Top 5 tips for preparing for a neurology appointment

The clue is really in the title for this. Prepare. I believe preparation is key to a successful doctor’s appointment. Appointments with your neurologist or headache specialist are extremely important in aiding your recovery. Hopefully these tips will help you make the most of the short time you have with your specialist.

1. Make notes

A couple of days before a big appointment I like to write down a few short notes for the appointment so I have something to refer to when I’m there and my mind inevitably forgets everything. Write down what you wish to discuss, any questions you may have for your doctor or any other notes you feel may be beneficial for you. Don’t be afraid to take out your notes in the appointment and refer back to them. Doctors will respect your organisation and the fact you have thought about the appointment in advance. Nothing says you are taking your health seriously like crossing off your own points of action notes during an appointment.

It can also be useful to jot a few notes down during the appointment. For example, the name of a new medication they would like you to try. It may take weeks for their referral letter to reach your GP. If you have the medication and details surrounding it written down, you are sometimes able to get your GP or healthcare provider to prescribe it to you sooner.

2. Think about what you want to achieve

I don’t mean sit and think about what you want to achieve in life. By all means do that in your own time. Sit and think about what you really want to get out of your appointment. What is the reason and the purpose of this appointment? What do I want to get my doctor to understand? What new medications do I want to discuss? What questions do I have that I need answering? Thinking carefully in advance of your appointment really helps to feel more in control and relaxed going in. If you know what you need to say and what you want to discuss it should help you guide the appointment in the best direction for you. It’s far more stressful if you turn up and haven’t thought about what to say. The appointment is likely to be short and you leave feeling unsatisfied or like you haven’t been listened to.

3. Bring your file

I always think with these kinds of appointments you can never bring too much with you (information wise). Leave the kitchen sink at home! Bring your medical file/notes, headache diary and anything else that you think might help. This is particularly important when seeing a new doctor. It helps them catch up on your medical history quickly and saves you having to remember every tiny detail, like what dose of medication you were on 18 months ago.

Headache diaries are so important for neurologist appointments. They are a great aid for both the patient and the doctor. They should enable you to show your doctor a great deal of information about your headaches/migraines, such as how often they are occurring and their intensity (full blog post on headache diary coming soon). Make it easy for them with a clear summary of your headache diary. Remember, you live and breathe your migraines, they don’t. So help them out and make it as easy as possible for them to understand what’s going on. Nobody wants to waste a whole appointment trying to recall how many migraines they have had in the last month for example. Know your numbers and display them clearly.

4. Do your research

It’s always fun to outsmart the specialist right? I have been known in the past to be a bit of a migraine geek in appointments. Not in an annoying teacher pet way but in a “I know what’s happening with migraines in 2018 and what treatments are available, so don’t mess with me kinda way”. Do your homework. Look into treatments both medical and alternative. See what looks like it might be right for you. This is something I would recommend regardless of whether you have an appointment coming up or not. I have found in the past it really helps if I understand some of the terminology or medication the doctor mentions prior to the appointment.

5. Bring someone with you

I cannot stress how important and beneficial I think it is to bring someone along with you to a neurology appointment. Whether it’s a friend, partner or family member, having an extra pair of ears in the room is so useful. Appointments are often exhausting and can be filled with so much information. It is hard to take everything in at the same time as participating in conversation with your doctor.

These conversations can be tricky at the best of times never mind if you have a migraine at the same time. Having someone with you who you trust and cares about you is also a great emotional support and comfort. They can often speak up for you when you have perhaps forgotten an important detail or for those tricky times when a doctor is perhaps being dismissive. It’s important to find the balance with them not suddenly bulldozing over your appointment but knowing when it’s appropriate to speak up on your behalf. Brief them beforehand too on what you’re expecting to get out of the appointment.

I really hope these tips help you prepare for your next appointment. They can be used for any doctor’s appointment but they are especially worth thinking about for those “big” appointments. I often take a list of notes into a regular GP appointment with me now just so I don’t forget anything.

Good luck at your next appointment and let me know if you have any other top tips?

What does migraine actually feel like?

Everyone’s experienced a headache at some point in their life. A tension band across the forehead or an annoying dull ache. Migraines however are very different.Yes, they often have a “headache” component to them but this is just one stage of a migraine attack and even this headache phase could not be compared to an “everyday” tension style headache. Migraine is a complex neurological disorder which can present an array of debilitating symptoms. At present, there is no cure for migraine.

I want to share with you what Migraine actually feels like in the words of migraineurs from around the world.

Migraine feels like…

Everything is too bright and everything is too loud.

Vomiting until you have nothing left.

A heart misplaced inside your head.

Your head is in a vice and it has been cranked up as tight as it will go.

My whole body is one big bruise.

The room is spinning.

The worst hangover EVER.

Slowly twisting a corkscrew into my temple while a sledge hammer pounds the other side.

Torture.

The initial impact when you hit your head or body part on something but the pain doesn’t subside.

