The migraine monster (guest post)

I’ve been lucky enough to have a friend of mine, Bunny, agree to do a blog post.  She suffers from severe migraines but has been using a new treatment to deal with it.  In this entry she talks about the effect that migraines have had on her life.

You can find Bunny’s writing blog at http://bunnyssnippets.blogspot.co.uk – it’s well worth a visit.

Hi, I’m Bunny, I’m in my late 30’s and I suffer from Refractory Chronic Migraines. In this post I will try and give you an insight to how it affects me, what treatments I’ve been through. Finally how one treatment has had a big effect on my life. I often refer to them as “migraine monster” because that is how it feels. Like being attacked by a monster.

I first started getting them when I was 13 when my period first started. This is common for most girls. The doctors in the hospital thought that I had a tumour in my head because of the pain and the symptoms that I was experiencing. All the tests for that came back clear. Had a CAT scan, MRI scan amongst other tests. It was a migraine, they classed it as “severe classical migraine with aura”.  I was sent home and on my way.

What followed wasn’t that simple. The pain in my head made me feel like I was going to explode and implode at the same time! It felt like my head was in a vice. If anyone has seen the Saw film with the girl with her head in that head cage thing, you will get some idea. Aside from the normal symptoms of this time of migraine, the pain in head, the flashing lights etc, I also experienced sound as colour. All of which was (is) normal.

At one stage in my teens I was visiting ER that often that I was telling the doctors what amount of drugs to give me. They gave me pethidine and valoid which isn’t ideal to get every time. Over the years I was given the normal drugs, Migraleve which are yellow and pink tablets. That didn’t work. I was also given Imigran both in tablet form and injection. It was a pen injection that I had to inject in the muscle of my thigh or in the arm. The thigh was the less painful. Was given the “usual” triptains, none of which worked. Then they faded away, only appearing now and again. Until they came back with a vengeance.  

In October 2012 the migraine monster came back and it seemed like he had friends with him. I was getting two or three daily. On the pain scale they were level 9 or 10. After seeing the doctor and he had exhausted his drug options, I was referred to a Neuro (Neurologist). After an appointment with them, they eased away for a few days but then came back. After weeks of changing doctors I finally got another appointment with him. My symptoms had changed, evolved. More on that later. He classed them as Refractory Chronic Migraines.

I was given a high dose of Epilim (900mg) and then at a different time Topiramate or Topamax as it is sometimes known as.  When the drugs didn’t work and he had exhausted all drug routes I was given Nerve Blocks in the Optical Nerve.  Two sessions of this didn’t work. Next step Botox.

I had my first session of Botox back in March 2013. It made some difference, then I had another session 3 months later. Then I had a time of cluster chronic migraines. These are when you get a batch of them after having not had them for a while. It is now May 2014, and after the fourth session of Botox, I noticed a marked improvement. I can now plan to go out. It doesn’t just affect the sufferer, but the family, friends and those around the sufferer.  Family members get fed up with you always being “sick”. Although they are concerned about you, it does get to be a strain. Also noise has to be kept to be at a minimum. I have lost friends over it, always cancelling plans at the last minute saying “I can’t go, I have a migraine” wore thin. It’s something all of us who suffer from migraines face. Work wise, I have been lucky. I was on a temporary contract when they struck hard and on the sick. Despite this I got made permanent. I suppose declaring that I suffered from migraines on the application form when I first applied for the job helped. Work was and is great, they support me. I have meetings with my boss every month or so. They ask about my migraines and if there is anything they can do to support me. I was told that “Chronic Migraine” is classed as a Disability in their workplace. This is just my experience, I have known others who have lost jobs over having Chronic Migraines. 

Symptoms and how I feel

How I feel with a migraine attacks and afterwards. I will try and explain this the best I can.

