Aka How I Got Into This Mess in the First Place
I started Several Days of Self Care because, as mentioned in the previous post, I was signed off sick from work for a week or so (hence several instead of seven ).
As Julie Andrews' saccharine nun says in The Sound of Music, let's start at the very beginning.
On 30 November 2018 I came back from my honeymoon. Feeling incredibly dizzy in the kitchen as I was about to cook dinner, I thought I was jet-lagged and went to bed. The dizziness however, persisted. After speaking to the audiologists we have at work and a trip to the doctor's, I was diagnosed with Benign Paroxysmal Positioning Vertigo (BPPV), a condition where crystals in the inner ear mess about with the balance system. I was told it would clear up within two weeks. It did not and I returned to the GP where I had the Dix-Hallpike manoeuvre performed (not as fancy as it sounds, you get pulled backwards over a bench and they look to see if your eyes are twitching), so I got referred for Meniere's Disease.
Then the worry started. Meniere's affects either 1 in 1000 or 1 in 2000 (depending on the source) according to the Meniere's Society. There are attacks or episodes of dizziness and vertigo which are completely random, fluctuating tinnitus, a feeling of pressure in the inner ear, and eventual profound hearing loss in the affected ear. This I could probably cope with if I knew when an attack was going to occur - right now I've managed to go about two weeks but it's making me worry if I'm about due for another one. Episodes don't give you a warning of when they're going to turn up. I've had them come on morning, noon, and night. Neither do they give you any indication of about how long they're going to last. I've had anything from 20 minutes, just the once, to eight hours or so at the longest. I've had numerous sick days off work which is a pain because if I don't work, I don't earn. Don't earn, don't pay the bills. Which worries me.
Another thing about attacks is where they will occur. If it's at home, then it's usually okay as I can lie on the sofa or go to bed. At work, I can usually make it slowly out of the store and get the bus. Ideally I need to be able to move slowly with something to hold on to. I might fall and hurt myself, or with outward appearances being what they are, other people may think I'm drunk. These things worry me.
The fact that I may also have profound hearing loss in one ear is concerning. I had an audiogram done and although both ears have hearing levels within the 'normal' range, my left (the affected ear) is worse than my right. I have an appointment at the hospital coming up where I'll have another audiogram so it'll be interesting to see the results and I'm hoping that it's not worse. This also worries me.
I do, however, have some reasons to think why it may not be Meniere's which I will list below:
1. Lack of nystagmus (rapid eye twitching from side to side). I've Googled various things and from what I gather, this is quite central to the Meniere's episode. Dizziness yes, but not with the twitching - like when you've had too much to drink and you can't look at an object properly.
2. I've not had episodes quite at the same frequency that I had to begin with. I'd have brain-fog days, days where I felt low-level amounts of dizziness when I felt a bit woozy and off balance but still able to do every day tasks, and days where I had fell episodes/attacks. However, this drop off recently may be down to my medication having the desired effect (Serc betahistine dihydrochloride 16mg three times a day). Or I could be in a remission period. I guess I'll have to wait in limbo until I've been seen at the hospital to find out.
Alongside this my ear has quirks of its own. It randomly aches, twitches from time to time (which makes a really irritating 'whump' sound), and I get a hollow sound where my voice seems incredibly loud in my own head and it seems as if I'm hearing myself from the outside rather than the inside, as if someone's put a metal box over my head. I've also had tinnitus for as long as I can remember, and though I have noticed changes in tones and clicks and volume, I can't discern if this is related to episodes I'm having or if it's normal for my ears.
If you add all the above together along with concerns about work including days off and informal and formal warnings, how people perceive me, wondering if others believe me as you can't see what's happening, trying to cope with at work whilst maintaining enthusiasm and drive and enjoyment in what I'm doing, ensuring that if I take time off then I can afford things I need to pay for, trying to plan for the future, and then to have hair fall out as well means that I feel almost suffocated by life. If we then add to that the fact that episodes can be triggered by stress, but the world makes you stressed, then I feel trapped. I know I've not got a diagnosis yet but until that appointment in a couple of weeks, when hopefully I'll get some answers. Until then, I'm probably going to continue feeling this way. Which worries me.
