Sunday, 1 May 2016

Life Changes

I'm going through quite a few changes at the moment. I'm changing jobs in September - for various reasons I'm now finding myself moving schools at the end of this year, a bitter-sweet experience - and after 8 months of recurring symptoms, I finally got an appointment with an ENT specialist. Can't say I'm thrilled with the diagnosis.

At the moment, it looks as though I either have Meniere's Disease or Meniere's Syndrome. There is one very subtle difference between the two but neither are particularly pleasant.

The difference between it being the Meniere's Disease and Meniere's Syndrome?  The former has an unknown cause and the latter is caused by something else which could in some ways be more serious than having the unknown cause!

Ménière disease is idiopathic by definition, whereas Ménière syndrome can occur secondary to various processes interfering with normal production or resorption of endolymph (eg, endocrine abnormalities, trauma, electrolyte imbalance, autoimmune dysfunction, medications, parasitic infections, hyperlipidemia).

So the doctor has prescribed me some pills to take 3 times a day in an attempt to alleviate symptoms (I thought, sure, easy. 3 times a day, with food. Turns out I'm incredibly forgetful at work (schools are distracting places) and often only take them twice a day.).  So if the symptoms get alleviated, it's probably the disease. If they don't, then it's something more serious than a debilitating disease that results in uni or bi-lateral deafness.

Typically, at the time of seeing the doctor, my symptoms weren't very textbook, in that I only noted one or two symptoms at a time (such as last night where I was SURE I'd have another vertigo attack but it never came, it may have been a migraine instead). Or rather, I wasn't paying full attention to the signs and perhaps didn't describe them well enough.  Now that I'm more informed, I do feel like I've been having definite Meniere's-y attacks.

Since seeing the doctor I've had a pretty bad attack at work. It was the quickest but strongest one I'd had.  See, in June last year, I had to go home early because I couldn't stand properly and the room was spinning. I had had symptoms similar to labrynthitis in the run up, so doctors assumed it was caused by a viral infection.  I have had 5 or more (I think more, but as I didn't see a doctor each time, I can't be sure) cases where I've either experienced vertigo or "tunnel ear" as I like to call it or really loud bursts of tinnitus.

Because they were spaced out roughly once a month (averages) and I didn't always have all three symptoms together, the doctor couldn't say outright that it was Meniere's. I have had an increase in bad headaches and I had my first migraine aura in the last 4 months, which indicates a vestibular problem.

Well, last Sunday I went out with a friend. I had two mildly alcoholic daiquiris (they were worth it!)  which did no more than make me feel a weee bit giddy and was easily walked off and then I had a small but stronger-than-usual Mocha at Cafe Nero.

On Tuesday morning at 4am, I was awoken by deafeningly loud tinnitus. Really horrible. But as I'd had it before and at that time, loudness and pitch, I wasn't too worried. Just unsure of whether to get up and stay awake watching something quietly to distract myself or to try counting myself to sleep.  I went with the latter. I was very tired in the morning, but it was a school trip so I didn't have to be cognitively brilliant - just alert enough to monitor the comings and goings of the children.

Then I had another tinnitus attack at 3am on Wednesday morning. Of course by the staff meeting on Wednesday afternoon, I was proper tired.

I slept through the night on Wednesday night into Thursday. As a result I felt great. I went to work, I was pretty chipper.

I was setting up my laptop in the classroom then got up to collect the children from the playground when, oh-oh, my troublesome ear felt "full".  Sign number one.

I felt light headed. Sign number 2.

I made my way carefully down the corridor, saw that other teachers weren't outside yet and had a sit down. Giddiness only got worse. Sign number 3.

I managed to make myself walk in a straight line, collect my (fortunately) waiting and ready children, smile at them and make eye contact with parents. I took them in and then stood, holding onto the wall a bit, counting down the girls so that they were all in class quickly. (Every second counts!)

I sat down to do the register. I told the children that I had a sort of illness that comes and goes and at the moment I couldn't hear properly out of my right ear - could they all speak up nice and clearly today?
As I got further down the list, I was less and less able to move my head. I could see that one of the girls had noticed I wasn't really moving.  I managed to get the register done. I had a quick word with my TA, telling her she would have to take the children to assembly.  I asked one of my more together children to get the head (I'd seen her walking past) and tell her I had vertigo. By the time the head came, I was unable to move at all and it felt as though my eyeballs were rotating in separate directions, rather like a confused cartoon character.

