What My Migraine Was Hiding

{As ever with the Chronic Life series, I must point out that I’m not a doctor or medical expert, just a patient like any other. My thoughts and feelings are just that; medical advice should be sought from your specialist.}

Getting new additional diagnoses when you’ve lived with Migraine for most of your life is a strange and disorienting thing. Finding myself dealing with Neurosurgeons and having a hole drilled in my head to assess the pressure in there (see my ICP Monitoring post here) has been a dizzying experience both literally and figuratively.

Since the MRI I had back in January 2016, I’ve had to get to grips with two diagnoses that were completely new to me. The MRI itself showed that I have a Chiari Malformation Type 1 (click here for a brief explanation of what this type of Chiari is). I had no clue what that meant so had to spend some time finding reliable sources of information to educate myself before meeting with my Neurosurgeon…it’s now September and I feel like I’ve been to the surgeon’s clinic, the surgical ward and MRI department so often that the particular part of West London has become a familiar stamping ground for me & my husband. Fortunately it’s quite a pretty square so we’ve managed to do a little outdoors coffee drinking, in a busy part of London yet surrounded by trees, before/after appointments; you’ve got to take your little relaxing moments wherever you can find them when living  this Chronic Life! 

The next step was meeting with my Neurosurgeon. He recommended that I have ICP Monitoring rather than going straight for the decompression surgery that is the treatment (but sadly not a  cure) for Chiari. He wanted to know what the pressure inside my head was like.

As it turns out this was a good call on his part, as the pressure is high. Having analysed the readings from the monitoring procedure, the Neurosurgical team believe that what they’re seeing on my results is high pressure that isn’t being caused by the Chiari but is a problem in it’s own right. This raised pressure (the term they’re using for it is Benign Intracranial Hypertension or IIH) needs to be addressed, as the team have advised me that leaving it as it is would pose a risk to my sight, memory and cognitive function. They expect that addressing the pressure will be of benefit in terms of the daily pain, but how much remains to be seen. It will also cut down some of the risk involved in the decompression surgery in the future, should I decide to have it.

Here’s the part that’s a little scary for me – they have strongly recommended that I have a shunt placed in my brain to drain the excess CSF fluid down to my tummy. The hospital I’m seen at it is well known for excellent standards of Neurosurgical care and I know that my surgeon does far more complicated surgeries than this but still, I’m a little anxious at the prospect of brain surgery (I was proud of myself for getting through the ICP monitoring!). The shunt procedure has risks attached and is something I’ll live with for the rest of my life, so I’m learning as much about it as I can while I’m on the waiting list.


(Me with the pressure bolt monitoring thing attached)

But lurking behind all this in my mind are other questions – how long have the Chiari and IIH been there? If I didn’t have a history of Chronic Migraine in my own life and in the family, would these disorders have been picked up sooner? SHOULD they have been picked up sooner, despite my Migraine? 

I realise that it would probably be wise to put these questions aside, as definitive answers to them are very unlikely to be forthcoming! But still, I think they are entitled to exist and talking them out with my family and blogging about them may help me to process them. I can’t prove anything in relation to these questions, but here’s what I think/feel: I think that my long standing Migraine diagnosis caused the people treating me to attribute ALL neurological symptoms to Migraine. The specialist I had for over a decade was well-respected with good cause and often went beyond the call of duty to support me and my family, so I don’t feel angry that these conditions weren’t picked up – indeed, I believe that the Chiari may have been less of a problem at that time as my condition has deteriorated since the birth of my daughter (her delivery was hard and I suspect worsened the Chiari, though I can’t prove it). As for the pressure – was my pressure high 5 years ago, 10 years ago, 15 years ago? Does the steady and devastating increase in debilitating daily pain & symptoms over recent years mean that my pressure has been climbing during  time period? 

These questions have the potential to be the kind that circle around in your head at night but never really get answered. One thing I do firmly believe is this – it is well worth discussing with your specialist such tests as an MRI and if need be an LP to check for neurological abnormalities or pressure problems, if you’re living with Migraine that fails to respond to treatment or worsens compared to what you’re used to. Of course most of the time the outcome will be results that are all clear, but I feel that my newer diagnoses were masked by the Migraine. My specialists and I have no doubt that I personally do in fact have Migraine that I’ve inherited genetically but it is not unheard of for people with Chiari, for example, to be misdiagnosed as having Migraine and/or Fibromyalgia (check out the Mayfield Clinic Website for more details on Chiari symptoms). Of course, there may well be many others out there who, like me, have Migraine AND another neurological condition. I’m left feeling that I should have asked for tests back when my condition first deteriorated to the point where I had to stop teaching and became largely housebound (as I still am). 

Having gotten all that off my chest, it’s time to go back to my research on what to expect from life with a VP shunt.

Wishing you good luck and happy days,

Kindra x

Follow me on Instagram.

Tweet me @chroniccockney

Posts you might enjoy:

Everybody’s An Expert On Migraine.

Migraine and Coping With Hospital Stays.

Making Medical Appointments Work For You.

