Eye Appointment

Ophthalmology Appointment

After having a headache since Saturday that gradually built into a whacking migraine in the early hours of Monday morning, it totally wiped me out! I woke this morning, with a fuzzy head that started again with the headache again! Grrrrrrr!!!!

Anyway, I'm off to see the Ophthalmologist now to check my eyes out, maybe he can come up with some reasons or solutions for these crippling headaches and visual disturbances????

Watch this space……

Early Morning Updates

Early Morning Updates

Morning people!

Have been awake since 5am booo, so thought I would do a blog update.

No news from the National yet for my appointment. I did call them last week to see if there was any news but no luck, I was advised to give it a couple more weeks and if still no joy give them a call back so that’s what I will do. I will say they were very helpful and sounded very pleasant on the phone…..just hurry up will you, I’m going crazy here!!!

When I got home from work yesterday my Medical Bracelet had arrived….yay! I’m very pleased with it however, I did mess up the first ID card that goes inside as the ink smudged everywhere!!!! I will be testing it out today for the first time to see how comfortable it is in an everyday situation but am impressed by how quickly it was shipped.

Have a great day people, enjoy this great weather, while it lasts.

Emergency Accessories

Emergency Accessories

My sleeping patterns are really screwed up lately, is it pain from my shoulder, medication, worrying about the AVM or just things running through my mind???

All of the above probably!

Anyway a few nights ago I got to thinking, shit, I’ve had this condition all my life and never knew it was there! What would have happened if it had burst, erupted of whatever they call it, I had collapsed and no one had known what was wrong with me? I would have been screwed!!!

Me & Mum

In a good way I'm lucky now I've had these warning signs of migraines and seizures for it to flag up enough issues for them to do tests and an MRI scan to find the AVM. Now I have people and science on my side looking out for me but what really started to go round my head was what happens if I'm on my own or no one who knows I have this condition is with me when I have a seizure or I collapse?

A few days after thinking about this, my Mum called to say she was just going to collect my prescription for me but she had a thought, she was going to try and pick up one of those “Medical/SOS Bracelets” for me. Oh my word, Mum is a mind reader and not for the first time. Seriously, Mum and I have our own private ESP line sometimes but more about that another time lol.

Anyway, the local pharmacy didn't have any of the medical bracelets, so this afternoon I have trawled the internet in search of the “right bracelet”. OMG, there are so many different styles, types, textures etc but the one big common fault I found with most of them…not enough room to put the information on! Basically you put the fact you have a condition on it and the rest on a medical card that sits in your wallet or purse. What happens if you are separated from your wallet or purse?? The metal ones look like they may break on impact, some others look like they may not be waterproof and the information may be lost and some look like they will last for five minutes!!

It took some serious thinking, but I came up with a practical choice.

• HARD-WEARING & COMFORTABLE – our medical ID bracelets are designed for everyday use.

• SECURE – ID card is kept securely and discreetly inside the medical alert bracelets.

• NEW IMPROVED ID CARDS!! – 3 Fold Design allows 3 x the amount information to be stored (when compared to our old cards)

• 100% WATERPROOF – Our medical bracelets are OK to use in the pool or ocean

• 100% LATEX FREE / Non-Metal Design (Cadmium free)

Only £12.41 Free Delivery…sweet!

I’m going to check this sporty little baby out first and maybe look at accessorising with another silver or leather one for other occasions. Watch this space for delivery…….

If you like the medical bracelet I chose check them out here!

http://www.safety-site.co.uk/products/vital-id-adult-medical-emergency-ice-wristband-medical-allergy-diabetic

Voluntary surrender of driving licence.

Voluntary surrender of driving licence.

On the day of diagnosis of my AVM the doctor told me I would have to inform the DVLA and class it as epilepsy as the passing out moments I was experiencing were actually seizures.  This was going to be one of the hardest things to do, I have been driving 22 years, and I love driving. Cat doesn't drive, I need to drive for my photography business, and I need to drive for general things like shopping. 