The whole room was moving, kinda. The tables were warping as well. It was absolutely horrible. The head asked whether I needed to go home, but at that point I couldn't say - I just told her that it could last anywhere between 20 minutes and a few hours. She remained optimistic and said that the assembly was 25 minutes so to stay put. I knew that my TA could cover my class at least for the first hour, so I was willing to move to the table in the corner of the room, to help keep an eye but my ex-nurse colleague decided it would be much better to move me to the staff room and helped me walk there. So embarrassing, since some children and other adults saw me being half carried up the corridor. There may have been crying once I was in the privacy of the staff room.

Anyway, I sat in the staff room, the part where my head joins my neck feeling heavier and heavier and unable to move for about an hour. After 40 minutes of vertigo, I was persuaded to go home. I called my grandparents who collected me and looked after me for the day. By 12pm I was no longer nauseous or dizzy.  And then I slept for two hours after lunch because that attack really took it out of me!

I'm fairly sure it was the caffeine that did it - though the alcohol didn't particularly help. Reading up on it, caffeine is what caused the tinnitus attacks, bare minimum. I'm not massively convinced about alcohol being a trigger as I've had more occasions where I've drunk something alcoholic and been fine than I can think of where I've drunk something and then had an attack.

I'm going to start a food diary today (1st of the month and all that) so that I can try to spot patterns. The problem is, it would seem that everybody with Meniere's has different triggers! The general advice is "low-salt diets, cut out caffeine, cut out alcohol, cut out sugar, avoid chocolate because it's an anti-oxidant!" whilst others say "actually, drink in moderation, you'll be fine" and "I can actually eat peanut butter and go without attacks so don't panic yet".

So I'll just have to monitor what I eat myself.  I already had a fairly low-salt diet, I think. I mean, ok, lately I've had a lot of ready meals or eaten out (which is really hard to monitor, salt-wise) but I dislike buying food that has anything over 23% of the RDA of salt in, because it's just too salty for me. I hate being thirsty all the time and I hate salty foods.  I do love cheese though. So if it turns out that I can't have lots of cheese, I might actually cry. Particularly since my gran's making Cheese Fondue for my birthday!

I do think my last vertigo attack was largely down to the tinnitus and the extreme tiredness. That's something everyone can agree on: tiredness and stress will increase attack frequency.

So yeah. I'm going to have to start making more of an effort with my cooking. Fortunately the winter (temperatures don't match but whatever) is over and there's a lot more daylight, which helps me last longer energy-wise, so I'll try to prepare more lunches for the day before and cook actual bread and whatnot.  It is also salad season, so that cuts out loads of salt and things.

I just worry about going to Japan now. Apparently flying will be pleasant - the pressure goes and I may have 28 hours tinnitus free! So perhaps climbing Fuji won't be too bad.

Japanese food can be rather salty - specially when they soak everything in soy. I love soy sauce but my god, everything in moderation! I guess I'll live on steamed rice for a month!

So my to do list this week is:

  • Make another doctor's appointment to get a referral for a CT scan (I'd rather rule all that out)
  • Get a repeat prescription of prochlorperizine and double check dosage for acute vertigo attacks
  • Start a food and symptom diary (symptoms have been logged on phone calendar) which involves buying new stationary - any excuse, amirite?
  • Make lunch for the week - grated carrot, grated apple and lemon juice salad with a carefully measured amount of mayonnaise for extra flavour
  • Ensure I drink a lot throughout the day - green tea, flavoured water from home, etc.
  • Plan evening meals with partner to ensure I eat properly
  • Ensure I continue to work from 8 - 6pm every day (professional hours), thus keeping on top of marking and stuff that needs doing and allowing me to eat healthily, sleep well and participate in Body Balance classes at least once a week (I'd like to go back to twice a week)
  • Ensure I have ear plugs (for noise-sensitive days. Omg so useful in the cinema this week) at all times

As it's the bank holiday weekend, I think I'll start easy by browsing stationary online and making some bread.

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