Tag Archives: IIH UK

About Laura


Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.

After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.

Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.

She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face. Continue reading About Laura

Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.

So why the change of heart?

In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.

What is a support group? 

  • A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
  • Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
  • A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
  • A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
  • A bridge between medical support and self-help


Why I joined online support groups

Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.

So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions.  I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.

Finding the right fit

I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.

DesignWhen I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!

When it no longer does what it says on the tin

In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.

But I couldn’t get away from the drama.


Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.

As an empath, I’m susceptible to getting  too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.

Would you benefit from an online support group? 

I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)


  1. Gaining self-worth or a sense of purpose
  2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
  3. Getting support in times of stress, depression or anxiety
  4. Being anonymous allows you to vent or discuss feelings openly and honestly
  5. Staying motivated to manage your physical illness or mental health
  6. Gaining control of or feeling hopeful for the future
  7. Raising awareness of invisible illnesses, disabilities or a specific disease
  8. Getting practical feedback about treatment options, benefits or worker’s rights
  9. Feeling empowered by supporting others or working successfully in a team
  10. Accessible when it suits you, even in your PJs, leading to more participation


  1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
  2. Increased negativity due to constantly discussing aspects of your illness or disability
  3. Interference on posts with unhelpful comments or incorrect information
  4. Written communication means that inference or tone can be easily misjudged
  5. Participation online may compound isolation from other friends or family
  6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
  7. Reinforcement of negative emotions and negative remarks to other participants
  8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
  9. Comparisons of whose condition or experience is worse
  10. Possible use the environment to prey on vulnerable members


What is needed to create a good social support network? 

  • Those running the group must be very clear about what support is available and when.
  • Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
  • Conflict needs to be handled professionally.
  • A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

Do online support groups work? 

The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.

In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.

When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.

Finding my own way

I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.

Chronic Illness BloggersReferences

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.


In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!


Before I continue, I wanted to address a question Joel and I get asked so often:


As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!


When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!


2017-Looking amazing on oxygen all night due to low SATs


The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.


During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.


Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:








Chronic Illness Bloggers

IIH and skull surgery: part 2 #IIH #brainandspine

Skull Surgery

It sounds much worse than it will be. This is the next step in of my treatment plan. I have Idiopathic Intracranial Hypertension (IIH) and this is my journey,

To prepare for surgery; I’m resting; well, resting as well as anyone with needtodoitis can! I am on strict instruction to allow my body to be in the best condition possible, for my surgery on Thursday (15th June 2017). I’m also owning up now, to not fully understanding the recommended medical document, at the end of this blog. 👀

Firstly, if you are new to my blog or need a recap please read this post,, written after my first skull operation; a Styloidectomy. (I just re-read it; I’d forgotten some of this-yikes)!! Please be aware that there’s a surgery scar in case you’re squeamish.


In January 2016; I had a Styloidectomy; the removal of the bone behind your ear; called the Styloid Process (red area on the diagram). My right Styloid process was removed by The Wizard; my ear and skull surgeon and one of the magical team I’m under in Cambridge. I have constricted veins in my head, mainly the jugular vein; affecting blood flow from my brain; leading to a build up of pressure in my skull. Following that op, I was able to have a two way conversation again; after two years of complete brain fog. Everyone noticed a difference, but I was still in 24/7 pain and unable to walk unaided. My memory was still poor and I still struggle with words,

img_7354At the time, we thought that the next step was to have a stent placed here. Due to being one of the patients to have these procedures; immediately after the trial group; I have to be prepared for rules changes. I had stent surgery of the left transverse sinus in September 2016, whilst they waited for their paper to be published. This is now available and they are  the first team in the world to use these methods, for this rare brain condition. You can find out more about all of this, in the ABOUT/BIO drop down menu: what is IIH?  

I’m lucky enough to benefit from what they have learnt in the trial. They found that placing a stent in the jugular vein, after removing the Styloid processs; was less effective than expected. But, once a stent is in place it can’t be moved; so patients often had the mastoid process removed, to relieve some of the pressure on the vein.



This led the team to the conclusion that it would be more effective to perform a mastoidectomy before stenting here. This would make room for the jugular vein to take the stent more precisely and possibly mean that stenting wouldn’t be necessary. I’ve highlighted both the Styloid and Mastoid process, in the diagram above.

I have only found articles about mastoidectomys for other conditions; as both of the surgeries used; aren’t new procedures. What the Cambridge team have done, is to think outside the box and are use tested surgeries in new ways; helping IIH patients with restricted venous outflow. I am referencing one of the clearest (and least scary) articles, to try and explain the procedure; although this is for other conditions.

