Frustration

[skullsandponies]

I imagine this is a word that rings true with most of the people in this community but I'm really feeling it at the moment. I've written about my migraine experience here before but at the moment I'm having a really tough time of it. This past year my migraines have kicked into overdrive. They've always been quite bad - and always a big part of my life but in the last year I don't think I've gone a week without one (or more). Then in May I got made redundant and I thought to myself "Oh my goodness....there is no way I can get another full time job and hide my migraines going through the probation period!" or even if I took the risk and told my new employer I new I would be off sick a lot. SO I made the big bold decision to go self employed and it's been a fantastic decision for me. It's made managing my migraines so much easier - and my work life so much more fulfilling. Sure it means I have to work evenings and weekends sometimes if I've had a particularly bad migraine run - but I don't mind that as I'm doing the work for me and my clients and also know that I am managing to kick ass at a full time job.

The problem is this whole year I've been trying a whole bunch of different things to try and alleviate migraine. Medication played a major part in that - some with awful results some with ok results - but always with terrible side effects that often made life much more complicated.

In the past I've tried lots and lots of other things - all the things the books tell you and the lovely folk at the NMC - acupuncture, massage, reflexology, magnesium supplements etc etc.

So at the moment I'm trying diet. I've kept migraine diaries for years - and food diaries and there has never been an obvious trigger (I've tried cutting those out). So now I'm trying a detox diet - focusing on eating lots of fruit and vegetables, brown rice, pulses etc - and cutting out dairy, gluten, caffeine, sugar and meat. I'm not expecting miracles - but in some ways I really hope it is food related. As rubbish as it would be to not be able to eat dairy at least I'd know - at least I could claim my life back and CHOOSE to have a migraine if I had dairy.

Oh and I counted up all of my migraines from 2012 (probably a stupid idea) and in total had 91!! I also had 134 days where I either had a migraine, headache or felt awful.

I think the worst thing about migraine is that 95% of the time I feel unwell. It's only on those days I wake up and go "Oh I feel amazing!" I realise how most days I feel so rubbish - I might not always have a migraine but migraine is always there in the back of your head waiting to pounce.

[teadrinker]

I agree that you only realise how awful it is until you're feeling well again, and you can't quite believe how you coped.

You are obviously very dedicated in trying to alleviate your migraines, which I think is great as I don't have that kind of staying power. For now I am resigned to getting them - although they are much less of a problem when I get botox (next lot due next week!) - simply because I'm fed up with working on trying to make things better, but that's just how it is right now & I'm OK with that.

[rosianna]

sorry to hear your struggling with migraines increasing skull and bones youre such an inspiration with your craft and motivation to work going self employed.

i know you understand migraines and the treatment of them well and really hope you can pin point a reason why theyve started to increase.

did you ever try the occipital nerve block? i know it doesnt work for everyone but was a life saver for me.

dont let the number of migrianes youve had get you down, i quickly totted up ive had around 1000 in the years ive been suffering migraines so i dont keep count as the stress could trigger another??!! ...

keep us informed of how youre doing and what youve found helps!

[skullsandponies in reply to rosianna]

I haven't tried that but a friend of mine has them for hers and swears by them. I think I'll see how the diet goes and then if it doesn't make a difference go back to the NMC. Did you get the nerve blocks through the NMC?

[rosianna in reply to skullsandponies]

yes i do go to the NMC , the injections have been wonderful. definitely worth trying! good luck!!

[rosianna in reply to skullsandponies]

did you try the nerve block??

[Juliapester3]

Hi, have you thought of having a food intolerance test done? I had an initial blood test done recently which shows that I have antibodies present that indicate a food intolerance. The complete test is quite expensive but I am going to see of I can have this done on nhs or my private healthcare instead. This is maybe easier and quicker than food elimination done month by month?

I have to applaud you in you taking the initiative to go self employed, I resigned from my job a year ago because I was off sick nearly every week and the guilt and pressure became too much. How did you take this first step as its something I have toyed with for a long time as I miss work terribly

I hope you have some success with your new attack!

[skullsandponies in reply to Juliapester3]

Well I went to a private hospital where a friend of a friend had been for intolerance testing (and had migraine and it changed her life!) and after a 30 minute interview with the nurse she basically told me it didn't sound like I had intolerances at all and didn't want to charge me for the appointment as it seemed a waste of time. She suggested I try cutting out different food groups and gave me lots of info on how to cut out gluten for example. Which I did and saw no differences. So I don't know - maybe I should have been more pushy and asked for a blood test anyway?

I guess in a lot of ways I just don't want it to be something I'm stuck with - which I'm starting to fear it is. I also really don't want to have to go back on meds purely because the side effects for me are just so horrific! I guess watch this space!

[Juliapester3 in reply to skullsandponies]

You can take the first step yourself by, which is what I did, google food intolerance and you,ll get a variety of tests you can do yourself to get the initial response. If you then decide to have the full test done you can. I,m not sure how the nurse could know you don't have an intolerance? We don't have to have an allergic reaction to have an intolerance it may just be that our bodies don't cope very well with a particular food, and being migraneurs this could trigger one off I guess?

I am very sceptical about all treatment for migraine as I think all of us are that suffer, because no one REALLY knows the root cause!

We just have to keep plugging away I guess....

[skullsandponies in reply to Juliapester3]

What drives me bonkers is the amount of variables! It could be that a migraine is caused by a week of eating too much of a certain food, one night's bad sleep, a bit of stress and a hot sticky day...but that the migraine doesn't come on until 7 days later! Argh!!!!

[Juliapester3 in reply to skullsandponies]

Oh god don't start me off on that one! It's sooo frustrating ...I,m also fed up with people telling me that I should take more meds and that a positive attitude makes a difference! Ha ha if only it were that simple ....

[skullsandponies in reply to Juliapester3]

I kind of refuse to talk to non migraine people about it in detail now. I know they mean well but people are always saying "oh have you tried acupuncture? It's amazing and will cure you!" and then I have tried whatever they suggest, and then they suggest something else...and I've tried that and it just becomes horribly awkward!!! I do understand they want to help and that it probably has helped someone and I do try and take on board any suggestions people have in case I've overlooked something but seriously - come check out my library of migraine books at home - then tell me all this!