Hello all - I just spent time looking through previous posts and I sincerely appreciate how much everyone shares. I am writing to ask for any advice you can offer. 5 Years ago I had an episode that instantly left me deaf in my left ear with loud tinnitus, dizziness, and significant head fog. Doctors are not calling this Meniere's because there is no spinning or drop attacks, this is constant. The head fog and fatigue have been getting worse over the years and now after staring at a computer screen for 8 hours, I typically need to lay down for an hour after work. The episode was the only full-on drop attack I ever had, complete with nausia for an hour and an ambulance ride. I have had 5 top university doctors recommend against gentimicin injection, and two private practice ENT surgeons recommend for it. The two actually recommended full labys but agreed that the injection could be an effective first try to see if there is any benefit. The university doctors sound like they are reading from the same pamphlet and tell me that I have Vestibular Migraine and that I should change my diet. The private practice doctors told me that's what they say when they don't know how to diagnose the issue. I am writing to find out if anyone in the forum is in the same, or nearly the same situation and if they went down any of these paths. This has so dramatically affected my life and I want to do *something* about it, but really can't afford for this to make things worse. I know there is no definitive answer so I'm trying to make a decision based on data. I was *shocked* when the doctors told me that there is no centralized database that maps history, symptoms, treatments, and results...so we can make decisions based on data. If anyone is interested in sharing the results of a gentimicin injection when spinning/drop attacks were not the main complaint I would be very grateful, and interested in what you have to share. (Just as additional background, I have done an ECOG, VNG, VEMP, CAT Scan, and MRI. No tumors or anything dangerous. ECOG/VNG indicated approximately 35% residual function of the vestibular nerve. The two doctors I mentioned hope to eliminate the false signals from that damaged side with the gentimicin/laby and thereafter restore balance and eliminate the brain fog.) Thanks very much, Michael
Hello Michael, I suffer from both MM and vestibular migraines. I have had Menieres for a few years and it has only been in the past six months that I started getting these weird debilitating headaches as well, and was recently diagnosed as having the vestibular migraines and MM. I am the type that tries everything natural before giving in to the hardcore medicine. I take the JOH regime ( I feel like it works), vitamins etc, but sometimes that is not enough and I have had steroid shots in the ear (it worked for a time.) Things that didn't work were meclizine, betahistine. I have completely eliminated gluten from my diet (that worked dramatically---for a year) am still gluten free and haven't touched caffeine, chocolate or alcohol in years. I eat limited dairy and have a low salt diet---but not extremely low---I read as long as you don't have salt in extreme---keep your levels even, with no spikes-- can sometimes get away with it, without having a no salt diet. I'm telling you all this so you may or may not see similarities in our situations. I had chronic (yes non-stop) head-fog and fatigue for almost three months--it started right after a MM attack in which I then upped my JOH (specifically the lysine.) In regards to the vestibular migraines I learned something very critical when I went to a neurologist---vitamin B6 exacerbates vestibular migraines, Vitamin B2 may help get rid of them. Interestingly enough--the Lysine I was taking (and upped after the last attack) had an additive of B6 in it (it states it is for utilization of the Lysine.) I am not sure if this is what set off the migraines (which I never had before) but shortly after I changed my lysine to one with no B6 and started taking the B2, my brain fog, head pressure and dizziness --decreased dramatically. I still have some, but I am much more functional than I was. So perhaps if you see any similarities in our situations, before you get the g-shots try to cut any B6 out of your regiment and then take some vitamin B2 (also known as Riboflavin.) It was recommended I start at 200 mg and then can increase after a time of adjustment to 400mg. The only note of caution my ENT and my neurologist gave me is that if you already have cataracts, it could make them worse. If you don't have any cataracts then they said it won't cause cataracts, just could be a problem if you already have them. So sorry don't have any info in regards to the gentimicin and maybe you already know about the B2--but just in case wanted to share. Best to you! Bonnie
If I understand correctly, you've only had that one vertigo type attack, and that was 5 years ago..but the tinnitus, head fog etc. have continued? Gotta be honest (from my perspective). That doesn't sound like Meniere's. Meniere's is episodic; good days and bad days, and often one more than the other. Many don't fully understand what a "drop attack" is..until they suddenly find their body hurtling towards the floor without a nano-seconds warning. Gent injections or a full laby do not rid you of all symptoms..pretty much just stops the vertigo (we learn to live with the rest of it). I had a Laby to my right ear in Jan. of '09, and the tinnitus never skipped a beat..in fact it's much worse in that ear now than it was prior to the Laby. Have you seen a Neurotologist? If not, then that would be my next move. Get yourself in to see a doc who really knows what it's all about. Most ENT's don't have the experience needed to deal with Meniere's type symptoms. Best of luck, and I hope you can get it sorted and get back to living again.
