My story (new here) - feeling so overwhelmed and confused

Yeah, scary, isn't it! Don't worry, even if it is Meniere's (and it does sound like it) there are lots of things you can do to beat it. When it is bad, it is very very bad but you can fix it. Different things work for different people. For me, mine seems to be caused by a virus, probably a herpes virus in my inner ear. This seems to be a frequent cause.

I noticed you are athletic. If you are drinking protein shakes, I suggest you stop. They are high in Arginine which promotes virus replication, just in case yours in caused by a virus.

For me, lots of supplements, anti-viral pills, and a quite restricted diet to have more Lysine and less Arginine, has allowed me to keep it pretty much under control. And yes, stress is a definite trigger.

It's a bit of a long journey but, hey, ya gotta do it.

 

I was crying every day from the end of February to the end of August with anxiety attacks, etc. Dizziness, headaches, blockage in the ears, times when hearing was completely gone and came back, fatigue, etc.

It's all normal within Meniere, don't worry, it's normal for you to cry that you're confused and have a lot of doubts. Unfortunately I cannot tell you that there will be an easy cure or solution as if this were a cold because there is not, otherwise this forum would not exist. But I can tell you that stress affects a lot, I started to find some relief in my symptoms when I started to relax a little (not much because I am nervous). I left the salt too, but the truth is that I have not noticed that it helps or that it worsens by taking salt, I have reduced its consumption for health reasons, but sometimes I eat things with salt (nachos with hot sauce for example) and it has never worsened me my symptoms.

In any case, each Meniere is unique, you have to find out what affects you specifically. But the MRI and the rest of the tests you have to do because they serve to rule out causes and confirm a possible Meniere. After that you can start trying things from this forum such as vitamins, antioxidants, antivirals, etc. There is a lot of information here and you can try each thing separately, but for now I would not rule out that it is a VBBP because you do not have tinnitus, the hearing loss is too little to still know if it has been caused by Meniere and you do not present any other symptom beyond a few dizziness every one to two months which can be benign vertigo.

Patience, do the tests and keep looking. Although it is Meniere it is not the end of the world, in this forum you will find friends with whom to share this disease and also in the other subforum where to talk about cinema, music, books, etc. I started running after my Meniere, I tell you in case you are thinking that vertigo is going to prevent you from doing it in the future, the answer is no.

 

I guess you have secondary endolymphatic hydrops. It is not the classic meniere as you dont have tinnitus. I have the same issue since 7 months and it is easing up with time. I don’t know if it shall subside but with proper diet i am able to control it. With ECoG the dr will see if you have extra hydrops. Just take care of your food like me to prevent it from going to primary hydrops which is menieres. Since you exercise (like me), you can check your neck with a dr to see the alignment of the spine. Also check the mattress you are sleeping in, i changed mine to a much more comfortable one as the old one was a bit curvy and this helped me a lot. Good luck and keep us posted

 

No doctor should be telling you that you likely have Meniere's until after you get the results of the tests you already have scheduled. As you yourself indicated, it's a diagnosis of exclusion so other possible causes can't be ruled out until after the test results are received.

 

Gosh just reading your story, there are so many similarities to mine (posted yesterday). Most of my early vertigo attacks came on during the night or in the early morning. Are you a tummy sleeper? I felt vertigo come on when I'd move my head from left to right, facing down. So I started sleeping with a pillow between my knees. Now I sleep on my back or side (still with a pillow between my knees). We also upgraded our bed and pillows.
I swapped out electrolytes for water when I run. I found this blog a good read - Laura Fisher a nutritionalists with Menieres.
Laura Fisher Nutrition

 

If the results of your VNG come back in the normal range, explore MAV.

 

Thanks for the link! There are a lot of good info with the references

 

Have you ever had:

1. Cold sores ever or chicken pox as a kid
2. Yeast infections
3. Courses of antibiotics (even as a kid for ear infections or a teen for acne)
4. Prolonged periods of stress

... as these may yield clues....

 

So I cannot comment on an exact diagnosis and it would be great if it was something easily treatable. However, even if it is not Meniere's, these conditions where vertigo is in play are often confusing and frustrating and there seems to be little help. So let's assume that the vertigo is being caused by some imbalance/inflammation of the inner ear.

Then what is causing that?

If you have cold sores and/or chicken pox then you have a Herpes Simplex or Herpes Zoster virus lurking within you. Many of us here feel that this virus is now attacking or at least indirectly causing the inner ear issues. Hence many follow an antiviral regimen. Look up "John of Ohio" regimen in these forums which provides a lot of information about supplements you may want to start now. They are cheap and safe and many have found relief (though it may take time).

