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I've been 'sailing' for nearly two years


#1

Hi everyone,

I’ve been enduring this horrible illness for nearly two years after getting off a long haul flight - yep, like everyone else I have been diagnosed with vestibular migraine and/or MdDS. Symptoms include persistent 24/7 tilting vision (this is incredibly frustrating), internal rocking, visual vertigo, shimmering in my vision that lasts for seconds, bobbing head (like there’s a pendulum inside) and off balance when it’s dark. I have a history of migraine with aura (no headache), plus it’s in the family. I’m about to start propranolol SR 80mg and dreading the thought of developing side effects…

How’s everyone dealing with this? Has anyone had any good results with propranolol (or anything else), particularly with the visual symptoms??

Jen


#2

Jen I stabilised the vision with 20mg nocte Amitriptyline. It’s taken me two and a half years since the original incident to come off meds. I have vision issues rarely now and if so usually late evening despite no meds. Sounds like you might have a fistula due to trauma. (same as me). It’s very unlikely to be menieres. They heal. Give it time.

Best, James


#3

Hi James,

I may discuss with my doctor about Amitriptyline. This thing is driving me up the wall - typing this while watching the sentences go left to right…enough to drive you insane! :slight_smile:
Thanks for the tip!

Jen


#4

Be sure to report back on progress! Good luck!


#5

Very familiar. Here Is my story and how I diagnosed myself. I originally started with neck and shoulder pain. I then suffered vertigo, disequillibrium, & oscillopsia (images jump)for over 20 yrs intermittently and 24/7 last 4 years. I was 39yrs old when I had the first attack. It took me 24 year’s to figure out that sounds created my symptoms. I have been through many experts in Canada and USA for a diagnosis and most of the experts couldn’t get to a diagnosis. Some of them even prescribed me antidepressants. They tried every antihistamines, neuroleptics and many other drugs to help me. All these just only ruined my liver and kidney. I had every diagnostic text in an ENT book other than exploratory surgery. Being a master’s prepared nurse I refused to accept that diagnosis. I lost my nursing license as I couldn’t go back to work. I then started keeping a very descriptive diary, hour to hour and figured out that it was always certain activities that is producing my symptoms. As a last resort, after a lot of research I started using Silicone ear plugs fo a week (remember it is important to plug only one ear 24/7 at a time for a week so that you can hear and at the same time figure out the problem ear) and I realized that it is low frequency sounds that was giving me the symptoms. Any motorized sounds produced the symptoms, even the sound of a running water, meals (especially the food that makes the sound when you chew, exhaust fans, AC/heater, cars, TV, music etc. I was told I have a supersonic hearing and I was so loud. Hope all of you can give it a try with Silicone plugs and see if it makes any difference. This problem is called Tulio phenomenon. It is caused by either SSCD, perilymph fistula or from a thin bone beside the ear. If it is SSCD you can patch it. For other situations, we don’t have much options other than avoiding the sound entry into that ear. If we do surgery we lose 30 to 40 % of our hearing in that ear. We can have custom made ear silicone ear plugs which causes only 30 to 40 % of hearing loss. If you plan to use it, just only seal the entrance of that ear you plan to block. Please don’t push it into the ear drum. Make sure you air the ear when you are not exposed to the sound (I mean pindrop silence). Now, I only get the symptoms if I am exposed to sounds and I forgot to wear my custom made silicone ear plug. Now I watch TV, drive and is able to go back to my normal routine. Please remember, this is not a medical advice. These suggestions are only for people who had proper testing and treatments before trying this out and only if your treatment is not working. Could you all please let me know through my email (please write “VERTIGO” in subject line so that it doesn’t end up in trash/spam)below if the Silicone plug worked for you as I would like to join a neurotology group to further the research on Vertigo/disequillibrium and ocillopsia. If you have any questions, you can email me at gracymathew.kalath@gmail.com. There are too many of you struggling with this illness on Facebook and I can’t keep up with the Facebook comments. So please email me if you have any questions. If you get my story more than once that doesn’t mean I am trying to sell Silicone plug or send you spam. I trying to help as many vertigo sufferers as I can as I can’t keep up with the names. Good luck!

Thank you
Sincerely,
Gracy


#6

Hi

I have been doing quite well on Pizotifen. I’ve been on it for 2 months now. I’m about halfway back between when i was was 24/7 dizzy and (what i remember) normal. so a lot of progress, but still a long way to go. but at least i can work now (not 100%, but still quite a lot, and OK with computers now as long as i use my new flicker free LED) and i’m not in the hellish 24/7 drowning mode i was i in for the first part of this illness.

try the meds; if you really can’t hack the side effects, try a different one. don’t give up too easily on the meds - weight the side effects against being stuck with the condition for god knows how long. the side effects will seem less bad. i tried Amtripyline but hated it, got on better with Pizot. but everybody is different.

good luck - you can improve and even get back to full fitness!


#7

Thanks. I’ll just have to prepare myself for any potential (hopefully none) side effects but you’re right - feeling dizzy more or less all day is no comparison! I’m starting propranolol on Monday and I just hope to see improvements!


#8

Hi Jen,

I know it’s been a little while but I’m curious if you had any improvement or updates on your status w proprolanol. How are your symtems? I’m in a similar place to where you were when you started this topic - screen scrolls up as I read on its own haha! Side effects of insomnia and tingly hands too from the drug… but I also feel like maybe I’m starting to have some progress in after a week of 90 mgs…

Hope you’re doing better!!!


#9

Hi Zard,

Apologies for the delay - I haven’t been on here for a while.

I stopped taking propranolol a while ago - it was making me worse! Anyhow, I have been recently diagnosed with Mal de Debarquement Syndrome and do in fact not have vestibular migraine. I suspected I had MdDS anyhow as heh, every time I’ve had these symptoms (yes, I have been in remission twice) it’s always immediate following a long haul flight. In fact, I always look out for them when I land! I am due to receive optokinetic therapy in the next few weeks so hopefully I can say - toodles to these annoying symptoms! :slight_smile:

Jen


#10

Best of luck, Jen, let us know how you get on! :four_leaf_clover:


#11

Hello Jen,

I am unfamiliar with that type of therapy but would be interested in how it works for you. There are times that I think my brain has MDDS as well. For many years I have felt constant motion, even if mild. I believe this started due to severe stress but possibly also a cruise. Let me know of your progress and insights if possible! Wishing you the best!