When nobody knows what's wrong with you!

So I have a regular MD appt. tomorrow. My ONT has done a good job of keeping me upright (gent, valium, etc.) But I have a crazy array of symptoms that just wont go away. I am literally "slightly" sick all the time. Its unbearable.

Headaches-not often but bad when I do.
Generally ill feeling-almost like having a flu that never goes away.
Allergy like symptoms in my good ear-On and off, totally unpredicatble
Light Nausea-Usually goes hand in hand with the allergy like symptoms. On and off.
Raging tinnitus in my MM ear.
Pain in my good ear. On and off.
Tired as hell all the time.

No vertigo, no dizziness, very little fullness.

WTF is this? What do I even ask the regular MD for? A vitamin shot, something to help my immune system, or something to counter the allergies?

How do I ask for help if I don't even know what I have?

 

Coach:

the one thing you do know you have is mm.
It effects us all differently. You have done great, many cannot even get out of bed.

I am wondering is you have list complete function, or is you have a little function that makes you sick but not strong enough to cause vertigo.

Maybe ask oto for another eng.

This shit absolutely sucks!!

Be good

Joe

 

.

 

I had something like this going on, and then had my tonsils out and couldn't eat anything for days. I got better. As soon as I was able to eat food again, it came right back. So I concluded it was something I was eating.

And it was. Turns out SOME of those symptoms were from eating the plants and food additives in the nightshade family.

I hope you can figure out what's doing it to you.

I still have the raging tinnitus, and some dizzies...

 

I tried the food angle as well to no avail. I am tempted to blame allergies, as I definitely have those to a degree. But I also think I have just enough MM to make me uncomfortable, not enough to make me skin.

Purgatory.

 

Coach it is what it is. It sucks man. I feel like that most of the time and I would like to say after several years it gets better or you get use to it, but I cant. it just sucks.

I feel for ya pal.

 

I don't know why there isn't more mention of the CSF pressure study at Duke. It seems like it would benefit a lot of people here with the constant, ongoing symptoms. I am personally one of those people and I am willing to fly there from California to get the treatment if necessary (not quite at that point yet). I emailed the doctors there myself and they are open to seeing patients coming in from long distances.

It might be worth mentioning this to your local doctor and see what he says. It might not address the root cause or provide permanent relief, but I would welcome any amount of relief at this point.

 

It can still be the food thing. The last elimination diet I saw had people just "eliminate" one thing---which will only work if you eliminate the one mysterious thing that bothers you, which is highly unlikely. Or else the menu had potatoes or something else odious as one of the allowed foods. If you are still eating foods that cause your problems, or if it's in your medications, you will never know.

seriously; I had allergy problems and took chlortrimeton over the counter tablets, and got worse, and worse, and worse....

here are the ingredients.

Ingredients
Active Ingredients: per tablet: Chlorpheniramine Maleate (4mg) Inactive Ingredients: Acacia, Butylparaben, Calcium Phosphate, Calcium Sulfate, Carnuba Wax, Corn Starch, FD&C Yellow 10 Aluminum Lake, FD&C Yellow 6 Aluminum Lake, FD&C Yellow 6, Lactose, Magnesium Stearate, Neutral Soap, Oleic Acid, Potato Starch , Rosin, Sugar, Talc, White Wax, Zein

 

Coach,

Just go in to your MD, present your symptoms, ask for a complete physical and general blood work, and see where that leads. It is easy to blame everything on MM, and maybe it is the only cause of the symptoms you are experiencing, but there are a million other things that can be making you feel this way. Certainly allergies, inhaled and/or food. But anemia, thyroid problems, pre-diabetes, high blood pressure, and the list goes on. Let him start from scratch without planting any seeds in his head, at least at first. Of course, he probably knows you have MM, but otherwise see where he goes with it. Also, when did you last have your vision checked?

I feel for you. I feel like that many days, but I do have good days in between the bad now. Keep us posted on what happens!

Angelea

 

Are you bilateral?

 

Coach,

I am a bit confused.

What is the harm in asking to try a particular migraine medication coupled with Klonopin as a benzo to give you some immediate relief.

This may be the ticket.

Am I missing something here? Why would you not try that route and explore every possible medication (ie. beta blocker, calcium channel blocker, etc ) out there?

