How do people deal with Migraine hell and making others realise how disabling they are. I have suffered now since starting my period as a teen. I am now early 40’s and still suffer.
I was so active growing up and so hard working. I was always doing something. I found as time went on, I couldn’t work, how could I let down every every week. Some thought I was lying to get out of work. At times i remember vomiting into something so employers didn’t know and id get sacked. Running to the toilet in pain, vomiting. I hid so much because I have always been so judged.
Being stood over and yelled at by my own mum as a teen to get out of bed and get up because she didn’t believe I was in so much pain.yelling at me to get to work. I have lived a hell for 28 years! Being put down by others, calling me a dole bludger, telling me I’m lazy.
I hear people talking about others saying he / she doesn’t even work. I wonder how they can say that when they don’t know their story or what they struggle with daily and what are they thinking of me.
I would love nothing more than to work, I miss it so much, I cry weekly dealing with the pain and being lonely and not being able to follow my dreams. It hurts so much. I wake up each day praying that my head Won’t hurt today. At night I hate going to sleep because I know the pain too well of waking up with migraines.
This past month I have had 6-8 plus he days after each attack, it takes me to recover.
When I tell people I have a migraine, they change the subject like they don’t want to hear it or not again.
I hear people say to my husband often, hasn’t she got a job yet.? About time she got a job. When will she get a job. She’s spending your money. This hurts me so much. The pain I’m feeling some days with my migraines, a Bullet to my head would be less painful.
I’m so depressed and exhausted. This is my life and no one ever understands how much pain I am in weekly at times daily. I drive my kids to activities, taking a Pillow with me, laying in the car while I wait.. I drive and have to pull over and vomit.
This all over 28 years is taking a toll. I just want to work and be normal. I want those who judge me, to feel a migraine and see what I live with. It’s hell.
21 Replies
That sounds absolutely awful I’m so sorry 😞
I’m sorry, it sounds horrendous. I can relate to peoples stupidity in regards to illness and disability. I’ve actually had people say they WISHED they had my sons severe disability so they could stay in bed all day 🤬
That is terrible. Who could such say a thing. Your poor son.
There are things you can do for migraines. I used to get terrible ones but havent in 20 years. Still jump at the very first cues though and get on top of it.
Migraines are torturous, I'm so sorry you've been dealing with them for 28 years!
My worst one was when my son was a merely days old (I put it down to hormones and sleep deprivation), I was vomiting, seeing stars and in excruciating pain for at least 10 days. That was 13 years ago and to this day even a minor stress head ache strikes the fear of God into me in case I end up that incapacitated again. I do still get an occasional migraine but I can usually take some drugs and sleep it off, so people like you who suffer severely get my most sincerest sympathy.
I see you and I know how much this impacts so many aspects of your life.
I also can help but eyeroll when someone says they have a migraine when they mean they have a headache, I think that's why some people don't get how debilitating migraines are because they think it's just a headache and they can't understand why you don't just pop a panadol and get on with it.
I'm sure you've probably heard or even tried this but my aunt (who's also severely affected by migraines) has had a lot of improvement by having botox treatments. Her quality of life has increased so much!
I wish you all the best, I really hope there's something in your future that helps you get some relief.
Thank you. I needed to read this. You are so right and It’s nice to know some people understand.I’m glad that nasty 10 day one went for you. It’s a pain that you will never forget.
Fellow sufferer here. Also since teens. Also used to push through, doing the same as you. They became unbearable after my first child was born. I couldn't plan anything or function. Mostly people (including family) just ignored me when I said I had a migraine, like I was being dramatic. Luckily I had a boss who also suffered.
There are new, effective treatments. I saw a pain management specialist who had many treatment options. So please see your GP & demand help. It won't cure them, but most can be managed to at least some degree.
Thank you, it’s nice to hear from people who understand. I will get a referral next time I go. No Dr has ever recommend a pain management specialist to me. I never thought of it until I have read these responses.
I don't know if it's a normal thing. My GP was out of options so gave it a go. Some of the treatments were not fun.
In the end no treatment worked, but a controlled medication, which GPs can now prescribe, was given. There are options. I still struggle but it's not anywhere near as bad. A vomiting, incapacitating migraine is maybe twice a year.
My sister asked to be referred to a neurologist who suggested Botox. Botox helped minimise. She also realised how her menstrual cycle was also related so was able to convince a gyno to remove her ovaries so she’d start menopause. It’s been much better for her since. She still gets Botox, doesn’t drink red wine, and limits bright lights and screen time. But all added up to improving her ability function.
Botox has to be done at regular intervals (usually neck and forehead).