This procedure is usually performed when a patient has: had infections that have caused hearing loss, tumours or for patients being fitted with a cochlear implant. The mastoid cells and process form part of the temporal bone. A mastoidectomy traditionally removes an area of mastoid cells; which which has a honeycomb structure, due to bone being formed around air pockets. However, the mastoid process is below this area; highlighted in the first diagram. This bone is denser and  connected to the C1 vertebrae, therefore attached to the top of the spine. This video explains the anatomy of the C1 vertebrae. Cervical Spine anatomy

There are many veins, nerves and muscles attached to the C1 vertebrae, which is essentially a pivot; allowing us to extend our neck and nod. The mastoid process is the outer part of the skull; attached to the occipital area and provides attachment for many muscles. Thankfully, I have complete faith in The Wizard and he’s assured me, that if anything; he’s conservative with how much bone he removes. He will drill the bone just enough; to make room for my jugular vein to work more efficiently.

Risks and Further surgery

It’s a similar surgery to the styloiectomy and has the same risks: which aren’t life threatening. There’s a possibility of having a weak shoulder/arm or a hoarse voice  following surgery. Despite the serious nature of the operation; I will be only be kept in overnight; unless there are complications. I will have a drain in overnight; used to   try and prevent side effects. In the future, I may need a stent here; it’s been the plan since the start, after all; but we have to focus on one step at a time. If you wish to know more about the anatomy and a typical mastoidectomy; please read this article

I’m sure I will be back very soon with some amusing anecdotes from our little adventure. Thanks again for stopping by; please don’t hesitate to ask questions. Remember though, that this team are the only team in the world treating patients like myself in this way; so I may not know, or be able to find the answer.


Chronic Illness Bloggers

Normals illness vs Chronic illness. What happens when Carers get ill?

Continue reading Normals illness vs Chronic illness. What happens when Carers get ill?

Day 20 #MHAMBC #MHAM Who inspires you by never giving up despite their headache disorder?

I have been pondering this question for 2 hours now and I can’t pinpoint it to one person so I’m going to write a list of people of give me strength in both the migraine and the iih world. They are people that I have connected with initially through Mission Migraine and then another closed migraine support group and the IIH UK support group on Facebook and I speak to them online daily, sometimes on the phone and some I have been lucky enough to have met or will meet soon. I will give a brief reason as to why they inspire me. 


  • Kate Bestwick-founder of Mission Migraine; this lovely lady saved my life one day by writing one small entry in a post in another group (where I was not very happy or supported) about her new group that she’d started. She suggested that I started to meditate and I now do so every day. She went through tough times last year but with CBT, perseverance and determination (and a hint of stubbornness) she remains our fearless leader and speaker of many wise words. Not to be stopped by daily headache she goes to the gym, works part-time, looks after her young children and still manages to stay beautiful even sticking her tongue out! 
  • Michelle McGowan-admin of Mission Migraine; this crazy chick doesn’t let the migraines beat her down: she sticks two fingers up, takes her bitch mints (painkillers) and gets on with her day; unless it’s a killer one! She is always there to check up on you and remembers so many members birthdays it’s unreal. She posts often about her symptoms to raise awareness of all the different symptoms that come with migraine and to ensure that everyone knows: it’s not ‘just a headache!’
  • Janey G IIH- this caring and wonderful lady found me through the support group. She has been through tough times lately with dizziness and eye problems (part of the deal with IIH and the meds that come with it). She’s brave and strong and tries to carry on regardless. She shares my blog and shows me constant support. We haven’t met yet, despite living relatively close but we will as soon as I’m well enough to travel. She seems to know everyone in the group (?) and is great at campaigning for rare disease campaigns.
  • Suzy Hesketh-this lovely lady runs a closed support group that helps me and many others vent when things get too much. I have been so lucky to have met her before my symptoms got too bad for me to travel. She makes me laugh despite battling many conditions and her strength and courage are admirable. She has been on the other end of the phone when I have had days when I can’t stop crying and she understands life with chronic illness in all it’s entirety but still manages to never give up! Apparently she is coming to stay with me in October! 😜
  • Kim Sklinar- a Mission Migraine member; Kim contacted me when my symptoms took a huge turn for the worse in September 2014. She lived about an hour away from me and wanted to visit with her fiancé. We all got on so well, it felt like we’d known each other for years! Mark, her fiancé really helped my husband by sharing his feelings on living with someone with a chronic illness. Kim is inspirational in the way she drives her own business and strives to be a migraine advocate too, being an advocate for one of the British  migraine charities. She regularly contacts me to see how I’m doing and I’m hoping to attend her wedding reception in a few weeks, where she has provided a migraine room! 
  • Katie Mercer- I found Katie in the early days of joining the IIH forum and, although she only lives a short drive away from me, we still haven’t met. She has supported me through every step of my journey of being diagnosed with IIH and understands having migraines too! She supports me by sharing my blog nearly every time I post and she always has a supportive comment to drive me through my tough days. She has recently inspired me by walking from London to Brighton (60 miles) in aid of MIND charity despite still suffering regular headache and migraine symptoms. 
  • Kath Conway- Kath has supported me through every moment of my journey since I’ve met her. Initially with advice about work and pensions and then more significantly, helping me deal with my loss of mobility and having to learn to use a wheelchair and a stick. Kath suffers from Hemiplegic Migraines that leave one side of her body paralysed and can often leave her in bed for days unable to even talk properly, let alone do anything. Yet, she remains mostly positive, funny and encouraging and has got me through many bad days. 

