New here “My Story”...feeling hopeless.

Hello everyone, my names Nick I’m 27 5’10, 155 pounds from Orange County, California. Just stumbled upon this site about a month or less ago so I thought I’d share my story for some opinions and help. I’ve been reading everything in this form and have known about MM for a little over a year now due to my vigorous research because of my symptoms. I’ll give you all a little background. I apologize for the long post. I don’t where else to turn.

So in May of 2017 I started a new job that required me to work the overnight shift 5 days a week which was a big change for me in my sleeping schedule and the way i ate due to only fast food being open at night then not eating during the day because I would sleep.

In June 2017 I had gotten sick to where I couldnt breath out of my nose and had pretty bad sinus congestion to were I had to put my head over a boiling pot of water to try and open my sinuses up to breath. That only lasted a day or so then I got better but after that I had noticed I had slight ringing in both my ears and my right ear felt a little stuffed. It wasn’t that big of a deal to me but I went to my ENT and he said I probably had a some Eustachian tube dysfunction prescribed me nasal spray, decongestant, and antibiotic and said I can choose to take them or not because it might get better on its own. I chose not to take them because I don’t like medication.

In November of 2017 I had my first “off feeling” like something wasn’t right with my balance or equilibrium. I had no worsening of pressure in my ears or ringing just the “off feeling”.

As time has gone on everything has just seem to be getting gradually worse. I have no hearing loss whatsoever since this has started. The ringing in my ears hasn’t gotten any worse but sometimes I’ll get random spikes of loud tinnitus for about 5-10 seconds and it’ll go away, that’s happened in both ears. I still have the fullness in my right ear and I’m starting to have it a little on my left but it doesn’t feel the same as the right. I always pop my ears by plugging my nose and blowing air into them which relives the left ear but not the right. I also notice that i get the feeling that fluid is draining down the back of my throat sometimes after I pop my ears. I also always open my jaw widely moving it around to try and relive the pressure which does the same as when I blow air into my ears but from doing that I’ve developed popping on the right side of my jaw when I wake up and open my mouth widely. I get crackling in my ears especially the left one and it feels like there stuff in both my ears when I flex my ear drum if anyone here has the ability to do that like I do. Also when I flex my ear drum the tinnitus gets super loud but once I stop flexing it the tinnitus goes back to normal volumes which is really low and barely noticeable. I do get random pain in both my ears and that been kind of a new thing. I also get random sharp pains in my head but those are rare.

My worse symptom and the one that’s getting worse is the constant off balance type feeling where something just isn’t right which started November 2017 like I mentioned before. I haven’t had any vertigo attacks *Knock on wood* but this feeling of being off balance and the world not looking right at times is getting to be constant and to much to where I feel like I’m gonna be home ridden unable to work. I feel like a vertigo attack is going to happen but it hasn’t yet. Sometimes when I turn quick or just look certain way I get this butterfly type jolt feeling in my stomach, I hate that.

Im currently seeing an ENT which I’ve been seeing for about a year maybe and have had all the test done from them VNG, hearing test, etc. My hearing is normal but they said I have an 18% abnormality in my right ear which is negligible and it has to be at least 25%. Recently went to see a neurologist who scheduled me for an MRI and blood work for auto-immune issues like lupus, Lyme, thyroid, etc and everything came back normal along with the MRI so he said there was nothing more he could do just see my ENT.

Went back to the ENT about a month and a half ago and she said she’s going to treat me as if I have beginning stages of Cochlear Hydrops. Prescribed me a diuretic and low sodium diet and to come back in a few months to see how I’m doing. To be honestly im not buying into the whole sodium thing because in my case thus far nothing has effected me negatively or positively when it comes to diet or anything else. I can’t find any triggers when it comes to diet, lifestyle, movements, weather etc everything just keeps getting worse. So I decided not to take the diuretic. I’ve also been working with my normal family doctor and up to date with my blood work and everything is perfect. No STD’s no anything like that.

I’ve known about MM for awhile now and known about the JOH regimen for about a year after I came across a video by an older lady named the “Menieres whisper” and I even bought her book where it outlines everything about MM and all the alternative treatment methods. I also talked with her in the phone. I just never acted on it till now because my symptoms are getting so bad particularly the balance.

So For about a month I’ve been on the full JOH regimen, b5/b6, MonoLauren, and I got my family doctor to prescribe me Valtrex 1000mg 3x a day. I’m on my 4th week of the valtrex and was taking the “cadista” brand not Mylan. I just got another 3 week supply and this time it’s “northstar” brand per my request for 15 dollars. I also eat pretty healthy, no caffeine, no candy, try to stay away from processed junk and I do try to watch my sodium intake. I weight 155 lbs and I’m 5’10.

I’ve developed a little bit of an eating disorder because I’m afraid to eat to much sodium or to much of the wrong thing so I don’t eat much only when I have to take my supplements.

Things I’ve also tried in the past year are a full 2 months of upper cervical spinal adjustments which did nothing for me and the adjustments wouldn’t hold. I also did VRT for a little bit but I wasn’t doing the exercises at home as much as a should have and it was also expensive so I stopped going. I’ve tried different diets such as a vegan diet where I didn’t have animal products for 10 months. I’ve tried intermittent fasting, OMAD “one meal a day” and different types of diets to no avail.

Another thing is I also have my top and bottom wisdom teeth on the right side where the bottom one is impacted and I was supposed to get them out a bout a year ago becise the top on is all the way exposed and the bottom on is visible through the gum but is impacted like I said. They don’t really cause me and discomfort though. I got my left side of wisdom teeth taken out in 2013 so I’m sure that has nothing to do with this.

Just the whole way this thing started leads me to believe it’s viral of some type because it wasn’t random and didn’t happened outta knowhere and I did have chicken pox when I was little and also was told I had mono in my teens. I also had ear issues when I was an infant but never got tubes. I can tell you the whole time line as I stated above.

This past couple weeks have been the worst of them all and I feel like I’m getting worse. I don’t know if it’s because I started the JOH regimen, AV’s and other things that I stated and everything is fighting the virus? I really don’t know but I feel so hopeless like I’m not going to get better. Any opinions or if anyone would like to weigh in it would be much appreciated. Much love.

 

Thanks for the responses I appreciate it. I should have mentioned that I no longer work the over night shift and haven’t for some time now almost a year and Ive been back to working normal hours. I work three 12 hour shifts and have 4 days off so I get plenty of sleep now. I’m thinking working the over night shift, lack of sleep, and horrible diet weaken my immune system like you said and set me up for this. That’s why I’m assuming it’s viral of some type.

 

I’m on the full JOH, valtrex 3000mg a day, b5/b6, monolauren for about a month now and im doing a 12 day course of strong probiotics I’m on my 7th day. I’m also going to try and do the high dose vitamin C protocol. All my symptoms are getting worse in regards to my balance. I’m just wondering if this is a common trend like you get worse before you get better?

 

I’ve thought about that as well but I’m so desperate for relief. Going into the whole JOH regimen I didn’t think I’d have any side effects because they’re just vitamins and there’s supposed to be no real side effects? Same with the B5/B6. I’ve also read that they’re are little to no side effects with AV’s as well so I said screw It I’ll just go all in and see what happens. IF I get relief I can try and cut things out I guess. I don’t know I’m just desperate for relief.

 

Thanks for the reply guys. Ive been looking into serc as well but i don’t know how many milligrams I should ask my doctor for. How much do you guys take? Does it really help that many people?

 

Thanks man I appreciate it. Just sent you a message about the serc.