The Vestibular Migraine & Secondary Hydrops Community
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Help me.

#1

This will be long. Ok so all this started 2008 . Main symptom which I had and are still having today is dizziness in my sleep. I feel better awake I close my eyes drift off boom dizzy I almost dream it. 2015 I laid I bed and felt like the wall opened up behind me. I developed panic attack disorder over the next 2 yrs . Still unsure if the attacks were panic pr vertigo. I got 2 which felt like bppv. Then in August this ye I woke up amd was swim headed was horrific was like waves crashing in my head went hospital sent me home said it was bruxism and bppv when I knew it wasnt. Lasted 10 hrs. Week later happened again. Went hospital again panic took over. In this 10 yrs I have seen neurologist he said vestibular neuritis. Then I saw 3 diff ent 3 times he said bppv then I saw an otolaryngologist her said vestibular migraine then another ent said vm and bppv amd then this recent one said vm whic is a vestibular neurologist also. I have countless testing mri in 2015 vesttibular rehab still see My chiro for it say a neuro physiotherapist holistic and last specialist gave me meds. I fear taking them as I fear vertigo its crippled my life. I havent workd in 4 yrs. Now since December I got a migraine twice never had pain like that in my life. They last 5 to 6 days . Why wont it leave me alone. Now the dizziness in my sleep is back does anyone else suffer this night re occurence dizzy in sleep and being awake is better than being asleep. I had a period where I was symptom free for a whole 1.5 yrs! I’m scared pls anyone help me.

Vertigo won’t let me sleep.
#2

Hi Ane,

Welcome to the forum, and sorry to hear you’ve been suffering like this. Unfortunately, we are very familiar with stories like yours.

I trust you’ve had a look through the User Support Wiki?

Sounds like you’ve been seeing some suitably qualified physicians. Perhaps you can tell us what treatment you’ve tried and how you’ve got on with that?

#3

Hello, and welcome. Sorry to hear of your sufferings. Over the years you have seen a few people who should have a good idea of the problem and the majority think it’s VM so that gives you a starting block from which to work. VM also known as MAV can take a variety of forms. It can look like BPPV, mine did for years and it can change from one attack to the next. It also varies between individuals. Some people experience dizziness in their sleep. I have had that myself. Some people feel better lying down etc etc. Everybody is affected a bit differently. Its not a nice or easy thing to have to deal with and we all often wish it would just go away and leave us in peace. Unfortunately most people find it necessary to take medication to control the symptoms and even then it very often takes a long time to settle down and even longer to go away. If the consultant gave you medication to take he/she must have thought you needed it so maybe it’s worth giving it a try. It can be scary starting regular medication for the first time, or starting a new one but you can only hope that eventually it will make you feel better and that it will stop the vertigo ‘crippling your life’. Good Luck. Helen

#4

O just cant sleep night after night plagued with dizziness. It wakes me every hour. I cant cope. Do I need another MRI what do I do?,

#5

I am not sure what he gave you in the way of medication, but if it is for VM it can help. I went through a lot with this. Vertigo which was diagnosed as Meniere’s then VM. After multiple medications and many ups and downs, i found something that put me back in the game. I felt i had no choice. Mine is Nortriptyline. I remember many people telling me to try Valium. I was reluctant because of the addictive nature. But if i had no choice i would have. Vertigo and my life in bed or Valium. I would have chose Valium. So far, i haven’t had to do it. I think you will know when you have no choice and you want your life back, you will try the meds. Good luck. I will pray for you like i do all others with this awful disease.

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#6

Did you have periods of chronic dizziness in sleep? Wvery hoir for days on end? I was ok for 1.5 yrs I see all these drs and dont feel convinced on my diagnosis. Maybe because I have severe health anxiety but I need to know of other ppl experience this dizziness in sleep!

#7

Yes, i have. I have been awoken by severe rotational vertigo. It is awful. With this disease, I can only say how i am doing now. It doesn’t mean later it won’t change. I have to continue to battle if a reoccurance or a set-back occurs. We live differently than other people that is why we are blessed to have this forum.

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#8

I an not a doctor and cannot tell you if you need another MRI. Most people only have one and it is only a precaution to eliminate fears of nasty rare conditions like tumours. Occasionally people may in some countries have a second one a few years later but I don’t think that is common practice. It isn’t in UK anyway.

