Good morning all! I have to say that since I stopped the Lysine, the hyperacusis in the bad ear is worse. In all fairness, the severe drop attack I had on Sunday probably had something to do with it. Every attack wipes more of the hearing out for me. I was still on the Lysine Sunday. Been off of it since Sunday night. No vertigo, although close a few times. I may be starting Betahistine in the not too distant future. When I see my Neurologist tomorrow, we will discuss antivirals down the road. I believe the Lysine was irritating the virus. I may need more than what I was taking. Once I get other things taken care of, might go with Lysine and antivirals. We shall see... SPI-1005 is still in the running. It helps me, but not . Y'all have a Blessed day! Glad Spring is coming. Had enough snow haha!
Hey Mark, glad to see you are having a bit of success. IMO, there is no absolute guarantee that a virus is the problem in your case is there? I know from following your posts that you are working on the virus theory but you may want to consider hyperinsulemia and or inflammation. No harm in pursuing all known or possible causes at the same time. It's called the "Kitchen Sink" approach
Hey Don, Yeah, no guarantee viral. I'm just guessing at this point. Yes, I like the kitchen sink idea! I was almost 2 years in remission and I maintained healthy eating. No salt Cashew and Sunflower butter, organic whole grains, etc... everything was high Arginine compared to now. You would think I would not have went into a remission phase eating this way if viral. I think it does what it does. That's all. Thanks for the advice. Antiviral diet would probably be a good thing
...Not antiviral diet so much as anti-inflammatory diet that stabilizes blood sugar and keeps inflammation at bay.
Regarding the Keto diet---what do you supposed you've removed that caused you to have a worse time? Or c an't you pick one thing?
Well, that is a good question. Really, the only thing I have removed is carbs. I don't drink milk, but I put heavy cream on my keto cereal and I eat certain (0 carb) cheese - so dairy is ok, for me. I just don't eat anything that has hardly any carbs in it. There is a site, SureKeto that makes it very easy to check pretty much every food item to see if it is Keto or not and I have used it to choose what vegetables I eat as well as other things. The only fruit I eat is two spoonfulls of frozen blueberries on my cereal. I eat Galbani String Cheese made from whole milk as one of my snacks because they have zero carbs. I eat Keto snacks from "NoSugar" and CanDo Keto bars for snacks when I'm out. I also eat some meat sticks from grass feed beef but not too many as you are supposed to limit protein. I also take a spoonful of MCT oil, I mean to take more but forget. I eat lettuce salads with lots of homemade dressing made from avocado mayonaise and with chicken on it. I've just cut out as many carbs as possible. I can't say that I really know why it is working for me but it was that scientific article about Menieres people having hyperinsulemia - that's what got me started down this path. I also take a pill called Sucontral D which is supposed to lower blood sugar levels, but I doubt that that is a factor. If I don't eat carbs, I don't think I have a very high blood sugar level. So, no flour based items, no sweets of course, no battered fish, no milk --- NO CARBS Most people on Keto lose weight, but I have not. These foods that I eat are calory dense so it is easy to eat a lot of calories. I also eat lots of nuts, especially macadamia nuts. I am not overweight, could lose 5 pounds but my goal is to hear and remove MD symptoms. I keep a log and this is day 55 with good hearing and reduced tinnitus and fullness. I have experienced some periods of time on the golf course of feeling a bit "off". Sort of foggy, just not quite right. But there have only been a couple of these and I'm not sure just what that is. I have always had trouble sleeping and these could just be exhaustion from lack of healthy sleep. Anyway, the main thing for me has been to eliminate as many carbs as possible - no cheats. That is all I've done. And so far, it has been an absolute game changer for me! My hearing is pretty normal in my good ear and even my bad ear seems to hear a little. I would be thrilled to see this work for some other people on this forum, it is not very difficult to do. Easier than begging for antivirals etc.
Interesting report on diet. (getting rid of carbs) Re. foggy brain...I'd like to add that a full inner ear coincides with brain fog for me. I too have trouble staying asleep some nights. I'm not sure what this all adds up to, but it seems like neurological dysregulation. ....Like my brain and nervous system are under attack when my ear is full.
Very interesting for sure. I am making a grocery order for anti-inflammatory Mediterranean diet type of foods. I actually have been feeling better each day since stopping the high Lysine/low arginine eating. Gotta get more brain food in the diet and less dairy. I am going to look into the hyperinsulemia as well.
No potatoes, no sweet potatoes, no pasta, no bread, no fruit in that grocery order I hope! LOL But unfortunately it is not a cure for me, just a big improvement. Meniere's is reminding me today that it is still around. I'm having some sweaty, dizzy periods today. Big setback. Going to have to set my day counter back to zero on the 56th day. FU*K FU*K - DAMN I took a new 10mg timed release Melatonin pill last night to try to get a better sleep. I won't be taking anymore of them. It has GABA in it too. I don't know if that was the culprit or not but I'm definitely sticking with the diet. I wish I could solve the sleep problem.
Thank you for that info. I am looking into all avenues at this point and I am both EN-couraged and DIS-couraged by what I read. I have just been put on Nortriptilyne---a med that seems to have made a difference in frequency of vertigo, but the rest remains---tinnitus, pulsatile, and some floaty feeling. I do not want to take this off label use of an antidepressant for life. I will ask my PCP about antivirals, since I believe this began 7 years ago after a virus sinus infection. I can see no harm in reducing carbs---I am type 2 but have lost 80 pounds since 2019. All avenues welcomed.
I have found Kava Kava helps sleep. I'm using it intermittently. My fatigue and the floaty feeling are worse now because it is allergy season (early spring) for me. Yes, "floaty feeling" is a good description. I guess I am just going to have to ride the season out. Antihistamines help a little bit.
@Donamo, Argh.... sorry you are going through a rough week. Here is what I know: Trust and believe I changed my life after the first bad attack many years ago. Viral, autoimmune, head injuries, spine, etc....I have heard them all and researched most. Even a guinea pig for SPI-1005. When it comes down to it, I have tried most things within my power. Ya know what? My Dad had Menieres. Lasted about 8 years. Doc in AZ told him it would burn out the same time his hearing would. And it did.... He got back to a semi normal life, driving, fishing, climbing ladders. Eventually complications from cancer radiation took him out. Ya know what? My Dad never changed a thing. Drank his coffee all day, smoked and ate as he had his whole life. Cigarettes eventually killed him. Too much damage done. I hardly knew he had issues till after he was gone. Dad toughed it out. Just how his generation was raised. He flipped a golf cart over on the golf course. Probably drop type attack. Who knows. But he got back to somewhat normal minus hearing. I have lived a very unprocessed, low sodium diet since the first attack long ago. I will continue with the anti-inflammatory eating. One of my drugs I have taken for over 24 years has caused some issues. Coming off that slowly. Bottom line, if it's brain healthy, I'm eating it haha! The good news: since I have changed my lifestyle since diagnosed, I have lost 50 pounds. I will keep looking for things that improve my symptoms and post results. Bottom line, it runs in my family for me. Far less concerned with why it's happening and more concerned with what is helping! Stay strong Don! Keeping you all in my thoughts and prayers! We are strong together.
Yeah, thanks Mark! It's weird, as always. My hearing hasn't been affected with this setback but I get these waves of dizziness and sweats for the last two days. Oh well, I think they will pass and I'm glad I can hear. Back to Day 1 LOL