I am new to the forum and still somewhat new to endolymphatic hydrops type Menieres. And after reading what I'm posting I guess my story is pretty well similar to most. Lately the vertigo attacks are getting worse. In January the world spun so badly I fell and got a fairly significant head injury and was hauled off by ambulance. Yesterday at work I had a severe episode but thankfully I was sitting down. The violent earth moving spin lasts about 5 to 10 seconds then it settles down to a dizzy feeling that came and went the rest of the day. I got a work associate to drive me home. My first attack came about 2 1/2 years ago and were spaced several months apart. The frequency has increased to the severe attacks every 6 to 8 weeks. These usually include sweats and severe vomiting. I finally fiigured out that I needed to really restrict my sodium intake and this seems to reduce the number of attacks but every 6 to 8 weeks I still seem to have a bad one. My ENT hasn't been much help. He says it should go away inside of 10 years. Serc is all I'm using. Since yesterday's attack I have experience a slight dizziness or possible loss of balance. All in all kind of depressing. I realized that had I been driving or riding my motorcycle I could have had an accident. Had I been standing I might have fallen. I have been reading about the anti viral meds and thinking I should talk to my ENT about trying them out. Since the start of the journey the condition has worsened. Is this normal? Can the worsening be an indication of the disease finishing its course? Steve
Hi Steve, I am not sure why your doctor said it will be done in 10 years. I have Meniere's for 50 years and still waiting for it to be done with lol. I am symptom free though for the last 3 years due to being on an antiviral. I have 2 links in my signature, one a study about antivirals and on page 104 is the doses Dr Gacek's recommends for Meniere's. The other link is about MAV (migraine associated vertigo, aka silent migraines aka vestibular migraines (headache not required) about 50 % of people with Meniere's also have MAV the symptoms are similar and some times people are misdiagnosed with MM when its really MAV.
Hi Steve, Your story sounds very much like mine. I had a bad fall and head injury and broken arm a month ago today. My violent spinning lasts only around 20 seconds as I am able to stop it by staring at an object close to my face. I have had 3 attacks since then, 2 this week. Luckily I was sitting down each time. I am on the John from Ohio plan and the anti viral which I started last April after two months of bad spell after being in remission for a number of years. After starting the plan and the anti viral (Valtrex 1000 mg a day) I went into remission again and felt the best I did in years. Then 5 weeks ago it came back. I have upped the anti viral (Valtrex) to 3000 mg a day for 3 weeks and down to 2000 mg a day begging this week. My GP will not give me more than 1000mg a day so I am going to run out of pills very soon. I am seeing my ENT next Tuesday in Toronto and hoping I can convince him to up the Valtrex to 3000mg a day for at least 6 months. I have been off work the last month. I am also going through a divorce and have a 3 year old. To say this is a tough time is an understatement, but I am keeping a positive attitude which I believes helps. Hang in there.
Thanks Vicki and TDOAK. I guess my symptoms aren't all that bad. Sorry to hear there are folks out there that have it so rough. I will try focusing on a close object to see if that helps. Some of the forum discussions mention seasonal allergies. I suspected my condition worsened in the spring and that could be why I'm having more issues now. I will print off Dr. Gaceks paper and bring it with me to the ENT.
I actually stare at my thumb. It takes a few seconds for it to work during an attack but it will slowly stop spinning. Of course you feel like crap afterwards.
Allergies/sinus definitely are triggers for me. Also stress and fatigue are both things I need to watch closely. Sodium was not a factor for me (but is for many), caffeine not a factor for me (but many). When I have the dizzy/off-balance feelings (versus full room spinning vertigo) meclizine does work for me. It helps a lot. It does make me a bit tired but it helps a lot for me. It is avail over the counter, and even in generic for lower cost.
Steve, you've found a great place. I hope you find solutions that work for you soon. What a jaw-dropper of a statement: "He says it should go away inside of 10 years." As if that's helpful! Taking the Dr. Gacek paper with you is a great idea. Here is the link to the John of Ohio regime paper, which is very educational as well as offering helpful advice: http://www.zoominternet.net/~kcshop/JOH.PDF Sea-bands acupressure wrist band really take the edge off the dizziness for me. I carry one in my pocket at all times.
hi Steve Your history seems similar to me. Up until 4 years ago my attacks were very infrequent, maybe once a year sometimes I could for several years without any problems. And then in 2011 they got much more regular, like you every 6-8 weeks. I would get a few seconds of spinning and then 12-14 hours of dizziness, sickness where I couldn't do much other than lie in bed and make it to the bathroom. There are treatments and if you can, depending on where you live and your circumstances you should try and find an ENT doctor who is willing to help you. I'm in the UK and you here you can ask for second opinion. take care baloo
It is unbelievable what doctors say and where do they get it from? It will gone in 10 years? First of all, if you learn anything on here, it is you cannot paint everyone with the same brush. It is preposterous. Many on here have benefitted from anti-viral, some haven't. I had vertigo in 1999 and it went away on its own. I had it 2005 and it went away on its own. It started again in April 2014 and it is still here. I am also trying to find a solution with a Neurootologist who doesn't believe in Anti-virals. He has me on pregdnisone temporarily. We shall see. I used to get vertigo attacks and then feel like myself again within 48 hours. Now I am frequently dizzy, neck aches beyond belief and my head hurts too. Now I have hard time finding a spot to sleep without dizziness. That happened after my VNG. Doctor says it is coincidence. I am sorry to rant on your thread, but I guess my point is, this is a great place to have this journey to wellness. If it wasn't for this forum, I would not know about Dr. Gacek's study on anti-virals or the studies that are going on. The people on here know how you feel and are great with Google apparently. LOL. I am grateful for it.
imback - if you have a NUCCA dr near you it may be worth a shot. I know that for me Nucca didn't fix my vertigo attacks, but fixed an ongoing limp (I wasn't even aware of it) neck stiffness and neck aches and headaches that were daily.
