So… where do I start?
I have been attempting to write this particular blog for little while and yet, I have also been avoiding it like the plague for a few reasons…
This blog started out as a way to share my experiences with others, in hopes that the information I impart will help another in their own quest for information and in hopes that we can all share our knowledge and information together…learning as we go. However, this blog entry has been testing me somewhat…in that I have wanted to share my new saga… but am kind of reluctant also because I do not yet have an answer for what is happening…and so I am in the middle of limbo somewhere…. and in a frustrated kind of hazy limbo… but I guess this is what this blog is about isn’t it?
So, as you will read from my other blogs… I have had a pretty interesting year of chaos with more twists and turns than an Irish Bog road (for those of you who have just joined check out my about page for some more info). To spice things up for good measure I recently had started to notice an increase in some issues I was having with my vision, memory, motion and headaches.
My vision had been, on and off, blurry with lots of floaters and blackout spots fading in and out of my vision throughout the year (more especially as I stood up – which I assumed was blood pressure). I was having lots of floaters in my sight (which essentially look to me like toothpaste spatters in my line of vision -yes folks… we all have a mirror with toothpaste spatters!). But these started off as irritation early in the year and progressively started to get worse, and worse, more persistently and rapidly in the more recent months.
I also started to feel as though I had bright spots shining in the back of my eye (like there was a bright light shining in from somewhere). It was extremely irritating as I couldn’t seem to find where this light was coming from, and sometimes felt like it was light reflecting from somewhere onto my nose and so I would often cover my hand over my nose to try stop the reflection – which never seemed to work for me, but couldn’t figure out where this bloody light was coming from – so assumed my nose was attracting unwanted light attention!!
To add to this, I also see star shaped halos around lights (no apparitions of Christ have so far accompanied this!!) this being during the day, duck time and night time, on things like tail lights on cars, bulbs, streetlamps and traffic lights etc. And of course have been getting banging headaches on and off over time. These are pretty bad when I get them but are not always present, kind of like a stabbing pain in the back of my head or behind my eyes.
These things were all happening intermittently and independently enough from each other at the start, so I never really connected them all until they were all starting to happen together over the past few months.
One really annoying thing in all this has been, that over the past year or so I had also noticed that when I would read it would take me a lot longer to get through the pages. My attention was less and words seemed harder to read like they were harder to focus on, I would see each word individually at a time instead of as a flow of words (this has become more defined over the past few months).
I felt that reading was becoming a total chore both for leisure and in work too! I would tire easily from it and would find myself reading the same line over and over and over again about 6-8 times before I had realised I wasn’t taking it in, at all. The same with full paragraphs and pages. I had not taken any of a whole bunch of sentences in. I know we all do this from time to time, but this was far more noticeable than ever before!
I love reading and used to do alot years ago. I read alot of crime novels and fiction. However, more recently my reading had turned to text books and more learning articles and deeper more life based books, so I felt that maybe these took more brain power to read and so I had even started to think…. that maybe I was not intelligent enough to read these books, or maybe not brainy enough to read a lot… as I would tire and take incredible effort to hold information in – I genuinely started to feel like maybe my IQ was not enough to read and retain information or had dropped …. which is a truly awful feeling to have!! It’s awful to feel like you are less smart than others who can clearly read and retain information no problem!!
I believe that you can train yourself to do something if you really want it bad enough, and over the years I have felt that if I persist to read, and read, and read, as much as possible then I will beat my brain into submission of being able to read like I used to…. which hasn’t worked. In honesty, it would be great to know that there was a little more at play in my ability to read and retain information than my stupidity!!
THE JIGS & REELS of MEDICAL APPOINTMENTS!
I noticed these issues with my sight had intensified and had become more persistent over the past year, but had attributed it to stress from my Dad dying .. even though I felt I had handled all of this in my stride (either that or I have been in complete denial over the past year or more and it will bite me in the ass very very soon!).
I went to see an optician to see (pardon the pun) if I needed glasses. Nope… ‘eyesight perfect and just dry eyes’, they said.
After Christmas just gone, and a very stressful 2months breaking up with my Fiance and in turn cancelling a wedding, the symptoms seemed to go a bit crazy and get worse by the month… and then suddenly by the week… and more scarily by the day… in that symptoms that were there 10 – 30% of the time had multiplied and were now persistently there 70-80% of the time in the space of 2-3 months…!!
This was starting to affect my work and so I panicked and decided to go to the Doc who arranged for me to see (again… pardon the pun!) an Opthalmist, who in turn said she couldn’t see any real issues except for severe dry eyes and minimal torturous vessels in my eyes, along with a PVD (Post Vitreous Detachment) none of which she was particularly concerned about but she wanted to send me for a visual fields test (which I aced) and a Electroretinography exam – say that 10 times fast while having a mouthful of crackers!! (This is where they attach elcotrobes to your eyeball and measure the impulse from my eye to my brain)(which I have yet to do).
