'True' vertigo

Lately I’ve been getting episodes of ‘true’ vertigo - where the world spins while I remain stationary, my eyes pulsing like mad trying to get a fix on balance. At the same time I’ll feel incredibly drunk (I mean, literally, I feel really, really drunk) and cannot walk a straight line. This, along with the humming ears and muffled hearing is new. I continue to be amazed at how migraine symptoms can just keep on morphing in to new and dastardly areas.

Last week within a minute of arriving at work I got with a scintillating scotoma that floored me and meant I had to take the rest of the day off, feeling fragile, hung over and separated from reality. The next day I got the true vertigo and eventually collapsed into bed for five hours straight. Then a couple of OK days and now the humming is back.

Waiting, hoping for the Prothiaden to kick in and do its job. On it a few weeks now and up to 75mg. Fingers crossed!

I’ve lined up an appointment to see Granot February. A second opinion can’t hurt.

True vertigo is horrible. I sympathise with you. I have had over a dozen of these flare ups, the last one as i mentioned when i joined went for 4 days straight. My eyes were nystaging at 60-70 beats a minute a lot of the time, and the floor was rotating anti-clockwise 45 degrees, then clicking back down, then off it went again.
Did stemetil help you at all?

Will be interested to see how you get on with Garnot.

Dave,

Thanks for the reply. Four days!! That would be hell. Mine have gone for a few hours and that is bad enough.

I had a look in my medicine drawer and yes, I have some Stemetil. I have no recollection of when I got it nor who prescribed it but only two tablets are gone so presumably it didn’t help me. However, up until recently my vertigo has always been of the rocking sensation, the spongy floors and the sense of falling. This true vertigo is new, so perhaps I should try the Stemetil again. Should I take it when an attack comes on or once a day or…how?

Thanks again

Vic

Hi Vic,

Yeah, I used to get that too. Mine would last for 2-4 hours that severe, but in exactly the way you are describing. That was really the worst thing about MAV as it was totally incapacitating, whereas all other symptoms (24/7 symptoms of slight rocking, odd sensations of falling when I was sitting still etc) were horrible, but I could force myself to get on with normal life.

I also don’t understand how migraine keeps on morphing but mine does too. I never had any visual auras until this last year, despite having had migraines for about 25 years. Oddly my first visual aura was when I was taking the pizotifen and had the MAV and my normal headache migraines under good control, so this new symptom arrived at a time I was generally getting less frequent and less severe migraines. I also get a lot of neck pain now, which I didn’t used to get.

My father and grandmother both suffered a lot with migraines but in both cases theirs disappeared with age! It’s the only reason to look forward to getting older :roll:

Hey Vic :slight_smile:
I would speak to your GP, esp if the tablets are out of date and see what dose they suggest for you.
I would usually take 10mg orally, though i have suppositories if it is really bad only when i get the vertigo. There can be issues with long term daily stemetil use as it is a phenothiazine, so it is not recommended.

Have you had an Ecog done to test inner ear pressure?

Vic my GP said one stematil 3 times a day, and the pharmacist recommended for no more than 3 days at a time - when you have an attack. Even with my not true vertigo on a bad day I do get some relief from it

Hi Victoria,

I have had many attacks of severe vertigo. I class my vertigo into mild which is there most days, moderate (horrible, when I cant bend my head forwards to look at a book, eat etc.) and severe (cant get off the bed for 4 to 6 hours, any slight movement of the head sets the room spinning, have to be propped up, 3 pillows, and not move). I use stemetil for the moderate and it generally works. I have taken it twice in a day but generally one will do the trick, the only side effect for me is feeling very tired later on in the day and a headache comes on (a welcome relief after the vertigo!) I have never found it worked for the very severe vertigo attacks.

Interesting Taveenan suggested an ECOG, I had one it showed 60% pressure or something, indicative of endolymphatic hydrops. I have taken serc every day for over 10 years.

Christine

Dave,

Here’s something kind of ironic (in a horrible way). I made an appointment today with the GP to get a script for Stemetil. My ears were humming all day yesterday and also this morning. Then, about 11.30am today the spinning vertigo started again quite violently and I had to go to bed. I had to cancel the GP appointment as I couldn’t walk, let alone drive. I tried taking one of the Stemetil (5mg) I have (expired 2009) and it did nothing. I emerged about 5 hours later and now feel like I have a rotten hang over.

So this seems to be the pattern - humming ears for a variable amount of time (hours, days) and then the vertigo kicks in for about five hours and then I feel hung over and spaced out for several more hours.

I had about an hour’s worth of audiology tests at RPA just recently. Can’t remember what they were all called but I’m pretty sure ECOG was in there (they were looking for Meniere’s). Is it the one where the thing like a plug goes in your ear and then expands a bit - then they play a loud tone in the other ear?

Christine - based on your criteria these bouts of vertigo I’m getting are severe. I can’t get out of bed - even turning over in bed makes me feel sick and everything spins.

There are 2 ways to test the Ecog: with a needle or needleless.
If it is a needle, they pierce the ear drum, and rest the needle near the round window of the inner ear. If it is needleless, a probe is rested on the ear drum itself. Both tests involce loud clicking noises and takes about 15 minutes per ear. The idea is the instrument reads the response rate in micro seconds during the production of a A-wave. This way they can see if there is increased pressure in the inner ear.
Generally if you have more than a 60db hearing loss it won’t work. When they decided to do mine, i was already at 90db loss. I am now well beyond 120db in the bad ear.
Hope that helps :slight_smile:

Dave,

I didn’t have my ear drum pierced (I think I would remember that) but I did have a test with clicking sounds. I’ll check with the clinic, but I’m sure I must have done an ECOG as they were looking for Meniere’s.

And re your hearing loss - fuck! No wonder you have Gibson and Halmagyi stumped. You poor thing. I hope that Cinnarizine (sp) helps.

Vic, I tried stemetil and didn’t find it really helped with the severe vertigo. I think the severe vertigo is just time-limited and passes by itself eventually. I also tried stugeron (cinnarizine) that someone else mentioned in another post recently, but again I don’t think it particularly helped.

Sorry to hear you are suffering badly again, and hope ramping up the prothiaden will sort it out. Take care.

I had the one with the needle in the ear that Taveenan described. The waves were recorded on a graph. I had all the ENT tests done at Oxford and again at London, neither of them did the ECOG. I had to ask for it and went and had it done on its own. That was a long time ago, they may have included it with your tests, if so, there should be a chart with your result.

Christine

Beech,

I think you’re right regarding the time limiting thing (I’ve always eventually gone into remission before, even pre-Prothiaden days) but when chronic like this and having repeated, awful attacks I guess we all want the magic fix. I hate how Prof Halmagyi shrugs his shoulders and says “what else do you want me to do?” but I know the subtext of what he’s saying - “you’re a migraineur, there’s only so much we can do’”. But I will still keep throwing meds at it.

As my elderly mother is finding as she asks around her migrainey friends, a lot of them ‘grow out of it’. The only good thing about growing old I guess.

Christine - I had lots of charts and graphs. I’ll check and see if the ECOG was one of them.

OK Victoria and Beechleaf, how old are we talking here? 60s, 70s, or zimmer frame and blanket by the fireside. I am getting excited now :lol:

Victoria, my severe vertigo attacks tend to come in clusters, get one, then another maybe 3 to 4 days later then maybe another then they stop, I usually have pretty bad migraine between them although no headpain whatsoever whilst in the middle of a severe vertigo attack. Hopefully, this phase will stop for you soon. I know how rubbish you feel, its a nightmare :frowning:

Christine

Christine,

My mum is talking to women who’ve had their 100th birthday card from the Queen, congratulating them on being migraine-free :lol: . Nah, she’s in her 70s and the women seem to indicate the migraines stopped some time ago. I don’t know, I have a feeling by the time I’m old enough for the migraines to have stopped I’ll have other things to worry about - arthritis etc. Oh joy!

Thats great! So when we are 90 we can look forward to going on fairground rides, ski ing, etc. all those things we cant do now! B… brilliant :?

Joking aside, I did two parachute jumps in between my severe vertigo attacks. Didnt affect me at all. That was when I used to feel OK in between the bad attacks. I was the first one to jump and looking down, out of the plane, didnt affect me. Couldnt do that now though.

They reckon Mrs Jones in the village, was ill all through her 40s, 50s and never went out. Then all of a sudden, she was out and about everywhere, she lived to 105!

Christine

— Begin quote from “cmoc”

Joking aside, I did two parachute jumps in between my severe vertigo attacks. Didnt affect me at all. That was when I used to feel OK in between the bad attacks. I was the first one to jump and looking down, out of the plane, didnt affect me. Couldnt do that now though.

— End quote

OMG Christine, you are sooo brave! I would never dare to do anything remotely like that! Let alone after having vertigo problems.

Re the age stuff, my Grandmother’s migraines stopped post-menopause. My father is 65, and it’s very rare he gets any now, although he was dreadful with them during my childhood. I think his faded away during his 50s. So maybe I only have about 15 years to go, ha ha…

By the way, like both of you my attacks seemed to cluster together. I would nearly always had a second bad attack within 3 or 4 days of having the first. I would just have started being well enough to feel confident to leave the house, when BAM it was back again with a vengence.

My headache migraines also tend to cluster together. But not at the same time as my vertigo attacks, for some odd reason.

oh victoria,
that sucks!!! i am so sorry you’re dealing with that on top of everything else. would like to know the results of your ecog too. although remember that the ecog isn’t the most reliable test out there for meniere’s. the better one is the eng/caloric where they put the warm/cold water in your ears and try to induce a vertigo attack. hate that one but it gives you a percentage of how much function you have in your inner ear. your hearing tests can help too, especially looking at the low frequencies and comparing that to past hearing tests.

mainly, i wanted to ask if you had any valium on hand. valium is my wonder drug for vertigo. remember i do have meniere’s and now mav. valium has been my savior for countless attacks. if you do have it and you can tolerate it, take it under the tongue as soon as you feel an attack coming and it can possibly ward off the attack or at least shorten it. i usually split the pill in half and see if that’s enough, if it isn’t, i’ll take the other half in 15 minutes or so. i can get by with 2mg or so most of the time. (i’m a lightweight!) the worst ones i may need to lay down and be still and i may need to repeat the doses again in an hour and take a short nap. but it’s so much better than the alternative.

i hope all this goes away very, very soon!!
~nicki

Hi Nikki,

Great to hear from you! I thought of you the other day when someone posted on Facebook Missy the Missing Cat. I need to check David Thorne’s website to see if there’s anything new on there :smiley: .

I haven’t found Valium to be all that useful for true vertigo. I’m going to try and get a fresh prescription for Stemetil (can’t get out of the office today, but hopefully this week) and give that a try. Touch wood, I won’t need anything and this true vertigo rubbish will fade away.

In other news I checked with the hearing and balance clinic and unfortunately got a receptionist who didn’t even know what an ECOG is, which made me a bit nervous that I might have called Bunnings or McDonald’s by mistake but she did pull my file and told me I haven’t had it - I’ve had the ENG, the caloric and ‘other hearing’ tests.

I also chased up my letter from Prof Halmagyi regarding going on restricted duties at work. He did it! On the day I saw him! It’s just been languishing in my GP’s office. It’s rather vaguely worded but will hopefully be sufficient. The letter said nothing about Meniere’s, but said I have ongoing problems with migrainous vertigo and possibly MdDS.

Vic

Sorry you’re having all this crap Vic - what a nightmare.

Perhaps as a last resort you should consider upping the anti from goats to a fatted calf…or 2. I understand that could be tricky in suburbia, but as you’re managing the goats…

:smiley: