Miserable with Meniere's

[Gin]

I was finally diagnosed with Meneire's about 4 months ago, after a year of tests, MRI, CT scans, etc. It has been so rough. I don't have the full on vertigo yet, but it seems to be progressing that direction. I have cut out all of the caffeine, alcohol, and reduced my salt intake by tons. My eye sight seems to have taken a toll as well. My eyes I have noticed in the last couple of months started to jerk. The eyelid twitching and migraines are constant. Sensitivity to light is almost too much. I have also had other things happen that I'm not sure are even Meneire's related. My muscles have begun to twitch constantly. My face, arms, and legs become numb at times. My heart will skip beats or pound for no reason. I recently ended up in the ER thinking maybe I was misdiagnosed and it was something more serious. Well, after a chest xray, CT scan with contrast, blood work, EKG, and a few other things, all they found was slightly high blood pressure and a irregular heartbeat. And sent me home. My health insurance is terrible and covers almost nothing. I was referred to a Meneire's specialist, who I went to. He said he's 99% sure it is Meneire's due to the test results, etc. I went back last week for my 4 month check up. Things had gotten worse and I was on the edge. The only thing keeping me together was that this man could give me some answers. I had video of my eyes, (going to ask him if this is what it looks like when they jerk), and video of the eyelids pulling and tugging. I also had questions regarding prescriptions, etc. I took my hearing test. My right eye had gotten worse. My left had now developed low frequency hearing loss as well. When I went into the consultation, he asked if I had any vertigo episodes. I explained to him not really, just the really off balance, going to fall down kinda feeling. Like walking on water. He said good good. Then he asked how my hearing was going. I said I hadn't really noticed any change. He said good good. He looked in my nose, my mouth. I said I had some questions and some video and would like him to look at these. I explained the numbness, muscle twitches, and eyelids pulling. He said those were not Meneire's related and that's all he deals with. Sorry. That was it. I started crying. I said well how do I find out what's going on. He said oh I don't know I'm a Meneire's doctor, that's all I deal with and walked out of the room. Hence, when I left and went to ER. So, in conclusion, I'm on valium and muscle relaxers. I do have a prescription for Promethizane, which I take sometimes when I am really nausea. I have no doctor, not going back to him. My GP is 30 and really knows nothing. My neurologist, who I trusted and liked is no longer covered by my insurance. I work for my family business, and help take it over. I must work 45 hours a week, no choice. In fact they are very not understanding of the whole thing. They think I'm just a hypocondriac. Because hey I look ok on the outside. I haven't lost conciousness or have terribly high blood pressure so I have to be fine. I feel like I'm going crazy. I constantly ask myself daily is it Meneire's or have I been misdiagnosed and it is something that's horrible and will be too late to find. I can't go to the ER anymore. They don't give me answers either. I'm single, I live at home, I can't sleep. I have no one to talk to. I don't go out anymore. I don't even put makeup on anymore. I used to have a very active lifestyle. Marathons, vacations, traveled overseas (solo). Now I'm afraid to even drive my car. I feel really stuck.

 

[undecided]

Meniere's is very hard to diagnose.
Also, I never understood one thing. Salt is super important for a healthy diet (in moderation). How is one's body supposed to function with no salt at all. Caffeine, alcohol I get, but salt...

Anyway you seem to be on the verge of a small depression there, better have that handled.

 

[popparoon]

So sorry to hear of your Meniere's diagnosis and symptoms. I was diagnosed with Meniere's in 2010. Hearing loss, tinnitus, ear fullness were my symptoms. Vertigo started in 2011. Along with a constant feeling of being off balance, it was devastating to my quality of life.

Later in 2011, I had my amalgam fillings safely removed by a biological dentist Over the next few years my symptoms improved. I began oral chelation in 2015 and in that year I had my last vertigo attack (thankfully).

There are apparently a number of causes of Meniere's. Mine appears to have been caused by heavy metal toxicity from amalgam fillings. It may take you some time to discover your root cause, but be encouraged that many people have done it. It takes a lot of research, persistence and some experimentation. There is a lot of information out there; I encourage you to stay positive and seek your solution.

 

[JasonP]

