Osteopathy vs Physiotherapy

I often struggle with weakness and pain in my arms and last month was no exception, it was one of my worst episodes to date. I woke up with intense nerve pain down my right arm. I usually feel either pain or weakness, not both together. Normally I would rest my arm in a sling when it feels weak and heavy, but I couldn’t bend my arm at the elbow without excruciating pain. Just for a moment imagine your dominant arm and hand being useless…a bit like if you had your arm in a cast.

The GP recommended an MRI on my neck as it’s been a while since the disc replacement in my neck has been checked, maybe there was some impingement going on but fortunately although more degeneration, there was no evidence of impingement thank goodness. I couldn’t even lift a bottle of water…I had mild relief by using a cast on my arm to stop me automatically bending my arm.

So, what’s going on, is it Fibro or Neuropathy or both and what does one do? So far, this year is testing me mentally and physically, but I will always push through because what else can one do.

My GP recommended I get some physio for my arm, someone that understands chronic pain but that’s not as easy as it sounds. I was given a list of physios to call in my local area (didn’t want to travel far) to call and arrange to see someone. One physio admitted he has limited experience in dealing with Fibro patients, because flare ups can happen with treatment therefore treatment can be a challenge. Then that got me thinking, it’s not  physiotherapy I need it’s Osteopathy. So, what are the main differences between a physiotherapist and an Osteopath?

Physiotherapy helps people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice. They maintain health for people of all ages, helping patients to manage pain and prevent disease (Chartered Society of Physiotherapists).

Osteopathy works with the structure and function of the body. It is based on the principle that the well-being of an individual depends on the skeleton, muscles, ligaments and connective tissues functioning smoothly together. Osteopaths use physical manipulation, stretching and massage

• increase joint mobility,
• relieve muscle tension,
• enhance the blood and nerve supply,
• and to help your body’s own healing mechanisms

What’s the difference between physiotherapy and osteopathy

My first appointment was an hour long and we spent 50 mins going through my medical conditions and interventions. We talked about my diet and how I pace myself on a daily basis, we talked about movement and looked at muscle groups on the charts that were posted on the wall. I really felt like we covered a lot of ground before he examined me and proceeded with some hands-on therapy on my neck, shoulders and upper back for the last 10 minutes. I have had three 30-minute sessions so far and now have use of my right arm.

The thing is Fibromyalgia is such a complex condition and very unpredictable. Whilst I am having treatment for my arm, my neck, shoulders and upper back are all getting worked on. Finding your own path for treatment of this complex condition is a unique bespoke experience.

Lessons learnt

In my opinion some of the best treatments will usually cost money, Osteopathy is rarely used in the NHS. If you are not in a position to seek out complimentary therapies, I urge you to challenge your health providers regarding their knowledge about Fibromyalgia.

A letter to me

Wow, Andie you made it through another year, and what a year its been, you should be proud of yourself. The start was the most difficult for you losing your gran nephew; I guess that set the pace going forward because grief can sit with you for an endless amount of time. I know you are an empath and feel deeply other peoples sorrow and joy. That painful experience has been showered with the love you feel for his twin siblings, your godchildren, what an honour…

 I know how difficult it was supporting mum through her surgery last April all the while trying to hold yourself up, feeling as if you have to be there for her no matter what, just as she has been there for you. That traumatic experience you had when you had that MRI in May had a lasting effect on you I know, seeing your life flash before your eyes wishing you had told everybody you loved them before setting off that day makes you appreciate what you have been blessed with. These last two years plagued with Long Covid symptoms, you have finally caught a break and that is down to you. You are Stronger than you think so don’t forget to keep reminding yourself daily.

What a beautiful summer you had celebrating 30 years of marriage but I know this took a toll on your body, creating those memories was the goal and you achieved that despite your silent struggles. The opportunity you had to shoot some images for Ross Willsher’s new book ‘Celebrated’ was awesome. It’s a shame you ended up back in hospital with multiple problems but you kicked arse and came back on top like you always do.

Sorry for the loss of your aunt Connie, so many sadden hearts… I know Covid stopped you and your mum from riding with the family but just remember how you helped in every way you could, Aunt Connie knows this and is now resting in eternal peace with her husband.