How was I going to cope? I couldn't live with myself if I had a seizure then crashed my car into someone and hurt or killed them so it was simple…on May 14^th I wrote to The DVLA and voluntary surrendered my driving license. Three weeks later I received confirmation and conditions of my surrender. As long as I do not have another seizure for a complete year I can apply for my licence back and as I had not driven since February 2^nd I think that may stand from then.

Until you cannot drive you do not realise how much you rely on it and how bloody expensive and unreliable public transport is. So I would like to take this opportunity to thank my family and friends for their kindness in giving us lifts and doing shopping for us, it has been a great help and we couldn't have managed without you all!

Medication Update

Medication Update

Unfortunately, I've be getting more symptoms, migraines and headaches again so my GP has increased my medication. I have to increase the meds slowly like I did when I first started, so last week I increased just my evening dose. Being an evening dose I haven't noticed any difference. 

Yesterday, I took my first morning dose which I usually take around 10am. By noon they had well and truly kicked in! I walked out of the building on my lunch break, the fresh air hitting me and I couldn't walk in a straight line. I was shit arse drunk! I spoke to Kev on the phone, he said I was slurring, I had rushes up my spine, felt sick and really not steady on feet. Time to go home I think.

This morning I needed to know if my body was used to the new dosage of meds before going to work so I woke at 6am to take my meds early, to give them time to kick in. Short answer….I felt drunk by 7am! I can’t win…..how long will it take for my body take to get used to them? Will my body get used to this new dosage? Feel stuck between a rock and a hard place.

Medication for Life!

Medication for Life!

About my medication. The medication I am on is called Topiramate. It is not a cure for the AVM just medication to stop the migraines and seizures. I was given the medication before they knew I had the AVM. He said it would help with the symptoms I had and if it was Migraines, Epilepsy or Migralepsy it would help so it was a win win situation. Like all medications there are side effects and this is no different. This medication may cause drowsiness, nothing new there Doc! Lol. “Some people gain weight some people lose weight” he said great I thought until he said “Well people that have a tendency to put on weight easily will probably put on weight and people that lose weight easily will lose weight” So what he was saying was you’re over weight honey, just to warn you it could get worse! Well, bring on Mr Doctor!!! I’ve lost nearly a stone now! It’s probably not the medication at all, it’s the amount of water I drink that’s supressing my appetite. I drink the water to stop me from getting kidney stones as this is one of the other side effects from the med! I tell you now, I’m pissing like a race horse, but I won’t be getting no kidney stones that’s for sure! Anyway if this is the price for not having seizures, migraines and feeling down right shitty all the time and to get my driving licence back in February 2016 that’s ok by me for now anyway.

New Specs

New Glasses

Saturday June 13^th £250 later one pair of Prescription Sunglasses and one pair of regular glasses. Let’s see how these go. Not a bad price really when you think about it. BOGOF plus Free eye exam, I did pay extra for glare resistance and premium varifocals range but I am very pleased with them so far. I thought it would take a few weeks to get used to the varifocals but it’s taken less than 24 hours! 

 The new prescription sunnies

                                   
                              

                             And the regular prescription glasses

           

I cannot fault the optician’s service, she picked up the problem with my peripheral vision and I have already received an appointment to see the Ophthalmology team at The L & D University Hospital on June 30^th. 

So thank you Specsavers, you have a lifelong customer!

Bed rest 10/06/15

Bed rest 10/06/15

This week wasn't such a good week. Monday afternoon at work my eyesight got worse and my head was pounding. I couldn’t read a word that was on the screen, nothing made sense. The harder I tried the worse it got. I was getting more and more frustrated with myself. Something so simply as reading an email had stumped me! My vision my freaking me out as I had this weird aura partially around my right eye, it made it feel like someone was stood next to me. I kept looking but no one was there. People must have thought I was crazy. By this time I was so worried that there was something seriously wrong with the AVM. We were never really given much information about it at the hospital back in May so I didn't know what to expect. So I called the Neurologists Secretary and asked if she would ask him for some help. She said she would pass on my symptoms and he or she would get back to me when she had spoken to him as he was in clinic at the moment. Eventually I had to give in, the beads of sweat on my brow and the pain in my face was too obvious by now and one of my managers had noticed. So I caved in and called it a day and went home to bed. The Neurologist never called nor his Secretary that day.

