Progress made on Chronic Cluster Migraine

So... it's been a long time since I posted anything.

I've been through a lot. I lost a job last year because I had 2 days off sick because of a migraine. I was unemployed for 2 months but was offered a new job in London. I've been working there almost a year now so this is a massive, massive achievement for me. Previously I only managed to get temp jobs and it had been this way for 4 years.

My IBS was the same as it always had been but was and remains well managed with medication.

My anxiety has been OK. I think the regularity of going to work has helped a lot, has given me confidence in myself and made me happier. I still do have moments of anxiety where I feel panic-stricken and worried about life in general which can be exhausting. I had the start of a panic attack at work the other week but my colleague took me out of the office for a drink of water and sat with me. I was developing an intense, painful ocular migraine.

I got sent home then signed off sick by the doctor. I managed to go back to work for one day the following week but got signed off sick again after my Botox appointment (botox for migraine) caused me to go into mild form of shock.

I've been OK since then, which was 3 weeks ago. I've only had one grad 6 migraine since then. I was sick last Saturday and suffering with the Grade 6. (If you trade your migraines on the Hit 6 you know what this is).

My work colleagues aren't entirely understanding about Migraine but our department manager is. He is very good and actually has suffered a few migraines himself, and is very encouraging towards what I achieve at work, despite having this treacherous disability.

Recently I was offered the opportunity to partake in a surgical study in hospital, so I'm due to have an appointment for that soon. I had a meeting with the department manager today to let him know, and he was very pleased to hear about my progress about trying different things and very supportive of my request to work from home during my recovery time. I said I was afraid of showing my scars at work so I'd like to tele-commute. Of course he supported this but also said he'd be happy for me to just have that time off to relax and recoup. I'm pleased to have the option.

Workplace understanding is often half the battle of being a chronic migraineur, but when the right support is there you're not suffering as much stress which ultimately would end up feeding a panic attack.

I'm turning 30 in 6 months and have now been married for 4 years. Obviously at this point in my life a lot of people are asking when I'm going to have children. Frankly the answer should be "It's none of your damned business!".

I don't know if I'll ever be mentally ready for that. I'm so scared that being a chronic migraineur would severely hamper my ability to be a parent. I'd also have to go 9 months without being able to take my medication. Without it I can barely leave the house for more than a few hours. How would I be able to cope? Then there is the matter of the childbirth itself, if/when I get there. Hours of labour and straining, pushing etc are inevitably going to cause a severe migraine, panic attack or both. I'd be exhausted and very ill... I imagine there's very little advice available for this kind of situation as I don't just have the migraines it's the IBS and panic attacks as well...

I saw the family planning nurse yesterday for some advice and it turns out the tablets I used to take I will never be able to take again as they could kill me with a severe stroke. I was understandably shocked to hear this. I've always been paranoid I'd have an early stroke.

They are going to recommend the POP (progesterone only pill) but only after I've seen a consultant at the clinic. They are going to arrange an appointment and get back to me.

Life as a sufferer of multiple illnesses can be exhausting and very depressing and I have to take each day as it comes. I'm always having to be careful about what I eat and what I do in my daily activities. I can't over-exert myself. I can't even run for a bus.

I count the little 'blessings' and accept this is the hand I've been dealt. I'll never understand why I suddenly became so ill the moment I hit 20. I've now been 12 years a migraineur, 8 years with IBS, 5 years vomiting.

I just think it's important for others to know they are not alone and there are other people out there with various debilitating sicknesses. Just because you can't physically see it, doesn't make it any less real.

1 Reply

  • This is my nephews' wife. Same age as you and like you has suffered for many years. I thought you might like to read her experience. It's nice to know you are not alone.......

    My symptoms started 12 years ago with weight loss and bowel bleeding. I remember going to the doctor with my mum and being mis-diagnosed with IBS (irritable bowel syndrome) which at the time was just a way of labelling unexplained symptoms. No investigation or treatment was offered, just a case of put up with it. Six years forward and id had continous diarrhoea for about a year, bleeding several times a day, ongoing pain and several attempts to donate blood rejected as i was so aneamic. After deciding to revisit a doctor in 2010, i was sent for two cameras up the bowel, before each one having to drink two litres of laxative so the camera could see clearly, i was still on the table when the nurse told me i had crohns disease. I knew about crohns disease due to my work role but i was shocked, id never put two and two together. I instantly felt like my life was over knowing that id likely have a stoma one day and presumed id never be in a relationship again. I ws started on amti inflammatory medications. Two weeks later and i had a date, i confessed it straight away and tried to explain the impact it would have on my life and a relationship. I couldnt believe it when my dream date wasnt put off and he even did research to understand it more. The next four years were tough, but with Ste's support we managed to do pretty much everything we wanted to do and had a dream wedding booked in Cyprus in 2014, the scariest part was not knowing if id get to cyprus for the wedding as i could feel myself getting weaker and in more pain, still bleeding several times a week. Once again luck struck and we made it and had the best day ever! After the wedding my health went rapidly downhill and my weight plummeted. I was in agony and no matter how much i ate, i could at best slow the weight loss down. My immune system was so overactive it was attacking all of my bowel making it inflamed and ulcerated. I was started on chemotherapy drugs to try and suppress my immune system which in themselves made me vomit daily, i had to take 10 weeks off work while these took full effect. I then felt better for about a month, until they stopped being effective, my dose was increased and i was soon hospitalised for intravenous steroids on top of these. The steroids made me feel like wonderwoman and gave me a false sense of being and looking well. In hospital i got the funding to try some biologic drugs, another immunosuppressant which i injected myself with fortnightly. Being on several strong medications i had to isolate myself from anyone who had a cold or infection as my immune system was so suppressed catching a common cold could hospitalise me. After Six months of a strong drug mixture i found out in november 15 that they were having no impact on my disease and my bowel was almost blocked with inflammation. I was told my bowel could burst at any time and i needed surgery. Id had five years to prepare for this mentally so although it was hard to hear it, i could accept it. The surgeon wanted to operate and remove my colon and rectum as soon as possible but i had one more party to go to first, my cousins wedding party which id been lookinh forward to for a long time. I went into hospital the day after the party and was cut open by 10 inches, all diseased bowel out, 'barbie bum' created and a permanent stoma where my small intestine comes through to the outside of my stomach which is covered with a ted baker designed bag 24 hours a day (ted baker had a stoma and redesigned them for the better for the nhs to use). I spent 3 days in intensive care and was home within a week (the surgeon said id be in two weeks but i like proving people wrong haha) Due to so many immunosuppresants my bottom wound struggled to heal so i had to have further surgery on that, i was told there was 60% chance it would not heal at all but i have done every little thing i can to help it heal and its closing in well. Im hoping to get back to fuller than normal living life very soon. Its been a shit two years but i would never have coped as well as i have without Steven Davies support ( hes done more for me than i can ever explain) and having such a caring family. Once my wound has finished healing its back to restarting chemotherapy drugs to try and keep the rest of my bowel from being attacked as crohns is a lifelong condition without a cure. I can only say that it has changed me but for the better, and has made me so much stronger :)

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