A migraine can happen at any time, any place. If it happens during the daytime I often get warning symptoms, this is commonly called “pre-migraine”.  I get what is known as Aura, I see colours around people and objects then comes a mild form of colour synesthesia. I see sound as colour. Next come the hallucinations, I get both auditory (hearing) and visual (sight) hallucinations. Then the migraine attack starts, my head all of my head feels like it is in a vice. That is slowly being squeezed until I can’t handle the pain anymore then it squeezes some more. Also I feel like there are screws being twisted into my head. Then we come to my eyes, my eyes feel like they are on fire, like they are being burned from the inside.  Also my face goes numb on one side, I also get some trigeminal nerve pain. 

If I can go to sleep with it, I’m okay, sleep it off for a few hours when I wake up, migraine gone but still have post-migraine. This is often called the “hangover stage” because it feels like you have a hangover after a heavy night’s drinking. If it happens in the middle of the night, it is a different story, if I wake up with it, that’s me for the rest of the day. When I eventually get back to sleep in the morning, it is usually due to exhaustion. Then when I wake up in the afternoon I have post migraine but the migraine headache is gone. I have no pain in my head. The post migraine stage is also sometimes called as a “fog”. Like you have a fog over you, if you’ve ever felt faint, that swimming sensation you get? That is what the “fog” feels like. Sometimes this also happens during a migraine. 

The colour synesthesia and the auditory and visual hallucinations do progressively get worse. To give you an example if travelling in a car, the lines in the middle of road rise up and twist and turn like a snake. Trees move and birds seem like large predators. The auditory hallucinations are sinister voices talking to me or whispering to me. Mix this with the feeling of someone behind or next to you and it is very scary, being told it is “normal” does not make it any less scary. 

I also get very disturbing migraine dreams. These are scary and often seem so real that I am left shaken when I wake up.  I started writing these dreams down and from them has spawned a series of novels, Book I of which I am currently writing. The link at the top of this blog post, is a link to my writing blog. 

Triggers

A trigger can hide in your body for up to 72 hours before you get a migraine. By keeping a detailed migraine diary in theory, you can look back and see if anything could be a trigger.

I do believe that, this did help. I’m already a strict vegetarian and during the few months of keeping a diary a few triggers were found.

MSG (Mono-Sodium Glutamate) also known Yeast Extract, Maltodextrin and Hydrolised Vegetable Protein. It also hides under E621. Now here is the thing when E627, E631 and E635 boosts the flavour/effect of E621 up to 15 times. So if you’re sensitive to E621 and it’s mixed with E627, E631 or E635 you are basically getting E621 boosted 15 times.

MSG is found in lots of food, takeaway Chinese, gravy, tic-tacs to name a few.

Carrageenan is another one. It is a derived from seaweed. It is used as a stabaliser in vegetarian/vegan food. It is found in some chocolate bars and also in ice-cream. Also Algae or any form of seaweed I cannot take.Yeast is also a product I can’t have, natural or chemical. I also don’t drink alcohol.

Slide projection is a trigger for me. The digital one, the old fashioned type with an acetate sheet and using light and mirrors is fine with me. Also flash photography and quick flashing images is a trigger. 

Hormones is another trigger, nothing I can do about this one. I normally get two-four hormonal migraines a month. Compared to migraines daily, this is a big improvement. Also something else out of my control is atmospheric pressure. Atmospheric pressure in the air, can sometimes (but not always) trigger a migraine. 

OCD

This is an off-shoot from chronic migraines. I have OCD, not many people may realise this. When I say I have OCD, I am not joking. My Neuro said that is is normal (again with the “normal”). He said that a lot of people who suffer from chronic migraines develop OCD.  He said it is the brain’s way of find organisation in amongst the chaos. I have my own set of cutlery that I use, things have to be in a certain place. I have items on my desk at work, and I know if they’ve been moved. Even if it is moved by a sixteenth of an inch, I know. I know if someone has been in my room when I haven’t been there. Even mundane stuff like housework has to be done in a certain order and a certain way otherwise it’s not done “right”.

The Migraine Trust is a Migraine charity in the UK. It is a good source of information. 

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