Hemiplegic Migraine and Life

[Sticks95]

Been a few days since i have last written, depression hasn't been good etc. I was just wondering if any of you actually manage to work a full time job with this condition or has it completely effected your life in that sense? I feel like im really struggling to hold a full time job, run a house, make time for people (which i know all is life) but on top of that have a condition that is completely debilitating, i feel like im sometimes being drowned by it, i cant escape! I treated myself to a lovely facial at my favourite salon and it triggered a bl00dy migraine! Sorry to rant, im very frustrated x

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I'm now retired but I did work with chronic migraines from the age of 26 to 62. At times, I had no social life. I would come home from work and go to bed I was in so much pain and/or tired. And at other times, when I had a good preventative drugs, I could have a "life." It's been off and on, the search continues. The drugs work for a while, then they lose their effect and I have to start looking for something else. It was very difficult for me to have a balanced life.

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Forgot: I get migraines when I get my hair done, I think it's the shampoo sink, backbend.

[Frustated in reply to Hidden]

I stand over the basin at the hairdressers!

[CarolineAnne in reply to Hidden]

Wow! Just got my haircut and have just had 16 auras over three days! ( I don't get the headpain). This is very interesting!

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Hi Sticks95, I'm sorry to hear what your going through. I suffer from hemiplegic migraines too and get headaches everyday. I'm also a single parent and I work full-time. Its very very very difficult to cope with everything when you have constant headaches. When I was finally diagnosed with the condition and did a bit of research on it, I accepted that this how my life is going to be for the foreseeable future. I tell myself everyday that "I wont let these stupid headaches take over my life" and that's kept me going. I have a high tolerance of pain so even when a migraine hits me when I'm at work, I just keep going. I've bought an ice pack that wraps around my head, paracetamol and iburofen in my bag that I take with me everywhere. The meds don't really work from longer than 2hrs but at least its something to sooth the pain till my next appointment with the neurologist. My GP has taken me off migraine meds as none of them have worked for longer than 2 month so you can imagine what's its like for me right now. But that's life....we get sick and some conditions are worse to cope with than others. But we can't stop living our lives everytime we get sick. Especially with this type of migraine...how many times can we call in sick at work? If you have headaches everyday! Don't let it get you down... Find some form of pain relief that you can carry around with you. Even if it only sooths the pain temporarily, at least you can still get on with your life 😊.

[Joyceito]

I work full time. I suffer from chronic migraine, but I've been lucky it is really well controlled by flunarizine. Still often find myself exhausted. Trouble is I think tiredness and stress trigger more migraine and it can be a viscous cycle.

[Fourelmsali]

Hello, i gave up work (teaching) at 49 as i could no longer reliably hold down a job. Thankfully, whilst we could do with the money, we have coped without. My migraines have taken over but have not ruined my life. Joining this group has helped me realise that im far from alone and that there is no known cause or cure..we just have to try and find out ways to cope.My list of possible triggers is A4 long. Im now having 6 weekly GON injections past 2 years but fear that my Occipital nerve is damaged now as ive had constant intense skull pain since October. I also have a Spring TMS machine which im using ti try and stop the overuse of triptans. Sadly i havent found a preventative drug that works or i can tolerate.

Im wishing all of you a less migraine life for 2017. xx

[Relief_seeker2]

Hi Stick95,

In 2008 my life long intermittent Migraines turned the corner and became Chronic Daily Migraine. It has not been aborted since-meaning that I have been in some stage of migraine pain every second of every day & night for the last 8 years. Nothing has been found to abort it or actually treat it. In spite of this, I tried to continue to do everything I've always done - work full time, shop, cook, help kids with homework, maintain a neat & orderly home, remember everone's birthdays, anniversaries, etc. But in 2014 I just coudn't do it anymore and gave up on just about everything. I had the greatest job - my most favorite in my entire life and I had to go on short term medical leave and then I was advised to go on short term disability and finally I went on long term disability. I have always been a Type A-Do It All person, I remembered everything all the time at work & home-seemless. Now my memory sucks and just thinking about anything makes the pain worse.

I am on disability with a 3 year review. I receive a monthly disability check that is roughly 1/3 of what my working monthly income was. I'm on Medicaid which has forced my family to also be on Medicaid. I miss my wonderful job. I miss being 'able'. I, too, grapple every minute of every day with the constant pain, the overwhelming depression stemming from the absolute sence of total failure that glares at me day & night through everything I'm surrounded by that is not done. There isn't one inch of my home that doesn't remind me of something I have not done and I'm not going to do. I'm ashamed of it and myself and I don't even want to start on how bad I feel about the message all of this is giving to my kids. Oh, and I can't forget to mention all of the school functions I have been forced to miss. Another negative message to my kids. I have nothing positive to say; I honestly don't know why God has chosen to leave me on this rock, so I totally understand where you're coming from.

I want to say hang in there and don't give up and a whole bunch of nice little phrases that are meant to encourage us but I don't see the point of it - they haven't and don't do me any good so I don't see how they can be good for anyone else, sorry to say. The best thing I can say for sure is that you aren't alone in your pain or your depression.

If you don't have a great PCP who is helping you with a good specialist and treatment and a great pain management counselor- get one. My pain counselor is wonderful although he is so overbooked that I don't get to see him often enough.

I hope that at least in some small way I've been able to help you here.

Sincerely

[Sticks95 in reply to Relief_seeker2]

Hi Relief_seeker2 , thank you for your honest message. I totally understand what you are saying and i have days where i feel totally useless and dont see the point in going on in life. Since being on this forum i have felt better and not so alone about my condition it's just sad to hear about people like you who are really struggling, i wish there was a cure. I think i am going to look into getting help with my depression which i think might in turn help with my constant head pain. I'm here to talk whenever, be nice to get updates from you with any changes.

Sticks x