gertie Posted July 21, 2009 Report Share Posted July 21, 2009 Do you find that when you have a Meniere's attack that the Dys/POTS makes it worse than usual, if that's possible? Immediately before the last Meniere's attack I felt like I was passing out or falling then during the attack I felt my eyes were pulling or drawing. If I shut my eyes I would get nauseous which is opposite to what I usually experience. Before when I would have an attack I would have to keep my eyes shut. When I tried leaning my head back I couldn't focus my eyes at all. It felt like I was about to have nystagmus. I had to lay down yet I felt no better laying down. It was a stressful day. I'm wondering why this episode was so different from all the others. I have been taking thyroid meds for the last month & can't help but think that may have something to do with the eye problem. It's been 3 days now & I'm still so weak I can't get up. "Attack" is the right word. I feel like I've been attacked by something vicious. Thanks. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 21, 2009 Report Share Posted July 21, 2009 Hi Alicia~Yes, I do feel that my Meniere's is worse with my POTS. I'm not sure what to think about your vision issues, because I have them too, including nystagmus. I'm only taking Dramamine or Meclizine currently for the symptoms. I don't get it too often, but when I do have an attack, there's isn't really a position that makes it better. If I lay very still and don't move my head, sometimes that helps.Best,Jana Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 21, 2009 Report Share Posted July 21, 2009 I don't have a Meniere's diagnosis, but came across the syndrome when I was getting acute episodic "pressure" in my ears. I can't say its pain, but sudden and intense pressure like you are decompressing or trying to decompress. Then the room starts to spin ... and I have to crouch down. It seemed to last for 30 minutes to a few hours with each attack I first noticed the ear pressure sensation even before I left work in 2007, then it seemed to get much worse last winter and stayed that way for a few months. Can't say its happened at all in the last couple of months though. My PCP checked what he could see externally and there really wasn't anything to be seen -- no infection etc. When I read about Meniere's it said one of the treatments was a LOW SALT diet. I figured that's pretty much a Catch 22 and wasn't very interested in pursuing it further at the time. If it comes back with a vengeance though, I'll have to take another look into it.What type of Doctor diagnosed your Meniere's and are their any treatments that seem to help that don't aggravate your POTS further? Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 21, 2009 Report Share Posted July 21, 2009 Hi Alicia,I have bilateral meneire's and it's just awful. I have actually never been able to close my eyes. I have absolutely no sense of direction, complete disorientation and just keep my head in or near a bucket. I have no idea if my autonomic problems are made worse, as I really am convinced I couldn't feel any worse. I have nystagmus all the time now, not just during attacks.When I have one, I have to sit straight up and stare at one spot on a blank wall until it passes. I can't even move my eyes, let alone the rest of my body.However, once in awhile I develop BPPV, which is a different disorder (good grief) and certain exercises help with that. You may want to check and see if your symptoms are a bit different due to that as opposed to meneire's. The treatment is very easy if you get a good therapist (not fun, but easy, and takes me about 3 visits) Good luck, I definitely feel your pain! morgan Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 21, 2009 Report Share Posted July 21, 2009 Sorry earth mother, didn't see your post, still a duh from surgery...It's diagnosed by an ear nose and throat doc. You have a test where they put little probes in your ears in a very quiet darker room, and playing tones. it measures some connection between your eye movements and ear responses. Your eyes have a great deal to do with inner ear disorders. They also do EMG's, in which you are tested with a series of lights, and water in your ears. it's a pretty barbaric test, but gives them a lot of info.You can have a hearing loss type or a vestibular type, where you don't really get the hearing loss, but the attacks can be a bit worse. usually, the deafer you get, the less you get attacks. It's hard to know which you'd rather have.It's very common to get a great deal of fullness or pressure with meneire's and tinnitus, or ringing in the ears is very common. It can be anywhere from high pitched, to low and roaring. I have it 24/7 and have for many many years.There's also labrynthitis (sp) which is viral, mimics meneire's and lasts around 6-8 weeks. Then it spontaneously goes away. Miserable while it's there though.Hope that helps...morgan Quote Link to comment Share on other sites More sharing options...
gertie Posted July 21, 2009 Author Report Share Posted July 21, 2009 I don't have a Meniere's diagnosis, but came across the syndrome when I was getting acute episodic "pressure" in my ears. I can't say its pain, but sudden and intense pressure like you are decompressing or trying to decompress. Then the room starts to spin ... and I have to crouch down. It seemed to last for 30 minutes to a few hours with each attack I first noticed the ear pressure sensation even before I left work in 2007, then it seemed to get much worse last winter and stayed that way for a few months. Can't say its happened at all in the last couple of months though. My PCP checked what he could see externally and there really wasn't anything to be seen -- no infection etc. When I read about Meniere's it said one of the treatments was a LOW SALT diet. I figured that's pretty much a Catch 22 and wasn't very interested in pursuing it further at the time. If it comes back with a vengeance though, I'll have to take another look into it.What type of Doctor diagnosed your Meniere's and are their any treatments that seem to help that don't aggravate your POTS further?ENT diagnosed me several years ago & the salt is a problem. & also not being able to take the med's I need is awful. It sounds like you could have Meniere's. Do you have any tinnitus or ringing in your ears? thanks for your reply. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 21, 2009 Author Report Share Posted July 21, 2009 morgan, I know what you're talking about. I thought migraines were the worst thing that could happen to someone until Meniere's struck. When it first started I had to lie flat on my back with my eyes shut sometimes for 8 hours. This last episode was like you described I couldn't move my eyes or my body. In my opinion meniere's is much worse than dys/pots & I've had some bad experiences with dysa/pots I also know about BPPV. Thanks for reply. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 22, 2009 Report Share Posted July 22, 2009 Thankyou for the detailed info on the testing. Nothing I was reading seemed to indicate they could diagnose it so straight forward. I've had tinnitus for the last few years. Its not bad, just quite in the background all the time. But during those weeks when that ear pressure would come on acutely the ringing would be much louder. My sense is that I'll wait and see if the acute phase comes again (intense pressure in the ears and sensation of room spinning) then I'll see about a referral to an ENT.Thanks again for the pointers. So sorry to hear how hard this all is for everyone. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 23, 2009 Report Share Posted July 23, 2009 Sorry, I meant ENG. Not EMG. der morgan Quote Link to comment Share on other sites More sharing options...
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