You have been drugged.

I’m having a stroke.

Someone took a frying pan to the back of my head.

Wondering through fog in an unfamiliar place.

Not being able to feel my limbs.

Someone is trying to split my skull open with an axe.

A hot knife in the eye.

I’m melting.

Dying slowly and painfully.

Immense guilt and countless “I’m sorrys”.

You are so weak and heavy you cannot move.

Numbness spreading down one side of my body.

Not being able to speak or find the right words.

You want to chop your own head off.

If I cry anymore from the pain, my head will actually explode.

You are totally alone.

There are rocks in my neck.

I’m totally misunderstood.

Someone cut off the top of your head, poured in some razor blades and then shook your head around.

An ice pick through the eye.

My brain is on fire.

It is never going to end.

You are a burden.

Going blind.

I’m burning inside and freezing on the outside.

My right eyeball is being dug out with a rusty spoon.

Lightning strikes to the head and a roller coaster in your stomach.

Someone is digging their fingers into my skull.

Please share with friends, family and non-migraineurs to help explain and educate to people what having a migraine actually feels like. Use this to raise awareness that migraine is #notjustaheadace.

My experience with Topiramate

  *DISCLAIMER*

I am not a doctor. I cannot tell you what you should or shouldn’t take for your migraines. For medical advice you should always seek the advice of a doctor or health care professional.

I want to share my honest experience of Topiramate with you but I’m by no means suggesting you shouldn’t try it. What works for one person’s migraine treatment is completely different from what works for someone else. Topiramate often gets a bad rep in the migraine community but it really can be an effective migraine preventative for some people.

I have always tried to be careful on Instagram when individuals ask me about the drug as I don’t want to scare anyone off something which could potentially be a game changer for their migraines. Topiramate was not for me, but it could be for you!

Topiramate (Topamax) is an anti-epileptic drug commonly used as a migraine preventative treatment.

I started Topiramate in August 2015 and stayed on it until January 2017. I was initially on a 25mg dose and slowly worked up to 100mg twice a day. The only other preventative I had tried before Topiramate was Amitriptyline.

When I look back over the time I was on Topiramate, all I can think is wow, we really will put our bodies through an awful lot in any attempt to get better.

Topiramate never seemed to make a difference to my migraines. It didn’t work as a preventative in my eyes as it didn’t change my daily head pain or massively reduce my number of migraine attacks in a month. I stuck with it for a long time hoping that when I eventually was on a high enough dose, I would see some relief.

Relief sadly didn’t come for me. Instead a whole load of unpleasant side effects…

It started quite mildly on the lower doses. I would get pins and needles in my hands and feet. My taste changed and certain foods I had previously enjoyed tasted “off” to me. I also could no longer have fizzy drinks. They tasted so strange and horrible. (you would think not being able to drink fizz for 18 months would be a sure way to kick the Diet Coke obsession... sadly not!) I think I will forever love a Diet Coke and an orange Fanta!

Pins and needles and no fizz are really not a big deal when you’re fighting chronic pain but as my dose of Topiramate continued to increase, so did my side effects.

I began to have no end of stomach issues and started to lose weight. At some points I was having daily diarrhoea as a side effect of this drug. For some, Topiramate can be a massive appetite suppressant. It did suppress my appetite but I think I lost weight mostly because my body wasn’t absorbing food and nutrients correctly (hence all the diarrhoea).

As you can imagine it was a really unpleasant side effect to have to deal with on top of the migraines. I started to wonder whether it was the Topiramate unsettling my stomach or the migraines itself.

I lost just over a stone whilst on Topiramate. A stone I didn’t need to lose. My friends and family started to notice and of course were concerned by my increasingly thinning frame. I couldn’t get over how my once strong tennis legs were wasting away to thighs that didn’t belong to me.

I was struggling to maintain my weight so I made a real effort to try and put some weight back on (alllll the snacks). I’m lucky that it was something I hadn’t had to worry about before. I have never been under or over weight. I’ve always just been “normal” with a good appetite and a love of food.

My headache practitioner nurse did suggest when upping the doses to try and have smaller more regular meals (4-5) a day instead of 3 but I actually really struggled with that. I mostly continued with 3 meals a day but tried to add in some extra calories where I could.

Another fun side effect of Topiramate was that my hair began to fall out. I have always had really thick hair so nobody really noticed a massive change but clumps would fall out when I was in the shower and I could feel the weight of it was so much lighter.

The last side effect that Topiramate had on me was cognitive difficulties. I only experienced these on the higher doses of Topiramate.

My memory became poor and I struggled with word recall. I would get so embarrassed when I would be speaking to someone and I suddenly couldn’t remember a word. It’s a horrible feeling. You feel so stupid. Migraines already give you brain fog, you don’t need anything else slowing you down.

