Frustrated as heck

Blimey I was going to make a general post but seems like we are all experiencing a crash. I had a wonderful 3-4 weeks back to 70% improvement. Driving , going out, over eating then crash symptoms much worse and we are off! Doe any Dr know why it does it? Is it that I over did it activity wise or is something tipping the triggers over the top?

You are right Fiona, many are suffering now, even my Meniere’s friends are having a rough go of it.

I wonder if it a combination of all the stresses of the holiday and all the extra stuff we eat and drink.

I’m having a real tough time too! Everyone around me’s got colds and 'flu, so that may have something to do with it. What is really upsetting and frustrating is that dh is now saying things like ‘for God’s sake it’s only Migraine’, ‘you’re not even seriously ill’, ‘put it into perspective’ etc. He reckons I’ve been worse since my MAV diagnosis as now I’ve got a label to hang on to.

I’m wondering if there’s any truth in this. Now we know it’s ‘not all in our heads’ so to speak, I wonder if some of us think subconsciously, ‘well, I really do have an organic condition, therefore if I think I feel bad, I do, and I can’t help/control it’. Also, since other people have it too, I sometimes paradoxically feels more hopeless. But of course it’s also great knowing I’m not alone.

I CAN’T SNAP OUT OF IT… I HAVE MAV!

Playing devil’s advocate here (a bit).

I’m really hoping CBT’s gonna help me with this eternal struggle of the mind.

DizzyIzzy xx

I joined the cold club this morning… ARGHHHH!! It has been a really difficult month for me and like Scott, I travelled too which only added to my misery.

I think we do exceptionally well with our attitudes considering what we have to deal with on a daily basis and I think everyone should give themselves a break and a pat on the back.

There is this wonderful letter on the Meniere’s site that I frequent and I will post it over here since most of it is relevant to us too.

I am sure you will all identify yourselves in it and you can print it off and give it to those who give you a hard time.

Here it is:

Author: Tina McDonald

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus - imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee - It drowns everything else out.

Vertigo - Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure - only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular of a schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down - pick it up - lift it - drive - get a job - walk without a cane” Its because I know these things can either bring on an attack - I couldn’t do them on a regular schedule because of the symptoms - or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes."

wow it sounds so much like Mav!
jen :frowning:

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I joined the cold club this morning… ARGHHHH!!

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I keep going farther and farther down the sh*tter as well – one week straight with no respite, not even a hint. I’ve spent three straight nights with a very tripped out disorientated head, eyes feeling as though they’re moving around all by themselves, yet still I sleep while dizzy. Can’t hold my gaze on anything and any computer screen is brutal. Have trouble watching television as well. This is worse than anything I dealt with on return from the recent Toronto trip which is really surprising and it was only New Zealand! Of course the days of dizziness start to turn into a very low mood.

What the hell is going on with everyone? Post Christmas meltdown?

Well it can’t be the weather or anything as we’re scattered all over the globe. Could be something to do with Earth’s position in the Zodiac :lol:

DizzyIzzy

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Well it can’t be the weather or anything as we’re scattered all over the globe. Could be something to do with Earth’s position in the Zodiac :lol:

DizzyIzzy

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Perhaps the earth got nudged off its axis a little bit?

I almost always get sicker once the pollen starts popping out in January then i’m super sick for months. It seems like the holidays have maybe made some of us sicker. I’m glad i have cold wintery weather on the way to keep the pollen from comng out :slight_smile:

c

Well migraine actually causes depression with me. When the migraine lifts the depression usually lifts like magic. Mind you, I had a whole 7 days of continuous migraine over Xmas and kept on going (took the painkillers) but I didnt have the dizziness, just the migraine. I think its the lead up to Xmas, the extra pressure to enjoy yourself and to do things you might usually not bother doing. I know I get more migraine every Xmas. Now that its all over, the migraine has gone, head had been a lot better last few days than usual, less dizziness. I didnt eat a lot of bad stuff over Xmas either, but I have cleaned the diet up a lot the last week, due to the irritable bowel I have had for 10 weeks straight, so thats helping.

Scott, have you just got back from travelling again? Thats always a big trigger, the travel, and doing too much.

Christine

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Well migraine actually causes depression with me.

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I know this all too well Christine. You and I really do share similar symptoms. I cannot believe how smashed I’m getting post holiday. It really puts me off ever going anywhere again. Yesterday when I was out walking around it was like I had just emerged from a bad bout of the flu. I was walking slowly with very little energy and needed frequent breaks. At 4 PM another big round of disorientation hit complete with a doom feeling. Before leaving to NZ I was running around town feeling good energy wise, just some fallout from the interview stress. Nothing like this though.

