The Vestibular Migraine & Secondary Hydrops Community
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It's baaaaaaaack!


#1

Can’t believe i’m here again, trying to figure out what the heck caused it and how to get back to “almost normal” I’ve been for the past 2 years. Help! I can point to an accumulation of bad things: bingewatching shows, eating bananas and chocolate daily, not eating well in general, but this is tough.

Does anyone have trouble, e.g. get dizzier lying down for long periods while awake?

Help!

Tnx,

formerly almost normal Shazam


#2

Sorry to hear. You need to go back to proper migraine diet and lifestyle. I am on same amitriptyline and effexor and still have bad relapses.


#3

well, get back to routine I guess. And I feel dizzier laying down now, second sitting still, and almost none standing… weird.


#4

Oh crp Shazam! Sorry to hear.

Could it be a cold causing a relapse?

Don’t worry too much, you are sure to get on top of it again! Follow the usual dietary advice for starters.

And yes lying down flat is bad for MAV at some stages. At one point I used to get vertigo every time I lay down :frowning:


#5

Do you have any sense whether sitting up in bed and reading or lying down and reading is better? It’s about all i can do at the moment. I can go on walks but start to get too woozy. I hope i can drive later today so i can work (which involves walking.) Oy. Not a good time for this to happen!


#6

I think this is just the nature of The Beast. It’s chronic and recurring. And one has to remember the drugs are only masking the symptoms. They aren’t a ‘cure’. Being human we feel better and gradually drop the ‘treatment’. Skip the diet, alter our lifestyle away from the restrictive migraine regime towards our own preference and BAM. And quite often everything will just fall apart simply because it does. We haven’t done anything negative at all. Personally I cannot say I was ‘almost normal’ for two years but I was functioning up to a point, maybe 75-80% and although leading a restricted life (no restaurants, very few supermarkets, no long car journeys etc) I was vertical rather than horizontal, then three weeks ago, woke up one Monday morning unable to stand. Lasted ten days, with a funny little recovery in the middle, and now I’m struggling to see 75% in the distance again.

Perhaps reading isn’t a good idea at all eitherway.

I don’t get dizzier lying down but since this relapse I get vertigo as I try to get from horizontal to vertical every morning, bending forwards abd with head movements, all symptoms I’d almost forgotten. All signs the vestibular system is temporarily ‘up the creek’ one might say! Helen


#7

Yep, it certainly comes and goes, and comes back again! And again!

If I was a Drama Queen I’d say of my recent relapse coming as it did immediately after My Best Day in four years and at the end of two weeks on an upwards trajectory with more than half the days at 100%, I felt rather like I was a little toy in the hands of some sadistic giant who wanted me to know how good fully functioning balance could be before throwing me back into the MAV Pit, so perhaps it’s just as well I had any Drama Queen tendencies knocked out of me at a very young age by a very strict Granny!. Helen


#8

Today i have those heavy legs like I’m walking under water from the waist down. First time in more than 2 years. Waaaaahhhh :frowning:


#9

omg had that … long time ago now :frowning:

also had feeling one leg was longer than the other … most odd!!


#10

i think is normal to over do things after being so careful because of this. I was thinking yesterday that we must accept this as a chronic condition and that we will have relapses. I think our mindset to face those relapses after first crisis will help us bounce back faster. Let the relapse runs its course, take a break, and go back to MAV diet/ routine. Sending you good energy for a quick recovery.


#11

That’s a symptom that I thought was “just me”! I’m so sorry you’ve had a relapse, they sure are scary! It’s so strange how we can almost forget how awful this beast is when we are well. Wishing you a speedy recovery!


#12

I thought I was relapsing hard last week. Then today my husband is all, ‘what cursed virus did you give me woman? My hands don’t feel connected to my body, I’m dizzy and nauseous and my head hurts and I’m so tired. I can’t think. My nose is runny. What have you done?’

I’m like, ‘snap, that was a virus?! What a waste of good rescue meds.’


#13

One of my biggest fears is catching a sinus bug! I can’t imagine trying to cope with that along with the average MAV brain! What type of rescue meds do you use? I’ve never used one. Dramamine made me feel much worse and that’s the only thing I ever tried.


#14

Meclizine, which is Dramamine. Helps me. Mileage varies on that one.

Promethazine, an anti-emetic for nausea. I have two other Rx for that, for variety. Nausea is sort of a lifestyle for me.

Fioricet, a barbiturate/caffeine/acetaminophen combo for migraine. I failed the triptans and ergots. I have another condition that causes pain. NSAIDs and OTC acetaminophen don’t work at all anymore, but NSAIDs do aggravate my already sketchy kidney function. I’ve had to give those up.

Benadryl when migraine is dancing a jig on my trigeminal nerve.


#15

Hello mate, I have this since i was 15. A litre of water every morning when i wake up and be careful what you eat, you can have a chocolate once a week also rich in msg foods but not every day. Try to drink a litre of water first think in the morning, also long car driving trips helped me. I stopped drinking water since last June and symptoms came back for since, now im drinking water in the morning also im taking magnesium, omega 3-6-9 and 5-HTP and i start feeling better. Give it a couple of weeks :+1:t2: