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5 years of this

THi all and so happy to have found this site. I wanted to ask if you could all help me. I don’t know whether to begin but drs say I have vm after many testing but my biggest problem is when I close my eyes I cannot sleep. Dizziness , sinking feeling of about to spin ever hour. Always wakes me from sleep. It’s on and off. Some times every night for a week them nothing for a few months or years. I’ve only every had 2: attacks which felt like intense swim headed motion but again woken from my sleep. As soon as I close my eyes it starts and can drift off because it’s so bad. Last night was horrific I didn’t get a wink. It’s been for 3 months now like this. I’m a person who has anxiety and panic disorder prior and my body is so sensitive to medication why I haven’t taken it yet but I just don’t know what to do any more . Like many people I had my immobile stage 2 yrs ago and was in the pits of hell. I can function now aside the chronic tinnitus ear pain crackiling in ears but the drunk feeling in sleep is plaguing me nearly 6 years or so. I’m feeling very alone and afraid. Nobody understands and very hard when drs are not empathetic. Pls help me guys, I need some support. I’ve dont vrt which I feel helped diet I just fear one day shit will just hit the fan and it will be rotary. I wouldn’t cope. I’ve seen naturopaths go medical medium diet and my antipathy offered me an injection that she says will get rid of vertigo. I’m scared for that even, does anyone get this sleep problem like me? Best Tash UPDATE I HAVEHORRENDOUS PAIN AND PRESSURE IN EARS ! Could this be MENIERES D?

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When I have had severe dizziness it’s hard to sleep. I have had that sudden sinking feeling you describe whenever I tried to drift off. I know you said you are scared of medications but i would absolutely definitely recommend it. You’ve tried so much that isn’t helping you, it’s time to try medication. It might help you feel like yourself again and change your life around. I was scared to try it but i’ve tried 5 different kinds now and am still taking meds. For many people with MAV, they are a lifesaver. The most common aide effects of most migraine meds is tiredness or weight gain - that’s nothing to worry about if it happens, although it never happened to me. If you are feeling so bad that you can’t cope and have had enough of MAV, then you have nothing to lose by trying meds.

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I know but have read some scary things on here also. Are you feeling better? Did you get the dizziness in sleep night after night and if one was to take mess how long does it come back? So sorry for all of the questions I really appreciate you replying to me. This really is scary not knowing when you will feel like you are moving. Hell on earth.

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Hi and welcome Tash

Search a thread entitled ‘Vertigo while sleeping’. There are also other individual references dotted about you can pick up using the same method. You’ll find you are certainly not alone. It is not uncommon. I’ve had it myself. In fact many of my major attacks started with me waking up with vertigo.

Mine always is rotary. You say you wouldn’t cope. Actually you would cope. The human spirit is more resilient than that. Believe me and even Rotary Vertigo cannot kill you. I know. I’m living proof of that many times over. It is horrendous but you’d get through it somehow. Just enter Survival Mode and keep breathing and drinking. Eventually it will pass.

Sorry. Don’t recognise the word ‘antipathy? The medical profession are unable to offer any medicine to ‘get rid of vertigo’ so please can you explain who this is and exactly what (drug/herbal preparation or whatever) they suppose using. I am very cynical.

May I enquire what diagnosis, if any, you have been given by the medical profession and which is any preventatives have been suggested/tried so far? My favourite GP ever, my Mother’s doctor actually, once said to me ‘Once any condition starts to interfere with your quality if life, that us the time to do something about it. I’m no medic but it sounds to me as if you are suffering so you can relate to her statement well I’d imagine. Time to look to preventatives I’d imagine. Helen

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Sorry my functional dr recommended this injection. I have been given the vm diagnosis but feel I had bppv attacks also. It’s been so many years it comes and goes but it always returns in my sleep and as bad as that is I fear the actual attack more. I don’t do anything these past 2 years. If I go out I eat something then that night I get vertigo. I’ve tried all sorts of diets but can never pinpoint a trigger. I have an appointment in August where I’m going to enquire about an emergency med but will I have to live with the chronic condition and it’s symptims ear pain chronic tinnntis pressure ear sounds and attacks forever? I have read the side effects on some forums people have had and in the past I have have had ectopic heart beats and that alone gave me health anxiety and ppl said heart palps were common why I resist, I fear fear worse or worsening my condition. I’ve been given allegron to try.