Do you find proper sleep is critical for you Christine? Sleep disruption or lack thereof is possibly the worst trigger I have – worse than stress.

Scott

it’s horrible eveyrone is suffering so badly right now.

Speaking of sleep i don’t sleep well - i wake up every hour or two. I went to a sleep specialist person the other day - i need to do a few things - esp turning the alarm around because i look at it every time i wake up and count the hours i have til the alarm goes off. i also need to get up and do something if i am awake for more than 20 minutes. Illl try these things.

i haven’t slept well in years.

hope you all feel better soon

chris

Chris – your poor sleep is probably the number one trigger for your migraines followed by anxiety. The problem is, as long as your migraines keep running your life, they will keep screwing up your sleep and so goes the viscious cycle of poor sleep (trigger) → migraine → sensitisation → more poor sleep → more migraine activity → more sensitisation → and on it goes.

If you cannot handle the idea of taking any of the migraine meds, what about tackling your sleep full force? Do everything you can to sleep and definitely stop looking at the clock in the night. When I wake up in the night I NEVER look at the time. Pull it out of the wall and use your cell phone for an alarm. Looking at the time at 3 AM is a guaranteed way to start your mind going off and is a big no-no. Have you ever tried Trazodone for sleep? I’ve heard good things about it.

S

Scott, I am still getting slammed too. The cold is right in my lungs now and it is playing havoc with my MAV symptoms. I have been sick for pretty much a month now starting with my trip to Mexico and the gastro issues I had there in December. I am going on a cruise on the 22nd on this month and I am not even looking forward to it if I have to continue to go through all this crap.

It really sucks this MAV thing.

What a bummer Caroline. The thing I try to remember is that even though you can be feeling completely sh*t house on a given day as a cycle is occurring, it can all clear up rather fast too once it’s run its course or the virus burns out. You’ve still got nearly 2 weeks to get over this. If you can knock the virus out within the next week you should be good to go for the 22nd.

I know the feeling when something important is coming such as a holiday and wondering if this mother is going to screw up the plans. All you can do is just carry on and stick to the plan and hope that the damned thing just goes. I find things usually turn out far better than we think they will.

Hang in there … S

on the sleep side of things I find inhaling some lavender (not literally, but some essential oil on the pillow) is very helpful for me - I’ve also had great success with a lavender and hops sleep pillow - hops flowers are VERY sleep making :lol:

Scott…you hit the nail on the head with your description about sleep deprivation!

I can’t easily go to bed because I feel woozy, I wake up several times during the night because I feel woozy…and mornings are as hellish as one can imagine.

So with that, I do not get a good nights sleep. And without a good nights sleep, I feel worse. And when I feel worse, I can’t sleep…(Are you guys seeing a pattern here :shock: )

I feel for you guys and wish I could wave a magic wand and make us all “normal”. In the meantime, I will say an extra prayer for you all in hopes of getting some sort of respit from this garbage.

Your dizzy friend, Todd

(By the way, when I finally beat this sh**, I am going to have a big party with steaks, lobster tails, and yes, Margaritas for all! Get ready to celebrate!)
There will be an open invitation to Spokane with food and drinks aplenty :smiley:

Todd – looking forward to the celebration already. I’ll whip up my lemon, garlic, chili, prawn pasta for the masses. A mojito would hit the spot too if you can bring in the Bacardi.

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I find inhaling some lavender

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So I’m picturing you cutting lavendar lines on a mirror with a razor blade and then vacuuming it up all through a 50 dollar note before bed. :lol:

Lavendar gave me a real bad migraine. Also when I had a body massage and they used an orange smelling oil. Its all too strong for me.

Sleep Scott, what is sleep??? I remember only sleeping 4 hrs before my Accounts exam at school when I was 16 and that has been the pattern of my life. Lot worse since my hormones have reduced. I am trying everything to try and get more than an average of 4 hrs sleep a night and its all over the shop. One night I go straight to sleep and sleep 4 hrs then awake all night, another night dont get to sleep till 5 in the morning then sleep 3 hrs. If I sleep 5 hrs, that is a good nights sleep for me and I feel better for it. Trouble is, anything I take that works, eg. Amitriptyline, I wake with a drugged hungover head that lasts the good part of the day. I have some Sominex to try (promethazine) bit scared to take it as it says not to give to babies under two as it can stop them breathing, and I dont know what this heart racing in the night is.

I slept well on progesterone Scott! Care to try it :slight_smile:

When I feel worse from doing too much (as we do on holidays), my only answer every time is complete rest for a couple of days, then I start to come out of it.

Christine