Or have you tried all of these already?

Todd

 

I can take a benzo and feel better, but I would have to take them constantly. I have valium. I took a little today and was fine as far as being able to function. I just don't want to feel sick 24-7.

And I think I have so many "little" things wrong that there has to be a bigger issue beyond MM. Bad immune system, bad reaction to the destruction of the ear with gent, the terrible air in the valley where I live? Or did dealing with MM for so long literally wear me out?

The more I investigate, the more I have no clue. I'm almost ashamed to go to the MD, because he's going to look at me and say "What do you want me to do?" And I just wasted two more hours chasing my tail.

Dont get me wrong, I get shit done every day. I just want to feel good again. I haven't felt good for 6 months. And I can't figure out why. Maybe if they run a bunch of blood tests they can figure it out.

 

Are you right- or left-sided MM? I agree 100% that when you can't pinpoint exactly what your symptoms are that the anticipated response from any doctor will be to shrug his shoulders and send you on your way. I recently felt somewhat vindicated when I found a couple of articles on the forum that specifically noted that people with right-side Meniere's have measurable "cognitive disturbances." The list described me to a "T". If you aren't familiar with this thread or these articles, PM me with your email address and I will be happy to send the attachments. I am terrible at finding the threads for these things and I couldn't tell you what it was about, but someone posted them.

That being said, have a complete physical and all the blood work your doctor is willing to order. Most physicals include labs that look at your electrolytes, your thyroid, kidneys, liver, lipids, blood sugar, etc. Most doctors are now willing to order vitamin D, too. Ask for that and B-12 to be checked, as well. Low levels of either can make you feel crappy.

 

Coach, going to the general practitioner is a good idea. We all know you have MM. There may be something else going on.... Have you been tested for Lyme disease? The many ideas above may be a good start. Ask a lot of questions and tell the doc you think something else is wrong. Good docs listen. Ask about seeing specialists. Sorry you don't feel yourself. VK

 

I agree with Todd,Verapamil as helped a lot of people.Look for Sirlanc's post on it.It's worth a try.

 

Since my last horrific bout of menieres with multiple daily vertigo attacks over 9 months I am left with a chronic dysequilibrium and false sense of motion. The ENT has no explanation, saying "that's not meniere's" - well then, what is it??? He has referred me to a neurologist and I feel certain I will get no answers there. It get's frustrating! The PT I am currently seeing for back pain also does VRT and said that this is definitely a form of vertigo which is what I have suspected all along. I know many others on this forum have these same symptoms so how can we be told that it is not meniere's when it certainly seems to be the cause?

 

Well, the one proactive thing I did this morning was to look at what I have been taking every day, and what might be contributing to this general malaise.

Dyazide-I laid off of that today. So far feeling much better. I have been taking that non-stop for 6 months. Might be beating down my kidneys and liver.

Cup of coffee-laid off today. So far feeling much better

Three 500 MG Tylenol-laid off today. So far feeling much better

Ginko pill-laid off today. So far feeling much better

Allergy pill-took that for my good ear and the ongoing allergy issues.

When I go in today, one idea is that I have been taking so much shit to make me feel good that I have made myself feel worse. Its a possibility. The other is that I need some help with my immune system.

I'll post after I return.

M

 

Still runnin the constant light spins with bouts of real spins myself. It is taking its toll on my stamina. Barometer is all over the board and definitely not helping. Each ear is reacting differently and inconsistently with the pressure changes.
On the bright side, it is bad enough that coffee is temporarily having no noticeable effect.
The S.S. evaluator guy told me last week that MM is not debilitating, and was not going to accept my claim. Then he asked what MM was. lol
Go figure.

 

Coach: I HOPE THIS IS AN ANSWER! With all my heart. wishing the very best for you---you deserve it!

Truly, as helpful as my doctors tried to be (when they actually tried) they were no help with this at all. If I accidentally eat a bell pepper, I am in need of benedryl and maybe an epipen within ten minutes---BUT IT DOES NOT SHOW UP ON A SKIN TEST. and some of this stuff gives me migraine, too.

 

Most common side effects of Diazide per drugs.com:

Diarrhea; dizziness or lightheadedness when standing or sitting up; loss of appetite; nausea.

Might be a big part of your problem.