When Covid hospitalised you the first time and you had those horrible thoughts of not coming home, I can understand why the thought of catching it again terrified you. You are strong and even stronger with such an amazing support network around you, lean on them…

Well Christmas was a mix of emotions for you especially going to family for Christmas and not having to do anything that was a blessing. However, drama is not part of your DNA and therefore does not agree with you physically and mentally. You broke, but broken things can always be mended. Seeing all those ‘Happy new year’ messages has left you troubled, but well done for getting your head back on straight and seeking support where you need it.

Being outside a few times a week I can tell has cleared the way for positive thoughts and a strong desire to make this year a good one. Do not be disheartened with your current situation, 5 days in bed feels like a lifetime I know but you have been here before and your track record for getting through these challenging times is 100%.  Therefore, when you are back on your feet lets go again.

YOU ARE STRONG NEVER EVER FORGET.

All my love x

Feel the fear and do it anyway

After such a wonderful and busy summer, it has been a silent battle behind closed doors once again. Am I surprised? Not really, as this is something I have lived with all my life and take it on the chin as you would when you have no choice in the matter.  By the end of August, I could barely stand up without that familiar burning feeling in my back and normally I can get this under control quite quickly but not this time. The fibro tender points by my elbows were so painful it felt like I had been punched, and trying to lift anything, even a full water bottle was difficult. I was able to get an MRI and an appointment with my pain consultant by the 5^th of September. Unfortunately, there has been more degeneration and the facet joints at L4-L5 and L5-S1 are the offenders. I was booked into hospital on the 13^th of September to have a medial branch block. This is an ongoing issue…

What is Lumbar Facet Joint pain?

Facet joint pain, or facet joint syndrome as it is sometimes called, is a condition that affects the joints that sit either side of your lumbar vertebrae.

If these joints are overloaded from a sudden injury, or become irritated from degeneration or overuse, it can cause a significant amount of pain, loss of movement and function.

Facet joint pain is one of the most common causes of low back pain and neck pain. It can affect anywhere along the spine, but usually affects the lumbar spine (low back) as this region of the spine bears a large amount of stress and weight, making it vulnerable to injury and degeneration. The most common site of facet joint pain in the lumbar spine is at the L4-L5 level followed by L5-S1. https://complete-physio.co.uk/lumbar-facet-joint-pain/

The purpose of the Medial branch block is to identify the source and provide pain relief for which it done the trick but this is temporary. During all of this, I ended up in A&E/ER with severe upper stomach pain and I can tell you I have experienced a lot of pain in my time, but this was too, off the chart. I had a CT scan, which showed inflammation of the stomach also known as Gastritis. I have never felt anything like it and put it down to the pain meds I was taking for the nerve pain in my back because this was so unexpected. I was told I needed to come back for an endoscopy and given stomach meds… On the 2^nd of October, I had the endoscopy, which not only showed gastritis, but Oesophagitis (inflammation of the oesophagus) and a bloody Hiatus hernia measuring 2 cm! I am waiting for the biopsy results. You really can’t make this S*** up. On the 10^th of October, I had the follow up from the back procedure to discuss and book the next procedure, which is tomorrow the 25^th October. This is a procedure to burn the nerve endings which has always given me lasting relief.

During all this, the back pain is getting worse and I had/ have commitments I wanted to fulfil because I’m still trying to live my best life and to not be afraid of the consequences of my actions. These commitments have not done me any favours, but I have incredible memories that will stay with me forever. The beautiful wedding shoot I did for the amazing photographer and author Ross Willshire for his upcoming book was the highlight of this month. One thing that has been evident since stopping the medicinal cannabis in January, after 2 years of treatment is that my body is showing signs of pre-cannabis treatment. I have been fortunate enough to restart treatment and the painful tender points are no more.

Lessons Learnt

The loss of your former self is a mourning process and I don’t know if and when that ends. Never the less I love life!

https://arthritisdigest.co.uk/loss-former-self-mourning-process-dont-know-ends-says-andrea-willis/?fbclid=IwAR36oD7_QIeD_z9L2oqGsI_vINlexoVo8D8jZOsBvpSs-UkxUzBDHo_EGY8

Sinus Tachycardia

Well what a journey to get to this point and finally a resolution to my challenges I have been experiencing with my heart. In May, I had an echocardiogram (heart scan) which showed some fluid around my heart, which needed further investigation (Plural effusion).In addition, a 24 hr ECG recorded Sinus Tachycardia. My symptoms were:

Shortness of breath resting and on exertion

Rapid heart rate

Dizziness

Chest pain

Breathing difficulties

What is sinus tachycardia?

