Hello, I'm new here

Hi, Maria. Sorry (lo siento) you are having issues. I also am having the same issues right now and I understand it is hard. If I have learned anything over the past 15 years that I have had this condition it is that nothing is predictable. Our symptoms show up whenever they decide to. I know that isn’t comforting, but what hopefully is comforting is that we all have gone through something similar to what you are going through. Look for other alternatives here such as the JOH regimen—it has helped many, but you have to give it time much like the prescription antivirals.

Try to cope as best you can and try to find the things that give some relief until it subsides again. I know that’s hard, but it’s all we have at times. Buenos suerte and I hope you are feeling better soon!

 

Hi Maria, so sorry to hear you are going through this. Mine is acting up again also recently. A lot of people on this message board say Serc takes while to work, so maybe try that again. I am also on JON and i believe that helps too. Some people on this forum also got relief fromChiropractic adjustments so that could be worth looking into. Also there are a number of pharma companies out there in Phase III trials of drugs that will be able to help us in due time so keep the faith!

 

Hola María, yo también soy de España. El SERC tarda como mínimo dos meses en empezar a hacer efecto y unos seis en hacer un efecto pleno, aunque también afecta la dosis ¿Cuanto tomaste? Yo llegué a estar en 24mg cada 8h, después baje a 24mg cada 12h y esta semana he empezado a tomar 18mg cada 12h.

La prednisona es un tratamiento que hay que ir retirando lentamente, siempre que te lo receten para cualquier tipo de enfermedad la dosificación será igual, tomarás una dosis alta para empezar y tendrás que ir bajándola poco a poco durante una o dos semanas. No hay nada raro en ello.

Los antivirales ¿Cuanto tiempo los tomaste? Les pasa un poco como al SERC y depende mucho de cada caso, hay gente que nota mejoría en 10 días y otros en este foro tardaron 2-3 meses en empezar a notar su efecto.

Otras cosas que puedes comprobar son tus cervicales y tu boca como posibles infecciones en las encías, muelas del juicio dando la lata o TMJ. También puedes hacerte test de alergias muchos aquí han aliviado sus síntomas al encontrar que eran alérgicos a algo y empezar a vacunarse, las vacunas para la alergia hay que ponerlas varios años antes de estar curada de todo así que si lo haces y no mejoras con la primera vacuna no te extrañes y no lo dejes a medias.

Posibles anemias que producen síntomas de meniere: B12, Vitamina D y Hierro. Yo estoy tomando un complemento con todas las vitaminas porque el resto de vitaminas también pueden ser beneficiosas para el oído interno o el sistema inmunológico y cuando más mejoría he notado ha sido estos días después de empezar a tomar hierro hace unos 10 días. En mi caso pedí una analítica a mi médica y dijo que no tenía nada, pero cuando la examiné yo vi que estaba al borde de tener anemia de B12, D y Hierro. Concretamente de D el mínimo es 30 y yo tenía 31 y eso en Julio tras haber estado tomando el sol durante dos meses y tomando alimentos reforzados con D. En Hierro tenía por ejemplo 270 y el mínimo era 200, pero el máximo 900; además la anemia del Hierro es muy difícil de detectar en sangre ya que si comes alimentos con hierro en los días cercanos al análisis te subirá el dato, pero tu cuerpo puede seguir necesitando un suministro de hierro constante durante meses para recuperarse del déficit así como sus reservas. Es una anemia que produce muchos problemas graves (debilidad, acúfenos, perdida de cabello, defensas bajas, mareos, nauseas, etc) pero tarda años en manifestar estos síntomas porque el cuerpo antes de manifestar que necesita hierro lo que hace es tirar de las reservas del hígado, médula, etc.

Las mujeres antes de la menopausia necesitáis más hierro que los hombres (nosotros 14mg/días, vosotras 18mg/día), pero en un embarazo necesitáis todavía más, no recuerdo ahora la cifra, pero sobre 24mg/día. Hazte unos análisis y si no tienes el hierro cerca del valor máximo, tomate dos meses un suplemento de hierro para mujeres (si compras para hombres o el normal suele tener 14mg). Pregunta a tu médico si puedes tomarlo por supuesto, pero te recomiendo que le digas que te notas débil o cansada porque si algo he aprendido de tratar con mis médicos sobre mi Meniere es que si le dices que quieres probar una cosa distinta para Meniere se cierran en banda, no te escuchan y no te recetan ni te hacen análisis ni nada, te despachan con un "Para Meniere sólo hay SERC".

Por último, el estrés puede probar Meniere también. Busca en google "acúfeno por estrés" "hipoacusia por estrés" "vértigo mareos por estrés" y verás que explican que mucho tiempo estresado genera adrenalina y puede cortar el riego sanguineo del oído interno y dañarlo. Si te relajas puede que mejores, concretamente lo que quieres es bajar el cortisol en sangre y para ello pues eso hay que relajarse, hacer deporte a mi es lo que mejor me ha funcionado (20-30 minutos de footing cada 2 días). Tampoco esperes mejorar por correr una semana, necesitarás meses.

Suerte

 

Hi Maria
Yes, I agree with what IvanA said. Probably. LOL

One thing you didn't mention trying is diet. Some people get help, and me, by eliminating some foods, like nuts. Have you looked at the Heal Your Headache book?

 

I am taking all of them but i believe that the Lysine, Lemon Bioflavonoids, Vitamin C and Vinpocetine are the most important ones.

