So here's a short update:
Went to see my neurologist on Thursday hoping for some kind of reassurance to settle my anxieties.
I told him all about my ear troubles. He asked about any new symptoms, of which I have none (yay!) and then he did the usual neuro tests…checking reflexes, watching me walk, checking my balance, hand/eye coordination, eye sight etc. And that was all good. He even commented on my weight loss and said I was looking fit!
My neurologist did refer me to get an MRI a little earlier than usual. I am booked in for early January. I asked him what my ear issues could be…his first response was "It's probably nothing" then he said the MRI will rule out 'something vascular something or rather'. Okay cool. I didn't even bother asking what THAT was, or trying to remember so I can google it (quite proud of this actually). I just asked if I needed to worry, and if there was anything I could do. The plain and simple answer was no. Just RELAX Sascha!
So it (the ear business) has been settling down a bit since it started, but it is still there.
I do feel relieved after seeing my neurologist and this is what I needed (M too). He is a top bloke.
Now I can just look forward to the school holidays and try to enjoy the summer (without getting too hot). Although, I have woken up today with a sore throat and not feeling 100%. IF I get sick, it will be my first time since starting Gilenya I have been sick. Not good. Not recommended. But let's wait and see - there's always fucking something isn't there?
Friday, 13 December 2013
Sunday, 8 December 2013
Hearing things (and getting married)
Hello strangers!
I just looked at the last post I wrote and I wrote it in JULY! Half a year has almost passed. WOW.
I've been doing okay since then but I have booked an appointment with my neurologist on Thursday this week. Why? Because I have had some issues with hearing my own pulse in my ear. This sounds a bit ridiculous. It's really quite difficult to explain.
Oh yeah, I got married the other week! It was an amazing night. M and I had an intimate ceremony and reception all in the one place. There were no flowers, no cake cutting or fancy pants centrepieces and no white dress. We then headed up to Byron Bay for a pre-honeymoon honeymoon. We hope to head to Europe next year when the weather is warmer than what it would be now.
Now, those of you who have MS yourselves will completely understand me when I say how exhausted I was after 'the big day'. It has been months and months of organising and small amounts of stress, and the BOOM! It's all over with in about 6 hours. Crazy, but COMPLETELY worth the effort. The wedding also coincided with a very busy time of the year for me at work. But I managed and got through. However, this ear thing had started a few weeks before the wedding and I really didn't worry too much at the time, but it seems that after the wedding it began to really start worrying me. So I actually took a day off before we headed to Byron Bay and saw a GP (same practice but not my usual doc) about it. I was finding it was really affecting my going to sleep and in turn making me feel incredibly anxious.
Now this will not be surprising to most of you, but yes, I did google my symptoms. Pulsatile Tinnitus. And the more I read the more worried I became, naturally.
So I was fortunate enough to get an appointment at very short notice…saw the GP. She listened to my veins and stuff around my ears and temples, asked if I had been experiencing any headaches, how long it's been happening and a few other things. She couldn't tell me what it was (or chose not to tell me) so consulted with another GP who agreed that she should contact my neurologist. She tried to catch him, but he was in a meeting. Argh! Meetings. Then asked me to return later in the day after she spoke with him.
There was about an hour and a half wait until I had to go back to see her. I cried during this time. I was FREAKING OUT!
The GP called me about 3 minutes before M and I were about to leave to see her. She said the Neuro doesn't believe it is related to my MS but if it continues over the next few weeks, I should book in to see him before Christmas. The GP was aware that I was off on my honeymoon the next day and wished me a good time etc. I said to her "So I have nothing to worry about?". She said I had nothing to worry about. Hmmm, well no, I think I do. Plus it's probably one of the hardest things to ignore!
So off we went to Byron Bay. It was great. Ate heaps. Drank a little (one hangover over 5 days ain't too bad!). Unfortunately sleeping in was near impossible, because the sound in my ears would wake me. I also remember one night I had so much trouble trying to sleep. I started to silently freak out. I could almost say I was in a panic at moments…like when I was just about falling off to sleep, I felt myself jolt and wake suddenly, sometimes making myself sit up. It was not ideal and it kept me awake for hours.
Once we returned home, I called my Neuro's office and made an appointment. I have no idea what might happen when I see him. But what I feel I really need is some kind of confident answer about how I should be handling this. Is it true that I have nothing to worry about? Can I do something to help it stop? Can I eat or not eat something that might be contributing to it? I don't think I believed the GP.
I am worried I might need to have another MRI. I am pretty much used to them now, though they are never fun - I try to imagine I am listening to really bad dub-step in a small club or something. If I need to get an MRI I think I will really start to freak out, as they (they? who? medical people) are obviously looking for something…but what? More lesions? If so, will I need to change meds? What if there is something else?