Sinus tachycardia refers to a faster-than-typical heart rhythm.

Your heart has a natural pacemaker called the sinus node, which generates electrical impulses that move through your heart muscle and cause it to contract, or beat. When these electrical impulses are transmitted normally, it is referred to as normal sinus rhythm. Normal sinus rhythm typically results in a heart rate of 60 to 100 Trusted Source beats per minute.

Sometimes, these electrical impulses are sent out faster than this typical rhythm, causing sinus tachycardia. This results in a heart rate of over 100Trusted Source beats per minute. However, this is usually a temporary response and may only be concerning if tachycardia persists during times of rest.

https://www.healthline.com/health/sinus-tachycardia#inappropriate-sinus-tachycardia

I was referred to the Royal Brompton Hospital for a Cardiac MRI to have a closer look at my heart. Apparently one of the best leading heart hospitals in the country. As I have had many MRI’s in my lifetime, I did not think this was a big deal. I had to take medication to slow my heart rate down 3 days before the scan, and one on the morning of the scan. To be fair I did not notice any difference but followed the instructions given to me. After I was prepared for the scan, the radiologist told me he was going to give me a drug to speed up my heart. I asked why would you do that after I have just taken meds to slow my heart down? He actually giggled a bit and said, no this is what we call a stress test, which we perform at a certain time during your scan. He explained that I would feel slightly lightheaded and feel a bit of chest pain, I thought ok well that’s nothing new.

I was helped in place after first having another ECG and having two cannulas put in my arms, one for the contrast dye and the other one for the stress test medication. I had to hold my breath at intervals during the MRI and it was unbelievably hard to hold my breath for longer periods before releasing the air. Therefore, after roughly 35 minutes of this, I was actually done and wanted out, I felt terrible. Then the radiologist came into the room to give me the meds for the stress test and said don’t worry this part is quick. He had to do this to see how my heart behaves under stress. I started to feel dizzy and then I felt pressure in my chest, it felt like an elephant was crushing my chest. I truly felt like I was dying and thoughts were going through my head like, this must be what a heart attack must feel like. I was so close to squeezing the emergency button but the radiologist just kept reassuring me that all was well and that we’d be finished shortly. That was the longest hour of my life and actually thought my god what If I’d died? Did I hug my kids before I left…

I came out of the MRI and was helped to sit up slowly by two members of staff, I felt very tearful and the staff were very empathetic. I swung my legs around off the side of the bed and felt woozy then fainted. I was immediately back on the bed and the room was full, including the doctor. I was monitored and my blood pressure was taken until I recovered. Collin was in the waiting room with my wheelchair and was sent for because after that I couldn’t walk or get dressed by myself…I cried all the way home and couldn’t wait to hug my children.

I had all these consultations and tests done privately but still had a long awaited Cardiology appointment on the NHS shortly after, which worked out well because I could share the results with the NHS. Apart from the Tachycardia, which was to be treated with medication, and a now normal amount of fluid around my heart, all is well. I was given a prescription there and then in the consultant’s office and started it straight away and it’s been a month now. As one would, I called my GP to find out if they had received the letter asking you to prescribe this medication on repeat. They hadn’t so I contacted the consultants secretary, and was told they’re all behind on their letter writing and will send an urgent email to hurry it along. I can’t get any more meds until the GP has the letter and I was concerned what would happen if I suddenly stopped these heart meds. The GP secretary told me to call 111 for an emergency prescription but that led nowhere because no one can prescribe an emergency medication unless it is on your repeat prescription! It’s not on my repeat because the GP doesn’t have the letter…

My next step was to call PALS

What is PALS (Patient Advice and Liaison Service)?

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters.

They provide a point of contact for patients, their families and their carers.

You can find PALS officers in your local hospital.