I was diagnosed with Menieres three years ago. In the beginning I would have short vertigo one hour vertigo attacks and the recovery would be quick, maybe three days , but I was having them frequently, with tinnitus and hearing loss. When I cut out gluten they stopped for a year. Then I started to get longer vertigo attacks, lasting from six to twelve hours, throwing up, spinning, unable to walk. Recovery taking much longer between attacks. Tinnitus would be exacerbated and I have fifty percent hearing loss in one ear. I started doing JOH regime, had steroid shots in ear, etc. But this past summer I got a vertigo attack that was slightly different than my other ones. Tinnitus didn't increase like usual, and after the attack I had the weird headache experience I explained to you in previous text. As I said, only shared to be helpful, I know we all have different issues. Best to you.
So Michael instead of a second opinion you now have seven! And surgeons who have not given you a diagnosis, but still conclude that surgery is required. Who would have thought it? Have you tried modifying your diet? The book Heal Your Headache by Buchholz is an essential read. And have you tried at least to limit your computer screen stareage by adopting ‘safe computer usage guidelines’ such as ensuring your monitor is correctly positioned, taking a break for 10 mins in every hour and taking a proper lunch break and go for a walk?
Hello all, I have to admit that I didn't realize that I had so many replies to my question, thank you Bonlyn, Mike B, and yellow very much for your thoughts and suggestions! I updated my settings to I am now notified if I receive responses to my posts. Since my posting, I have tried 3 gent injections and none of them have had any affect. I followed up with a VNG test that still indicated ~20% vestibular function on the affected side, and I am due to have another VNG test in a few weeks to confirm that the 3rd injection had no affect. There are so many reasons that it could have failed, I won't even speculate. Mike B - Thank you for your comment "Gent injections or a full laby do not rid you of all symptoms..pretty much just stops the vertigo (we learn to live with the rest of it)." I do not have vertigo, just chronic dizziness/fogginess, so I agree that this is not technically Menieres, just an ugly cousin. My hope and what my surgeon has been telling me since this happened in 2013 is that the dizziness is caused by the defective signal coming from the affected side. His recommendation is to perform the laby, remove the defective signal, and let the other side begin to compensate. To my thinking, the vertigo and dizziness are caused by the same structure, so removing it could potentially solve both issues. I have spoken with multiple university doctors who suggest that a laby will not help, and that is is just vestibular migraine. One has repeatedly suggested that I see a psychiatrist because he believes there are other factors such as anxiety at the root of the problems, which lost him nearly all credibility with me. The private practice doctors tell me that it makes complete sense that if you remove the defective input, you remove the source of the dizziness. Yellow - Your suspicion of a surgeon wanting to do surgery is appreciated; the first thing this doctor said was "I don't need the money, I really think this will help.". I'm in the process of getting on a surgical calendar with the surgeon who originally suggested the laby, to be performed at Lenox Hill hospital in New York. It would be better to have a less conflicted decision, but at this point I have lost too much quality of life to not try everything. Thanks again, I really appreciate the time everyone takes to provide such detailed, thoughtful replies. Mike
Michael....I am sympathetic to the laby and if I need another one I will do it and use a CI to hear.....the laby will give you a normal life.
Bulldogs, redwing, thanks for taking the time to reply, *exactly* what I was looking to hear! I've gotten so many conflicting opinions, it helps to hear from people who have benefited from the procedures. 6 week countdown is on...
I’m on a similar countdown, Michael. I see the specialist May 1. Hoping to be offered a laby and that it’ll be soon. Fingers crossed for both of us.
Hi AnneT, my apologies for the delay, I'm just seeing your reply. *Good luck* with your appointment on May 1st! I wonder if you have tried all of the other typical things that are suggested prior to the laby. Things like alteration of your diet, injections, etc.? Also, wondering if there was a specific event that caused your condition or if it just came on with no warning?
Hi Michael The beast started 11 years. I was weaning off Effexor at the time. I’d had some dental issues too. I suspect Menieres is in my genetics - one cousin is getting vertigo attacks, and an uncle has deafness and terrible balance. So, who knows. Yup, I’ve tried lots of stuff. Vestibular Physiotherapy. Neck Physiotherapy and prolotherapy. Serc. Diamox. Nortriptyline. Epival. Joh. Lysine and valtrex. TheraSpecs. B vitamins. Dr buccholz mha elimination diet. I’m low salt, gluten free (mostly), caffeine free, nicotine free, booze free. I’m too worn out to mess around with any more ‘maybe’ solutions. I want to be able to drive, and to have simple outings not be a heroic act of bravery. I’ve had remissions when I was doing nothing special, and relapses again without any apparent triggers, beyond hormones and barometric changes and stress - which aren’t necessarily any different during good and bad vertigo times. So, for me, unfortunately, I think Menieres is mostly a random rat bastard. My May 1 appointment got cancelled. Dr Lange, who does all Menieres procedures, is sick. I’ll see her colleague May 21 but she only does gentamicin. My family doc has referred me to a surgeon - just in case the gent isn’t good enough. How’s your situation progressing?