While waiting for an update or appointment (which in Ireland can be a long painful process!), my symptoms had remained persistent, however my memory and ability to problem solve and work with logic seemed to cascade downhill. Whether this was just additional stress of it all creating a knock-on effect I don’t know but I decided not to wait and find out… especially with my heading off traveling in May…and so I asked the Doc to write me a referral for an MRI Scan to be done.
The MRI was carried out at 9.30am on a Monday morning on 6th March, just gone. I was told I would hear from my Doc in 2-3 days. So, you can imagine my surprise to hear (so efficiently) from my Doc when she rang me at 6.30pm that evening to ask (while I was naked in a changing room in a ‘NEXT’ Shop) 1. whether I was at home and 2. was I with a family member??
Now….. These two questions, when asked together in the same sentence, are never going to end with ‘I would like to offer you a lifetime supply of Haribo Jellies!’…. and so you can guess no good can come of them…
As soon as she asked, I had flashbacks of my poor Mum (who in the past had to ask the same questions before….) which in turn led to her telling me, on 3 separate occasions, bad news … twice that the family dogs had died and then that my Dad was seriously ill ….. see… no good can come of these two sentences together!!
Therefore, I knew I couldn’t answer with
‘Actually, No… I’m naked in a changing room in a shop in Dublin, and I am happy to wait in suspense to know why you are calling me so soon after my MRI this morning. Maybe you could wait until I get dressed, pay for my parking, go home to my house where I no longer live with my Fiance and therefore have nobody by my side and you could tell me the bad news then!!!’ 🙂
So, I went with white lies instead …
‘Yes, I’m at home. Go ahead!’. She then told me that I have a 12mm Pineal Cyst in my Brain which she felt was a reasonable size and that I could arrange to go see a Neuro specialist if I liked.
Now, I knew where the Pineal Gland was funnily enough however I asked her for confirmation and she replied with ‘Oh, I don’t know… I’m a GP!’…. So I thought….Okay then! Moving swiftly along!
So, like most impatient human beings I did a lot of googling and research in medical journals myself to find out as much as I could about them before I finally got to see a Neuro.
MY GOOGLE DEGREE!
My own findings say that:
Most people who have Pineal Cysts don’t even know they ever have them. They usually show up incidentally on <1-4% of MRI scans when people are getting scans for other things.
Most Pineal Cysts are <.5mm and are benign and asymptomatic (don’t cause symptoms). Rare or less common cysts are usually between 10-14mm in size. These can get bigger during puberty and shrink over time, and my be linked to hormone changes during puberty. However, the size of the Cyst does not always indicate whether it could pose a problem or not. It is most likely that he larger the cyst the more likely the mass is to press on surrounding areas and so cause symptoms, however very small cysts cannot be excluded from being problematic.
From what I understand, most Neuros will not want to touch them with a bargepole because of where they are located in the brain (on the Pinneal Gland, which is less than 8mm big itself, and situated at the centre of the brain at the top of the Brain Stem).
The Pineal Gland is responsible for the production of Melatonin (a derivative of Seratonin) which is responsible for sleep. Due to its’ location in the brain (close to optical and motor areas of brain, and at the brain stem where the cerebral spinal fluid passes through), and not always due to the size, the mass can sometimes cause problems such as visual disturbances, double vision, vision paralyses, memory loss, motor issues, hydrocephalus, nausea, headaches etc.
However, the general consensus seems to be, while looking at other peoples opinions online (and being open to the fact that most people only talk about the negative stuff and not as often about the positive stuff, and also taking into account mass hysteria) and reading alot of medical journals and watching some online medical conferences/ talks, there does not seem to be alot of information about these cysts. It feels to me that 1. Surgeons don’t want to go near them unless they have to (for obvious reasons)! and 2. Alot of people seem to go around with almost identical or extremely similar symptoms to each other, while all seeminng to have these Pineal Cysts, but these Surgeons seem to have an issue with believing these masses of people in their symptoms and give the same text book answer all the time – That they are usually not symptomatic, they try to blame visual symptoms on too much computer time, or other symptoms on stress and so pass them off until the patient persists in doing something more about them. There seem to be two surgeons in the world that specialise in this, one is in Texas and one in Sydney. Outside of that it seems to be difficult to find a surgeon who will either listen to their patient and take them seriously about their symptoms or who knows much about them!
So, because I had requested the MRI myself, and it was not by a specialist, I then needed to source a neuro myself, who would see me and speak with me about my MRI. This proved ridiculously difficult and I was passed from Billy to Jack. I was referred to Blackrock Clinic to a man who would not see me and forward my details on to another surgeon in Beaumont Hospital, who would never answer their phones, or whose phones would only ever go to voicemails, or who would sometimes ring out and sometimes connect only to tell you that they were busy carrying out administration!! I was short of landing on their A&E doorstep to be seen!! I decided to contact my old Doctor, who is retired but has many connections, to see what he could do and sure enough he managed to get me an appointment with a Neuro in The Hermitage (He did this by contacting the Dept of Health to complain that the hospital was not answering their phones!!!!).