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Two days later, my Consultant called me to apologise and that my appointment details were still on his dictaphone. He told me to come up to the hospital that same day and get a prescription from him. The NHS is broken.

Lessons Learnt

I was determined to get to the bottom of the Long Covid situation and grateful to have been able to have all the necessary tests and to know I’ve tried everything. Since starting my new meds my breathing as become much better and my heart rate is under control.

Hospital policies and procedures

 It’s time to get a few things off my chest regarding this matter. As most of you know I’ve had 14 surgeries in my life so I think I can speak plainly based on my own experiences. Last year my mum had a knee operation which went perfectly well, a successful operation. Then an incident happened which made my blood boil somewhat. I had a very distressing call from my mum (she had her own room) one late morning, that she was in terrible pain and not had her pain medication. I was fuming and made my way to the hospital asap to find out what had happened to delay her meds. When I got there, mum said she was in her bathroom when the nurse came in and left her meds on the table obscured by something, she had no idea they were there. Firstly, under no circumstances should a nurse leave meds unattended on the table, they are supposed to either help you with them if you’re unable to administer them yourself. Or at least watch you take them from the little white pot they put them in. Remember she just had major surgery and was not coherent about her surroundings.

In the early part of your healing process, it’s important to have your pain medication on time. Suffering in pain will not aid in your recovery.

This was so upsetting to see her so distressed I had to report it. I went straight to the nurse’s station to ask for the ward sister and explained what had happened and that under no circumstances was this acceptable! I was very polite but made it clear that I know what is supposed to be happening therefore that incident can’t happen again. The sister was very apologetic and said yes I am right and that she would speak to the nurse in question. Later on the said nurse came in and tried to explain herself and that there was clearly a misunderstanding. I stopped her right there and said NO, there was no misunderstanding, you did something that shouldn’t have been done full stop. My mum is now acutely aware of this procedure.

Last week my mum had a very complex hiatus hernia operation and was in ICU for 4 days. They were absolutely fantastic looking after her as one would expect in such a tense environment as ICU. Her bed was extremely high tech; I’ve never seen anything like it. It inflated, massaged, vibrated, and could positon into a chair. So when it came to getting her up, they helped her into a chair by her bedside. Immediately she felt dizzy so back to bed she went, her blood pressure had dropped. They did it again the next day and she passed out, sats, oxygen and blood pressure all dropped.  Moving on from this scary situation and speaking to my mum, I said to her ‘Why don’t they make your bed move into the seating position, let you rest there for a bit, then slowly let your feet touch the floor, THEN be helped into the chair. Imagine, she told the nurses to do this and guess what she was fine…

Why the hell am I telling them? Surely that’s common sense after the previous episodes? Clearly not.

She was eventually moved to the same surgical ward as when she had her knee op and of course saw the same said nurse which mum said was a bit awkward lol. Now in this ward her nurse would take the pills out of the packet after showing her them, put them in the little white pot, wait for her to take them and then give her the necessary injection. Simple right? So why did mum wake up to a pot of tablets and a syringe with required meds on her table? They were not even hers!!!!! Are you kidding me. I was in complete shock that I had to laugh because surely that can’t be right. If my unfortunately timed neck spasm hadn’t laid me out, I would have been there in a second. But my mum handled the situation like the boss that she is. She reported it and the next morning she could hear the ward sister talking to all the nursing staff around the nurses’ station. She overheard them getting reprimanded and emails and leaflets have been distributed amongst the staff. Reminding them that anybody could have taken them, or stolen them!

Lessons Learnt

Please be aware of procedures in hospital environments. I have experienced the most shocking behaviours in the NHS and Privately, and learnt a lot over the last 30 years and some of those experiences I have helped make change for the better. Don’t be afraid to speak up.

Primary Aldosteronism/Conns Syndrome

So a new year and a new diagnosis and answers to so many issues I’ve been experiencing since 2021. After being admitted to hospital last year with horrible symptoms such as chest pain and uncontrollable shaking, and then admitted again after having Covid, it was discovered that I had low potassium each time which required an infusion overnight. I also developed high blood pressure out the blue too. Me being me, I had to find out what was really going on. Hospital doctors would say to me; you need to eat more bananas… really? Me telling them I have a good diet made no difference to them, the answer was, here have these Potassium supplements for 3 days and eat more bananas.