I’ve had bad experiences with meds. They are still worth it. Sometimes it’s the only way to get back to ok again.

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I’m ok during the day just the sleeping. It’s horrendous. Not sure what else to do. As of late I get ear fullness even like a worm is in my ear sore teeth and pain in ears so bad and chronic tinnitus. All this from vm?

Why should you be that unlucky, eh? From my own exp I’d say it’s most probably all VM. Symptoms vary considerably. I was dx with BPPV for years. Similar symptoms. No real long-term treatment for BPPV. But preventatives do work for VM so treat the VM and see what happens next. Try the allergon.

As @flutters so rightly says.

BPPV doesn’t result in permanent balance upset. It’s vertigo which occurs constantly as a result of being in certain positions, it is totally positional. I’ve a friend who gets it when she lies down without two pillows. Never at any other time and she has no other symptoms. She’s had it since she was 24, is now over 70 and still works running round all day in a restaurant. Does that sound like you?

Question to ponder. is it the food? Restaurants get me. They are notorious for starting MAV
symptoms off for many people. It could be other things, the lights, the mixture of lighting types, noise, smells, keep turning your head in conversation left and right. A combination of some of these many triggers. By experimentation you can probably work it out. Your own triggers in restaurant. Work it out. Please don’t be a ‘victim’, take control. Most of it is just logical. Learn to understand the condition and bring in changes to improve things. Simple things like tinted glasses, sitting at the head of the table, wearing a hat. Whatever’s necessary,

Not if you work on taking control and trial some meds, but you do need to fight it. Helen

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Hi Helen thankyou for replying to me it’s very kind. 3 yrs ago I was in the hell of it all. A attack made me feel so scared like I was dying. From the initial attack I developed a panic disorder and health anxiety. Fear of death, fear of having an attack. Catastrophic I know but I still have ptsd to this day about vertigo. I want to heal it the pain and pressure in. Y eyes makes me feel like a storm is a coming. I stills fear. If I’m out during the day I feel so fatigued I lie down and my body starts to move and whether or not I wake up dizzy is Russian roulette. I wake up from it. As soon I close my eyes I sink feel like I’m about to spin it doesn’t let me sleep. As for when ppl say glasses loud noises I don’t know any of those triggers. I don’t know what I’m suppose to avoid eat as these experienced neuros I’ve seen 5 say eat as normal. I can live a life where I dread sleeping.

Neuros told me to eat as normal, ignore Diet. I tried it anyways and it helped. Try it. Pick out one and do it three months strictly and see.

I very much doubt it’s the restaurant food causing your symptoms but YOU are the only person who can help you find out your triggers.

You do need to seek professional help with your current mental health situation. Please talk to you own doctor as soon as possible. Helen

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This is what I struggle with how ppl don’t fear he vertigo. Therapy I’ve tried for many yrs it the feeling of the symptom I fear. I haven’t found anyone who experiences only in there sleep night after nightt

Nobody likes vertigo. It is a horrid feeling. It cannot kill you. One can dread the thoughts of having it again. The fear of it can be as bad if not worse than the experience. However fearing it might happen will not stop it happening if indeed it is going to happen. It may not ever happen. I fear poisonous snakes. If one bites me, I might die. Vertigo cannot do that.

