Well up until today I’ve been doing pretty well and staying around 70% give or take most days. I’m still symptomatic throughout the day but it’s usally tolerable and I’ve still been working 3 days a week.
Until today when the sh*t has hit the fan!
I have slept really badly the past 2 nights but after arriving to work today, by mid morning my vision started playing up and everything started swaying. I thought I’d take an early lunch and get a good hour of air and walking outside. Well my God, that was the worst I’ve felt in the past 2 or 3 months - I literally thought I was going to have to grab someone or something awful was going to happen to me!
My brainstem goes absolutely mental and this is my primary symptom now - but today I literally felt like I’d been plugged into something. My head was going so crazy, I could just about keep on the straight and narrow!
I threw 2mg Valium down my neck and grabbed some food quickly and after an hour things started to settle down. I’m back at my desk and I’ve just had a mini attack (like a half version of the usual attacks I’ve had throughout this) where my brain flips over to the side and then everything rattles inside my head. This is the first attack in 2 months!
Also the past 3 weeks I’ve noticed massively now that any perfume or worse, cigarette smoke sends me completely nuts!! I’ve never had this at all before now, no triggers that I could identify but now I’m really struggling with any smell. A lady at work wears the Aromatics by Clinique which is one of the strongest smelling perfumes you can get and every time she walks past me I have to put napkins over my face! Same on the trains or walking down the streets of London town where there are smells a plenty… they are now crippling me.
I’m at 65mg Nori and have also been taking the Peri 8mg per night and 4mg in the morning. To be honest, I dont think the Peri has made any difference at all, or if it has, it’s marginal. I’m thinking of dumping the Peri and continuing to go up on the Nori - doc wants me at 75mg before he considers adding a new med.
I’m due to commence my trip back to NZ on the 8th Oct and I’m just terrified I’m going to have a massive relapse whilst on the road as the first 7 weeks of our trip are in South East Asia. V worried sniff.
I’m hoping today is just a one off bad crash day and not the sign of things to come. But God knows why I’m getting smell triggers 10.5 months into this BS!!
Sounds very disturbing. I too am bothered by strong smells, though not as much as I’m messed up by weather changes. One little thing I might remind you of is that you’ve pulled through every time in the past,so it’s a safe bet you’ll get through this one fine, including the trip to NZ. (I’m kind of chicken; I haven’t even called my friend in NZ in ages, just email him.)
Or I could blither away as usual, and point out that when the shit hits the fan,the very first thing you want to do, if you’re smell-sensitive, is turn off the fan.
Or I could go all sweet, and say that you have scads of fans on this board,and lots of us have been hit by very similar shit.
I feel for you. Having experienced lots of crashes myself with all sorts of various old and new symptoms appearing I know how totally frustrating, demoralising and scary it can be, especially when you have work to do or plans to go after. I’ve been reduced to tears many a time but somehow have always managed to get back to baseline, even though there were many times believe me that I thought I was done for. These episodes make you feel like that.
I too have had the most awful times dealing with smells. I go through phases when they bother me. No pattern, just seems random. Perfume, meat cooking, cigarette smoke, after shave. I can go for months with nothing bothering me then get up one day and wham… they literally sicken me. And some are simply impossible to avoid. Horrible.
Muppo, I hope you get over this quickly and get your confidence restored. The ups and downs of MAV are a nightmare. Feel better soon.
Aw Muppo…I hate to hear this… Although I don’t know you personally of course, you seem to be the “cheerleader” of this group… I too have had a lot of issues lately… smells are horrible too…I am very familiar with aromatics by clinique…it is soooo strong!! As we all know, these crashes can come from nowhere… and the meds can also either help for awhile…or all of the sudden stop helping. I think that you should just rest as much as you possibly can, steer clear of “perfume woman” and maybe take the valium a bit more to help you through. We’re all in this together until a cure is found and I hope you get your health back quickly :roll: Also, I know that travel usually helps me for whatever reason… the flight may be difficult, but sometimes just being in different environment helps!! Take good care my friend!!
Sorry to hear you’re feeling so crap all of a sudden. Don’t sweat it too much though. I’m sure if you just lower your activity levels and chill on all fronts, the symptoms should burn out.
I totally get the smell hell. Why people show up to work wearing god-awful perfume I’ll never understand. There should be laws about not wearing perfumes in an office environment.
Or I could blither away as usual, and point out that when the shit hits the fan,the very first thing you want to do, if you’re smell-sensitive, is turn off the fan.
Or I could go all sweet, and say that you have scads of fans on this board,and lots of us have been hit by very similar shit.
— End quote
:lol:
Well I went straight home to bed last night and feel numb and exhausted today. However, reading these post has put a smile on my face for the first time in 2 days. David, your comment above literally had me falling off the chair laughing - you’re so funny and I love your somewhat twisted humour - it rocks!
Dee/Brenda/Scottie - thanks for your ever continuing support - sometimes losing myself in this forum is the only place I feel safe. I just find it so amazing that you can be plodding along and out of nowhere BAMB :!:
I hope you’re all hanging in there too - muchos loveos
Oh dear I feel for you. What is going on we all got 70% better then in the last week crashed. I’ve just had a horrible incident in BHS …also downed some valium!
And I went to work feeling great, had a really easy morning, sat down for a cuppa and wham! Nauseous rotatory sensation in back of head. Luckily it was only ten mins before leaving time so now I’m home.
Dizzy x
Ps haven’t started topamax yet. Thought I’d wait till weekend, being the procrastinator that I am.
Sorry to hear! Take the good with the bad… For every day that you have been feeling more and more “normal” you have to expect an occasional "off"day or 2. We all have ups, downs, great days, so so days, horrible days etc. Try and stay calm, because I think anxiety can definitely mess with the symptoms more. You will get back to where you were and farther…Hang in there!!!
Same on the trains or walking down the streets of London town where there are smells a plenty… they are now crippling me.