Hi Steve, How much serc are you on? There is evidence that high dosages are therapeutic for vertigo. Maybe check into that. My first Oto that I went to many years ago told me that his patients had an average of 8 years before vertigo burned itself out. I have no idea how accurate that is, mine took 11. I believe we have different things causing our symptoms so we are going to have different solutions and different experiences with how this plays out. Good luck, Steve. I hope you find your path to relief quickly. Maggie
Hi Serbian, my hearing is poor, I have distortion in the MM ear, can't have a hearing aid, but compensate well with my good ear. Tinnitus is 24/7, but I have learned to ignore it. I only hear it when I listen for it. Aural fullness comes and goes. It used to precede vertigo, now it just comes on, annoys me, then goes away. My balance is good. I walk a lot, skate, ride a bike so I have kept my balance. My Oto told me that the only symptom that would fade away was the vertigo. I recently had the feeling that the vertigo was returning, you know that feeling that something is not right, but so far, so good. The vertigo was by far my worst symptom, so I can live with the residuals of the others. Life is good.
Interesting as it looks like also the resulting "left over" (for want of a better word) symptoms are also different on a case by case basis just like the MM symptoms are while in full suffering mode. Although I must point out I also suffer from MAV as well as MM....Oh yeah burn out for me was about three years ago now... Pretty much the same for me..... but I am highly thankful I can still hear at least to a liveable level & can still listen to music etc. Yep also the same for me Here we differ hugely as my balance is totally shot..... I struggle to walk even a short distance (10's of yards/meters) let alone even think about activities that need good balance Here we also differ a lot as while the vertigo was by far my most severe & totally debilitating symptom (when in full swing) it also wasn't there all the time, unlike what I have now ended up with, OK so what I have now does vary in severity from day to day but the sod is always there to some degree 24-7...
I don't know if this is correct, imback, but my Oto explained to me that each vertigo attack destroys the inner ear to an extent. After a certain number of attacks, the inner ear is so destroyed that it can't cause vertigo anymore. I have no idea if this is relevant, but my attacks were always at least 12 hours long and they were extremely debilitating. It may mean that my inner ear got destroyed more quickly than someone who had shorter, less severe attacks. I really don't know, just going by what my Oto told me several years ago. May everyone get vertigo burnout
PhilMac, Thanks for sharing your experiences. Weird how there are similarities as well as differences in our experiences. What a frustrating disease we have. When I was first diagnosed, my Oto told me do do activities that challenged my balance. He felt that would help me retain balance as the menieres progressed. My balance is very poor in the dark. I started bt walking short distances, increasing that over time. Then I would go riding my bike. Skating in the winter helped as well. I don't know enough about how it works, but do you think it would help you to do some balance training? Maybe somebody who knows more about it will chime in with some advice. Maggie
I agree with Maggie about the burnout. My doctor told me that the disease would damage the inner ear with every vertigo attack and after the inner ear was destroyed, there would be no more vertigo. My attacks also lasted on average, about 12 hours, though a couple that lasted longer than 14 hours landed me in the hospital with severe dehydration. In 1993 I underwent endolymphatic shunt surgery, which was a disaster and caused me to have vertigo almost every day. In 1994, after having MM for more than 20 years, I had VNS surgery. Afterwards, the surgeon told me my inner ear was badly damaged and that the balance nerve had almost severed itself and, but for a thin fiber keeping it intact, I would have had a VNS without the surgery. I had excellent balance following the VNS, but having become bilateral several years later, it's not the greatest now. It's much worse in the dark and I don't drive much at night because I become disoriented. I'll drive a couple blocks away to the grocery store, but I would never go out on the highway. My doctor told me to do something every day to challenge myself. He also said I shouldn't sit on the sidelines and watch life pass me by. He encouraged me to never turn down an opportunity to do anything unless I was actually having a vertigo attack. I try to live by that. Some days I do nothing more than walk on the treadmill. When the weather is nice enough I walk about four miles a day outside and last fall when I invited a friend to walk with me, she got winded very quickly and complained that I was walking too fast. If a friend asks me to spend the day with her or go on a little road trip, I always accept, with the understanding that I may have to cancel at the last minute if I'm having vertigo. Some days I don't feel like doing much of anything, but I fear what may happen to me if I don't remain somewhat active. Hearing in my left ear was destroyed during my shunt surgery. I wear an aid in my right ear, but the distortion is becoming so bad, it's pretty much useless.