I am new to this forum and really appreciate reading through and realizing I’m not alone! I have many questions and would love to hear feedback. In 2010, I had a major allergic reaction to an antibiotic (Omnicef) that was being used to treat a sinus infection. Within days, I noticed a fullness in my left ear. This persisted and I went to an ENT and learned that I had lost some hearing in that ear. Over the past six years, I have had several more incidences of hearing loss in that ear. I went to Vanderbilt and they had the Decadron steroid injections in the ear, but the hearing never returned. A year ago I lost a huge additional amount of hearing and again had the steroid injections, but to no avail. Since the beginning of my hearing loss, I have had continuous ringing. My hearing aid does help quite a bit with the ringing though. Over the years, the ENT ruled out Menieres because I had absolutely no vertigo/ dizziness. This past December, I had several episodes of dizziness that I attributed to a sinus infection. I then had a couple of weeks in January where I felt my equilibrium was off and often felt dizzy. In March, vertigo/ nausea/ vomiting/ dizzy attacks hit me full force and for about three weeks I was pretty much bed ridden. Even between actual “attacks”, I felt exhausted and very “off”. My attacks vary greatly. Some have been debilitating (these are the ones that include spinning and vomiting), but there are many that I consider “mild” in which I can’t move my head a single inch and have to lie completely still for about an hour. I can’t walk or move my head, but as long as I lie still and look straight ahead, I feel OK. So back to ENT about a month ago to learn that I’ve had additional hearing loss to where now all of my decibels of hearing in that ear are in the Severe/ Profound ranges. Now, of course, the ENT dr. is thinking Meniere’s Disease. I also saw a Neurologist in our area who is from the Mayo Clinic. He ruled out Vestibular Migraines. He didn’t even glance at my Vertigo Journal I had been keeping, but based on my description said 100% that I did not have MAV. He did order an MRI that I will have tomorrow. As a side note, I have suffered from migraines since I was a teen (I am 45 now). This has made me wonder about the MAV. I had a VNG that showed reduced vestibular function in my left ear. My ENT prescribed me a diuretic and an anti-viral (Valtrex) three weeks ago. I am taking anti-viral for 3 weeks 3Xday, 2 weeks 2Xday, and 2 weeks 1Xday. He prescribed me Meclizine and Valium to take during severe attacks. Also, I found John of Ohio’s article (hugely informative!) and have been taking these supplements as well. After about three weeks of complete misery, feelings of hopelessness, and thinking that this was the rest of my life, I went 8 days with no attack! That really gave me so much hope and I am wondering if something I am taking is working. However, last night I had two minor attacks. I’m feeling OK today. So here are my questions: 1) I felt like the Neurologist ruled out MAV too quickly without really looking at my detailed vertigo journal. On the other hand, I have to assume that he is familiar with it and may have good reason to know that’s not what I have. From what I read on this forum, though, it seems like it could possibly be MAV. I believe a big reason he ruled it out was because I had hearing loss. But then I’ve been losing hearing for almost 6 years and it’s possible that is not related. Also something about the way I described these attacks where when I keep my head perfectly still that I feel better made him rule it out. 2) My ENT tested me for the Herpes virus and it came back negative. I’m assuming that the Valtrex and L-Lysine work on other viruses besides the Herpes virus and that I should continue taking them. Has anyone else tested negative to Herpes but had results with these anti-virals? 3) Has anyone else had Menieres or hearing loss start after an allergic reaction to an antibiotic? I’ve always felt sure it was related. 4) I’ve lowered my salt intake, but am not sure how extreme I need to be. We eat healthy and don’t eat much processed food so that helps. I haven’t added salt to anything and have avoided bacon, ham, cheese, etc. My ENT says that I don’t need to be extreme, but just not to have a sudden huge intake of salt—that the surge is the problem. Just curious what others of you have done with respect to salt. I do love cheese☺ 5) Anything else I haven’t considered or that I need to be doing? Sorry for the length of this, but just so thankful to have found this forum!