I started Several Days of Self Care because, as mentioned in the previous post, I was signed off sick from work for a week or so (hence several instead of seven ).
As Julie Andrews' saccharine nun says in The Sound of Music, let's start at the very beginning.
On 30 November 2018 I came back from my honeymoon. Feeling incredibly dizzy in the kitchen as I was about to cook dinner, I thought I was jet-lagged and went to bed. The dizziness however, persisted. After speaking to the audiologists we have at work and a trip to the doctor's, I was diagnosed with Benign Paroxysmal Positioning Vertigo (BPPV), a condition where crystals in the inner ear mess about with the balance system. I was told it would clear up within two weeks. It did not and I returned to the GP where I had the Dix-Hallpike manoeuvre performed (not as fancy as it sounds, you get pulled backwards over a bench and they look to see if your eyes are twitching), so I got referred for Meniere's Disease.
Then the worry started. Meniere's affects either 1 in 1000 or 1 in 2000 (depending on the source) according to the Meniere's Society. There are attacks or episodes of dizziness and vertigo which are completely random, fluctuating tinnitus, a feeling of pressure in the inner ear, and eventual profound hearing loss in the affected ear. This I could probably cope with if I knew when an attack was going to occur - right now I've managed to go about two weeks but it's making me worry if I'm about due for another one. Episodes don't give you a warning of when they're going to turn up. I've had them come on morning, noon, and night. Neither do they give you any indication of about how long they're going to last. I've had anything from 20 minutes, just the once, to eight hours or so at the longest. I've had numerous sick days off work which is a pain because if I don't work, I don't earn. Don't earn, don't pay the bills. Which worries me.
Another thing about attacks is where they will occur. If it's at home, then it's usually okay as I can lie on the sofa or go to bed. At work, I can usually make it slowly out of the store and get the bus. Ideally I need to be able to move slowly with something to hold on to. I might fall and hurt myself, or with outward appearances being what they are, other people may think I'm drunk. These things worry me.
The fact that I may also have profound hearing loss in one ear is concerning. I had an audiogram done and although both ears have hearing levels within the 'normal' range, my left (the affected ear) is worse than my right. I have an appointment at the hospital coming up where I'll have another audiogram so it'll be interesting to see the results and I'm hoping that it's not worse. This also worries me.
I do, however, have some reasons to think why it may not be Meniere's which I will list below:
1. Lack of nystagmus (rapid eye twitching from side to side). I've Googled various things and from what I gather, this is quite central to the Meniere's episode. Dizziness yes, but not with the twitching - like when you've had too much to drink and you can't look at an object properly.
2. I've not had episodes quite at the same frequency that I had to begin with. I'd have brain-fog days, days where I felt low-level amounts of dizziness when I felt a bit woozy and off balance but still able to do every day tasks, and days where I had fell episodes/attacks. However, this drop off recently may be down to my medication having the desired effect (Serc betahistine dihydrochloride 16mg three times a day). Or I could be in a remission period. I guess I'll have to wait in limbo until I've been seen at the hospital to find out.
Alongside this my ear has quirks of its own. It randomly aches, twitches from time to time (which makes a really irritating 'whump' sound), and I get a hollow sound where my voice seems incredibly loud in my own head and it seems as if I'm hearing myself from the outside rather than the inside, as if someone's put a metal box over my head. I've also had tinnitus for as long as I can remember, and though I have noticed changes in tones and clicks and volume, I can't discern if this is related to episodes I'm having or if it's normal for my ears.
If you add all the above together along with concerns about work including days off and informal and formal warnings, how people perceive me, wondering if others believe me as you can't see what's happening, trying to cope with at work whilst maintaining enthusiasm and drive and enjoyment in what I'm doing, ensuring that if I take time off then I can afford things I need to pay for, trying to plan for the future, and then to have hair fall out as well means that I feel almost suffocated by life. If we then add to that the fact that episodes can be triggered by stress, but the world makes you stressed, then I feel trapped. I know I've not got a diagnosis yet but until that appointment in a couple of weeks, when hopefully I'll get some answers. Until then, I'm probably going to continue feeling this way. Which worries me.
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