Tag Archives: Migraine awareness

About Laura

Introduction

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

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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

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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.

Design

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)

Pros

  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

Cons

  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

Design

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

#Migraine and #Headache treatment often requires more than one approach. http://poht.info/2qNtzdg #MHAM #MHAMSMC

Welcome to Day 6 of Migraine and Headache Awareness Month.

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Since I was officially diagnosed by a neurologist in 2009, even beforehand, when I was lost with misdiagnosised and undiagnosed symptoms; I have opted for treatment other than that suggested by my past and present neurology teams. I would like to discuss the most effective treatments that I’ve personally experienced,

I have used the treatments below, alongside prescribed medication; since being diagnosed with migraine in 2009 and Idiopathic Intracranial Hypertension (IIH) in 2014. Please seek medical advice before trying/using any alternative therapies. They should be treated as complementary therapies and not replace prescribed medications. 

Diet, Vitamins & Minerals: 

I’ve tried vitamin and mineral supplements to help my symptoms, since diagnosis. We all know that we need these to stay healthy and it is usually the first thing we explore when we have chronic or recurring illnesses.  I have been prescribed supplements by my GP (family doctor), nutritionists and kinesiologists (I will discuss kinesiology later), since my migraines started; 20 years before diagnosis. Read this to find out more about whether we need them in our diet and who might need them.

Personally, I’ve had the best results from supplements with a high dosage; prescribed by trained therapists. I’ve tried more than I can remember, but my go tos are Zinc, EDA (fish oils) and Ascorbic acid (pure vitamin C). I also use a probiotic called Lactobacillus Sporogenes; after a course of antibiotics.

I have had varied success with diets and supplements; some causing a dramatic impact on my headache frequency and pain levels. I was even able to continue working, without increasing my prescribed medication. However, since my IIH diagnosis and the debilitating symptoms; making it impossible to work, I have less money, so use a good quality multi-vitamin and prescribed vitamin D tablets,

Kinesiology and Cranio Sacral therapy:

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I have had great success with kinesiology as a complementary therapy. There are different methods of kinesiology used around the world; deriving from acu points in Chinese medicine. I have experienced applied kinesiology, which is complex, so its best left to the experts, in this demonstration: Please watch this YouTube video.

My first practitioner used muscle testing to determine possible migraine triggers. I have been tested for toxins, deficiencies and allergies and have then taken supplements or followed different diets from the findings. I had the most success with a dairy free diet. However, my therapist felt that there was a physical problem and referred me on to a cranial osteopath, who also practiced kinesiology.

Seeing this therapist was a pivotal point in moving forward in managing get my migraines. She asked my body questions (yes, really!!), to find out how to treat my symptoms, at that moment, on that day. My body is very sensitive and could be incredibly tricky and secretive! The cranial sacral therapy was amazing; I loved  having my skull gently realigned. Although, we soon discovered that too much pressure could be detrimental, but with the mixture of treatments worked so well. There was even a visible difference in my skin tone after treatment. She even felt that the cause of my pain and new symptoms, in 2014; were linked to the dura. This  is part of the meninges, which, amongst other things, carries blood to the brain,  it turns out that she was almost right. Please refer to earlier nformation about  IIH.

Aromatherapy:

I use essential oils to help with pain relief and to aid relaxation. There are many oils to aid symptoms of migraine and headaches. You can read more about this here. I tend to use clary sage, lavender and jasmine for pain; ginger or peppermint for nausea and frankincense and ylang ylang for relaxation and meditation aids. However, this is a matter of personal taste and suitability for use on you. I tend to use a diffuser or pop a few drops on a piece of material. I used to use them in a bath, when I had better mobility and I would recommend this or massage, as the best way to benefit from essential oils. It is helpful to switch oils every few days, so that the body doesn’t build up resistance. Please seek advice when  using these oils.

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There are other treatments I use for migraine. I love to use ice and there are a few hats/masks on the market, with ice packs sewn into them. I would highly recommend the migracap, which I used constantly before surgery for IIH. I am able to use these in between brain and skull surgeries for my IIH; when I have migraines. They work very well with feet in warm, peppermint oil water. I also use sea bands to prevent nausea on journeys and I cannot go anywhere without my ‘gig’ ear plugs and sunglasses. All of these help me to manage my pain levels and work well alongside my prescribed medication. I would highly recommend complementary therapies to anybody. As first and foremost, you need to be proactive in your own care. Always do your own research and check that the treatment is safe for you! 

Chronic Illness Bloggers

#MHAM16 #MHAM Migraine Headache Awareness Month

I can’t believe a year has passed and we have arrived again at the 1st of June. Now to start another exciting month of raising awareness, support and hope for the millions of sufferers of migraine across the world. Yes, strictly this is America’s Migraine and Headache Awareness Month (MHAM), however, I’m British and I’m going to be supporting my American Migraine and Headache warrior friends every day from across the pond! I’ll be doing as much as I can, every day that I can, to support this amazingly well organised advocacy; for some of the most debilitatiting diseases in the world that are so misunderstood, misused and misdiagnosed. 


This year there will be ‘A fact a Day’ and I will try and blog about that fact as often as I can but if not then I will be sharing each fact on Twitter, my Facebook page and on my personal page. I will even try and spread the news as wide as I can in the spoonie community, via the amazing Conscious Crafties site. Mainly a shop, it sells crafts made by spoonies, like me, (people with chronic illnesses or disabilities) or their carers but there is an open Facebook page where information, articles and sellers blogs are posted. Here is the link https://www.facebook.com/consciouscrafties. I also have a wide audience on my Mission Migraine Twitter feed, with spoonies coping (or maybe not) with a range of illnesses; carers; doctors; nurses; life coaches and many others whom find our daily positive quotes interesting! 

As you can see, I am going to make sure I try and extend the reach of my blogs as far as I can; I am fully committed to raise as much awareness as possible all year round; so I love being able to join in with the US awareness month. We do as much as we can over here, but resourses are pretty limited, in my opinion, compared to the US community. So, last year I am quite sure that I was the only UK blogger to write daily. I am very poorly this year with my main condition, (IIH-a rare brain condition-main symptom-constant headache, that’s right I’m a BOGOF); so I won’t be as active as last year, but I will do my best.


So what can you expect? Every day I will share the fact of the day, accompanied by a pretty picture I expect! I also hope I will be sharing links to other blogs and retweeting at least once a day. When I’m well enough, I will write about the fact in different ways with a different style or viewpoint; aiming to  grab the readers interest and get people to share, share, share! So roll on Migraine and Headache Awareness Month (MHAM) 2016! I can’t wait to bombard: my friends, followers and readers who have yet to be found, with facts, my opinions and experiences. Sharing for Awareness, not sympathy- as always! 

Today, I’m just going to share the fact and leave you to think on it. Thank you for reading, I hope you will read and share as much as you can through the month. And be on the look out for some extra sneaky surprises! 


75% of the world’s adults had a #Headache or #Migraine in the last year. #MHAM