Susan Lake Posted October 6, 2005 Report Share Posted October 6, 2005 Hi all,I am desperate and hope you can help. I just got back from The Cleveland Clinic on Tuesday where I met with Dr. Fouad for my POTS and then had a follow up with DR. Cherian in the center for vestibular and balance disorders. I was fine going into these appointments but coming home is another story.Dr. Cherian did a quick procedure called particle repostioning therapy for mild BPPV. As I left the office to head to the airport I felt a little "off" but okay. When I got home I was instructed to lay upright for 3 nights. When I awoke Wednesday morning I was EXTREMELY dizzy and nauseas. I have called the clinic 7 times and still as of this morning, not heard one thing back. I am told he has the message and a nurse will call me back. As of 10 minutes ago I called to say that this is unacceptable. They said someone would call me back and to be patient?????I have not felt this bad in 2 years. I have my Pots under control to where I can live as normally as possible for people who suffer with pots. The BPPV has not really even been much of an issue and now this spinning out of control is horrible and I feel I have no where to go........Thank you for reading this and if there is anything you have all done that may help please let me know.Also, Dr. Cherian has me doing at home therapy the past two nights that involves a vibrating massager over the ear while the right ear in down on the bed. I do this for 5 minutes, then rest there for 15 and sit still for 45 minutes. I have 6 year old ACTIVE boys and have a hard time sitting still to do this, but I have. I am so much worse than I was went to Cleveland. I now wish I never went. Please Help!!Susan Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 6, 2005 Report Share Posted October 6, 2005 Here is a site that helped me immensely. There are some exercises and an animation gif (just hit the forward button when the window comes up) and it shows you how to do the exercises and exactly how to position your head.http://www.tchain.com/otoneurology/disorders/bppv/bppv.htmlI did this over the last couple of years when my vertigo got really bad. My endocrinologist dx my "rocks in my head" bppv meaning I had calcium deposits in middle ear but quick exercise. He had me lie on side of table with head hanging over the edge and to sit up and follow his finger. This was VERY MUCH like an amusement part ride --I could NEVER handle those--and I got VERY DIZZY and queasy. So he told me of some exercises to do and they did help. Start off slowly.WARNING!! YOU WILL be much dizzier and nauseated, probably, after doing these exercises. That is normal as the repositioning of the calcium bits re-arrange in the ears. But it got better for me. Just hang IN THERE!!I found this site to help me immensely. Hope it helps you.I would say check with your doctor but if they are ignoring you, you have to just do things to help yourself.Good luck and let me know how you feel in a couple of weeks. Follow these exercises to the letter! Quote Link to comment Share on other sites More sharing options...
Susan Lake Posted October 6, 2005 Author Report Share Posted October 6, 2005 Sophia,Thanks for the information, I actually saw Dr. Hain who wrote the article, here in Chicago at Northwestern. CLeveland Clinic finally just called me back. They said this is most likely due to the extreme postions they had me in on Tuesday. Their advise is to continue the exercises and wait it out.....I had the Epley manuever done a while back and felt dizzy for a month afterwards. I cannot tell you how frusterating this is. I was feeling the best I had felt in years and now I am back to nonfunctioning. I will try some of those exercises you sent and see what that will do. I think those **** ear crystals are just floating around and will not settle on a place to lay. I asked the nurse if there was something I could take besides dramamine and she was going to get back to me......that will be another two days I am sure. Thanks for responding, I feel fortunate to have this site to vent and to receive such great advise and support. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 6, 2005 Report Share Posted October 6, 2005 Susani can NOT tolerate dramamine but what I sometimes got DESPERATE for was benadryl. It also has anti nausea effects. I would get the liquid children's version...the generic Kroger brand. You can take literally pediatric doses. It can help when the vertigo is bad but still don't drive or operate heavy machinery (vacuum, blenders, lol!!) I also would watch the sodium when in a bad dizzy spell. It goes against what we need for POTs but I would find over dosing on salt would make me worse. Also, i get the sensation of plugged eustachian tubes and my ears would sometimes have a subtle ache. Another sign to cut back on salt. This vertigo is a real catch-22 with ANS problems but PLEASE keep doing the exercises and build up the amount you can do. It truly does help.Matter of fact, with the recent weather changes lately, i probably need to start them up again for maintenance/preventive purposes. My sinus pressure is the pits. I live in Miami Valley area of Ohio known as "sinus valley". Years ago, the Shawnee Indians didn't even want to live here as they called it "sick valley". But I digress....good luck. And let me know if the exercises help. Quote Link to comment Share on other sites More sharing options...