I met with the Neuro and advised my Mum, who came with me, of what I expected him to say. I expected all the text book answers above, and sure enough I was kicking her under the table as he mentioned each of them… one by one!
He asked me for my symptoms, and two sentences in he had stopped listening to me. He said that it had probably been there all my life and asked if I worked on Computers (who doesn’t now a days), and asked if I was stressed (who isn’t now a days!)….all rambling off these sentences without too much interest in the answers.
He waved a hand at me while I was only starting to talk and he said ‘These cysts are ‘generally’ nothing… so I asked him whether his opinion was based on his own professional experience of Pineal Cysts…. or whether that was based on the entire history of Pineal Cysts in the world?'(just to gently remind him that he wasn’t God!).
We asked, ‘if the cyst was nothing, what was the cause of all my symptoms?’ He looked blank and vacant and turned to the only topic he seemed to know about which was ‘Headaches’, for which he said I should take headache tablets (considering my headaches were not the main symptom discussed with him here, and proving how he did not listen at all to anything I had said, he hung on the headaches and ignored all other symptoms)
He had no answer for what I could do with any other symptoms such as my visual disturbances and memory function! We asked him again what I was supposed to do now. He looked at a dead end, and so suggested that we do a Contrast MRI (by means of covering his own arse and appearing to do something helpful) but suggested that he will be phoning me with the same response as now, that this is not the cause of my symptoms.
Needless to say, I was pretty pissed off!! If he had given me the same answer, but had actually listened to me and about what my symptoms were to ensure he knew the full history, or if he seemed to know anything more than how to take headache tablets then I would be satisfied, baring in mind he had no case history or file sent to him in advance except the disc and info I brought on the day, but it was his cocky pre-rehearsed text book answer that irked me! So, he got his €200 for 5 mins work…. a prostitute would have been proud of him!
I managed to find another referral for a second Neuro, who we are looking to get a second opion from, and I am due to meet 5 days before I travel to Peru, so we will just have to wait and see what comes of this.
In the midst of all this chaos, my Mum discovered a FAB physio in Sandycove, Dublin, who specialises in Vestibular issues. Mam was attending her for Vertigo, and had been miraculously cured in seconds!! So I decided to take a trip to her a few months back to see if she could help with my motion and visual issues while waiting on Medical Appointments (it’s amazing how pro-active you become with a round the world trip looming!!)
Her name is Julianne, and she is a total gem… and she has been so so incredibly helpful! Before the MRI showed this cyst in my brain, she was the first person who could look at all my symptoms and say ‘Yes, you are not a crazy whacko who is just a complete Hypochondriac!’. It’s amazing how relieved you feel when all the symptoms inside your head, that nobody else can see, are understood by somebody on the outside who has experience in this area! The relief was massive!
She did these exercises with me to test for this Vestibular Neuritis and OMG! It was crazy how badly I did compared to how well I would have though to have done. All my symptoms were inside my head so to speak, but these tests she did were able to show the effects of my symptoms externally to me, where she too could see their effects – it was fab! Such reassurance I wasn’t going crazy!
She felt that I had Vestibular Neuritis and also suffering from Aura Migraines (what others get as headaches, I get as visual and motion and memory disturbances) which would be worsened by bright lit areas, busy rooms, too much visual stimulous (one of my prescriptions was to face a corner in a busy room, avoid shopping during busy times and don’t face busy bookshelves! I kid you not…. and in fairness it does have an effect on my symptoms). I’ve been doing daily excercises to strengthen my Vestibular and see if this could be part of the cause.
I definitely do feel that this is part of what is going on but need to rule this brain cyst out as the symptoms are just so incredibly similar to those with Symptomatic Pineal Cysts. However, I feel I may be a long way off getting any proper relief as I have been doing these exercises a while now and although my symptoms have not worsened in a steady decline as they were… some days they are bad and some days not as bad, but overall they are the same level daily, It would be great to know a timeline on relief….it would be fab if it is the VN because then I wouldn’t have to have my skull cut open….. but am desperate to have a proper concrete diagnosis so I can get on with things and see a light at the end of the tunnel so fingers crossed and watch this space! I am still waiting to undergo more tests and see more Neuros, etc.
After all this long blurb…. essentially, I don’t yet have an answer yet… which I why I was avoiding writing it…..Maybe it’s vestibular, maybe it’s just stress, maybe Penelope is causing problems… I dunno… it’s a waiting game… but all I know is that nothing is stopping me from going to Peru on my Ayahuasca trip or the Outback in Oz…..after that….we’ll see!!
I know this was a long read peeps, but you never know who is going to read this and who it might just strike a cord with. I know it felt amazing reading these kind of blogs when I was looking up my symptoms… so I hope I can help someone with theirs…. even just to add some hope and let you know you are not a total looney!!
PLEASE DO FEEL FREE TO COMMENT, LIKE OR SHARE MY STORY…. SHARING IS CARING! & COMMENTS LET ME KNOW I’M KEEPING YOU INTERESTED 🙂