New Here. Is this a MAV site or Meniere's Site?

I'm wondering about vitamin D and B12 deficiencies? Although if you are walking outside 40 minutes a day, that might take care of the D issue, unless you wear sunblock.

 

I wear long shirt and pants and a hat but no sunblock. Also taking 5000 IU D. Ask the doctor last time I was OK on B12.

I guess you are skeptical about the genetic factor. Sound pretty far fetch.

My older sister (60+) has perfect health. Only problem, she can't sleep...just like me.

 

This is just what the doctor said to me when I came out of surgery.....maybe I mixed it up.....but he used the words excess boney (formation or mass) near my cerebellum that was a tell tale sign of menieres......my doctors name is travis pfannenstiel (I MAY have spelled it off a little) but he is a nuerotologist and he seems pretty educated with menieres disease. (He also reccommended the vitamin c regimen but tricare won't pay for the supplements as there is no medical backing for it.....bummer ill buy them myself....

 

'Bony mass' = Chiari Malformation maybe?

 

DaveTO, I'm not skeptical about the genetic factor, but think it's only a FACTOR, not a root cause.
Do you have any caffeine? Some of us are terribly sensitive to caffeine. I can't drink coffee--one cup in the morning will disrupt my sleep later that night (in addition to making me crazy for 2-3 days). I won't have any trouble falling asleep, but I will wake up after 2 hours, wide awake.

You might want to get your actual numbers on the B12 test. Doctors will tell you you are fine if your serum level is above 200--but that just means you are not DYING of B12 deficiency. Anything under 650 can cause neurological problems. In addition, your serum B12 might be just fine, but if you are deficient in intrinsic factor, your body can't utilize the B12 in your blood, and you will be technically B12 deficient anyway, even with optimal serum B12 levels. Doctors are either unaware of this, or believe it to be rare, but one look at the pernicious anemia forums, and you can tell it's not so rare. It's kind of like Meniere's and celiac--all the forum members are told they were crazy for years until somebody finally puts 2 and 2 together and figures out that they have a legitimate medical condition.

 

Don't know. Would like to know. If it were, that would present a different diagnosis than Meniere's, and I expect a different treatment.

Alenasmommy10, next time you speak to the doctor, would you ask for a clarification of what that boney mass was and how it may have played into the Meniere's aspect of your condition? This seems a good item to pursue understanding. Thanks!

 

Taximom,
I haven't drank coffee all my life. Now I stopped drinking tea, soda also. My intake from caffeine is 0. All I drink is water and a bit of rice milk in cereal. Probably good idea to get the B12 numbers. I don't think I have any rare conditions that can't utilize B12. All the siblings do comparison problem once in a while. Happens I hit the jackpot. Never have checked for pernicicous anemia condition.

Awhile back I did some search on insomnia. Found tons of people suffering from insomnia. Remember one gentleman create his own combo from three ingredient (can't remember, one maybe banned). He suffer 20 years of insomnia. Experimented with all kind of stuff. He was promoting it (for free of course) for others to try. My insomnia is not as severe as the gentleman, but this bout has brought my insomnia to new heights. Not a very pleasant situation.

Next time I see the doctor, I will ask for the B12 and D numbers.

Is there any other numbers that I should take note of?

Thanks Taximom, appreciate you for taking the time. You have so much knowledge to offer.

 

allansmommy, did they just decompress the sac or did they put in a shunt?

 

For sure! I see him next week to remove middle ear fluid! Ill let you know

 

Unfortunately, I only have a little knowledge here and there--and as they say, a little knowledge can be a dangerous thing! (but especially to doctors who might have less than a little knowledge on that particular subject....)

Although my serum B12 was low enough to cause neuro symptoms, it was not low enough (i.e., under 200) to qualify as pernicious anemia. That's the official cutoff in the US--under 200.

Have they ever run thyroid tests?

Oh, and if you are off gluten, it might be good to know that Rice Dream brand of rice milk is NOT gluten-free. It is processed with barley enzymes, leaving just under 200ppm gluten, so they are not legally required to disclose it. And since barley is not one of the main 8 allergens, it is not required to be listed in the ingredients.

Isn't that ANNOYING????!!!

 

Taximom, you heroes are always too modest.

I had a yearly checkup 8 months ago with blood works. The only thyroid test I know they do is when they check your neck for bumps?. Not sure if there are any blood work that shows anything. That checkup, I was given a clean bill of health...minus my menieres.

Yes I have read your post regarding Rice Dream. Thank you. Up here, Rice Dream have no label that says gluten-free. I am still new at the gluten game. However, I am quite sure I am gluten tolerant even though I am on a gluten free diet. I am trying to cover all the basis Meniere, MAV and others in one sweep. I was really really desperate because I was totally non functional.

 

Just decomprrssion no shunt.....but I go in on wed next week to get tubes to drain fluid from my middle ear due to the surgery

 

DaveTO, a proper thyroid test would be blood work, testing for thyroid antibodies as well as testing the levels of T3/T4 (the hormones the thyroid produces, or is at least supposed to produce) and TSH (Thyroid Stimulating Hormone, produced by the pituitary).

If your TSH is too low, your thyroid won't produce enough T3/T4. Easy fix--you would take synthetic thyroid hormone (some practitioners prefer Armour thyroid hormone, from pigs).

If your TSH is too high, it's a much trickier fix.

Celiac disease/gluten intolerance is seen so often together with autoimmune thyroid disease that my endocrinologist says that she is now testing all her thyroid patients for it, as well as all diabetic patients (also seen often together).

It doesn't necessarily mean that one CAUSES the other. It's also possible that both are caused by the same thing (perhaps vitamin D deficiency?).

 

wow interesting thread that goes every which way. I'm realy wondering what the heck i have i do know that allergies are my biggest trigger and the Neurotologist said that that can happen with meniere's - finaly someone to tell me that before everyone just blew it off.


but..... after reading this post - i honestly don't know what to do - i guess i should talk to him about MaV when i go in this month. I can't take diuretics so all i take is valium and try to keep my sodium low. still not sure what i have he says basically atypial meniere's - degree of meniere's but tht's it.

i'm just all confused now as to what to eat what my triggers are, etc. sounds like several of us are going through the same thing!!!

chris

 

Thanks Taximom. Will get that checked and keep you posted.

Dave