I read that same website info and told my primary about it--as it was the first site to list the things I've been trying to get my doctor's to understand and it has some good suggestions on how to treat it. My doctor has put me on the lowest dose of an SSRI--Zoloft. I have only taken it 3 days as of today. So far, no bad side effects and no relief but I didn't expect either really, yet. I've never tolerated any type of anti-depressant, so am really praying this helps. If so, this means the 'anxiety/depression' we all have from this has alot to do with all that. I'll let you know if it helps. In studies and trials it shows 70 to 80% success with patients who can tolerate the SSRI's. And going off of them if you ever can--has less side effects as the article says. Stay tuned.
Post VNS Update: Sorry for the detailed update. But again, these are written with future VNS patients in mind. Thank you all for caring. 6 Months It's been six months since my VNS on Sept 20, 2017. The VNS has not really helped my daily dizziness. Perhaps it's helped slightly, but not tolerably. As for vertigo attacks, they have been lessening in frequency over the years, so I cannot say whether the recent VNS helped with them. I've had 3, five hour, vertigo attacks since my VNS (spinning attacks shouldn't occur at all after a VNS). The last one was about three months ago. I've never gone this long without a spinning attack. So that's good. Nearing Burnout Stage? In mid May it will be 3 years since onset of my Meniere's, back in May 2015. I feel I'm slowly reaching a kind of burnout stage. For the following 5 reasons: 1. less frequent spinning attacks 2. daily dizziness seldom reaches scary bad dizziness. (or maybe i'm just used to it). 3. spinning attacks aren't as fast (severe), or as long, (5 hours now vs 12 hours in early stages.) 4. continued hearing loss in bad ear. especially dramatic in last 3 weeks. 5. mild tinnitus has become severe tinnitus in bad ear, esp in last 3 weeks. (#4 and #5 show the disease is progressing negatively as it's supposed to, which is why I consider them as signs of me coming closer to burn-out stage. but obviously the concept is vague). Other negatives of a possibly failed VNS: Aside from not curing my dizziness, the VNS has made things more difficult. 1. On top of my MD dizziness I also have to cope with the VNS-caused head-movement dizziness. This VNS-caused-dizziness ("recovery") gets better as time goes on, but extremely slowly. 2. It confuses people and myself. People think my Meniere's is getting better, but I doubt it is. What they're seeing is me just slowly recovering from my VNS. I.e. from my balance nerve being cut. I say it confuses myself too. Because the recovery from losing my balance nerve prevents me from getting a feel for how my actual Meniere's dizziness is doing. Simply put, I've got two things causing my dizziness, so telling one cause from the other is difficult. Antivirals: I've been on Famciclovir 1,000mg and L-Lysine 2,000mg, daily for 3 months. I've yet to see any improvement. Testing: A few weeks ago I had a number of tests done. Don't know all the names of them, but they were: 1. VNG. 2. Loud pulses sounded in ears. 3. Caloric test. 4. Rotating chair in dark closet watching moving lights on wall test. 5. etc. These tests were requested by me to my doctor, to try and understand why I'm still dizzy after my VNS. So we can tell if the VNS truly killed my nerve like it was supposed to. And to help determine if I've gone bilateral. Etc. Also had blood test (to help in some small way maybe) to see if I have a virus caused Meniere's. Haven't gotten results yet. I don't have MAV. My current state of mind: It's been a bad last few months. Lost desire for everything. But gaining a bit of hope and positive mood back, since I'm now strongly considering a laby. I see my doctor on March 27th to go over ear test results and blood work. As for my decisions going forward, so much depends on what he says about the test results. I'm losing faith in antivirals and am growing keener on the idea of a labyrinthectomy. Frustrated and depressed at still being dizzy after 8 months of gent injections, shunt surgery, VNS surgery, and antivals. And now serious tinnitus, hearing loss, and the incredibly irritating phenomenon of autophony, (hearing your own voice honking in your ear as you talk). I'm ready to laby the crap out of this f**king ear. I'd like to laby the whole fucking world
My heart goes out to you reading this. It sounds very difficult. You are doing a great job of being thorough and learning what you can. Did you see JOH's post about olive leaf extract? It seems worth a try. Sending good wishes for you to find your way to feeling better soon.