If you have ever had yeast infections (as you say you have) then you are guaranteed to have Candidiasis. This is where (usually thanks to antibiotic treatment), the usual balance of bacteria and a tiny number of yeast in your intestinal tract has been badly disrupted and the Candida variety of yeast is now taking over and running the show, causing lots of inflammation and immune issues all over. Do some internet research on "Candiasis" and "Candida Overgrowth". Basically, to deal with this you follow a diet that reduces sugars & simple carbs and some other offenders. And you take some supplements, most notably Probiotics. But again, you 100% for sure have this situation.

Almost everyone has a sensitivity to wheat in particular but that can be extrapolated to gluten. Fortunately if you are following a Candida program it will eliminate wheat probaby so may as well give it a full go and ditch the gluten. Literally a friend of my neighbour cured herself of vertigo just by going gluten free. It brings inflammation down in the body. The Candida program also eliminates dairy (due to the lactose sugar it contains) which is the #2 food that people are allergic to so again, that's two birds with one stone there.

Finally, if you have been under excessive stress then investigate "Adrenal Exhaustion" and "Adrenal Insufficiency". There are many products on the market that will address this, mostly containing some mixture of Rhodiola, Holy Basil, Siberian Ginseng and Ashwaganda (all herbs). You may also consider taking "Adrenal Glandular" for a few months to support your Adrenals. You mention hair loss/thinning issues. Excessive stress will do this to you. I know a guy who was under such awful stress for such a prolonged time that he had big bald patches on his face where his beard would be. Hair just wouldn't grow in these patches all over his face. Only when the stress stopped did it start to regrow.

If this all sounds overwhelming to you and you want some professional guidance on all of this, and have the financial means to do so, consider seeing a naturopathic doctor as the specialize in all these things. But you can certainly do some reading on your own and see if you find that these things sound good to you.

I would suggest that any or all of these root issues may be in play here and when you do the work to address them, you may well reap the benefits of recovery. And if nothing else, you will feel a lot healthier while you wait for the doctors. There is nothing much to lose to try!

Good luck!

 

Me again. So I just wrote this on another thread and figured I would add it here for you.

If the above all seems overwhelming or you want to get a head start, today you can begin with:

1. Dropping the sugar from your diet, including natural sugars like in fruit juices. The odd piece of fruit - fine, but other sweets and sugars need to go. So does high fruit intake, especially dried fruits.
2. Dropping the wheat and barley from your diet. Move to rice, potatoes, quinoa, couscous, millet, oats.
3. Where possible, avoid dairy products (milk, cheese, yogurt, ice cream). Look at having almond/rice/oat milk products instead. Eggs are NOT dairy and while many people are allergic to eggs, let's not worry about that for now.
4. Ditch eating nuts like almonds as they are high in arginine and that promotes virus replication (and we are trying to avoid that as it may be a major factor here)
5. Keep watch on your salt intake, keeping it at or under 2000mgs/day.
6. Start taking a high potency multivitamin (with food) that includes 50mgs of the B vitamins (someone at the supplement store can help you find this)
7. Start taking a good probiotic supplement (also called "acidophilus", ask for a high potency one and one with a mixture of different types of bacteria.... these are not bad bacteria that cause infections but the good bacteria that live in our guts and are very beneficial that we would get in things like yogurt). Take at night before bed.
8. Start taking 1000 mgs of vitamin C, one with at least two of your meals
9. Start taking Lysine (500mg), two in between a meal.. This is another natural supplement (it's an amino acid which is found in all manner of proteins we eat).

As you read and research, you will add, increase doses and otherwise modify accordingly.... but these are all really basic and a very good place to start right now.

The diet stuff may seem overwhelming but thankfully there are a lot of good gluten free options out there in the stores so you won't feel deprived and a lot of great recipes online. It mainly means you will have to spend some time cooking from scratch (to avoid the salt, sugar and may other preservatives used in packaged foods).

Good luck!

 

I would get to a nerologist. one that specializes in oto issues. I would think the cyst could stimulate migraine activity which definitely can manifest in vertigo, with or without headaches. I suffered with Menieres for 3 years and was preparing for a Laby. my doc had me run thru a few tests. It was the normal function on the VNG that stopped the laby and started us on the MAV treatment. I have had zero vertigo since I started treatment with a 25mg pill called topiramate. I never had headaches either. My tumor is in the pituitary gland.

 

I'm sorry you are having these concerns, and I wish you great good luck! I am new here, too, and with a newly confirmed diagnosis myself. I'm having a heck of a time figuring out how to gain some "control" of symptoms. Grateful for everyone's input!

 

What type of doctor do you go to? My ENT sent me to a neurootologist. (he deals entirely with the nerves in the ear. In my case I had 2 shunt surgeries 4 years apart and got to the point where I was considering giving up on life as I knew it. I had VNS surgery in 2001 and it changed my life for the better. It is not for everyone but if you need someone to talk to message me.

 

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