hello Cambur You could take a look at the following site which has some good info on. http://www.dizziness-and-balance.com/disorders/index.html and http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html Vestibular problems can be very complex e.g. sometimes people have symptoms of both Menieres and MAV. So I think you are right to consider both. If you have the option I would try and find another neurologist, at least one who will listen to you. I had the same experience when I kept a vertigo journal and the ENT consultant didn't even look at it. Its very disheartening. hope our improvement continues! baloo
In addition to the MRI, there are some other tests that can be done such as an EcoG and ABR which may better help diagnose exactly what is causing your symptoms. Regarding sodium intake, you should limit yourself to no more than 1000 mg a day. Good luck.
You are so very fortunate that your ENT prescribed the Valtrex! Many won't and yet a lot of people find relief for Meniere's with anti-virals. Note that for some (me included) i needed to be on the full 3x day dose for 6 weeks before starting to taper down. It takes some people longer to get relief. But good news is that you already had some relief and even though you did have a couple of attacks they were not as extreme as prior. That is good. I would read up yourself about MAV. The fact that you have a history of migraines would lead me to believe that at the very least you may have both Meniere's and MAV - which many do.
Do you trust your Dr.? Antivirals helped me for a long time. ( the steroid shots did not help for long ) I've had a relapse but I see my OTO next Tuesday and I trust her implicitly. I will be asking for Valtex or Vacyclovir and let her decide. My OTO is up to date on all things Menieres. sshhhh, but she also pops in here. She offers no resistance to anything I'm willing to try as long as she thinks it will help but I've been seeing her for 16 years. I've never been tested for the Herpes Virus but I'm going to ask my primary to run it with my next blood wor. Thank-you, I never even thought to do that. One thing to remember about antiviral is that it's 3 steps forward one step back for some until it really kicks in. You may not get positive results immediately and have to give it time. I take Lysine as well. Your post was very concise, that's wonderful. I look forward to you keeping us posting. Nice to meet you
I was tested for the Herpes virus and came back negative. I have been on the full dosage of Valtrex for 4 months and I am still having vertigo, so I am hesitate to say that it works for me. I plan on staying on the Valtrex through July. My symptoms tend to flare up in allergy season and I will see if the Valtrex at least helps with the ear fullness, head fullness, tinnitus, hyperacusis and brain fog. It sounds like you have a very open and thorough doctor. That is great! It is tough to find one of those. This is a great group here, so you have come to the right place. Take care!
Thank you all for your replies and for the information you have shared! Unfortunately, the night before last I had my worst episode to date with 4 plus hours of spinning, dizziness, vomiting, and nausea. Then I woke up with a migraine in the morning and so yesterday all day I felt really bad recovering from the night before. I do have a question about medications to take during an episode. I took both my Valium and Meclizine fairly quickly when the attack started, but then I vomited within a few minutes so got no relief from these. I had the same problem in the last major attack. I also had Phenergan to put on my wrist which I think did help some. I threw up repeatedly in the first 15 or so minutes, but then had about a break of about an hour with no vomiting (but still had major spinning and dizziness). When my husband helped me move from the couch to bed, I couldn't walk so he pretty much had to hold me while I shuffled my feet. This movement caused me to vomit repeatedly again even though I'd had the Phenergan a bit earlier. If I can't hold down the Meclizine and Valium, are there other options for these that could get in my system faster? Is Phenergan applied on the wrist the best way to control nausea, or does anyone else have something that works better? I have just reduced my Valtrex to 2X / day per prescription, but I'm thinking maybe I should go back up to 3X/ day and hope the ENT will prescribe me more. Thank you for any advice!
I have never been on it, but I understand that Scopolomine has a patch. It is antivert like Meclizine.
I unfortunately had the same problem. The medicine did no good because I was never able to keep it down. I would end up in the ER from dehydration and need meds through iv to get relief on the worst ones. Staying in one place helped. I've heard that putting the valium under the tongue was helpful.