Are you taking 3 pills of famvir per day? I have been taking 3 Valtrex per day since December. I am doing this as my last ditch effort before looking into a labby. I am only 38 and my good ear is that great so I am trying everything before I destroy the ear. Also...JOH recommends 3000 of L lysine per day I believe.
meant to say my "good ear" is not that great. (family history of hearing loss) that's why I am trying everything.
Great update Pup. Lots to take in with this. You have had MM for so much less time that I have, yet you have been so much more proactive in your approach to get things done. It's really disheartening to hear that despite your efforts, not everything (anything) has helped. I feel the same way. If these AVs don't turn things around I feel like I have no choice but to proceed with other avenues, but will they help me at all? That's the stuff that keeps me up at night.
Thanks for that MBG. I know it was detailed. But I remember researching old threads of people who went through surgery or treatments, and they'd leave so many gaps and questions unanswered. And now most of them are gone so you can't ask them anything. So I try to be as complete as possible, for the guy looking for answers years from now.
Ok, well, I finally met with my doctor/surgeon to review the battery of tests I had done a few weeks ago. I had the tests to help understand why I still have daily fluctuating dizziness 6 months after VNS. The Good: Nothing in the tests indicate that the Meniere's has not gone bilateral. The Not So Good: The bad nerve was not completely severed. The thermo caloric test shows it's still 12% functioning. He explained that there are 3 ways of doing a VNS. One kind gives the surgeons a better view, but is riskier. They chose one that is safer, but makes it harder to see the whole nerve. (This matches with what the neurosurgeon told me after my surgery, in that, I had a large vein that was blocking the nerve, and was hard to get around, but he thinks he got it all.) Anyway, he says he doesn't think the remaining 12% is causing my dizziness, but that it might be. He put me on some drugs and told me to come back in 4 months. I asked about a laby. He said he'd re-do the VNS (the riskier-but-better-view version) before he'd give me a laby, since my bad ear hearing is poor but still useful. And also a laby is bad news if I go bilateral. I'll stay on the antivirals a bit longer. My feeling is that the nerve still being alive is why I still have dizziness. I'm really emotionally torn. I'm glad that I have more insight into why I'm not better. But pretty disheartened that the VNS wasn't a complete success.
Typo above. Meant to say that the tests showed that I've not gone bilateral. (man, we really need to get an edit function up in here)
Good to hear from you Pup. I start on some meds (diazide) today as well. I’m hoping with the AVs they will bring some relief. I’m with you though that the 12% function could be contributing to your dizziness, but hey I went to school for photography. But the brain is really good at adapting to stuff like that over time so it makes sense to me. Keep us up to date and don’t loose faith.
Knowing this much is a huge step forward. Do you get copies of all your test reports just in case you want to show them to another dr? I am sure they will gladly provide them.
Just wanted to point out that on January 2 you already figured out for yourself that the nerve may not have been cut completely, though the doctors had already decided your problem was just, “in your head,” and you were placed on Effexor. You also mentioned in an even earlier post that this surgery works 95%, but that means it has to fail 5% of the time. This is precisely why I listen to my gut instinct about my body now. My doctor tried to put me on Lyrica as it should have been impossible for me to have scar tissue so soon after surgery. Like you said, Pupper, it has to happen to some people. I’m upset on your behalf for having suffered for so long with a problem that is seemingly correctable with another surgery. If the surgeon had examined this possibility from the beginning, based on this post I’m quoting from you, it could have been corrected THREE MONTHS AGO. This seems to be a case of surgeon ego.
Thanks for the update, Pupper. You seem to be taking the news about your incomplete VNS pretty well. I'd really be pissed if I had gone though the expense, pain and recovery from such a serious surgery, only to find out I have to do it all over again. I had the middle cranial fossa approach for my VNS. I was told it affords the surgeon the best opportunity to completely sever the entire nerve. Using a surgical instrument, the brain has to be slightly lifted and moved forward to get to the nerve. That scares off a lot of people. I had complete confidence in my surgeon and I was having vertigo so frequently that I didn't really care what they did to me. If I were you, I'd get on the surgery schedule asap. Six months after your VNS and you're still struggling to feel well. You have researched tirelessly trying to figure out why you're still dizzy. You've been on anti-depressants, antivirals, the migraine diet and more new drugs prescribed yesterday. What does your doctor think is going to change in the next four months? Part of your vestibular nerve is still attached to your brain. Schedule the surgery and if you miraculously start to feel normal, you can cancel it. In four months you will have suffered for almost a whole year since your VNS. You've been through enough. Get it done and get on with life.
