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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Migraine and Coping with Hospital Stays

A stay in hospital can be a uniquely stressful and unsettling experience. As is the case with most experiences, how we feel about it and how we cope with it varies widely from person to person; indeed, some people may not find it stressful or unsettling at all! For those of us who are living with Chronic Migraine, there are certain aspects of the hospital environment that cause anxiety, physical pain and worsening of our ludicrously wide range of symptoms. 


I recently had to spend some time in hospital for ICP pressure monitoring (also known as a pressure bolt monitor). This involved having a little hole drilled in skull and a monitoring thing (device? chip?) inserted. It was then connected via a wire to a laptop that recorded pressure readings over a period of time. Yes, it was exactly as much fun as it sounds and probably deserves a post of it’s own.

There were a few things I was able to do to make the whole experience more manageable in terms of my Migraine and the general ickiness of being in hospital, so I thought I’d share them in case they’re helpful to others in the future:

Hospitals are loud, bright and they smell weird, all of which can be problematic for a person living with Chronic Migraine. Don’t neglect the obvious – make sure that you pack earplugs and an eye mask (or some dark light material to fold and cover your eyes with) to help you block out light and sound when needed. I also bring a 4head stick as it cools the forehead in a comforting way, much like a wet cloth but without the need for water. I haven’t really found an effective way to deal with weird hospital smells but a favourite hand/body lotion or essential oil can be distracting.

Fasting before surgery can trigger a Migraine attack – I once fasted before a minor surgery and was in the midst of such a severe Migraine attack by the time I was wheeled into theatre that the medical staff refused put me under general anaesthetic (presumably because they were concerned about vomiting). So this time around I voiced my concern in advance and had a IV drip attached to avoid dehydration while I fasted. I also made sure that the medical staff were OK with me taking my rescue meds whilst fasting if I needed to…of course, I did need to.

Don’t expect hospital staff to fully grasp the severity of Migraine pain – sadly, some won’t grasp how much pain you’re feeling or the extent of other debilitating symptoms unless you spell it out for them. Even in a Neurology hospital, I found that certain members of staff saw me crying and assumed that I was scared of surgery (I wonder if the ’emotional woman’ stereotype flitted through their minds..?) when in fact the tears are just what happens when pain reaches a certain high level for me. I don’t mind saying that if I’m crying, that means the pain is causing me to panic and is VERY high indeed. Next time I go into hospital, I’ll make a point of telling my day/night named nurse how my Migraine tends to operate and what my painscale is like, so when the next full blown Migraine attack hits, we’ll already have a plan in place.

Even the most efficient wards might not have a ready supply of your meds so I recommend taking with you a supply of every medication you use, enough to cover your entire hospital stay if you already know how long it will be. Of course wards can generally get hold of what you need but it can take time and if it’s an abortive or rescue medication, you might need it urgently with little warning. 

Migraine friendly snacks – if you need to eat something to help keep your meds down during an attack, it’s really useful to have your own little supply in your bedside locker. For me that tends to be cereal bars and cheesy cracker type snacks as they don’t require a fridge and help with the evil nausea that can be caused both by medication and the Migraine attack itself. 

Migraine can make processing a chunk of information in one go difficult. The ‘brain fog’ that goes with Migraine and other conditions such as Fibromyalgia means that we’re not always able to absorb information as quickly or well as we’d like. I recommend having a pen and little note book handy to jot down the names of medical staff and what they say. It’s also completely ok to ask for information to be repeated, either just for you or in front of your next of kin.

A couple of points that apply to all patients whether they live with Migraine or not…

Being in hospital can be stressful so consider in advance what might be soothing for you. Your favourite books or games on your tablet, colouring books or some meditation podcasts to listen to on headphones might help. Have a chat with your friends and family about who should visit and when, to help you stay upbeat and provide you with emotional support or in the case of my husband and best friend, a healthy dose of mockery.

You are a patient, not a prisoner. The feeling of being stranded and out of control while in hospital can cause real anxiety and upset. Sometimes when you arrive on the ward, the person greeting you may launch into a big list of rules including serious emphasis on visiting hours…don’t let this freak you out. The last ward I stayed on had limited visiting hours (2pm-7pm). I was going to be having surgery in the morning and while I appreciated that the rules were there to keep things quiet for patients who were all having some kind of Neuro or spinal surgery, I wanted to see my husband before going to have my skull drilled! This was arranged by my telling the nursing staff that I wanted this and by my husband turning up and asking politely. I also made it clear that I’d happily leave the ward and go to the hospital coffee shop with my husband if he wasn’t allowed in to see me before surgery. I had no problem sticking to visiting hours at all other times during my stay and I genuinely wouldn’t have objected to the rules being stretched for another patient if they were feeling anxious or upset pre or post surgery.

Keeping in touch with the outside world can be really comforting for anybody in hospital. Personally I found texts and Facebook messages/updates to be a real lifeline – hospitals seem to have their own time stream and a day can feel like a long time. So make sure your phone and charger are fully functioning and within arm’s reach!

Do you have any tips for surviving a hospital stay when you live with Migraine or any other chronic illness?

Wishing you good luck and happy days,

Kindra x

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