MERNIERE'S DISEASE - a rude awakening
One persons diary of their Merniere's Journey
Diary of Justin's Merniere’s Journey
Everyone who has Merniere’s experiences it differently and Justin's journey is probably one of the more extremes, but he does find a way to manage the condition and uses a diary to try and map out the triggers and find a way of coping. If this is in anyway useful, then he will know your relief.
If you are not up for reading his diary I have put a brief summary at the bottom of the page to show the things that helped him through.
The beginning
I wake up at 2am and feel like I have downed a bottle of whisky. The whole room is spinning and when I try to stand up I have to grab for furniture to make steady. I sit on the floor in the bathroom and prop myself up agains the cupboard, the blood draining from my face. The nausea begins to set in and I can hear my wife in the background firing questions at me whilst trying to work out what it could be. Brain tumour, the plates from my neck operation pressing on a nerve. After half an hour it begins to subside but leaves my body feeling drained and my mind mentally exhausted.
It’s not over
Still feeling nauseous and scared I book to see the GP. She advises me to take buccastem ….every….hr to deal with the nausea.This definitely helps but I am still feeling very strange.
I have a flash back to 2006 where I had a one off episode after work. Again, I had tried to walk to my car but found myself becoming dizzy and disorientated, luckily my colleague found me and I was taken to A and E where they diagnosed me with stress.
Organise to go and see the surgeon who put the plate in my neck and to have a scan. All looks okay so nothing to do with the operation.
It’s my father’s Celebration of Life and I pray that I will not have an episode as I am to reading his obituary and want to pay my respect. Sure enough at breakfast I begin to feel strange, taking anti-nausea tablets and focusing on the task ahead I manage to say my farewell and give him a wonderful send off. I greet old friends and family but then it hits me again, this time much more aggressively and it doesn’t seem to subside. I start vomiting and feeling extremely unwell. We call 111 and they tell us to head to A and E.The wait is painful and long, after a few hours it begins to subside so we decide to head back to the children and try and sleep.
From here on the attacks become more frequent so I decide to keep a diary.
Justin's diary
Sat 14th April
Very good day managed to mow the lawn and have a BBQ in the evening. Had an attack at 4.30am. Trying to work out what I had to eat that might have triggered the attack.
Sun 15th
Feel tired and off colour throughout the day. Slept for most of the day, watching snippets of TV.
Mon 16th
Continue to feel strange and unsteady with mild vertigo. Then from 4-5pm have a vertigo attack and feel very strange for the rest of the evening.
Tuesday 17th
Good day. Had a good run albeit slightly unsteady dizzy spells in the afternoon and then attack at 5.30pm, lasting 1.5hrs.
Wednesday 18th
Another strong vertigo attack at 6.30am. Very bad tinnitus and nausea all day. In the evening it begins to subside. Feel odd listless and can't shake it off. Took magnesium in the evening.
Thursday 19th
Better day but still not perfect. No dizzy spells until afternoon. Went for run and noticed when I came back an increase in tinnitus. Feeling very strange and nauseous. Tried to keep going but becoming progressively worse so force myself to eat and take meds then buccastem for the nausea. Went to bed early, no overt dizziness but feeling awful.
Friday 20th
Woke up feeling very sick, took buccastem but still felt sick all day. Managed to work but struggled with breakfast and lunch. Went for a walk in the early evening and felt slightly better after supper.
Saturday 21st
Woke up at 3am with a vertigo attack. Awful night felt dizzy and sick. Took buccastem at 6.30 am. Still felt sick and had to force food down me. Have started trying Qigong. Felt progressively better during the day and had a good evening.
Sunday 22nd (salt 2.1g)
No attack!! Good nights sleep but slightly foggy ear/ tinnitus. Did a 15min work out, rowing and 20 min swimming. No nausea. Tired in the evening and tinnitus up and down.
Monday 23rd. ( Salt 2.5g)
No registered attack albeit slightly fitfull night. Feel a bit better again. A 30 minute row. Much better morning, worked virtually, don’t want to risk travelling yet. No nausea, far less dizziness in day. Felt good in evening but tired.
