Want to compare symptoms, brief history of my problem

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Want to compare symptoms, brief history of my problem

jimjfox
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jimjfox
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Joined: Jan 24 2018, 12:29 PM

Jan 24 2018, 12:57 PM #1

Hi all, 
Background- hearing loss from noisy industrial workplace then tinnitus in left ear which is not intolerable. 72 y.o. first attack some 15-20 yrs ago after hearing loss, onset of tinnitus, panic attacks. That remains my most serious experience; first the sudden vertigo followed immediately by falling. Dragged myself to the toilet as my bowels cramped, sat & released the bowels along with vomiting painfully, then unconsciousness. Awoke freezing on the cold tile floor in the foetal position, a pool of near- black blood from my teeth punching thru my lower lip & tongue presumably on impact with the toilet seat or hard floor. No clue what had hit me, got in bed & slept fourteen hours, felt better & saw GP who was mystified. 
Less severe but still serious episodes recurred for several years at irregular intervals, eventually hospitalised after collapse in a supermarket where I pulled some shelves of produce down on myself, carried out on a stretcher. 13 hours of 'observation' resulted in initial diagnosis of BPV [BENIGN??] then a second diagnosis of Meniere's. 

Over the years my symptoms have mercifully decreased in severity and frequency but still get the occasional attack. Motorcycling a lifelong passion, given up after falling off 4-5 times luckily without significant injury. An hour ago sitting up in bed on this laptop- WHAM! Like being physically knocked sideways, causing me to yelp & grip the bed, jam my eyes shut & wait it out. Toilet visit soon after. Does every sufferer get this stomach/ bowel effect along with the vertigo? 

Have used Serc for many years, no problems but it is not 100% effective, not a cure but very helpful. Comments/ suggestions will be most welcome.
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Barbara
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Barbara
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Joined: Feb 5 2011, 09:43 PM

Jan 24 2018, 02:31 PM #2

Hi,
Welcome to the group :)
So sorry to hear of your sufferings and no, you are not alone in getting 'the bowel' involvement along with the nausea. I have heard many stories over the years (I too am early 70's and have suffered since 1996) but have been fortunate not to have bowel involvement.
 I have had 'the push/shove' feeling you had when on the lap top. This is a form of drop attack. Quick but very vicious.  
The only thing you can do is prepare well. Carry wet wipes and plastic bags and of course buccastem  with you and in your car if you drive although you may not be able to if you are getting drop attacks. Buccastem is a form of stemitil you place under your top lip to help ward off the nausea. It works faster than oral tablets but only used as required not regularly. 

I can't imagine riding a push bike let alone a motorbike so I think you are wise to stop this although I know it will be a wrench.
There is info in 'the library' about DVLA and driving  and the requirements to notify them

Hope that helps a little.

Barbara x
Got off the roundabout but still on the swings.
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jimjfox
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jimjfox
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Joined: Jan 24 2018, 12:29 PM

Jan 24 2018, 03:46 PM #3

Thanks, Barbara 
Have not heard of 'drop attack', nor of 'Buccastem' so this is useful info that I will ask my GP about. Or look it up online. 
Currently retired in Thailand where law is pretty lax & enforcement even more so! Now have 4 wheels & drive short distances slowly, always ready to stop, close eyes & switch on emergency indicators. 
Walking is equally as risky as driving- many roads have no footpath & if they do, they are broken, uneven with steps & obstacles everywhere. 
Still, life goes on & could be far worse than coping with Meniere's.... 

Best regards
Jim
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Terry H
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Terry H
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Joined: Apr 12 2012, 11:48 AM

Jan 24 2018, 04:03 PM #4

jimjfox wrote: Hi all, 
Background- hearing loss from noisy industrial workplace then tinnitus in left ear which is not intolerable. 72 y.o. first attack some 15-20 yrs ago after hearing loss, onset of tinnitus, panic attacks. That remains my most serious experience; first the sudden vertigo followed immediately by falling. Dragged myself to the toilet as my bowels cramped, sat & released the bowels along with vomiting painfully, then unconsciousness. Awoke freezing on the cold tile floor in the foetal position, a pool of near- black blood from my teeth punching thru my lower lip & tongue presumably on impact with the toilet seat or hard floor. No clue what had hit me, got in bed & slept fourteen hours, felt better & saw GP who was mystified. 
Less severe but still serious episodes recurred for several years at irregular intervals, eventually hospitalised after collapse in a supermarket where I pulled some shelves of produce down on myself, carried out on a stretcher. 13 hours of 'observation' resulted in initial diagnosis of BPV [BENIGN??] then a second diagnosis of Meniere's. 