If three specialists have told you it is VM, then it probably is VM. If it has been occurring regularly or constantly for several years that is another indication it is VM. If new symptoms appear or symptoms change that is another sign it is VM. Daily dizziness is another sign it is likely to be VM,

Quite alot of people get dizziness in bed. I used to get it myself. If you search on this site for a thread called ‘vertigo whilst sleeping’ you can read more of the following posted by @jess21880 so you can see you are not the only person experiencing this distressing symptom.

“Fast forward to last night…I went to bed at about 930 and didn’t have an awful time falling asleep but started dreaming I was having a vertigo attack and lo and behold I was having one in real life it felt like I was doing somersaults. As soon as I woke up and opened my eyes the spinning stopped and I got up for a while. This was around 1130 pm. I felt swimmy headed, but the rocking and swaying sensation has lessened. I decided to go back to bed about a half hour later and woke up to vertigo again at around 4 in the morning. This time I was violently spinning. It happened twice in the span of a few minutes and that was enough for me so I decided to just get up. I have had positional vertigo in the past and it wasn’t BPPV either. It usually would only happen once around my cycle, maybe every 4-6 months, but not multiple times in one night. I have been feeling like I am floating, swimming, and swaying all day. I am going back to the neuro in October, but at this point I am at a loss to what this is and if these things are common or did I hit the jackpot with the craziest MAV symptoms ever? I should also mention my right ear hurts and it feels full, but this has always been the case for me with bad relapses. I just need some reassurance maybe that I am not going crazy or dying of a horrible illness and that this is in fact part of this awful condition. Thanks”.

I take medication to reduce my symptoms and it works. I can only suggest that you try the medication you were prescribed and see if it works for you too. Be warned though it won’t start working immediately and you need to take it as prescribed to eventually achieve results, meanwhile try to relax and be less anxious about it. Try deep breathing or meditation too. That will help you relax. Rest assured once the medications starts to work, symptoms should reduce and so should the anxiety and then everything will seem so much better. Helen

#9

I’m on day 8 of dizziness in my sleep. I dont feel confident in my diagnosis. Could u help me and see if I’ve done the right thing? Why was I ok for 1.5 yrs?

#10

May I ask you why?

Dizziness and vertigo when reclined are absolutely common with MAV.

#11

I dont know why I’m always scared. All these dr and I’m so tired I just want to sleep like a normal person. Nothing is stopping the dizzies in my sleep. Im scared to tske meds. I’ve done tests is there something I should be tested for or can you go through the tests you did just so I dont feel I miss out on anything.

#12

That is anxiety. That’s also very common. Vestibular symptoms put you and your emotions on ‘high alert’. I can also pick this up from your writing, you appear very anxious. And I don’t blame you at all, this is an entirely normal reaction.

Medication could help you calm down and get your life back. Some doctors say that some people don’t recover exactly because of the anxiety: if you don’t get that under control things won’t improve, they say.

You might start with some counselling though, has any been offered to you? You should consider seeing someone used to handling people suffering from chronic vestibular issues. I saw someone and it was extremely helpful. Didn’t resolve my dizziness, but the way I handled it improved greatly which was a good first step.

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#13

Mine started in 1999 then after 3 months it went away on its own. Then in came back 2006 and after 6 months went away on its own. Then in 2014 it came back and hasn’t left. I have no idea why. You just have to treat it in the way that is best for you. No one should tell you what to do. We are all unique, but I personally would not be afraid of meds. I don’t know what you mean did you do the right thing. You can try natural cures too. Many have success with Acupuncture or Chiropractic. As long as you are taking action and persistent until something works you will get better.

#14

I mean I’ll be seeing a 6th specialist. Is it worth it? What testing did you do? An you dr had vertigo in sleep wake from it doze of and it happens again? Every few hours feel better awake? I need all the help amd advice to know I have exhausted all avenues . I’m so tired but as soon as I doze off I’m awoken by dizzies

#15

I think if you are not confident in your doctor, you should see someone else. I had an MRI, an EEG, a balance test (VNG) and a nerve test. No real conclusions. My balance test was abnormal, but Vestibular therapy didn’t work. My EEG showed silent seizures which i was told explained my phantom smells (cigarette smoke). My brain MRI was normal. I was put on a variety of meds. Some affected my kidneys and i had to stop. Some worked and then stopped working. As I said, i can only say my med is working right now. I have no idea what tomorrow will bring. At some point you have to put all the pieces together yourself and decide what you think is going on and how best to treat it. One thing is to calm yourself, so you can think clearly. I always told myself: This will not kill me. People have it way worse than me. I will get better. I only saw two doctors an NueroOtologist and Neurologist. I listened and decided i wanted to try the VM meds. You will get better! You will.