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Checking the Pressure in My Head

I’ve just uploaded a new video to my YouTube channel! It’s about ICP Monitoring, the procedure I had done recently to check the pressure inside my head. 


Here’s the link if you fancy checking it out – What Is ICP Monitoring?

Wishing you good luck & happy days,

Kindra x

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Everybody’s An Expert on Migraine

As ever with the Chronic Life series, this post is made up of my opinions based on my experiences of living with Chronic Migraine and now, it turns out, Chiari. Some days I feel positive, so days I rant & some days I fall silent altogether. This post may be a little on the ranty side but I’d love to hear your views in the comments (where I approve comments individually to ensure that trolls get no joy from me or anyone commenting). 💜 K x

Migraine is a strange thing. Unlike rarer disorders, it is a disease that a lot of people have heard of. It has been my experience though that while lots of people THINK they know exactly what Migraine is, many actually do not. 

The public in general may not be aware that Migraine impacts sufferers in a variety of ways and the frequency of attacks ranges from the Episodic Migraine sufferer who experiences one or two attacks a year to patients like me at the far end of the Chronic spectrum, for whom Migraine is a daily struggle. Other points on the Migraine spectrum include Episodic patients who experience anywhere up to 14 days of head pain per month with 7 of them being migrainous in nature (anywhere above this is termed to be Chronic) and the Chronic Migraine sufferer who has 15 or more days of head pain per month with at least 8 being migrainous, who may have pain free days in between. These are just a few examples of how the frequency of attacks can vary from patient to patient.

I have noticed that despite Migraine impacting on people’s lives to a variety of extents, many people view Migraine as a minor inconvenience and expect every sufferer to only have attacks now and again and to bounce right back  immediately after an attack. I have even (rarely, I’m glad to say) heard people who themselves live with Episodic Migraine express disbelief that Migraine could be so frequent and debilitating that it constitutes a disability. The attitude that ‘their Migraine can’t possibly be that bad, I manage mine fine’ is galling for a Chronic sufferer to hear. It adds to the stigma surrounding Migraine and the stigma is a huge problem.

The belief that Chronic Migraine ‘can’t be that bad’ makes life even harder for sufferers. Trying to convince others of how just how devastating an impact Migraine is having on our lives is exhausting and stressful. It is for this reason that I can not forgive the occasional Episodic sufferer who contributes to the misconception that Migraine is no big deal and is easily dealt with – they should know better. The fact that someone is an Episodic sufferer rather than a Chronic one doesn’t make them better/more determined/harder working people; it just makes them luckier. I’m glad to say that I have only personally experienced this a handful of times IRL in the 25 years since my first migraine. The majority of people who have ever had a migraine attack or watched a loved one go through one are horrified and empathetic to the plight of people for whom attacks have become chronic or even daily.

With regards to the attacks themselves, the widely believed ‘it’s just a headache’ misconception is infuriating for all Migraine sufferers and is just plain wrong. A headache doesn’t make you cry, vomit, experience visual disturbances, vertigo, aphasia….I could go on! The idea that you can just ‘push through’ suggests that a Migraine can be ignored and defeated by sheer force of will – it can’t, believe me, I’ve tried. The World Health Organisation recognised years ago that severe Migraine attacks are no joke; WHO classified them as comparable to quadriplegia  or active psychosis in terms of how debilitating they are. 

Part of the problem is that people seem to struggle to recognise the severity and scale of impact of any condition that they can’t physically see just with the use of their eyeballs. Migraine sufferers naturally withdraw from the world when symptoms are at their worst. Add to this the fact that many sufferers, including myself, struggle to summon the energy to try to persuade others of the reality of our situation when we know from experience that all too often, we are met with incomprehension or downright disbelief. 

I’ve been diagnosed in recent months as having a Chiari Malformation. The vast majority of people in my life had never heard of it. So I show them diagrams and give them a brief explanation or a more detailed one if it’s someone who is particularly interested. No one so far has tried to tell me that ‘it’s not that bad’ or ‘my aunt had that and when she lost weight it cleared right up’ or ‘you just need to get out more’. Living with a condition that is relatively rare or unheard of by the public (and sometimes even by members of the medical profession) has it’s own set of difficulties. But I’ve been asking myself recently – would life actually be a little easier for people with Migraine if the world and her mother didn’t already think they know what Migraine is? 

Wishing you good luck and happy days,

Kindra x 

Tweet me – @chroniccockney

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Autumn / Winter Nails: Short and Dark

  

Just a quick post today, before the pain creeps too high me to be able to look at my iPhone screen! I finally had a morning where pain was low enough for me to leave home for the first time in weeks; yay! I grabbed the opportunity to give my nails some attention which they desperately needed.

  

I have a layer of acrylic (without tips) on my nails at all times, to keep them the same length. I used to have long, full on talons that changed colour several times a week; God be with the days as my Irish grandmother would say! Since I’m not well enough for that level of maintenance at the moment, I just get my nails filled in & shortened down when I can leave the house.