Ok next step was to get a GP referral to see an endocrinologist, no one even suggested this… Why am I always finding my own way? I’m sure it’s the wrong way round but decades of experience tell me it’s the only way of getting to the bottom of things.  Straight away the consultant was looking at why I have low Potassium and high blood pressure (under control with meds). I had so many blood tests that had to be done at particular times of the day plus a 24-hour urine collection to see if I was losing Potassium that way. All tests were signalling to a condition that the consultant called Conns Syndrome. But, to be 100% sure, he said there was what he called the gold standard test. This required a referral to Kings College hospital in London and the waiting list was about 4-6 months. After talking it over with hubby I was thinking I can’t be bothered to go any further with testing as I was now completely drained and overwhelmed with the back and forth. I was encouraged to keep going as I had come thus far.

What Does an Endocrinologist Do?

Endocrinologists are medical doctors who specialise in diagnosing and treating health conditions related to problems with the body’s hormones, hormonal glands, and related tissues. They have specialised training in the endocrine system and can help diagnose, treat, and manage the illnesses that can arise when hormone imbalances or endocrine gland problems occur.

Endocrinologists specialise in treating disorders of the endocrine system, the network of hormone-producing glands in your body. Endocrinologists are qualified to diagnose and treat conditions like diabetes, thyroid diseases, infertility, growth issues, metabolic disorders, osteoporosis, some cancers, and disorders in the hormone-producing adrenal glands and pituitary glands.

Disorders and diseases that originate elsewhere can also end up causing symptoms in your endocrine system. When problems in other systems or body parts impact your endocrine system, an endocrinologist will work in tandem with your primary care doctor or other specialists to come up with a treatment plan. https://www.webmd.com/a-to-z-guides/what-is-an-endocrinologist

I finally got that appointment for a Saline Suppression Test, https://www.kch.nhs.uk/Doc/pl%20-%20927.1%20-%20saline%20suppression%20test.pdf. After waiting for the results of this 4 hr test, I got a letter with another appointment to do the same test. Being confused I called them and asked what was going on. Apparently the first lot of blood test were not handled properly therefore couldn’t be analysed! It took a lot of prep and sacrifice to get there in the first place with a chaperone, now I had to go back and do it again!! The second time around was done in October 2022 and December 21^st I found out that I indeed have Primary Aldoseteronism aka Conns Syndrome.

So what is Conns Syndrome?

https://www.adrenal.com/conn-syndrome/symptoms

I have found out so much information from the following site.

https://www.primaryaldosteronism.org/do-i-have-pa/

I am about to embark on a treatment plan and hoping this will improve my wellbeing.

Lessons Learnt

No one but you can explain how you’re feeling. If your gut says something is not right, talk to your GP/Primary Care Physician.

Long Covid and Medical Cannabis

Well what a year 2022 has been. From being hospitalised with Covid, resulting in a 6-month recovery period and many hospital visits thereafter, to having major renovations done to the house. Travelling for nearly a month to Thailand, and turning 50 then looking after my mum after her knee operation. I’m surprised I’m still standing to be honest. As many of you know I started my MCBP (Medical Cannabis Based Products) journey in August 2020 and it changed my life for the better. I thought Oh my god I’ve finally had a break through and felt truly blessed I had this opportunity.

Winter has come and this year feels like a different level of cold. I’ve tried to have no heating on and every part of my body was hurting, I couldn’t do it. Even with the heating on, I’m wearing layers upon layers. Now I feel semi comfortable. But, yes there’s a but coming… I feel like my heart has broken. Not in the lovey dovey way, but physically. Covid has left what feels like damage to my heart. Every hospital visit, the tests come back ok (apart from my electrolytes as usual) and I’m given steroids to calm the inflammation down in my chest area. But it just keeps happening, every single day, sometimes its mild and only slows me down a bit. Other days I’m not moving much because when I do my heart rate is pushing 120bmp. On top of the Costochondritis, it’s not pretty. I caught a cold recently and boy it floored me, people think I’m joking when I say I fear catching ANYTHING! I simply can’t just hide away though indefinitely.