AnneT: "My May 1 appointment got cancelled. Dr Lange, who does all Menieres procedures, is sick." Your situation seems so strange to me. I'm picturing Canada as some kind of Antarctica. 1 doctor gets sick and everyone in the whole nation is screwed. Jesus, what's the population of Alberta, 23?
Haha! Maybe I didn’t phrase that right. Dr Lange seems to be the only doc here who provides all the available tests, procedures, surgeries relating to Menieres. There are others who do only parts of the Menieres care. I do suspect she’s been a bit protective of her territory, but is close to retirement age. Hopefully things broaden here soon. Calgary has a million people. Edmonton probably the same or fewer. The rest Alberta is small town, ranch, provincial parks, mountains, etc. Big sky country!!
I’m too worn out to mess around with any more ‘maybe’ solutions. I want to be able to drive, and to have simple outings not be a heroic act of bravery. Oh man. I was right there last summer and having a trip to the grocery store for 3 things be a heroic act of bravery is spot on. Being (mostly) on the other side now, just some lingering issues that hopefully don't get worse, I look back on that last year or two of Meniere's (7 total, but that last 18 months in particular) and can't believe I survived and got what had to get done, done. I had scaled all activity back to only the most essential to either me or the kids. And even that was harder than hard. I feel for you and hope you can get in to a doc who can give you the relief you NEED.
Wow AnneT, you have really been through it all, I really feel for you. I'm sure everyone on this board can relate to the saga of diet restrictions, therapies, etc. I wonder if the scarcity of doctors is a reflection of the number of people afflicted in the area?...meaning that more doctors/practices would appear if the demand was there. Also, I'm very much in favor of referring to the affliction as RRB (random rat bastard)! I went through a similar course, however since I don't have true Menier's (no spinning, just constant dizziness, fullness, fatigue) nearly every doctor dissuaded me from doing anything destructive, saying it wouldn't help in my case. Only after I told them that the diet and vestibular exercises weren't helping did they say "Well, you could try the gentimicin injections." Long story short, I tried 3 rounds of injections with no results - the troubling part is that I will never know if the chemical itself was just ineffective in my case, or whether it just didn't reach the right place (make its way through the round window, etc.). The dizziness and head fog have just been getting worse so after reading so many positive stories on this board I scheduled the laby surgery. I just had the pre-operation exam yesterday and have to get a consult with a hematologist as a final step. Normally I would be very nervous about this but I actually cannot wait to get to May 9 and see if the surgery will finally get me back to (more) normal. It really helps to see yours, and PleaseNoDizzy's stories, about how long it's been going on, and how normal daily activities are a challenge. One of the worst parts is that this is invisible and not easily relatable. I'm not used to being seen as the grumpy guy in the office I hope your May 23 appointment goes very well. If you decide to try the injections, there are a few things I can share: - My understanding is that the highest concentration of gentamicin available is 40% solution. My doctor told me he usually dilutes it down to at least 30% because it could sting/burn at full concentration. I asked if it was an "uncomfortable" burning or a "screaming" burning, and after he said just uncomfortable, I opted for the full concentration just to increase the chances of success. - The doctor asked that I stay in the head-tilted position for 30 minutes, but I asked if we could extend that to an hour, again to increase the chances that the medicine reached the right area and had the best chance of being effective, the doctor agreed. - I'm sure there are some standards of practice, but make sure they use a numbing agent on your eardrum prior to the injection. I know there are different ones used and it could make a difference in the sensation. I had very different experiences between the original steroid injection they tried when the episode first happened, and the gent injections they tried years later.
PleaseNoDizzy - Sorry for not remembering what treatments you have undergone, but when you say that you are mostly on the other side of all of this, what did you to to get relief?
I had a labyrinthectomy last summer. Still dealing with some MAV like issues but they are small potatoes compared to what life was like prior to the laby. It gave me my life back, but it's a simple surgery with major repercussions in terms of hearing. It's not the solution for everyone but it was the right choice for me. I wrote some long, long, obnoxiously long posts chronicling my ordeal (I also had a shunt done a few months earlier which basically didn't work).
Now I remember. Definitely inspiration to hear "It gave me my life back, but it's a simple surgery with major repercussions in terms of hearing." I lost 100% of hearing on the left side when this happened, so fortunately I'm not forced to factor that in as a risk. On this board I don't think there is any such thing as an obnoxiously long post, I expect that people are going to drink in every detail because this is the only place to go to hear the reality of the condition and various treatments; thank you for taking the time to share, I plan to do the same when the time comes.