So, after getting my in-fills, I asked the technician to give my nails a couple of coats of this shade which I brought with me. I’m a fan of dark nails at any time of the year, but they seem especially gorgeous in Autumn/Winter. I like to keep them short & square when going this dark; I think it suits the shade and is also easier to maintain while my daily pain levels are high.

  

The shade I went for is 15 ‘red i am’ from Essence’s The Darks range. I bought it as part of my £20 Beauty Haul fromBeauty Crowd a while back. I really like it; it’s a deep rich shade that looks elegant against any skin tone. The polish itself has a nice shiny finish and lasts well when sealed with a topcoat – what more can you ask for £1.80!

Do you have a go-to dark nail polish?

Wishing you good luck & happy days,

Kindra x

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This post is not sponsored; the products discussed were purchased with my own money at prices available to everybody 🙂

Adult Colouring Books – Therapy or Fad?

Confession time: when I first came across the concept of colouring books for adults, I rolled my eyes and kept on scrolling. But the next time I was colouring with my 4 year old, it struck me that actually, I kept colouring long after she lost interest and went off to scold the children in her pretend nursery in her bedroom.

So I had to ask myself: why did I keep going when my child’s attention span had let me off the hook? Answer: there is something intensely satisfying about matching colours & turning something bland into something pretty. The activity itself is soothing; just enough concentration is required that you stop thinking about other things.

My life has been decimated by pain in recent years. What used to be chronic is now literally daily. So any activity or strategy that might lower stress levels a little or distract my mind from pain & related issues for a while is worth a try.

In that spirit, I ordered myself a few adults colouring bits & pieces to get started:

   
 

As my colouring starter kit, I went for:

Mermaids – Selena Fenech
Autumn Garden Colouring Book – De-Ann Black
BiC Conte Colouring Pencils (Tin of 12)
Staedtler Noris Club 326 WP20 Fibre Tip Pen In Wallet 20 Assorted Colours

   
   

I’ve had my colouring stuff for a few days and I love it so far. It’s a quiet activity that is oddly soothing and is a fun thing to do when I want my brain to stop thinking so loudly about pain, meds and oh-God-am-I going-to-hurt-everyday-for-the-rest-of-my-life type thoughts.

Will I still find it fabulous when the novelty wears off? I’ll do another post on a couple of weeks and let you know. I’ll also let you know how these particular supplies performed in case you fancy putting together your own colouring starter kit.

In the meantime, if you are living with a chronic condition & want are contemplating colouring, check out this post from fellow spoonie Sarah Willow (@SarahWillow87) who encouraged me to give it a try. For reviews of individual colouring books, check out the Colour with Claire website.

Have you tried colouring? Do you think it is an effective way to reduce stress or distract the mind from pain or worries?

Wishing you good luck & happy days,

Kindra x

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Check out my YouTube channel here.

My Lips Lie…

We all have those days when we turn to our makeup bags to help us conceal something; a late night, a hang over or skin that’s not looking it’s best. 

Me, I ask A LOT of my makeup sometimes. I often use makeup to conceal or distract the eye from the pain and nausea that are my constant companions every day to varying degrees. 

Lipstick/Tints/Glosses are a vital part of my ammunition in the battle to look remotely normal, on the all too rare occasions that I am out in the world among people. A pop of colour or a polished nude lip goes a long way towards making me look more alive than I feel. This cult classic is a staple in my makeup collection:

  
Benefit’s PocketPal has been a regular repurchase of mine since it was released years ago. I like to have the option of the clear gloss built in, which you obviously don’t get with the traditional Benetint bottle. I also like the brush for the the tint in the PocketPal; it makes for accurate application when outlining lips, which isn’t always the case with tints. 

Benebalm  has also turned out to be a winner. It can be worn alone or over Benetint. The packaging is gorgeous but also nice & sturdy for rattling around in your handbag. It smells of roses but not enough to bother me (artificial floral scents are not usually appreciated by my broken brain). It applies smoothly and makes lips feel lovely.

Benefit products aren’t the cheapest (PocketPal RRP £15.50, Benebalm RRP £14.50) but a little goes a long way with these particular items. The Body Shop has a lip tint that is similar in shade & consistency which I also like. They haven’t as yet created one with a gloss built-in (to my knowledge, if I’m wrong let me know). The Body Shop Lip & Cheek Stain (RRP £10) has a sponge applicator similar to those found in glosses. I prefer the brush in the PocketPal for precision but that’s a personal taste thing. It’s worth noting that with both the Benefit & BS versions, you must be extra sure to screw them completely closed before putting them in your handbag or else much badness will follow 😁

I  think on balance the Body Shop tint may be more pigmented. Both look intense in the tube which is probably why some people are disappointed with them; they were expecting a more intense shade rather than a diluted wash of colour. 

These products are buildable but I actually like them because they brighten the face without looking overdone. I love them for daytime use & when I’m struggling with pain/lack of energy, it’s handy to have a red lip option that doesn’t require liplining, blotting etc. Also it’s pretty hard to mess this look up; some days I need idiot proof products & looks 😊

What’s your go-to lip product for looking better than you feel?

Wishing you good luck & happy days,

Kindra x

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