In the meantime, I have a kind of sleeping app that plays a repetitive 'pattern' of noise you might say. You can change the sounds…I have it on 'winds' and 'orchestral'. I've been using it for about 5 nights now and it seems to help me focus on something else rather than this fucking noise going on in my ear/head/whatever.
Besides all that, the only other thing to report is that I am LOVING being back teaching. It's so nice not to be stuck behind a desk. I have a big day tomorrow and will be so relieved when it's over. Lots of organising but I have enjoyed it HEAPS. Hoping to sign a new contract for work next year too - no art teaching but still teaching and trying to make a difference (corny aye?).
Now…it's 9:40pm and time for sleeping.
Thanks for reading.
I just looked at the last post I wrote and I wrote it in JULY! Half a year has almost passed. WOW.
I've been doing okay since then but I have booked an appointment with my neurologist on Thursday this week. Why? Because I have had some issues with hearing my own pulse in my ear. This sounds a bit ridiculous. It's really quite difficult to explain.
Oh yeah, I got married the other week! It was an amazing night. M and I had an intimate ceremony and reception all in the one place. There were no flowers, no cake cutting or fancy pants centrepieces and no white dress. We then headed up to Byron Bay for a pre-honeymoon honeymoon. We hope to head to Europe next year when the weather is warmer than what it would be now.
Now, those of you who have MS yourselves will completely understand me when I say how exhausted I was after 'the big day'. It has been months and months of organising and small amounts of stress, and the BOOM! It's all over with in about 6 hours. Crazy, but COMPLETELY worth the effort. The wedding also coincided with a very busy time of the year for me at work. But I managed and got through. However, this ear thing had started a few weeks before the wedding and I really didn't worry too much at the time, but it seems that after the wedding it began to really start worrying me. So I actually took a day off before we headed to Byron Bay and saw a GP (same practice but not my usual doc) about it. I was finding it was really affecting my going to sleep and in turn making me feel incredibly anxious.
Now this will not be surprising to most of you, but yes, I did google my symptoms. Pulsatile Tinnitus. And the more I read the more worried I became, naturally.
So I was fortunate enough to get an appointment at very short notice…saw the GP. She listened to my veins and stuff around my ears and temples, asked if I had been experiencing any headaches, how long it's been happening and a few other things. She couldn't tell me what it was (or chose not to tell me) so consulted with another GP who agreed that she should contact my neurologist. She tried to catch him, but he was in a meeting. Argh! Meetings. Then asked me to return later in the day after she spoke with him.
There was about an hour and a half wait until I had to go back to see her. I cried during this time. I was FREAKING OUT!
The GP called me about 3 minutes before M and I were about to leave to see her. She said the Neuro doesn't believe it is related to my MS but if it continues over the next few weeks, I should book in to see him before Christmas. The GP was aware that I was off on my honeymoon the next day and wished me a good time etc. I said to her "So I have nothing to worry about?". She said I had nothing to worry about. Hmmm, well no, I think I do. Plus it's probably one of the hardest things to ignore!
So off we went to Byron Bay. It was great. Ate heaps. Drank a little (one hangover over 5 days ain't too bad!). Unfortunately sleeping in was near impossible, because the sound in my ears would wake me. I also remember one night I had so much trouble trying to sleep. I started to silently freak out. I could almost say I was in a panic at moments…like when I was just about falling off to sleep, I felt myself jolt and wake suddenly, sometimes making myself sit up. It was not ideal and it kept me awake for hours.
Once we returned home, I called my Neuro's office and made an appointment. I have no idea what might happen when I see him. But what I feel I really need is some kind of confident answer about how I should be handling this. Is it true that I have nothing to worry about? Can I do something to help it stop? Can I eat or not eat something that might be contributing to it? I don't think I believed the GP.
I am worried I might need to have another MRI. I am pretty much used to them now, though they are never fun - I try to imagine I am listening to really bad dub-step in a small club or something. If I need to get an MRI I think I will really start to freak out, as they (they? who? medical people) are obviously looking for something…but what? More lesions? If so, will I need to change meds? What if there is something else?
In the meantime, I have a kind of sleeping app that plays a repetitive 'pattern' of noise you might say. You can change the sounds…I have it on 'winds' and 'orchestral'. I've been using it for about 5 nights now and it seems to help me focus on something else rather than this fucking noise going on in my ear/head/whatever.
Besides all that, the only other thing to report is that I am LOVING being back teaching. It's so nice not to be stuck behind a desk. I have a big day tomorrow and will be so relieved when it's over. Lots of organising but I have enjoyed it HEAPS. Hoping to sign a new contract for work next year too - no art teaching but still teaching and trying to make a difference (corny aye?).
Now…it's 9:40pm and time for sleeping.
Thanks for reading.
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