Thanks all, for the support and advice. Autumn, Cheryl, it's true. Things should have happened quicker on the medical end. There's much to say about it, but it's best kept in a box. I've been dealing with the anger and depression those kind of thoughts bring. But I have to keep them at bay as much as I can, or they become their own kind of problem. True Autumn, I've always had my suspicions the nerve wasn't fully cut, as that's the main reason for a failed VNS, but I wasn't sure. Cheryl, I'll have the middle fosia VNS next time for sure. The doc and I discussed it. I had the retrolabyrinthine VNS. Safer, poorer view of nerve. If I'd known I had options I'd have requested the middle fosia VNS. Ah well, people have open heart surgeries, I can handle another ear surgery. I'll do some research and see what exactly 12% remaining nerve function means for my dizziness. If I find that it's very likely reason for my remaining dizziness, I'll try get my doc to schedule the surgery sooner than later. On his behalf, I must say, it CAN take a year to fully recover from VNS. It's "only" been half that time since surgery.
Sung to the tune of If You’re Happy and You Know It If you’re dizzy and you know it, don’t trip and fall. If you’re dizzy and you know it, don’t trip and fall. If you’re dizzy and you know it, don’t trip and fall. If you’re dizzy and you know it, nystagmus will surely show it, if you’re dizzy and you know it don’t trip and fall. If the VNS isn’t finished, go get it cut. If the VNS isn’t finished, go get it cut. If the VNS isn’t finished, go get it cut. If the VNS isn’t finished, you’re life is surely diminished, if the VNS isn’t finished go get it cut. If the VNS is really complete, you’ll feel better. If the VNS is really complete, you’ll feel better. If the VNS is really complete, you’ll feel better. If the VNS is really complete, you’re life will be replete, if the VNS is really complete.
Welp, having my 2nd VNS tomorrow. First one was Sept 20, 2017. About 15 months ago. The first VNS was the retrolabyrinthine approach, where they go in from behind the ear. The VNS tomorrow will be "middle fossa" approach. Dr. Timothy Hain: "The middle fossa approach is somewhat more dangerous. It does provide better visualization however. It is sometimes used in people who fail the retrolabyrinthine approach, as it provides better visualization." Quick summary for future MM/VNS patients. (going on memory): Mid 40's. Healthy, athletic. May 20, 2015 first notice slight unsteadiness. Like walking on fishing boat on calm lake. Got a bit worse over the next months. MD suspected. Oct, 2015. Out of the blue, first major fast spinning attack. 15 hours. Violently ill, etc. About 12 more in next 8 months. One every 3 weeks roughly. Sometimes 2 per week. 2016: 6 or 8 gentamicin injections over 9 months. Unlike most people, I didn't feel dizzy or any change in the days after each injection. Doctor said that's probably because (as the test showed) the disease/attacks had already diminished my balance nerve function down to 30%. (I'd still have plenty of good days with mild dizziness, mind you). 2016 summer: shunt surgery Spinning attacks much less frequent, but still get dizzy spells and am generally unstable. 2017 Sept: VNS surgery "retrolabyrinthine". Didn't work. Had about 4 spinning attacks in the months after VNS. Attacks were much slower spinning, than the fast ones I used to get in '15, '16. (10mph vs 80mph). I think all the above helped me not have spinning attacks. Or perhaps it's just the MD burning out. Who knows. I tried all the different diets, pills and antivirals (except John of Ohio's, too lazy). Nothing worked. Testing early 2018: Test show that the nerve was not successfully severed completely. 2018 Dec: 2nd VNS "middle fossa".
Oh wow, Pupper. I'll be thinking of you tomorrow. I hope this second VNS takes care of it once and for all. It has to, right?! Be well and update us on the other side.
Thinking of you, Pupper. Sure hope this second VNS puts an end to your misery. I'll be anxiously awaiting an update. All the best to you.