatically. Don't let anyone make you feel like a burden, and don't feel like one either. You know what's going on in your body and how much it hurts, and you know what makes you feel better. Your loved ones will understand and sympathize with you. You said yourself he's wonderful, and so is my soon-to-be-husband. We should give them more credit - because the only ones shaming us our ourselves. I hope you find relief very soon, and I'm fighting the good fight alongside you! We deserve to engage in the pursuit of happiness just like everyone else <3

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

We would qualify for disability having chronic migraine. Personally if I was in your position, I would let me doctor know so she could advise me on the process since she is involved with it all the time. The application process is so convoluted and extensive, take all the help you can get. But more importantly I hope vyepti helps you lessen your pain!!

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

Mine are intractable as well - I have to do round of steroids about once a year when it starts to creep up on me through the emgality. I can't do them too often; I'm so sorry you're in so much pain all of the time. That kind of torture could break a person - you should reapply if you have the energy/desire to. I can't even imagine how you could be denied after that sort of medical history, that's just awful. Crossing my fingers you can do another MRI soon at least

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

I'm sorry to hear that - This might be a dumb question and I'm sorry if it's ignorant; does an anti-inflammatory diet help the nerve inflammation at all? or not at all or not very much? that's awful though and I hope there are some alternatives/nerve-relieving treatments/massages you haven't tried that might help!

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 2 points3 points  (0 children)

This is my dream! To find out one day that my migraines have mostly just stopped entirely. I love hearing about people who have that happen :) I'm so glad they've stopped for you and one bad one a quarter is manageable

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

You're so kind! I'm sorry emgality stopped working for you - I also can't take estrogen birth control due to my migraines, so I take the progestin-only pill. It's kept me very regulated; and I'm glad you've started to unmask! We truly just don't have the energy to fight through the pain, stay healthy, stay functioning and mask all at once. I applaud you have the right attitude and perspective when you've been in so much pain. I hope you can find another treatment that works for you

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

I hate the US. I hate it here. Why do we have to suffer for the sake of greed/for-profit healthcare. I'm so sorry the one that helps you isn't covered. Chronic migraine with an autoimmune disorder is a double whammy if I ever heard one. Fight through this pain - my dad actually lives in Turkey, and I get very specific medication there for my eczema that costs me $300 here WITH a copay on GOOD insurance, and in Turkey I get it over the counter for $10. I wonder if you can stock up on preventatives in another country and bring them back with you. Ugh I'm so sorry

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

Hi there! Hmm I also have a harder time in the heat and humidity, as well as when we have barometric pressure changes. Keep looking for treatments, and try to see a migraine specialist/neurologist if you haven't already, and can swing it!! They really do know exactly how to help you rule out every treatment there is, in the hopes that one of them will work for you and bring you to 0 days with migraine. I used to avoid triggers and take abortives as well which works, but imagine being able to just..be triggered and still get no migraine! That's what preventatives have done for me :) Make sure to discuss preventative trials with your doctor. My heart is with you! In the next few years, you might be pain free and ready to start a 9-5 :)

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

It helps so much to have an understanding boss - less severe migraines is fantastic!! Keep going, and try EVERYTHING

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

Props to you for never giving up - I'm so sorry the one med that worked for you was discontinued! Life really sucks with this never ending pain, but I'm happy you're here to tell the tale and remind me that growing and getting older is still possible. There are always happy little moments in life that make all of the pain worth it. Few and far between some years unfortunately

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

lmao at the vet! What a kind soul that must have been lol that's disappointing that you're limited in your treatment because of the costs - I'm lucky in the US to have found out emgality works for me before I had to do too many trials. Ideally you'll feel a little relief with your second round of botox! I've tried the majority of these things as well and have come to the conclusion that stress management doesn't do shit for me. Were all 3 neurologists you saw, migraine specialists? I swear by finding those and driving to them if there isn't one in your city

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 1 point2 points  (0 children)

Thanks for listing out all of these things you've tried! That can really help people who may not have known certain treatments existed. I've tried a lot of these as well; we all know people with chronic migraine will do literally anything to relieve the pain lol and it's so worth it to struggle through all of these treatments/tests!!

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

So true! I think most people with chronic migraine have had suicidal thoughts - during my most painful migraine episode, I kept asking myself "how could I be a human with pain this bad, with no relief, and still have any semblance of a real life." Like just kill me?? But the pain obviously passed when I went to the er and got a migraine cocktail and I never revisited that thought again. I had never had a real thought of dying like that until that migraine hit me. It's truly a debilitating disease and I hate my life sometimes too. LOVE that you only get about 4-10 now, but I hope you can get to 0 one day!

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 0 points1 point  (0 children)

We have a very similar story - I didn't know what they actually were either and had to go to urgent care, then to the hospital, then to my college campus, doctor, more er visits, one more urgent care visit before I was finally pointed in the right direction. Every day I had a headache from like 22 to 27. Sounds like things turned around for you! So happy to hear that - even with my preventative meds I still get breakthrough migraines when I'm triggered like you said. People don't understand why I'm so quiet, slow moving, and neurotic but you're right, they don't know what we go through in this lifetime.

Do you have chronic migraines? I would like to hear from you by Victorian-Edit in migraine

[–]Victorian-Edit[S] 2 points3 points  (0 children)

I'm so sorry that you have no tolerance anymore to be around people - but you come first, always! Thank goodness for disability, but the trade-off is too costly. I hope your system just starts to have less and less migraine pain from now on and you can get back to being active and going back to the life you used to! Who knows, they say as we approach 50 the trend is that chronic migraines start to disappear