faithinspires Posted October 6, 2005 Report Share Posted October 6, 2005 Sorry you are going through this, I hope you feel better soon! Quote Link to comment Share on other sites More sharing options...
ChiariMSwithPOTS Posted October 11, 2005 Report Share Posted October 11, 2005 Hi,I also have BPPV, which has been flared up since May. I haven't had the chance to go in to get the Epley done. It does make me much dizzier when I do it, but if I go for the Epley like 2 or 3 times that's when it fixes itself. I still have to do another dental surgery and that's what brought it on in the first place, so I dont' want to do the Epley and have to go back for another one. So I'm waiting. But, God it ***** big time. Hang in there. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 11, 2005 Report Share Posted October 11, 2005 I don't have any experience with this, but just wanted to say that I hope you feel better soon. My tilt table test that I had at the Cleveland Clinic set me back several days. Frustrating isn't it? Quote Link to comment Share on other sites More sharing options...
hopeful-girl Posted October 18, 2005 Report Share Posted October 18, 2005 Hi Great post. I to have also been recently diagnosed with meneires disease. But now they may change that diagnosis. I am going threw a serious of testing in 3 weeks. it will be an 8 hour day here and I am not sure the exact tests they will be performing. But I will keep ya posted. I get terrible vertigo and some times I bounce off the walls LOL My husband and I were in the store the other day and I kept walking into things my balance was way off. He thought it was kinda funny. He says some times it looks like i am drunk LOL I wish then all I would have to do is quit drinking *giggle*Then I get the loud defaening rining in the ears and the fullness. I have had in the last year 3 hearing tests and they were all different. One was perfect and the other I was border line for a hearing aid and then my third was in between. My ears are very painful especially to cold and excersize.So I hope to find out exactly what my vestibular disorders are. Whew nothing like haveing a myriad of several disorders. Which I see many of us have.I hope you fell better very soon and your symptoms pass quickly!!Corina (hope-ful girl) Quote Link to comment Share on other sites More sharing options...
calypso Posted October 19, 2005 Report Share Posted October 19, 2005 Susan,Hope the dizziness and nausea go away quickly for you. Setbacks -- especially when you were doing well -- are no fun. Don't worry, your body will find its way out of this one!Amy Quote Link to comment Share on other sites More sharing options...
melly4 Posted October 19, 2005 Report Share Posted October 19, 2005 Hi. Just wanted to say I hope eveyone gets better. I also suffer from occasional bouts of vertigo. They seem to always appear in October, so I assume it's allergy-related. I look like Otis the Drunk from the Andy Griffith Show. I wake up every morning with the spins, and can't move my head much until mid-day, after my klonopin has kicked in well. I have found that to be the only thing that helped. I moved here to GA in the last three months. But where I used to live, there was no balance clinic. I'm hoping to find some better help here. I sympathize with all of you. This is such a horrible feeling. My mother and brother have these episodes, too. I think my mom was put on prednisone once, because hers got so bad. Melly Quote Link to comment Share on other sites More sharing options...
Susan Lake Posted October 20, 2005 Author Report Share Posted October 20, 2005 Thank you for all the replies. I have had a couple of good days and now I am back to the spins.....The doctors at the Cleveland CLinic did say that I would have some trouble with my balance for a couple of days or maybe even a few weeks. They gave me some Ativan and it helps a bit but makes me groggy of course.Today is a bad day, I am feeling it big time. I don't know if it is aggravated by the rainy day we are having here in Chicago. My husband and I are taking the kids to Disney World next week so I am praying it will be gone by then!?Thanks again for listening and I hope you are all doing okay. Quote Link to comment Share on other sites More sharing options...
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