I have wondered if having my ovaries removed would help. I would do anything to stop this pain. They keep telling me take nurofen for 3 days before after my period. Even when they know I can’t take it due gut issues picked up in an endoscopy. One min they are telling me I can’t touch any anti inflammatories and the next they are writing me scripts for them also😩
What does your GP recommend? Asking because there are some great treatments out there. I suffer from migraines, especially bad ones after my absence seizures. Don't laugh, but Botox actually really helps. Have a chat with your GP or get referral to pain management clinic.
Thank you. No one has ever suggested this until I posted on here.I will get a referral. GP’S fob me off with a script because I am a long term sufferer, they aren’t concerned and don’t understand how much pain I am in.
My uncle would get debilitating migraines. He would be light sensitive and vomiting and in bed, for days sometimes. When his son reached early teens, he got the same mugraines his dad did. So my aunt and uncle researched and tried a lot of things and got tested for all sorts. Turned out that they had a sensitivity to wheat. They cut wheat out of their diet and they rarely get migraines now. Who woulda thought. This was a good 20 years ago now.
I'm sorry you are going through this,but like others have suggested, go to your gp and demand more from them! Maybe look online for a migraine specialist and do some research yourself into reasons migraines happen, tried and tested things that work etc. All the best x
I’ve been getting hormonal migraines for about 10 years now. Wasn’t so bad while I was on the pill because I could skip periods therefore skipping the resulting migraines. Made the decision to go off the pill at 35 due a slightly higher than average risk of stroke. Every period without fail I would get multiple migraines in the lead up to my period starting and another at the end. A few months ago I was at the doctor wondering if I was peri menopausal, and was sent for blood tests to make sure it wasn’t something else causing the symptoms. The only thing that came back of concern was my sugar levels were a bit high. My doctor recommended I start on a low carb/keto type diet. Since changing my diet my migraines have eased to the point that I didn’t get a migraine at all with my last period. Plus the other symptoms have eased as well. I still need to monitor my chocolate and water intake as too much chocolate and dehydration are still triggers for me (and have been since I started getting migraines 20 years ago), but I’m hoping the change in diet will stop future hormonal migraines.
I am the one who posted. I also get them before my period, after my period and mid month that is related to that, I can pin point. I have always had to stay on the mini pill to help control it. If i am not on it they are worse. I found magnesium supplements do help a little. So many things set my migraines off so the menstural migraines are the normal for me. It’s things like walking past perfume in shops or someone wearing perfume bang My head starts to ache and next thing I have a massive migraine and vomiting. I avoid perfume and washing powder at shops. I’ve walked down the washing powder aisle at the shops and it’s set of a migraine. Change of weather can set mine off . I have been cooking dinner some nights and the heat and steam from standing over the stove sets it off. There is a whole bunch of things that set it off and I do believe food is a big one especially wheat & sugar. I am now on a strict diet due to other gut issues going on but I hope it helps 😩 glad your have found some relief and I hope it stays that way for you.
Thank you so much for your reply. This is so interesting as I have had gut issues for the past 3 years and psoriasis since around same time as my periods started as a teen. I’ve been in and out of ER with gut issues and migraines. I have had colonoscopy, endoscopy you name it. They come back with some results that was treated but nothing has explained why I get this pain and what caused the issues that they found. They initially thought I had chrohns. I did too and still think there is a possibility.Celiac was negative. One thing all the drs and specialists have said is they believe i have a gluten intolerance causing me so much pain, joint pain and neuropathy. I am in the middle of having more tests for these issues. I feel like a wreck 😩 hoping this gluten free will make a difference like it did for your uncle.
Not sure if this has been mentioned or not but have you looked into getting a Daith piercing. It’s not scientifically proven to help but I’ve heard a lot of good feedback from them
I know this is going to sound ridiculous... but consider seeing a massage therapist who is qualified in craniosacral therapy. I suffered like you for years. Until I saw this massage therapist who realigned my hips. I haven't had a debilitating migraine in over 2 years!!! I see him every few months for maintenence.
I am still angry at how I was fobbed off my drs and family for years. And it was someone most drs think are hacks who actually listened and was able to help me.
Also caffeine, caffeine and more caffeine is one of the best pain relief for migraines. No doze (caffeine tablets) is available at the supermarket.
Thanks looking into this now. Never heard of it. Worth a try.
Thank you so much everyone. It is so nice for read messages from people who understand this pain. I do have maxalt and find they help but a preventative would be so much better. I can’t be without Maxalt though they are a life saver. I went back to the drs and she has started me on inderal. I have noticed a difference using them but still not as much as I need. I am now waiting on a neurologist appointment. I have also joined some migraine support groups on fb and the people are so lovely and supportive,we are all I the same boat.