I also had to stop driving on Topiramate. This took away another part of my independence that migraines hadn’t taken yet. I clearly remember driving back through Richmond Park on my own in the car and feeling so spaced out and weird. It’s a feeling I struggle to put into words but if you have ever been on Topiramate and had cognitive difficulties I’m sure you will be able to relate. I kind of felt like I wasn’t really in the car and everything was just moving around me. I knew from then that I shouldn’t be driving as it wasn’t safe.

Why did you stay on it for so long you may ask?

Two reasons.

1. I was told it was the drug that “keeps on giving”. I thought that when I eventually got to the right dose that I would get relief from my migraines and all would be worthwhile.

2. The fear that it might be worse if I come off it. Although I was convinced Topiramate was not helping my head in any way, I was worried that it might be dampening something or slightly taking the edge off. I wasn’t prepared to come off and it to somehow be worse than it already was.

I finally came off Topiramate in January 2017 after seeing a new neurologist who was concerned about the effects the drug was having or my weight and the rest of my health. He was convinced it wasn’t working for my migraines and it was time to try something else.

I was advised like with most preventatives to come off it very slowly. I was on a high dose and initially weaning your body off such a drug can spike side effects so it’s best to do it gradually.

Within a few months my side effects pretty much vanished. My upset stomach stopped. I became the hungriest girl in the world and slowly put some weight back on. I could drink Diet Coke again and form a coherent sentence all at the same time. My hair also began to thicken back up. Over a year after coming off Topiramate I am finally driving again too!

Success Story: Kristie

Kristie has turned her life around and is now 1-year migraine free! I’m so excited to share her story with you all. Don’t forget to check out her Instagram HopeVsHeadaches page too. She is one inspiring lady!

“Hi, my name is Kristie and five years ago I was travelling the world as an air hostess living the dream. This was until I became bed bound with back to back chronic migraines that ruined my life. As a result, I lost my job and I thought my life was over.

Initially, I tried all the traditional migraine medications, preventatives and treatments possible. You name it, I had tried it from nerve blocks, botox injections, beta blockers, trigger point injections and more, unfortunately with no success.

My turning point came when I was told at an appointment "you will just have to learn to live with the pain". Not a chance I told myself.

So, from that day onwards, everything changed.

I started with adopting a completely new mindset, one that was initially taught to me by the book "The Secret" by Rhonda Byrne. Here I learnt about the law of attraction and what you think about most you attract. So, from here, I changed my thoughts and as a result, my world began to change.

I then become a student of self-taking every single opportunity to educate myself on all areas of health and healing.

I read countless books, learnt to meditate and visualise a healthy future for myself daily, re-evaluated my beliefs around healing, taught myself about nutrition and how to use food as medicine through adopting a clean whole foods plant-based diet, learnt to love myself exactly where I was, prioritized self-care practices and simply tried to find more balance in my life in order to let my body heal naturally.

Through patience, a positive mindset and the courage to step outside of my comfort zone I am now pleased to say that I am now 1 year completely migraine free!

By taking my health back into my own hands everything changed.

And do you want to know what the funny thing is? Pharmaceutical and western medicine had nothing to do with it so it proves that YOU have the power to get well all by yourself.

As a result of my new passion for all things health, I qualified as a Health Coach at The Institute of Integrative Nutrition so I am now able to coach, guide and help others begin their own healing journey too. I now have a new life with more passion and purpose than I ever imagined was possible.

I really hope my story inspires you and next time a doctor tells you that "migraine is a neurological disorder with no cure", don't believe them. It can be done. YOU CAN DO IT!”

Feeling guilty for feeling good

So, I’m up, I’m dressed and I even made an effort with my hair and makeup today. I’m excited to go out. Anxious as I know this could end at any moment. I pack my bag with my meds just in case. I go out and I have a great time until...

The guilt. The guilt for feeling good and enjoying myself. I’m ill, I’m in pain. I’m not meant to have “good days”. I constantly battle to explain to people how ill my migraines make me. How much pain I’m in and how debilitating they are. But here I am, out and feeling good. My pain is low today. I should be celebrating and jumping for joy. Instead I’m worrying what people will think when they see me out having a good time. I assume they are judging me for not seeming “ill” enough. “She seems ok to me”.

All of a sudden, I feel like I should be at work or doing something useful and contributing to society. Not having an ice cream in the sunshine. I should be cherishing this day and my low head pain but instead I feel weighed down with guilt.

Does this sound like you?

This is me whenever I have a good run with my head. Whenever I get a glimmer of hope that I could actually recover. I waste so much of that time feeling guilty for feeling good.

How silly right?

Will you chill for just a min. You just started to feel better. Like a week ago. And you have been in pain for months and months and well let’s face it... years. You are allowed to feel good and go out and enjoy yourself. 

Celebrate the good days! I can’t stress this enough. You have enough time in bed feeling rubbish. You are allowed to feel well. You are allowed to have low pain. You are allowed to recover. You will do all the things you feel you ought to do in time.

Stop worrying about what others will think of you and start enjoying your good days, good hours and all those good moments in between. Feel good, not guilty!