There are so many more names to mention such as Emma Nugent, Julie Donogue, Norma Ann-Dann, Diane Williams etc etc….. This blog is my way to say thank you for all the support, advice, encouragement, care, understanding and friendship you give me. Without you, this blog would not be possible and would never have been started. You inspire me to inspire others. Xxx


Day 11 #MHAMBC #MHAM How do I help others have hope? I don’t need a reason; It just happens!

This question is one I know the answer to immediately but is probably going to be the hardest blog post to write yet. I’m just going to say and get it out there and then I will explain it a little more. It’s hard to say because I’m not the kind of person who likes to talk about myself in this way. I’ve had to learn how to do it in interviews in the past, but other than that I don’t really do it.

The way I help others have hope is by being me!  There I’ve said it. I’m so full of positivity through such a bitch of a situation (and I am only that positive because of my husband and children and close friends that keep me there by the way) and I decided to write about it. I only ever chose to write about it because I wanted to raise awareness and find myself something that I could do when all the things that I loved doing were slowly being taken away from me because of my illness making it impossible to do them. I never write or share posts for sympathy!

My blog is read by a range of people and I have had a whole load of feedback from them about how I have inspired them with my positivity and so I guess that is what this blog is about.

  • My friends- these were the first people to read it. They are generally talking to me about my blog in terms of how I cope so amazingly with such a tough situation and write with brutal honesty but still keep a sense of humour that it gives them hope for me and my family and our future. I have even had suggestions that I should write a book when I’m well because my writing is so powerful. Some friends, some that I don’t even know so well in some cases, have since begun sharing their own stories about different things they were going through and how our positivity gave them inspiration whilst coping with their own situations.
  • My fellow sufferers-next I shared my blog with migraine sufferers through our MIssion MIgraine Facebook page and my IIH support group. Fellow sufferers saw similarities between their life and mine. Some couldn’t believe how unwell I was and how little treatment I was getting whilst I wait and wait for my specialists to come up with the right treatment plan; yet still I remained positive. Friends I had already made gave me hope in the comments they wrote to encourage me to keep writing and that ricocheted into hope spreading to other sufferers who could see that if ‘I could do it, they could’!
  • My peers-other blog writers have given me amazing feedback about how my positivity shines through in what must be a very difficult situation. I have even been able to share ideas and ways to tackle depression and lack of hope to others in chronic pain and I hope as my followers grow that I will be able to continue to do this where I can.
  • Most recently-my husband’s peers and colleagues. He spoke about our story as part of Mental Health Awareness Week. You can read the transcript of this talk and my observations around it here https://laughingwhileyourecrying.wordpress.com/2015/05/19/why-does-sharing-our-story-matter-should-we-just-tell-friends-and-family-or-should-we-share-with-peers-colleagues-and-other-sufferers-too/ he has had many people speak to him about how his positivity has given them hope and I have had a few new followers and even a couple of messages.

My role as Tweeter for Mission Migraine has allowed me to reach out to even more people and now joining in the blogging challenge has extended that even further. I am gaining hope by reading posts from so many experienced advocates and great bloggers and I hope that my blog is inspiring other participants too. Even though I’m from the UK; Mission Migraine is an open group and has many members from the US and that is why I decided to join the blogging challenge. It has opened many new doors labelled ‘hope’ for me and so I just hope that my blogs can return the favour.

The Migraine and a Headache Awareness Month Blogging Challenge is organised by The American Headache and Migraine Association