 

So you eliminated nuts and after that you are feeling good?

 

Well, I eliminated nuts and other things, as recommended in Heal Your Headache ( I never had headaches, really) back when I had it bad in 2013,14 or so and I took AV's for a long time then too. Then i was absolutely fine for several years except for tinnitus which was minor and slight low frequency hearing loss.

Then my wife and I adopted the Plant Paradox diet which has a lot of nuts and Wonder Wife was baking things with almond flour etc. stress of whether to travel to Florida this year, Covid anxiety and BAM, my Menieres came back.

Now I have eliminated nuts and other things and I am improving. I expect to get some AVs soon.

Below is a list of foods from my notes from 2012, it probably came from the book:

10/4/2012, 6:34PM

DIETARY TRIGGERS

CAFFEINE

Coffee, tea, iced tea,and cola. Even decaff coffee and tea ( which contain additional chemical triggers ) may be a problem. Also, beware of coffee substitutes. Try caffeine free herb tea ( without citrus and other trigger flavors).

CHOCOLATE

White chocolate ( no cocoa ) is okay, carob is questionable.

MONOSODIUM GLUTAMATE

Chinese (and other ) restaurant food ; soups and bouillons; Accent and seasoned salt; flavored, salty snacks;croutons and bread crumbs;gravies;ready - to - eat meals; cheap buffets;processed meats;veggie burgers;protein concentrates;and low - fat, low - calorie foods. Watch out for hidden MSG.

PROCESSED MEATS AND FISH

Aged, canned, cured, fermented,marinated,smoked,tenderized - or preserved with nitrates or nitrites. Hot dogs, sausage , salami, pepperoni,bologna ( and other meats with nitrites), liverwurst,beef jerky, certain hams, bacon,pates,smoked or pickled fish,caviar,and anchovies. Also , fresh beef liver and chicken livers, and wild game ( which contain tyramine ).


CHEESE AND OTHER DAIRY PRODUCTS

The more aged, the worse (Permissable cheeses include cottage cheese and good quality American cheese ). Beware of cheese containing foods, including pizza. Yogurt ( including frozed yogurt ) sour cream and buttermilk are also triggers.

NUTS

Avoid all kinds, as well as nut butters. Seeds are okay.

ALCOHOL AND VINEGAR

Especially red wine, champagne and dark or heavy drinks. Vodka is best tolerated. Clear ( ideally distilled ) vinegar is allowable. Don't overdo condiments ( ketchup, mustard,and mayonnaise) made with vinegar.

CERTAIN FRUITS AND JUICES

Citrus fruits (oranges,grapefruits,lemons,limes, tangerines,clementines and pineapples ) and their juices - as well as bananas.Also avoid raisins (and other dried fruits if preserved with sulfites ) raspberries,red plums,papayas,passion fruit,figs,dates and avocados.

CERTAIN VEGETABLES ESPECIALLY ONIONS

Plus sauerkraut,pea pods, and certain beans ( broad italian,lima,fava,and navy,and lentils). Allowed leeks,scallions,shallots,spring onions; also garlic.

FRESH YEAST RISEN BAKED GOODS

Less than one day old; homemade (or restaurant baked ) breads,especially sourdough,as well as bagels,doughnuts,pizza dough,soft pretzels,and coffee cake.

ASPARTAME
(NUTRASWEET)

Saccharin (sweet n low) may also be a trigger for some. As far as I know, sucralose (Splenda ) isn't a problem.


OTHERS

Perhaps soy products, especially if cultured (miso) fermented (tempeh) or otherwise highly processed (e.g. soy protein isolate/concentrate ). Watch out for soy sauce containing MSG. Less risky are unflavoured tofu and soy milk and flour. Soy oil is safe. Possibly tomatoes ( and tomato based sauces ) mushrooms......whatever gives you a headache.

 

Nuts and dried fruits are rich in arginine so if you have a viral cause for Meniere you may notice improvement if you stop eating it. The same thing happens with citrus fruits such as orange, etc.

What is a bit strange about your list is that you remove from your diet a lot of products that can be triggers for very different causes of Meniere and the normal thing is that each person only has to leave a couple of them and not all according to what affect you. For example vinegar, yeasts, etc. They are triggers for people whose cause of Meniere is a fungus, nuts and citrus fruits for viruses, etc. Even the salt, caffeine, chocolate, sugar, sweeteners and alcohol that are usually triggering for many people is very rare that all are at the same time for a single person.

 

It's the "kitchen sink" approach. At the beginning, or anytime really, who knows for absolute sure what their particular cause is, or if it is any of these. If cutting out all those things or at least drastically reducing them improves your situation, then you are winning. If you want to gamble with your winnings, you can add things back.

My approach would be to cut out as much as possible until such time as you want to risk a relapse.

For me, I'm pretty sure mine is viral, but I'd rather go without some things unnecessarily and get back to my normal healthy self. There are not too many things on the list that are absolutely essential to me. I still have some coffee and salt because it doesn't seem to bother me but I have reduced coffee, never had a lot of salt.

 

So eliminating nuts did improve your headache, but not MD symptoms, right?

 

I noticed that coffee helps me to manage my MD symptoms like pressure in the ears and overall feeling. Caffeine narrows blood vessels - maybe this is somehow helping with the ear pressure?

I don't know, maybe this is just coincidence, but my MD symptoms started after 2 weeks when I quit coffee.