I’ve lived with migraines since I was 18 years old, so coming up for 19 years. Wow, 19 years?! I hadn’t even realised it had been so long. It’s crazy how this one condition has affected me for all this time and there isn’t really anything I can do about it. Which is why I thought I’d write about it. I have something that can come on out of the blue, something that is far more than a headache, a condition that can leave me unable to see or function and one that I cannot control; and I know I’m not alone. Since posting about my recent bouts of migraines I have received messages from people saying that they suffer from similar, if not the same symptoms, that they understand exactly what it is like and others asking me for advice. Living with migraines is hard, it is really hard and here is my experience of it all.
For starters why do I get them?
As far as I am aware there are several triggers:
- neck or back is out or muscles are tense
And trying to stay on top of all of those factors each and every day/week can be tricky and of course, some are completely out of my control. My Dad suffers from migraines as does my sister so we know they run in the family. Unfortunately, they often tie in with my period and they became extremely severe once my periods returned after having both of my boys. I’d say the stress side is something I do struggle with as I am a naturally stressful person and I think that is just me but what I do need to do is recognise when those stress levels are teetering over. Tiredness and sugar with 2 children around? Goes without saying really, doesn’t it?! I know I eat far too much chocolate at times and I am aware I need to cut back but that takes willpower which often takes energy, which I don’t have a lot of right now. However, even though so of these can be controlled, I cannot remove the fact that I get them and there is no cure which means I will most probably always be living with migraines.
What are my symptoms?
These can vary each time and when I was younger they were often a little more obvious. I would usually become hot or flustered. The back of my neck burning up was a very common sign that something was wrong and if I caught it in time I could go outside at work to cool down, remove any extra layers and drink plenty of water. The natural light outside of the shop also helped as the shop lights could trigger them too. However, nowadays I don’t get that flustered feeling very often and the sign that I know what’s about to happen are the squiggly lines I get in my eyes.
These usually start small and occasionally by me seeing a spot or several spots in front of my eyes which then develop but either way, both mean that my sight eventually goes. When this first happened it was the scariest moment. I remember walking along a beach with my then-boyfriend and I started rubbing my eyes because I thought I had something in them that was causing me to see these lines. As they got worse, I panicked. The lines took over one eye and then began to happen on the other, leaving me with little vision and feeling dazed. Once in the car, I could barely see a thing and it took the hour or so drive home for my sight to return. Not knowing what it was I felt relieved that I could see again and felt ok for around 20 minutes or so and then BAM! My head felt as though it had been hit with a ton of bricks. The pain was intense and unbearable. That migraine knocked me off my feet and the effects lasted for a few days afterwards leaving me feeling dizzy, light-headed, weak and low.
My migraines are what you call aura migraines. People may have slight variations on what happens but most report lines, spots, visual disturbances, loss of vision, tunnel vision and so on. I was told in the past that these occur due to the blood vessels restricting the flow to your eyes but then just recently I have been told (by a chiropractor) this may not be true anymore. The truth of the matter is that nobody really knows for sure and research and discoveries are always ongoing. Something they do think is that the two are somehow linked and this may be to do with electrical or chemical waves moving across the brain. The lack of information and the differing opinions can make living with migraines even harder as it means that you are always trying to find out if there is anything new to learn, if what you have thought has changed and to be honest, I think we would all just like a set answer, wouldn’t we?
How do they develop?
In my case, once the sight returns I always get around 20 minutes of relief until the headache hits. Now, this headache will vary depending on how long I had my eyes open for during the visual issues, what precautions I have taken (drinking water, laying down in a dark room etc) and just generally how bad this migraine is going to be. I’ve had some cases where my actions have meant that a migraine has been very mild and I’ve been able to function normally later on that day but I have also had migraines that have left me screaming in pain and throwing up. There is no pattern, no migraine is the same and I have to just go with what is happening at the time.
What medication do you take?
I have tried paracetamol, Ibuprofen, Migraleve, a prescription from the doctor (no idea what it was called I’m afraid) and now use Alkaseltzers. Over the years I have found very little helps but Alkaseltzers do. These not only help with the sickness as they settle my stomach but they also contain Aspirin which hits the pain.
The best actions to take
Ok, this is what works in my case but it may help you also so here is what I do as soon as my eyes show signs of disturbances:
- drink plenty of water
- get into a dark room asap
- put sunglasses on even in the dark room or put my hands or pillow over my eyes
- keep my eyes shut for the entire time that the squiggly lines are happening (I can still see them with my eyes shut so I know they’re there)
- take my Alkaseltzers
- ask that there is no noise from anybody
- lay down for as long as possible
- even when the eyesight has returned, stay in that dark room, keep drinking water, keep the room quiet
- if you have to get up, wear sunglasses and keep all lights turned off
- avoid caffeine
If I do these steps I can successfully have the migraine over with as quickly as I can.
What else helps?
I have personally found that reflexology, going for a massage or sports massage and seeing a chiropractor all helps to keep my migraines under control.
Migraines and Work
Living with migraines is so much more than a headache. I know people just assume that is what they are but they aren’t. They affect so many aspects of your life, they can ruin days out of your month, they can completely leave you bed-bound and can also have an impact on your job and social life.
I once had a job who knew prior to employment that I suffered from migraines, who I made fully aware of my condition during an interview and yet they still took me on. After a certain number of sick days, I was called in for a disciplinary investigation. I was shocked that they had chosen to go down this route as I had never hidden anything from them and as it was a driving job I thought it was pretty obvious that I couldn’t drive when I couldn’t see?!!
It didn’t seem to register with them so when I sat in front of them and talked about how debilitating migraines are they clearly still didn’t understand and wanted to know what steps I was taking to try to help or prevent them! Prevent them? If that was possible I would have been doing it. I knew my rights as I had looked them up but it didn’t mean that it wasn’t upsetting and patronising being asked all of these questions that made out as though I was off sick for fun or just for a little headache.
If this happens to you:
- Do your research
- Contact the migraine trust support charity
- Take a representative in with you
- Plan what you are going to say
- Take a doctors note just in case
- Remember that you have a condition that you cannot control and they have no rights to take disciplinary action against you
Living with migraines is hard enough as it is, you do not need additional problems and people who don’t want to understand questioning you. You’ll not be surprised to hear that I left a few months after all of that.
If you are experiencing migraines, you are not alone and if you have people who do not understand, talk to them about it, describe your symptoms, explain how they make you feel and how you wish you could be rid of them. The best piece of advice I can give is to find out what works for you. Drugs from the doctor may not be the answer as they aren’t for me so do look into alternative therapies, look for your own triggers, keep a diary to keep track of when the attacks occur and do your research (the support website I mentioned above is brilliant).
Let me know if you suffer from them and if you have tried any treatments that may help others, I’d love to find out more.
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