I was finally diagnosed with Meneire's about 4 months ago, after a year of tests, MRI, CT scans, etc. It has been so rough. I don't have the full on vertigo yet, but it seems to be progressing that direction. I have cut out all of the caffeine, alcohol, and reduced my salt intake by tons. My eye sight seems to have taken a toll as well. My eyes I have noticed in the last couple of months started to jerk. The eyelid twitching and migraines are constant. Sensitivity to light is almost too much. I have also had other things happen that I'm not sure are even Meneire's related. My muscles have begun to twitch constantly. My face, arms, and legs become numb at times. My heart will skip beats or pound for no reason. I recently ended up in the ER thinking maybe I was misdiagnosed and it was something more serious. Well, after a chest xray, CT scan with contrast, blood work, EKG, and a few other things, all they found was slightly high blood pressure and a irregular heartbeat. And sent me home. My health insurance is terrible and covers almost nothing. I was referred to a Meneire's specialist, who I went to. He said he's 99% sure it is Meneire's due to the test results, etc. I went back last week for my 4 month check up. Things had gotten worse and I was on the edge. The only thing keeping me together was that this man could give me some answers. I had video of my eyes, (going to ask him if this is what it looks like when they jerk), and video of the eyelids pulling and tugging. I also had questions regarding prescriptions, etc. I took my hearing test. My right eye had gotten worse. My left had now developed low frequency hearing loss as well. When I went into the consultation, he asked if I had any vertigo episodes. I explained to him not really, just the really off balance, going to fall down kinda feeling. Like walking on water. He said good good. Then he asked how my hearing was going. I said I hadn't really noticed any change. He said good good. He looked in my nose, my mouth. I said I had some questions and some video and would like him to look at these. I explained the numbness, muscle twitches, and eyelids pulling. He said those were not Meneire's related and that's all he deals with. Sorry. That was it. I started crying. I said well how do I find out what's going on. He said oh I don't know I'm a Meneire's doctor, that's all I deal with and walked out of the room. Hence, when I left and went to ER. So, in conclusion, I'm on valium and muscle relaxers. I do have a prescription for Promethizane, which I take sometimes when I am really nausea. I have no doctor, not going back to him. My GP is 30 and really knows nothing. My neurologist, who I trusted and liked is no longer covered by my insurance. I work for my family business, and help take it over. I must work 45 hours a week, no choice. In fact they are very not understanding of the whole thing. They think I'm just a hypocondriac. Because hey I look ok on the outside. I haven't lost conciousness or have terribly high blood pressure so I have to be fine. I feel like I'm going crazy. I constantly ask myself daily is it Meneire's or have I been misdiagnosed and it is something that's horrible and will be too late to find. I can't go to the ER anymore. They don't give me answers either. I'm single, I live at home, I can't sleep. I have no one to talk to. I don't go out anymore. I don't even put makeup on anymore. I used to have a very active lifestyle. Marathons, vacations, traveled overseas (solo). Now I'm afraid to even drive my car. I feel really stuck.

Unfortunately we can't give you medical advice because we aren't doctors but I saw this information about a medication you might could ask your doctor about:

http://www.neurology.org/content/82/10_Supplement/P2.277

It is about a drug called Lamotrigine. I don't know if it will help but you could read that study and research more about it and if you wanted to you could ask the doctor about it. I heard it was prescribed off label for depression and migraines too, but the doctor would know more and if this is factual. I hope you get better soon.

Honestly, I don't know much about the disease

 

[Alue]

Meniere's is very hard to diagnose.
Also, I never understood one thing. Salt is super important for a healthy diet (in moderation). How is one's body supposed to function with no salt at all. Caffeine, alcohol I get, but salt...

Anyway you seem to be on the verge of a small depression there, better have that handled.

Sodium is in everything. Especially here in the US. You can eat a "low sodium" diet and still get 100% of your daily value. I try to eat a lower sodium diet but it's very difficult even when I don't add extra salt when I cook my food. 1 slice of bread 7-10% of your daily needed value of sodium. Eat out one meal at a restaurant or fast food and that's likely more than half your daily needed value if not more.

 

[Gin]

Yea sodium is tough. I did good yesterday. Gonna stick to it. Not worth the hassle when I go off of it. So no restaurants from now on. And kinda bland food, but I have found cooking with sage, oregano, crushed red pepper, lemon, etc. Makes things taste better.

 

[MikeP505]

@Gin

There are many ways to lower sodium and still enjoy foods. You listed a few and your on the right track there. I read somewhere on this thread about a restaurant meal being more than half your daily recommended intake. I have news for yea. It could be very well more than TWICE the daily recommended intake in just one meal. We love salt. Salt is something our bodies crave and is necessary for normal healthy body function. Sadly it is overused to make foods taste better. Many salts we use also contain trace amounts of iodine. If you avoid salt too much, you risk a lower level of iodine and the risks associated with that. Iodine is very useful in dealing with toxins. So my best advice for anyone wanting to lower sodium intake is stay away from fast foods more! Grab that Big Mac once in a blue moon or what ever you liked in the past. Order that pizza loaded down with toppings now and then. You don't need to totally quit it, just really restrict it. I am no professional at all, but I would never stop using table salt in cooking. You can use a lower amount and still get some benefits from it. Should your doctor suggest otherwise, it might be wise to use some. If you do treat yourself to a restaurant meal or even a fast food meal, then lower the intake awhile. Use common sense with salt. Lots of information out there about it. Read up and don't be afraid to use a pinch now and then. I am also a FIRM believer in probiotics. That is the good bacteria in our digestive system. With many foods today, its hard for good bacteria to flourish and the bad bacteria takes it place, causing fatigue, headaches, depression, just a ton of bad crap. When bad bacteria is rampant in your digestive system, you cannot break foods down properly and get the needed fuel you body requires to work well. I use a supplement daily of a good probiotic that contains 10 strains of good bacteria. Most on the market are an average of 5 to 7 strains. Seen some with 15 strains but that may just be overkill and a reason to charge more for the supplement. They can be a little uncomfortable in the beginning to take causing bloating feelings etc, but that's simply because they are on the way to making things right again. Most everyone I know that uses a probiotic adjusts well within 2 weeks. Some even stop for awhile and then go back on for awhile. I know I always feel better and my body functions better when my good bacteria is in check. Stress can even allow bad bacteria to flourish. Just some food for thought...............

