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Dealing with chronic migraine, chronic sinus and cluster headaches - employment/mental health.

HannahMCRHannahMCR Posts: 1Member Listener
edited August 13 in Ask a chronic pain adviser
Hello, 

I'm Hannah, 26 years old and have suffered from migraines for over 16 years. 

I would really appreciate some guidance on how to cope with chronic migraines, chronic sinus and cluster headache, please. Whether you are someone who has experienced these debilitating pains and can give me some advice on how you've been able to cope from day to day enduring the above. Or an advisor who has medical knowledge on how to cope and prevent such pains - I would be very grateful. 

I have been seen by a fantastic neurosurgeon who is helping me through trialling new medications. Though I am in the early stages of pregnancy and wanted to be rid of the medication that I previously took so that it wouldn't harm the unborn baby; also in the hope that clearing my body would help the migraines etc after time and eventually they would disappear. Unfortunately, this was not the case and I endure around 15-18 attacks per month, with niggling head pains on most days, though these do not always turn in to an attack. 

Due to the severity of these attack in all three categories, I have resorted in using oxygen and Gammacore on the sign of an attack - the oxygen barely touches the pain yet I find it calms me. Whilst the Gammacore is effective, yet each time I've used the device it has been short-lived relief and has made me sick nearly every time. I was holding in hope for the device and have heard positive things about it, yet I have learnt over the trial stage of medication that sadly it is not always a 'one for all cure.' 

After starting my new job last year it has been a downward spiral on the medical side of things. I travel around 1 hour 15 minutes to work there and back each day. The working day is from 8 am to 6 pm. Initially, this did not phase me as I was truly determined to get set into my new working role. However, the travelling side of this is starting to take its toll and the fear of having to leave work or the embarrassment of having to say that 'I feel unwell' and have to go to use my oxygen or leave to go home as if I do not leave there and then I would feel debilitated and have to stay either at work or in my parked car until it is safe for me to continue my journey home. 

My work has been very accommodating to my needs, though I cannot help to feel a burden and now all of the above is taking its toll on both my physical and mental well being. I am allowed to work from home when I am unwell, though I have to attend work when I feel well - this is thought was reasonable enough. Yet now because I am having to leave work on numerous occasions due to feeling unable to be productive because of the attacks, I really do not know where to go from here and it's making me feel incredibly low and drained mentally and physically. 

As good as my work colleagues are, unfortunately, I can not just take paracetamol and the pain will be gone. This is an ongoing day to day stress that I am having to deal with. It would be great to hear from anyone who is or has shared similar experiences, or who could give some guidance on where to take it from here with work considering the pregnancy and the three kinds of attacks I experience.

A massive thank you in advance. 

Best wishes, 

Hannah

Replies

  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Hi @HannahMCR and a warm welcome to the community! I'm sorry to hear about your migraines and the impact they have had on your mental health and work. I'm glad to hear that work have allowed you to work from home but I can totally understand why the travel and comments from colleagues. Is this something you have spoken to work about?

    I'm sorry I cannot provide any experience of my own but I hope other members of the community will be able to do so :) 
    Chloe
    Online Community Officer
  • TraceyFalconTraceyFalcon Posts: 24Member Courageous
    Hi Hannah
    It sounds like you are having a really difficult time. I wonder how your migraine symptoms and work were before you were pregnant and how pregnancy is affecting your health and also how you are coping emotionally? I am on my third round of Botox injections for chronic migraine and I am beginning to feel a positive effect at last. I have mostly worked freelance where there has been really no choice but to go to work but alongside this I had a part time permanent job. Work were good in that they took out lightbulbs from the awful office lighting above my desk. They looked at the angle of my computer, screen glare, chair etc. You can ask them to do all of this. Perhaps they have. I totally get you needing to go off for a while - there was no quiet space for me at work and that was a huge issue as sometimes I might need to have 1/2 hour quiet time in order to be able to cope for another few hours. I also wore sunglasses at work when the light was affecting my head - yes I looked like a poser but it helped! I just joked with colleagues that I was a massive attention seeker.
    It can be really hard for colleagues and bosses to understand migraine. I wonder if you could email them an info leaflet from somewhere like the migraine trust? There are also counselling options for dealing with chronic pain. You can self refer on the NHS through IAPTs.
    The things that concerns me is your commute. I don't know how suddenly your migraine attacks come on but driving with a migraine, for me, was pretty impossible. I'm not sure how you can deal with having to pull over for a while.
    If you are planning to go back to work after your baby is born you will be tired and more pushed for time. Is there another way of getting to work, by bus or train, that could give you some 'rest' time?
    Be kind to yourself and your baby!
    (Long into my chronic migraine suffering I also now have spinal conditions that mean I can't walk and am not able to work at present. The fact that I can control lighting in my own home and rest when I need to is an enormous help to the migraines - just a shame I have other chronic pain to also deal with!)
  • Chloe_ScopeChloe_Scope Posts: 5,202Administrator Scope community team
    Hi @HannahMCR, how have you been this week?
    Chloe
    Online Community Officer
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