Yep, another new guy joining the ranks of the MM soldiers. First of all, many thanks to all here that have shared their trials and struggles letting me know I am not alone. Just a little bit of background on me, back in 2022 I went flying with an ear infection and really did my ear in. Well I had hearing loss afterwards but the severity of hearing would come and go. My ENT commented that it might be Menieres but since I never had vertigo or dizziness he did not want to put that in my report. Being a pilot that would have been bad. Well, four months ago, I had my first vertigo attack. I went to a new ENT and she recommended the low salt, no caffeine and no alcohol. Well, I am a boring Mormon, so I already don’t drink alcohol and rarely do I drink caffeine in a Dr Pepper or Mt Dew. So that meant going low salt. Well after feeling better for a month I was going to go back to work and happened to injure my arm. I had to have surgery to reattach my bicep so that meant being off work longer. Here is where things got a little interesting, just after the surgery the tinnitus in my ear was gone for two weeks. My hearing was perfect and no tinnitus at all! It had not been that good in years. Well after that I had another bout of vertigo. Upon searching the internet I saw the JOH regime and thought it might have been tied to the cold sores I get (which I just happen to have active during both of these vertigo flare ups). I mentioned the viral possibility to my ENT who had no interest in hearing about it. I reached out to my old ENT who at least recognized that there was data that supports the possibility. So this brings me to now. I was prescribed Valcyclovir and I started the JOH stuff. It seams that my body is in constant battle as I am spinning almost every day. I have lost almost 30 pounds within 3 1/2 weeks either puking or trying to eat low salt and switching to gluten free. I am eating about 500-800 mg of salt a day and I am still having issues. I noticed today that I even have a new cold sore (I get them in my nose so I don’t always notice them right away) in spite of the valcyclovir and Lysien. I am just two month in and would love to here info from others. So here is where I would love to hear from others who use JOH or anti virals. Heck, I am all ears to anyone who has found relief. I am 6’5” 235 pounds and 47 years old. How much sodium do you eat each day? Do you limit your salt intake or when you have settled into either the anti virals or JOH do you just eat what you want? When you have settled into either path, do you have to still limit your diet? For those triggered by salt, how quickly after consuming too much will you get “hit” with vertigo/dizziness? How long did it take to settle in with your plan to where you could rely on having good days so you could feel like you had “returned to life”? Do you still feel like you are on a cruise ship (feels like you are swaying while walking) or do you feel sure footed? Does excercise trigger dizzy spells? Does sleeping in a particular position or on a particular side cause issues? Does the steroid injections in the ear help you and your triggers? Does meclizine or scopolamine patches help at all? (I am a pilot and can’t fly with these, but wondering if they help others as I am trying them right now and not sure they are doing anything helpful). Feel free to add any info that might seem relevant. Every day I have another question, but with the brain fog I forget most of them. My wife likes to cook so she has been making low or no sodium meals. I am struggling with the idea that salt is the big issue when I am eating so little and still having dizzy spells. I just hope this is my body battling the virus and it making its last stand. Sadly if this continues after my arm is fully healed I will have some issues with work. I am afraid I will have to look into aggressive treatments/surgery to get me back in the plane. The FAA does not look kindly at Menieres.
There are others on here with much more knowledge than me but I had vertigo with projectile vomiting starting in 2016. I tried Lasix (diuretic) for nearly a year with no results at all. In mid-2017 I started the JOH regimen and then a couple of months later added Acyclovir with a huge dosage decreasing to a regular regimen over a month or so. I had my last attack in June of 2018 so it was not a quick relief at all. But I have been vertigo free since then. I never changed my diet at all though. I still rotate taking the antiviral and Lysine. I hope you can find some relief.
Hi Michael B, I'm so sorry that you're going through this. I'll try to answer some of your questions. How much sodium do you eat each day? Do you limit your salt intake or when you have settled into either the anti virals or JOH do you just eat what you want? I don't measure the sodium, but I'm aware of it if that makes sense. I eat Whole Foods most of the time, but last weekend I ate hotdogs, coleslaw, baked beans, brownies, and burritos, and nothing happened. Personally I think you are eating too little sodium. From what I understand, it's the balance of salt and potassium that's important. You might want to up the sodium and eat bananas or avocados. When you have settled into either path, do you have to still limit your diet? I try to eat well, but sometimes you've just got to have a hot dog. ? How long did it take to settle in with your plan to where you could rely on having good days so you could feel like you had “returned to life”? For me, it was after I was given an Ativan prescription. This was a year after I was diagnosed. I know as a pilot that you probably can't take anti-anxiety medicine, but I rely on them less now that I am taking Sertraline, an anti-depressant. I also take Valacyclovir, and that has definitely helped, so stick with the JOH and lysine and anti-virals. Do you still feel like you are on a cruise ship (feels like you are swaying while walking) or do you feel sure footed? I used to feel that, but the SSRI has stopped it. It's also used off-label for PPPD. Does excercise trigger dizzy spells? No, but I usually just walk and climb stairs for exercise, so maybe someone who works out can answer that. Does sleeping in a particular position or on a particular side cause issues? No. Does meclizine or scopolamine patches help at all? (I am a pilot and can’t fly with these, but wondering if they help others as I am trying them right now and not sure they are doing anything helpful). Meclizine helps if you can get it down before it comes back up.
Thanks for your replies. I would agree that I may be too low on the sodium. When your doc is low on solid advice you just do what they say and hope to get the positive results. This is why I am trying to solicit the group for each person’s experience. I understand that everyone’s journey is different, but finding common threads between us will help me and hopefully others. I am trying to make sense of the symptoms hanging on, whether it’s the “storm before the calm” or if it’s that this may not be what my triggers are. Like all of us I am trying to figure out what is best for me. Like us all I want to get back to being a good dad and husband to my wife. I do greatly appreciate your comments and am willing to be corrected by those who have come before me. To any and all, feel free to share any info that may shed more light on the path that is before me. I hope this thread will also provide info for the next person down the road. Again, thanks f9r the comments and I am looking forward to hearing more.
So I increased my sodium intake (close to 900-1000mg for the day) the last two days with no ill effect. Now my question is this, for those triggered by sodium, how quickly do you feel the effects after you have “exceeded your limit”? Is it an hour, three hours or like the next day?
Hi Michael, Sorry you had to join us here but let me be one to offer you a lot of hope. I was in a BAD place when I was first diagnosed about a year and a half ago. Terrible vertigo with vomiting, hearing loss, ear fullness, all the bad things that I thought I'd have to live with forever. There are so many things I can recommend to you, but I think it might be easiest for you to search the posts I've made on here that go into detail with what I've done to completely change my life. I am as close to symptom free as you can get and I thank God for that! I'm happy to help if you have any more questions about what I did specifically. Hoping you feel better soon!
FloridaKatie, thanks for chiming in and sharing some thoughts. I have read through some of your posts already. Thanks for sharing your info and experience. Right now I am back to work and have not had an episode in months. I am continuing down this particular path as I have been experiencing positive results. I know each of our paths is different and appreciate all the comments. Not just for my sake but for the next person that will stumble upon this wonderful site. This place has been heaven sent for me and I am eternally grateful. So many different ideas and so much support here. It is wonderful.