#16

If I had an mri in may of 2015 should I get another? I have seen 7 drs all up!

#17

Ok here it goes from 2007 to 2015 chronic dizziness in my sleep on amd off. from 2015 nad attacks felt like bppv. I saw my 1st neurologist, he said vestibular neuritis but he was wrong. Then I saw an ent said it was anxiety. Then I saw another ent did tests for emp drops was negative and hearing test was mild hearing loss which they think its congenital. I had an mri all normal. Then I saw a 3 neuro otolaryngologist and 1 ent they said vestibular migraine with episodes of bppv. I had 4 hours of vestibular testing in September 2018 many vngs about 4 tests all normal! I saw a neuro physiotherapist for rehab for 2 yrs as I became agoraphobic from severe imbalance and fear from the initial severe attacks. Chronic panic disorders also. 2017 till aug 2018 I was symptom free. Aug 2018 was my 3rd but different attack woke up severe swim headed. Lasted 7 hrs. Happened a week later again went hospital said it was nothing showed bruxism and said could have been bppv. In this time I’ve been seeing a chiropractor who specializes in balance amd helps me. And last neurologist who gave me meds which gave me severe anxiety. Now I cant sleep each night from being awoken from dizziness every hr. Fullness pain amd I saw my dr and no ear infection like the dr told me I had on wedm I’m scared alone frustrated as I fear drs have missed something.

#18

Ok so I usually lurk on here, but I’m gonna jump in for a moment. The first thing i want to point out is that 2017 to Aug 2018 you were symptom free. So from that time period we know you can get to a symptom free or even manageable symptom point. Like a few others have said, and we all here ya here, anxiety and all that plays a huge role, because realistically we all have a disorder that there is no easy road map to make us better. Vestibular disorders are very tricky because science just isnt there yet so we have to be our own advocates for a lot of this. I had all this start about September 2017. From Jan 18 to may or June 18 i was couch ridden, couldn’t do anything without getting sick. Then I improved to where I could do just about most things the average male could do (I’m a 29 year old male) with therapies (vestibular and vision) as well as a combination of an SSRI and amitriptyline. I went off all that from July 18 to current, and really continued to improve. Then a few weeks ago, I tried to go back to my old job and couldn’t do it, and that coupled with the weather change going on where I live gave me a relapse. It sucks, but relapses will happen. BUT, what you need to focus on is that you got better, so you can get there again. Controlling anxiety is a huge part of this, because that will make your symptoms worse. Do I have days where I cry and think why me?, sure I do. But having a day like that here and there is healthy, you need to let the stress and emotion out. But with time you will get better, maybe not 100 percent, but to a point where you have a good life. And if you relapse again, you will get better again, you just need to remember, you got better once, your brain and body can do it again. There will be rough days, weeks or even months but it will get better. Trial meds o
If they are prescribed to you, and whatever you do keep active to some extent. Physical activity helps your brain figure things out again. We all know you can get there again, because we are all either where you are now, where you’ve been, or where you will be once you get over this bump in the road.

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#19

Did you ever get the chronic dizziness in sleep. Every hour of few? Also dec and last week I experienced my first migraine back of head comes and goes in agony. I just want the night dizzies to stop. Can I ask why you stopped meds? Do you take any natural supplements that help? Special diet? In the period I was ok I too like you from 2016 to 16 was a cripple couldnt walk let alone leave my house . I just fear brain problems something sinister. My panic isnt bad only when I get vertigo.

#20

Sure I do, but it’s how you define dizzyness, do I spin, no, but am I swimming and dizzy in my head, sure. I dont take naps anymore because I get dizzy when I go to sleep like that, and need a full 8 hours to be functional , FOR NOW, and again that’s just for now. I didnt take any natural supplements, besides fish oil, For what its worth, I have celiac disease as well. So does straying from that diet and the migraine diet hurt, sure it does. Look no one here is going to tell you to or not to get another MRI because we arent medical professionals. What we will do though is try to keep you focused on improvement in the future. Maybe right now you have to take it all a day at a time. It’s a frustrating approach at times for sure, but I believe in you that you can get to a more manageable point symptom wise

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