We have at least one other on here, @An4749. Helen

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Just one ! Makes me think it’s not vm and I have something else

That is just your anxiety talking. I expect there are many millions of people worldwide who experience vertigo as you do but don’t have extreme anxiety so don’t bother to join a forum in the first place. The combination of people who talk on forums and cope with complex/complicated problems with meds, with extreme VM and who only ever experienced vertigo in bed must be pretty low. Lots of people on here have your one symptom and some others. You aren’t unique. Helen

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Tash, tell us how you lie down at night? In bed, on the sofa etc. on your back, on your side etc. with pillow, without pillow, with many pillows etc?
I literally laid back so gently, carefully and slowly to a 120 degree angle position with 2 pillows and a wedge pillow, additionally I wrapped a travel neck pillow around my head like a crown over the top and over my ears to keep my head immobile which prevented me from even thinking of rolling to either side. Add onto that ear plugs and an eye mask. I did this for a year with maybe getting 3 hours of sleep per night cumulatively, with 15 mins here and 20 minutes there. Every single night, being wide awake and terrified at 3am. No matter how many gadgets I used, no matter how many special pillows etc… the only thing that made it truly go away is medication. I still use a wedge pillow and a regular pillow and eye mask. That’s all. I also only sleep on my back still… my Dr said that’s not necessary but I am still too afraid to take the risk after feeling quite well comparatively.

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I hear you lovely . Wow meds really omg i should never have read the bad thing ppl wrote about meds it terrifes me as my body is so sensitive. With my vm well thats what 3 drs said i have Some nights im dizzy some im not. I get awoken by a dream or the sensation of aboit to spin sinking so hard to explain! Then im ok for a few months even a yr but when it returns it hangs around. On and off since feb now. I was even thinking of an emergency medicine. Some ppl said sleep study? Pillows omg if you knew lol i ruin my neck on 3 pillows and in agony for days but like you said sometimes i have no choice when im woken with it my brain doesnt allow flat sleeping. Its weitd i dont know if you had this but chronic tinnitus ear pain even tooth pain amd when i wake up i try to drift off again but doesnt allow me i get dizzy. Even lying in bed. It like i wake up i say to myself omg i slept last night i rollover anxious try to get another hr and boom im groggy and dizzy.I As to all the hard effort to sleep you did with pillows i was therr a few yrs ago but these attacks in sleep and feeling mostly ok during the day minus the pain and tinnitus and fullness i dont know what to do anymore. What to eat. Of i go out what are the right things to do. I dont ever want to return to how i was a few yrs back looking back now i think the 2 attacks i had were bppv. So lost on the direction or plan. I have no plan. No confidence to say ok this is what ill do everday. You know? Thanks for the lovely reply x

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Tash,

Have you talked with your GP about how lost you’re feeling? I think it might be worth making a long appointment, so that you can canvass all of your concerns.

I think most of us were scared of the meds. (I went through these fears with both MAV drugs and epilepsy drugs. After some trial and error, haven’t looked back.) If you’re sensitive, I’m sure that the prescribing doctor would make sure that you start on a very tiny dose and work up from there.

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I gprgot to mention all i have done all that appointments but now drs see me as an erratic person. Saying your anxiety but i dont feel suoer anxious. Only when i get the vertigo. In 2017 i was great. I aye whatever inwanted and felt fine. Then in August 2018 had the second big swim headed attack in sleep and have had bumps since. Ugh im so confused ! How donyou all cope with thr fear of the sensation? Why was i ok for yr? Is this how my future looks fearing food getting random attacks in sleep and feeling the flare ups as they call it. Im 37 and the thought of being pregnant or even dating omg i wouldnt cope pregany with mav. Sorry everyone i know im catastrophic but it doesnt help no matyer how much therapy i do. Symptoms goes i feel better.only way i heal

Hi Tash21

Can I ask, with all the diets you’ve tried, have you done the migraine one? No cheese, chocolate, caffeine, citrus, processed meat, chinese food & MSG’s. I also found that the sweeteners Acesulphame and Aspartame found in soft drinks and fizzy drinks and chewing gum are also triggers.
If you haven’t yet tried this then you’ve got nothing to lose by trying until your appointment in August, even if to say you’ve tried it all that time?

Any possibility of trying something new to help get your symptoms under control should always be considered an option. Anythings got to be worth a try just to tick something else off the list and hopefully get you closer to finding what will work for you.

I hope you get there in the end x

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I agree I have but I will do this again. But I have a question what does the future look like for us? Is it a life of eating like that? A life of flares that may be worse or out us out for weeks days or months I don’t know how to look at this condition for my future. Is it a matter of yes you will have this forevermore?