Tuesday 24th
Mild sense of dizziness in the night but no attacks slept through slight nausea 30 minute rowing. Couple of moments in day when felt a bit weird so took time out from work. Okay in the afternoon. Had a dizzy spell at 10pm but didn’t turn into full attack. Still can’t work out the trigger? Slept well
Wednesday 25th
Woke up and felt okay. Did a 30 min workout. Unfortunately had an attack at 6.30pm-8.30pm, not caused by food as managed to eat after attack.
Thursday 28th
Minor attack at 4am and managed to go back to sleep. Woke with room spinning from 6.30- 9am. Took 1st dose of Prednisolone (a steroid hormone that is used to treat certain types of inflammatory, allergies and auto immune disorders). Feel progressively better in the afternoon. Went for a long walk and had my first glass of wine. Slept wel , currently taking beccahistine 9.2,8. Do I need to do something differently?
Friday 29th
Woke up feeling like I’ve slept ok but actually poor sleep (score 57`) according to Fitbit, Awake 4 times but watch reading is wrong as feel good BUT pronounced affect on sight, struggling to read my computer screen. Is this temporary? Noticed more pronounced echoing in ear/ tinnitus. Felt woozy at 5.30pm, shut eyes for 45 mins, didn’t resolve and went on until 8.30pm. Didn’t feel normal until about 9.30pm.
Saturday 30th
Best night sleep. Woke up feeling okay. Tinnitus still pronounced. Eye sight still affected. Rowed for 40mins. Good day but had minor attack in the evening. No bad signs but slight dizziness and not feeling myself.
Sunday 31st
Woke up feeling strange, had breakfast and then dizzy. Very depressed. Decided to get up and power through. I won’t let this beat me. Had a good conversation with a good friend who is a psychiatrist which has got me back on track. Continued to feel a bit strange (out of world) all day but carried on as normal . Went to the cinema with the family and really enjoyed the normallity, feeling happy. Had a glass of wine.
Monday
Woke at 6.15 feeling a bit dizzy but forced myself to get up and do a run. Felt better but still pronounced tinnitus. Went to stay with my wife's sister and husband in Hampshire and had a good evening with wine. They have kindly organised for me to see this amazing lady called Vicky.
Tuesday
Good sleep woke up at 8.30, did some meditation to calm me. Had an amazing reiki/ talking session with Vicky, she unlocked and released so many stresses and I left feeling so much lighter and more positive. She also used a Hopi candle which I wouldn't have let anyone else do but everything together definitely helped both physically and mentally.
Wednesday
Slept well, took meds. felt like a weight off my shoulders. Ordered two books Merniere's man in the kitchen and
31st March
I visit Mr Axon, an ENT specialist to look at my worsening hearing and the distracting booming sound. Both both eardrums look healthy with no sign of middle ear fluid or eardrum retraction.
23rd April
CT scan, which suggests some dehiscence (splitting) of my superior semi-circular canal, which might account for some of my symptoms. After repeating my hearing test it confirms anasymmetric right sensorineural hearing loss (that is a difference between left and right hearing). I Need to look ay hearing aids as it seems to be getting progressively worse
4th May
Arrange to se Mr Donnelly, the consulatant ENT surgeon to try and get to the bottom of the vertigo. He gives me a one week course of Prednisolone (40mg) once daily and added in Betahistine (16mg) I am advised to only take the Prochlorperazine when I am nauseated and not on a regular basis. I would like to review him in a couple of weeks
13th May
Meet with Mr Donnelly, the consultant ENT surgeon. He increases the Betahistine from 16mg/ 3 times daily to 24mg/ 3 times daily and also gives me Bendroflumethiazide (5mg) once daily. He will review me in a month and if things don't get better I may have to have a right intratympanic Depomedrone injection at his next appointment
Things that helped
- Keep a diary
- Exercise each day
- Monitor your diet
- Try a low salt diet
- Medication for nausea
- Try reiki
- Qi gong every morning
- balance exercises
- cut out stress
- tumeric - anti-inflammatory