 

[glynis]

Hi Gin,
Sorry to hear you got no answers with your eyes etc and numbness and reduced to tears.
Welcome talk to me anytime about what you are going through.
I live in the UK so welcome Skype chat me free....lots of love glynis xxx

 

[glynis]

Gin,
I'm sorry I'm not well enough to chat on the phone and off work sick.
I tried to deleate the message but was to late.
Please accept my apologizes ....lots of love glynis

 

[MikeP505]

@Gin

Hang in there hun. Try not to think the worst about everything. I have had eye twitching at times, but luckily for me it typically only lasts about an hour and then goes away for a month. Not sure what causes it and I know how weird it feels. Try to eat fairly healthy as much as possible. I do not know anything about Meniere's at all and cannot begin to understand what you are going thru. I understand completely about health care and medical insurance and might suggest if your income is low, to apply for a form of health coverage for the low income earners where you live. People that are out of work or on disability pensions typically receive some form of health coverage and even tho you may not be asking for financial coverage cause you work, you may still qualify for health coverage. Never hurts to check??

Good health starts with good foods. Helps to lower stress, feel better every day, sleep better, digest better..... Positive changes to diet and exercise may help lower some symptoms?

I think you are beautiful and I bet even without make up, as you say you use less lately, you are still beautiful. Try to get out with friends and family when possible and just relax and be yourself. Sooner or later you will meet a decent lad and possible changes to the life you now live. Try to enjoy working, as you say, more than 40 hours a week. Working can actually be satisfying if you allow it to be. People who complain about going to work are bound to have a bad work day. Wake up in the morning, shower and say YAY, I have a job and things to do today that are useful.

Hang in there girl!!

Mike

 

[MrBonk]

"Because hey I look ok on the outside"


That's something that pisses me off. There's a great saying about this.

When people can see your injury. Your illness. They feel empathy and can understand there is something wrong.
When they can't however, you are seen with contempt.

 

[MikeP505]

@MrBonk

Agreed. So many people thing you are simply nuts. Funny farm material. The dude is hearing things, therefore must be psycho. Education on all of this really is key, but still years away.

 

[MrBonk]

Yeah, it's really sad.

 

[Gin]

Well, this weekend wasn't terrible, except for Saturday night. It was rough. I have a neurologist appointment tomorrow afternoon. I'm feeling a little optimistic about that one. Maybe he will have some answers for me.

 

[MikeP505]

@Gin

Good Luck!!! Keep us posted. Hugs.

 

[glynis]

@Gin,
Good luck for tomorrow .... lots of love glynis x

 

[Gin]

Well, I just got back from my Neurologist. He still thinks everything I have going on has to do with my Meniere's and migraines. He put me on Nortriptyline for migraines. He also put me on Robinul for the dizziness. Has anyone tried Robinul for dizziness/vertigo?

 

[MikeP505]

Just QUALIFIED for the Cochlear Implant today. May actually be able to hear someone's voice again or use the telephone!!! Happy man today! Now the waiting game begins as the waiting list is long for the surgery. Could be as long as 2 years before I get the call for surgery but at least I know I'm getting one........ some day!!! Won't help with my Tinnitus but hey, any improvement in my situation is a great help.

 

[MikeP505]

Never had issues with dizziness, however when I was young I dated this dizzy blonde. Does that count?

 

[Ecip]

Your symptoms sound a lot like chronic Lyme disease... Have you ever looked into that?

 

[Gin]

Yea someone had mentioned Lyme disease the other day too. I have a new neurologist appt in October. Im going to ask about it and have it tested. Well yesterday and today have been terrible. I did stay up all night at a casino and watched a very stressful football game. So with the stress of gambling, noises in the casino, and sleep deprivation I think I triggered my Meneires. Ive had serious hyperacusis, chest pains, palpitations, dizziness bad. Etc. Took some valium, and muscle relaxers. Hopefully I can sleep tonight. Neck pain too. Gotta be at work at 7am. Sucks

 

[stophiss]

Gin,
We are pulling for you. Health is moving target and hopefully you will pull out of this current pattern. Not sure subjecting yourself to the casino environment would be good therapy but you know yourself much better than we do and will add, I believe too many make the opposite mistake and go underground and focus on their tinnitus which is the wrong approach IMO.

Mike,
Wonderful news for such a good guy. You have been through so much and maintain such a solid, thoughtful perspective.
All the best in the restoration of your hearing. Can't wait 'till you come to this forum and announce you can hear again. Congrats on your acceptance for the implants!!!