Really need some advice struggling

I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired also I have acidity and when I jump I feel I bounced

The problem I have is I don't feel dizzy before hand I just feel unwell like I'm not breathing right feels like there's an elephant sat on my chest then when I feel like I'm about to pass out then I go dizzy.i had this as a one off back in 2015 in the July for 10 hours then it just disappeared now it came back Xmas day 2017 I can't do anything I keep pushing myself but my son has noticed that my heartbeat can be 47-53 which I don't think is normal and this would cause low blood pressure which has similar symptoms as the ear.

I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am

floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired and I also have acidity and when I jump I feel I bounced

Have you been checked for BPPV?

Nancie, how did you get diagnosed for silent migraine?

I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired I have acidity and when I jumped I feel I bounced

Did you mean to reply to Nancie, I'm Anne.  Anyway after 2 years with ENT I asked my GP to refer me to a neuro otologist as my vision and balance were not improving and I continued to feel 'spaced out'  He did various tests and said he thought I have Migraine Associated Vertigo although they were silent cluster migraines as I didn't know I had a headache but I was having all the aura's and balance problems.  He started me on medication and I had to avoid certain potential trigger foods and said it would take longer for me to recover 'cos if it had been diagnosed sooner I would have got better sooner.  He said it would take about a year to recover on the meds.  I took the meds reluctantly and wasn't convinced about the diagnosis, but now I am 90% recovered.  I also had BPPV running alongside MAV and he told me not to get the 2 conditions confused, as all along I had believed it was just BPPV causing my problems.  I occasionally get recurrent BPPV but now I know the difference.

I am much improved as thought I was never going to get better at one point and had to give up work because it was going on for so long.

Hi Anne, was just wondering what your symptoms were. I was told I had labrynthitis in march, but then ENT said no. I'm waiting to go to a dizzy clinic in a few weeks in hopes they can offer me something regarding the eye issues. I had more of a swaying sensation rather than dizzy, and my eyes feel like there vibrating or focusing in and out. When this fis started i could barley drive. Got better now within the last week, eyes are worse again. It drives me nuts

And what kind of meds were you prescribed?

It started off as BPPV, rolling over in bed and everything spinning inside my head.  It progressed to getting up one morning and falling to the floor and having to crawl around until I could stand, all the while feeling completely off balance, banging into door frames, swaying like I was on a bouncy castle,  unable to focus eyes, feeling as though I was spaced out, extremely tired.  Unable to walk down stairs, unable to walk in a straight line.  That was the start of the MAV. I thought it was all one problem but as I explained previously I had 2 conditions running alongside each other which probably worsened the whole effect.  At one point I though it was the start of MS or something really sinister.  I was referred for an MRI to exclude an acoustic neuroma which can cause balance problems. Thankfully I never suffered with nausea.  I was px different meds like stemetil, and betahistamine by the GP, which made no difference whatsoever.

Nortriptyline an old tricyclic antidepressant which at lower doses works as a neuropathic pain relief with less side effects than sertraline.

The dizzy clinic should know more about a neuro otologist referral if needed and may be able to give you more advice than ENT.

I realised anxiety worsens dizziness and dizziness worsens anxiety, it goes round and round in a circle  and the 2 fuel each other.  I learned not to get anxious about being dizzy because it didn't help overall.  It took time to gain this insight but having had it so long I knew it would pass.  Deep breathing really helped me try to calm myself down.  Going shopping in a supermarket was also a trigger, turning into different aisles and looking up at shelves and the bright lights.

Sorry Anne, that was for Nanci, but thank you for your reply.  I found it interesting that you brought up bppv.   I have that seasonally.  It usually lasts for about 2 weeks, and then goes away. I never did anything about it.......but complain.

This past spwing I had it for 6 weeks, and thought I was going out of my mind.  It did finally stop, but returned 2 weeks ago. I finally went to a vestular therapist last Friday.  I knew it was in my left ear.  He did the goggle thing and confirmed it.  The manoeuver was nasty provoking the vertigo.  But it did go away.  I was left with feeling off balance and kinda weird, but no spins.  I went back today for a recheck today, and he said the crystals are back in place.   Just so relieved.  But who knows when it will return.  it is kinda expensive going for this therapy but it is worth it.

My neuro thinks I have some sort of silent migraine too.   I never get a headache,  but daily I get this terrible pressure from my forehead down to my cheeks.  My left nose plugs, and my left ear also fills with pressure.   This makes me feel all off balance.   Just awful.  It really set the anxiety off, and it seems to come the same time of day.     I also get ocular migraines, also in the spring and the fall.  They last about 20 minutes,  but never get the headache after.   Just no headaches at all.

isn't BPPV terrible?

 

Yes the ENT was terrible. I have the same issue wit the grocery store. I had a bought of this last July but ot only lasted 2 weeks amd didn't come back till mid march this yr, but lasting still. The headlights on cars are much brighter, amd I always feel like I have a constant glare in my eyes. Walking at one point was super hard too. Like sponges, or i was walking ahead of myself. I'm going To ask the dizzy clinic about getting a refferal to a neuro-otologist. It sounds like we have the same thing...thank you!!

I didn't get much relief from the Epley manoeuvre but it did confirm I had BPPV in my left ear also, now I just wait for the crystals to dissolve on there own but it can take weeks.  My right nostril gets blocked too but think that is a seasonal allergy.  When I am having a migraine I do notice my left ear thumping inside, so this is maybe an indication of the migraine.  Bit of a mess really, but I have done some compensation exercises which helped with my balance problems, one foot in front of the other with my eyes closed, very difficult, so wouldn't recommend them unless you have something soft to fall onto if it all goes wrong but really stressed my balance system and helped improve it.

Good luck with it all, my GP referred me to the dizzy clinic and it must have been passed onto a neuro otologist and I was booked an appointment to see him.  They were conducting research at the time so that might have been why.