I slept until the following day and woke with a muzzy head, I was eager to return to work so I picked up my laptop to test myself by reading some emails. The first email was ok but as I started on the second the aura started to return and the feeling of frustration and anger returned. I felt so sick and in many different ways. I called into work sick and then called the Neurologists Secretary back. She explained she hadn't spoken to him until late yesterday and he said to contact my own GP and if my GP had any concerns to contact him. So I called my GP’s surgery for an appointment. I slept on and off ALL day.

Later that afternoon I went to see my GP. It wasn't my usual GP but he read all my notes regarding my AVM so he was up to date on the situation. He did the usual tests BP and such things and decided it would be sensible to increase my medication. He also taking into consideration my new glasses prescription which would be coming in a few days, which he thought may have some influence to how my eyes were reacting to my new job. So let’s see how this goes, I need to give this about 3 weeks to see if it’s really helping. Watch this space…..

Should have gone to Specsavers

Should have gone to Specsavers

A week after being diagnosed, I started my new job at Tui UK as a Senior After Travel Advisor. Working on computers all day long, reading documents, learning new programs really started to take a toll on my eyesight and I started to get some migraines, headaches and symptoms that my AVM was playing up. I thought maybe all of this overload of new information and fulltime work was just that I was overdue for an eye test, so off to Specsavers I went.

I hadn't had an eye exam for nearly three years and was actually going to go now I had reached …. Err 40 as my Dad had glaucoma at a young age and both his sisters and his Mum both had it too. It also meant that I would get a free I test. I told the optician the glaucoma history of my family and my recent AVM diagnosis. My test was what she had expected for a person of my age and it had slightly changed since my last visit. In saying this she said my eyes were very healthy, there was no sign of glaucoma, scaring or problems at all on the backs of the eyes. She was very pleased. So was I, something was going right for a change. She did say that my eye muscles were a little bit lazy though (just like the rest of me, I hear my Mum say lol) and that my new prescription I would need varifocals.  Whoops… there it is!!! You've hit 40 Em, wearing varifocals now just need a nice chain on the end of your glasses to hang around your neck and you've slid into middle age!!

Anyway after that the nice optician lady said she wanted to do one last check to test my peripheral vision and asked me to go with one of her colleagues. I sat in front of this machine with my right eye looking into it, I had to look directly at a black dot on the screen and when I saw something out of the corner of my vision click a button on the keypad I was holding, Sure…..No problem. “So let’s do it with your left now” the women said. So we switched over. It seemed like ages before this one started, I thought the women had forgot to start the program. The women said “Did you not see those this time?” I said to her” I thought you hadn't started it, I see them now” I could see some out of the left corner of my eye. The women looked confused and said she was going to start it from the beginning again. Well the same thing happened. I thought there was something wrong with the program, the women said she was just going to pass the results on to the optician. When the optician came back she explained “There was a problem” it wasn't the machine it was me. “You have a problem with you peripheral vision, it’s not your eyes as we looked at those earlier. I think its probably to do with your AVM and how your brain communicates what you see. So I'm going to write to the Eye Specialists at the hospital and let your GP know too”

Here we go again “WHAT’S WRONG WITH YOU NOW?”  

Why..What’s wrong with you now….spaghetti brain?

Why..What’s wrong with you now….spaghetti brain?