Over the years my symptoms have mercifully decreased in severity and frequency but still get the occasional attack. Motorcycling a lifelong passion, given up after falling off 4-5 times luckily without significant injury. An hour ago sitting up in bed on this laptop- WHAM! Like being physically knocked sideways, causing me to yelp & grip the bed, jam my eyes shut & wait it out. Toilet visit soon after. Does every sufferer get this stomach/ bowel effect along with the vertigo? 

Have used Serc for many years, no problems but it is not 100% effective, not a cure but very helpful. Comments/ suggestions will be most welcome.
Serc never worked right for me either.

You might  want to try
Betahistine 16mg tablets  tablets - take one 3 Times Daily If Needed 

OR
Prochlorperazine 5mg tablets - Take one  3 Times Daily  if needed

And have these handy when you feel an attack coming on
these I use as an attack starts 
You push it up between your top lip  and your gum, and they dissolve into your system really quick
Prochlorperazine 3mg buccal tablets   1-2 twice daily if needed

of course you will have to consult your GP for these

hope it helps you
it will not kill us. It might try to kill our spirits
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jimjfox
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jimjfox
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Joined: Jan 24 2018, 12:29 PM

Jan 25 2018, 12:38 PM #5

THX, Terry!
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Treasure
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Jan 26 2018, 02:21 PM #6

[quote="jimjfox"]
Thanks, Barbara 
Have not heard of 'drop attack', nor of 'Buccastem' so this is useful info that I will ask my GP about. Or look it up online. 
Currently retired in Thailand where law is pretty lax & enforcement even more so! Now have 4 wheels & drive short distances slowly, always ready to stop, close eyes & switch on emergency indicators. 
Walking is equally as risky as driving- many roads have no footpath & if they do, they are broken, uneven with steps & obstacles everywhere. 
Still, life goes on & could be far worse than coping with Meniere's.... 

Best regards
Jim
[/quote]

Hello Jim, I thought you might be interested to read the essay I wrote for The Meniere's Society - this is a link to it:
http://www.menieres.org.uk/files/pdfs/Thomson.pdf  Best wishes, Philippa
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jimjfox
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jimjfox
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Joined: Jan 24 2018, 12:29 PM

Jan 26 2018, 04:43 PM #7

.pdf quite interesting- as much of it as I could comprehend! My condition was examined by 4 or more doctors, I had the CT scan, blood count, ECG & other tests- nothing abnormal, so the SCDS option is out. Never any pain, except the stomach cramps preceding extreme diarrhea, nor headaches [migraine or otherwise]. Disappointing that nausea/bowels/vomiting symptoms were not mentioned anywhere, too. IF these are characteristic of Meniere's Disease, then that would be  confirmation. 

Menieres was explained to me as undiagnosable, only the result of elimination of other possibles. I accept that. Never heard that BPPV has the side-effects I got. 
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Barbara
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Barbara
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Joined: Feb 5 2011, 09:43 PM

Jan 26 2018, 06:30 PM #8

I agree Jim. The above article is certainly of interest to some , I have a friend who was eventually diagnosed by SCDS. Unfortunately surgery didn't help and there are some very distinct symptoms like being able to hear body noises such as when you move your eyes from side to side as well as pulsating tinnitus.
Your symptoms overlap some of the Meniere's symptoms as did mine but I know my problem was endolymphatic hydrops secondary to surgery so if you like surgically induced Meniere's.  There are many that fall into the Meniere's Syndrome rather than true Meniere's but at the end of the day the name is irrelevant . What we all need is something to ease the symptoms and what helps one doesn't help another. I eventually had a labyrinthectomy to remove the semicircular canals from my already dead left ear. Right decision for me as I had nothing to lose but not offered to many because there is no going back and total hearing loss.
Vestibular Migraine does not have headache as a symptom usually but does give the upset tum and nausea and some people have a combination of Meniere's and Migraine which makes treatment difficult.
If you have had no problem taking Serc or the generic derivative you could perhaps try an increased dose. There are a growing number of people who take 48+mg x3 a day and it helps but not all GP's or consultants will agree to prescribe this dose although the literature on this is growing. You would need to take info with you I think.
Are you a member of the Meniere's Society www.menieres.org.uk    . There is lots of info on the website available without membership but also advantage in being a member as it does now have lots of research info. 
If you get long periods where you get no vertigo but feel as though you are on a boat or just off balance VRT may help. It certainly helped me when I needed to retrain my brain after the destruction. I have info I can send you if it will help.

Barbara x
Got off the roundabout but still on the swings.
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