I have ativan which is placed under the tongue when the room starts to spin. It will shorten my attacks to 2 hrs or less vs 2-3x that. Because it goes under the tongue it is absorbed quicker and not subject to being puked up.
allergy and food sensitivity test. These are big triggers for a a lot of people and may help control your inflammation. Or just try switching to a paleo diet for 2 months and see if that helps. If you think that MAV is a possibility then you can increase your exercise or start if you don't and try the heal your headache diet. I have seen a lot of neuros and many don't even seem to consider MAV. Heal your Headache takes the opposite point of view saying that most menieres is actually MAV. I am sure somewhere in the middle is more accurate. You can have herpes lying dormant in your system and test negative for it. I have confirmed this with my friend who has a Phd in virology from Harvard and worked at the CDC. herpes is actually one of the most common viruses that hides out like this. I am not a doctor but I don't agree that the surge is the problem. constant sodium would keep constant fluids. The idea is to indefinitely lower fluids and develop a baseline. ideally lowering your sodium to a minimum and being consistent would keep your fluid levels down. having an autoimmune panel run and getting your autoimmune system working you are trying a lot of things at one time. And a lot of these take a while to have the greatest effect so sometimes patience is key. However, the problem I see here is trying all these things at once will be hard to determine which one is working??
Not sure about anti-virals because I haven't had to go that route yet. So far what has worked for me is getting enough rest, watching my sodium intake ( 1200-1400 mg a day) - and that means reading EVERY label on anything I put in my mouth - it took me a good 6-8 months to figure out what I can and can't eat.... its been almost 2 years since I have eaten alot of my fave things ( not neccessarily good for me anyway) - But my bf is fantastic about making me low sodium recipes - he made me pizza dough from scratch and we used the no-salt added sauce and mozz cheese - I had two pieces - it was the best thing I ate ever - LOL... he's made me low sodium bread.... low sodium desserts etc.... It is a little extra work but so worth it.... I make my own marinades and dressings for chicken and pork and salads.... I take valium as needed for stress or dizzy days... stress and not enough rest are huge factors for me so if I know I have something coming up like a concert or a vacation then I plan in rest time. It was kind of alot of trial and error to figure out what works for me - but I went from 2-3 bad attacks a week to 2 attacks in the last 14 months.... I still have the tinnitus all the time but I take Lipoflavanoids for that.... and my last hearing test my hearing improved a bit. I haven't had to get a decadron shot in over 6 months.... Good Luck - sometimes it takes a while to figure out what works for you.
Thank you for the medicine recommendations during an attack. So would I put my normal valium under my tongue, or would it need to be a different type of valium meant to go under the tongue? I have left a message for my doctor also asking about the Ativan and he did prescribe Phenergan suppositories. Since my last big attack almost a week ago, I have not had any more "attacks". However, I do not feel normal at all. I am extremely tired all the time, I feel light headed, and off balance sometimes. Is this normal with MM to still feel "off" an entire week after an attack? I used to be extremely active and all of this inactivity is so difficult. I cannot even imagine actually exercising. I have taken 5-10 min. "strolls" in the yard. I'm doing basic things around the house, but tire so easily... As to allergies, I have been gluten free for about 5 years. When I had an allergic reaction to Omnicef 6 years ago, I had extensive allergy testing which did not come up anything, but maybe I should have that checked again. I thought of another question I didn't ask on my first email. My doctor says I have atypical Menieres (he's assuming for now it is Meniere's since the Neurologist ruled out MAV). First, I had hearing loss for almost 6 years before I had any vertigo. Also, he said most people experience an increased fullness in their ear and increased ringing right before and during an attack. In my bad ear, I have had fullness (clogged feeling) for 6 years as well as loud ringing. However, I have never noticed an actual change in this prior to an attack. Is there anyone else that doesn't notice this change? I friend of mine just mentioned Lyme Disease and I did a search on this forum and did find that is a possibility so I plan to ask my ENT to check for that as well. Thanks everyone!
I had very bad fatigue and brain fog for almost 6 months ......I was just SO TIRED all the time... getting thru a day at work was such a chore... and the the brain fog made it so much worse... But as I changed my lifestyle those syptoms lessened.