What’s wrong with you now? Has been a long standing joke especially between me and Cat. Ever since we met I have had nothing but problems with one limb or another. My knee, my back, my shoulder and Cat would always say “tsk….what’s wrong with you now?” Actually, since I'm the one writing this, I can say this now, that it wasn't always me that was ill, Cat was pretty high up on the sick note list too, Mrs I am twisting my ankle again for the umpteenth time and need surgery! (I won't tell everybody about Dr Malteeser Cat, hehe) Admittedly I did get my own back then by huffing 

“What’s wrong with YOU now?” in a very sarcastic tone. 

Going off on a tangent there but you get the idea, even my mum is in on the “what’s wrong with you now?” saying. So it was a logical place to start when coming up for a name for my blog. As for spaghetti brain, this is quite self-explanatory. When finding out an AVM was a tangle of blood vessels in the brain, I envisioned the vessels as spaghetti tangled up in my head and sometimes that’s just how I feel!

What is an AVM?

AVM stands for Arteriovenous Malformation

What Is an Arteriovenous Malformation (AVM)?

Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels in the brain or on its surface bypasses normal brain tissue and directly diverts blood from the arteries to the veins.

How common are brain AVMs?

Brain AVMs occur in less than 1 percent of the general population. It’s estimated that about one in 200–500 people may have an AVM. AVMs are more common in males than in females.

Why do brain AVMs occur?

We don't know why AVMs occur. Brain AVMs are usually congenital, meaning someone is born with one. But they're usually not hereditary. People probably don't inherit an AVM from their parents, and they probably won’t pass one on to their children.

Where do brain AVMs occur?

Brain AVMs can occur anywhere within the brain or on its covering. This includes the four major lobes of the front part of the brain (frontal, parietal, temporal, occipital), the back part of the brain (cerebellum), the brainstem, or the ventricles (deep spaces within the brain that produce and circulate the cerebrospinal fluid).

If you would like to learn more about AVM's follow the link below

http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-Is-an-Arteriovenous-Malformation-AVM_UCM_310099_Article.jsp

My AVM from MRI scan May 2015

Please excuse the funky eye balls they do look like something out of Mars attacks lol but you don't need to be a rocket scientist to see that that aint right! Spaghetti Brain indeed.

Welcome to My Blog

Introduction

Ok so the reason for this Blog is not self-pity or sympathy but for awareness, sharing updates with friends and family and a platform for my better half and I to seek advice and maybe for us to vent our frustrations from time to time. 

Now you're probably wondering WTF is she drivelling on about, where is this going and for those of you I have not already told, I am truly sorry. It has all kind of happened so fast and swept us off our feet, turning our world upside down.

For a while now I haven't been feeling to well, having migraine attacks and on occasions passing out along with other side effects too. My GP was fantastic and ran a few tests before referring me to see the Neurology department at The Luton and Dunstable University Hospital. They sent me for further tests and a MRI scan. On Monday 11^th of May we got the results, thinking my nice Doctor would say I suffer from some bad migraines, here’s some tablets go away but no, one of the worst things I think I have ever heard a Doctor say to me in my life…..” We have found an abnormality on your brain scan!”

OMG!! We'd laughed and joked before the scan, you know the usual shit like “are you sure they will find your brain?” Not expecting something serious to be wrong because really it couldn't possibly, could it?

It was just like you see it in the movies, everything else the doctor was saying was gobbledygook, just total blah blah blah. I remember Cat holding my hand so tight and the Doctor words “you have an AVM in your brain!”. It didn't make sense. Why me?  Are you sure? How serious is this?

The Doctor still had a smile on his face, maybe it wasn't that serious, and he was still smiling after all. Can they fix this?

I swear, so many questions and thoughts went through my head in those first few moments it was surreal. I can't even remember most of the questions I asked myself.

The Doctor told me to continue on the medication he had prescribed at my last visit, which had stopped the passing out episodes but now he was telling me they were actually seizures. Flipping great….just another thing to worry about. He was also referring me to the National Hospital for Neurology and Neurosurgery in London to see a board of specialists to see if the AVM is treatable. 

SHIT A BRICK….this is serious!!