As I have been going through this for most of this year I’ve made the decision to stop my MCBP. It breaks my heart literally. What I mean is it makes my heart rate spike and I cannot cope with that feeling. What a flipping kick in the teeth, how can this be happening to me? I finally find something and then boom, the universe says no more. All I can do is pray that someday this Long Covid bull**** goes away.  

Lessons learnt

Medicinal cannabis literally saved my life, it has helped me in so many ways. But like all medicines, wherever you source them from, there can be side effects. This side effect, for me is not tolerable.

Moving into 2023 with hope and still a lot of laughter, Merry Xmas and a blessed new year to you all. Thank you for your continued support.

When to go to the accident and emergency room

Something that has plagued me for many years regarding when to attend A&E; and are my symptoms serious enough to warrant a visit. I know for a fact that I am not the only one who suffers with chronic conditions, and has to make that difficult decision. If you don’t suffer, maybe you might think well what’s the big deal.

Around this time last year, I caught Covid and the consequences were dire as many of you know. https://andie01322.wordpress.com/2022/01/12/covid-and-me-disclamer-this-blog-contains-images-of-medical-interventions/ Unfortunately a few weeks ago I was taken to hospital via ambulance and the memories of that terrible time came flooding back. Out of the blue I had a sudden sharp pain in my upper left shoulder blade area. I literally fell to the floor and had to wait until someone could put my tens machine on my back. It felt like a spasm because it was hard to turn, it was painful to take a breath and I don’t mean a deep breath, just breathing was hurting. I did all the usual things one would do, i.e. ice, heat, pain relief etc. for two days then it started to calm down. Day 3 was different. I woke up and sat on the edge of the bed like I usually do, and a sharp pain hit me in my chest area and under my left breast. I got up and went to the bathroom and came back to my room. I could feel my heart pounding out of my chest and my pulse was 130bpm. It was then I thought something is not right, I was extremely breathless…

We all know that if you call the GP or 111, with chest pain they tell you to go to A&E straight away. This is the dilemma I’m referring to, I always have chest pain, mildly, severely and everything in-between. Someone who does not suffer with Chronic pain may not feel the physical consequences of waiting in A&E for 6+ hours. For me, honestly, its hell on earth. I am already concerned that the Myopericarditis has come back, it feels like I’m having a heart attack. In my head I’m battling with all these thoughts. Imagine being concerned that your heart is under attack, and on the other hand, what If it’s nothing serious and I have to sit in A&E for hours to be told nothing is wrong its Costocondritis, you’re fine. My pulse spiked every time I moved, reluctantly I called an ambulance after throwing up. When the paramedics arrived, 3 of them! One of them asked me why I waited 3 days to call an ambulance, I explained what I have tried to explain in this blog and she understood but told me off…

After 7 hours and a barrage of blood tests, I was told it was Costochondritis. My phosphorus levels were low and provided treatment for Hypophosphatemia.  https://www.healthline.com/health/hypophosphatemiama and a course of steroids to calm the inflammation down. Covid has left me with an autonomic dysfunction which I’ve spoken about before https://andie01322.wordpress.com/2022/04/10/autonomic-dysfunction-long-covid/  and I hate to say it or acknowledge the fact that every medical professional I see tells me I have long Covid. Out of all the things I’ve been through, having your heart spike over 130 (I have been told by my Cardiologist to keep it under 100) for no reason because Covid has damaged something or the other, is hard to get your head around. When I caught a cold at the beginning of this month, I felt the same symptoms.

It wouldn’t be a surprise if I told you my mental health has plummeted this month, this episode has really thrown me but I recognise immediately that I’m not in the right headspace and talk to my family about it. I have now refocused and pushing through each day the best I can.

Lessons Learnt

To be perfectly honest I haven’t learnt anything and I guess that’s ok.

