A Chronic Pain Update

Tuesday, 14 March 2017

It's been a little while since I talked about my chronic pain, but as last week I had my three monthly Botox top up I thought it seemed like a good time to update you guys.

The short version - I suffer from chronic hemiplegic migraines and chronic atypical head pain. This means a 24/7 headache and migraines that mimic strokes and put me in so much pain that I end up in hospital. I have Botox every 3 months and it is the only treatment I have ever had that works.

For the longer version, I've written a bunch of blog posts about it, but the majority of that is here, 'Living with chronic pain'. 

I started having Botox about 16 months or so ago, and have had it every 3 months since. It has been the most wondrous and miraculous thing I could have ever dreamt of. I am so grateful to the NHS for this treatment, I am so lucky to have found Doctors that listened to me and believed me, and I am thankful for the neurologist who changed my life by agreeing to give me Botox.

Botox is not your typical sort of treatment, it was discovered as a treatment for headaches and migraines completely by accident. People were having Botox for cosmetic reasons and began to report back that they no longer had the migraines they had always suffered with. Without people having Botox for cosmetic reasons, this treatment would never have been discovered, science and medicine are pretty amazing! It works by freezing the muscles in my head that cause my migraines and constantly spasm, causing my head pain. Once those nerves and muscles are frozen, no more pain.

Botox, for me at least, is incredibly painful. I sob every time. I have 36 injections in total, in my forehead, the base of my skull, the top of my neck/back, in my scalp around my ears. There is very little skin or flesh, this makes it very sore to have injections into those sites. The thing with Botox is, that the needle going into your skin is painful, but the feeling of the Botox going into your skin is even more painful. Botox is a poison, and it hurts. I bleed a lot, my forehead is usually a mess of blood afterwards. I have a lot more Botox injected than someone would have for cosmetic reasons, which is usually only a handful, whereas I have 3 large needles full of Botox. It hurts so much I can't concentrate afterwards, so someone has to drive me back and for my appointment, which isn't at my local hospital, but one 40 minutes away. For a few days afterwards I am incredibly sore, I bruise badly at the injection sites and I am not allowed to wash my hair for at least 2 full days after the Botox so as not to irritate the sites.

I am no longer on any medication for my chronic pain. I spent almost 7 years on various intense medication regiments, taking everything from tramadol, to morphine, to various SSRIs, all sorts of medication, even beta blockers despite being asthmatic. Beta blockers can cause asthma attacks and they certainly did in me, so whilst I tried to cope, desperate for anything to work, I couldn't continue. Not being on medication means I am allowed to drink alcohol if I choose to, something I had not been allowed to in years. I don't really drink, but it's nice to have the option if I want to. 

The Botox I have last for 3 months, I can always tell when my appointment is getting close because I can move my right eyebrow again, and I start to get a headache again. It is usually just into the moderate pain rating by the time I have my appointment. Thanks to Botox, I have not had to visit the hospital because of my pain even once. I can wear sunglasses again, tie my hair up, sleep comfortably, wear a head band if I want to, stay up late at night and not be in agony the next day, it changed my life.

I get real, pain free days. I have not had a single migraine since treatment began. I live an almost normal life without having to constantly worry about how many spoons I have left, or how much I will pay for those spoons the next day. Towards the end of my 3 months I do have to think about this, but to not have to do that every day... it's something I couldn't have ever dreamed of happening.

No more hospitals, no more medication, and most importantly, I am no longer in pain all day, every day. I love the NHS.

Much love,
Kitty xxxx

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  1. This was absolutely fascinating to read, although some of the details made me squirm!

    There was a time when beta blockers were an excellent response to migraines for me (the anti-anxiety element was obviously an added bonus ;) but the last time I tried them they absolutely exhausted me. So now the only option for me is to take a couple of cocodamol and try to sleep. Luckily I only have to deal with the effects about once a fortnight, if that, so it's an easy enough choice for me to make.

    I'm so glad you found a solution that has turned your life around, even if the side effects aren't pleasant.

    Lis / last year's girl x

    1. Thank you lovely! There are nasal sprays you can use when you feel a migraine coming on but you really have to fight for them, keep going to your doctor and bugging them lovely! xx

  2. I never knew botox could be used to ease chronic migraines like you have. It seems like you have been through a lot but I'm glad you found something which gives you some normality.

    1. It was discovered totally by accident when people were having it for cosmetic reasons! Thank you x

  3. Get horrendous headaches. I feel a sick feeling and just can't function, but when others describe migraines i realise mine is nothing. I didn't know botox could work. I know it can be used to stop excessive sweating etc but never knew this. Glad it helps :) x

    1. It was discovered completely by accident when people who had it for cosmetic reasons reported that they no longer suffered with migraines :) it's amazing! xx

  4. Wow. I'm just stunned reading this honey. I had no idea that you suffered in this way, or that the treatment is even more painful. I am glad it gives you relief and I hope the eventually give you something longer lasting so you don't have to have it as frequent xxxx

    1. Thank you lovely! A few years ago I couldn't have done any of the things I do now, like work full time or blog properly, so this has been amazing for me xxx