Trigeminal Neuralgia

There are times when I think I must have experienced all types of pain in every part of my body, for the past 30 years. Well guess what…

About a month ago I woke up with a severe sharp pain in the back of my head. It didn’t last long but left me with a dull pain in my head for days. I couldn’t even comb my hair because my scalp was really painful too. I am used to the painful scalp scenario so I didn’t really think too much of it. Over the following week I felt like I had a tooth ache and an ear ache on the right side, my forehead and eyes felt heavy, the pain was behind my ear and all around the right side of my jaw. chewing food, brushing my teeth, even washing my face hurt. If you have ever experienced an ear ache and a tooth ache at the same time, you know I would be slightly concerned that something else is going on. It’s very easy to blame everything of Fibro…

The pain was off the scale, the cold air made it feel 10 times worse. I bought myself some sports ear muffs to wear as my ears hurt so much, occasionally I would get shooting pain in my left ear. I have to wear a Snood when I go out sometimes. After an appointment with a doctor online (couldn’t get to talk to my doc), she told me to call 111 or go to an urgent care centre to be seen that day or the next. There was no way I could sit for hours anywhere so I didn’t bother and thought I’d try my GP the next day. After describing my symptoms, my GP had already read the notes made from the day before, he said you are experiencing Neuralgia. Unfortunately, a medication I was happy reducing I had to increase and it has calmed it down. But why did this happen in the first place?

So what is Trigeminal Neuralgia?

Trigeminal neuralgia is sudden, severe facial pain. It’s often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums.

It usually happens in short, unpredictable attacks that can last from a few seconds to about 2 minutes. The attacks stop as suddenly as they start. 

In most cases, trigeminal neuralgia affects just one side of the face, with the pain usually felt in the lower part of the face. Very occasionally the pain can affect both sides of the face, although not usually at the same time.

Some people may then develop a more continuous aching, throbbing or burning sensation, sometimes accompanied by the sharp attacks

Trigeminal neuralgia is usually caused by compression of the trigeminal nerve. This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.

The compression of the trigeminal nerve is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.

Trigeminal neuralgia can also happen when the trigeminal nerve is damaged by another medical condition, such as multiple sclerosis (MS) or a tumour.

The attacks of pain are usually brought on by activities that involve lightly touching the face, such as washing, eating and brushing the teeth, but they can also be triggered by wind – even a slight breeze or air conditioning – or movement of the face or head. Sometimes the pain can happen without a trigger.

(https://www.nhs.uk/conditions/trigeminal-neuralgia/ )

Lessons learnt

Always trust your instincts, if you feel something new or different is happening get help as you may be able to get things under control a lot quicker.

Guide to navigating the airport with a wheelchair

So for many years I have heard horror stories of wheelchairs being damaged in the hold of the plane.  Airlines don’t seem to appreciate or understand the importance of wheelchairs to their users so I want to share some tips from my experience of travelling to Thailand with my electric wheelchair. Hopefully helping others from experiencing that.

1. Contact your holiday provider or airline and let them know you wish to wrap your chair in bubble wrap BEFORE boarding. They will ask you for the dimensions of your chair and confirm what type of batteries it takes. Mine has 2 lithium batteries.
2. Before leaving, measure out how much you will need in order to wrap it vertically and horizontally for maximum protection and cut them. I had 8 very long pieces. My chair does fold up so this was quite easy, however if your chair doesn’t fold I still recommend using bubble wrap around as much as you possibly can. I know this is not guaranteed protection but it’s better than not having it.
3. On route, I carried 2 pieces of bubble wrap on my lap (vertical and horizontal marked with black marker pen) and the rest were in a suitcase as we only need one set for the first leg of the journey.
4. Arrive at your gate about 15 minutes earlier than you need to be there so your chair can be wrapped up, don’t forget your brown tape, at least 2 rolls. I understand this may be difficult if you are a solo traveller, I was told the staff don’t help with that. Remember to remove your batteries from the chair and put in your hand luggage. Trust me the staff will remind you.
5. I was asked, If I wanted to wrap it at the gate or at the plane door. The gate is a better option as there are chairs and more space to wrap the chair. Just give yourself enough time.
6. After the flight, depending on your destination airport, your chair may be brought to the airplane door or you can collect it where the oversize items are retrieved. If you’re not asked your preference, then please don’t hesitate to ask. It’s your property. I travelled with 2 different airlines so remember to adhere to tip No.1 for each flight.

Please feel free to get in touch if you have any additional questions or would like to hear more about my experience travelling with a wheelchair.

Lessons learnt

I was fortunate for this experience to go smoothly and will continue to use the same process for any future travel. I hope this helps.