Chronic Vertigo, Inflammation And Fatigue

[houseofdavid]

Hi all,

 

I am new to this forum and decided to post my current situation with two hopes: that others may have some acquired wisdom they can share, and to also help anyone else out there who may be struggling.

 

I have had chronic vertigo, inability to concentrate (foggy headedness), inflammation in the glands and inner ear, and sore throat for 17 months now. The symptoms ebb and flow, with some days being more tolerable and the flare-ups making me bedridden.

 

The symptoms began during the flu season and began with a flu-like illness that developed into the syndrome. I saw two general practitioners who were puzzled and sent me to an ENT.  The ENT diagnosed the vertigo as the type that occurs when the crystals in the inner ear get shaken up and said he 'didn't care' about the chronic sore throat or swollen glands. He sent me to a physical therapist who disagreed with his diagnosis and said the vertigo was likely due to neuritis, or inflammation of the nerve in the inner ear, which is thought to be caused by a viral infection. This is much more likely, but doesn't explain why I cant shake it, and there is no accepted cure for neuritis.

 

I have been gluten free for several years. (Prior to that, I was a vegetarian and ate massive amounts of wheat gluten daily and so developed Candidiasis (thrush), another saga that involved skeptical or hostile doctors and the necessity to do research and self-diagnosis.)

 

In the last two weeks I've also developed joint pain in the right hand and my vision is sometimes blurry or 'off'.

 

The evidence seems to point towards some kind of autoimmune disorder, such as lupus, rheumatoid arthritis or thyroiditis.

 

I'm now looking into lectins in food and their apparent connection to immune suppression/disorders in some people, but the research is scant.  I'm going to eliminate high-lectin foods (grains, legumes, dairy and nightshades) for a week to see if this impacts the symptoms.

 

Has anyone ever experienced anything similar, or has any substantive information about the lectin connection?

 

Thanks so much and so nice to see this forum!

 

megan

[Pegleg84]

Oh dear. Vertigo is not an easy thing to deal with. Especially that constant.

I was pretty sure something was up with my inner ear a couple years ago, as my mother also has occassional vertigo. After a battery of tests and the ENT telling me nothing was wrong and maybe see a neurologist... I looked at my diet.

For inner ear problems, they recommend cutting back on salt and dairy. Low sodium (not no sodium) made a difference (I still get a bit dizzy if I have too much salt). Cutting out dairy, particularly casein, made an even bigger difference.

Then came soy. Oh soy. Cutting soy from my diet has made a massive difference in my health. if I get into it, I get brain fog, dizziness/unsteadiness, joint pain, mood swings, etc etc.

 

Now, it sounds like your vertigo is pretty serious, but I would recommend cutting out soy and dairy for a while, completely (including soy lectin). Cutting nightshades might not be a bad idea as well. Try a month. See if it makes a difference, then add them back one at a time (for nightshades, this means each individual veggie at a time) and see if you react.

It might not completely solve your problem, but it might help, particularly with the brain fog, blurry vision and joint pain.

 

Hopefully others will have better advice, but at the point changing your diet is probably the best and safest thing to try.
(also, make sure no gluten is sneaking into your diet)

 

Welcome to the forum, and good luck.

[houseofdavid]

Thanks so much for your response.

 

I had arrived at a very similar conclusion about my diet. I am a blood type O and began following the blood type diet several years ago with huge improvements in my health. But when I stopped and really considered my diet over the last few years, I realized I haven't been keeping to the protocol enough. For example, corn and potato products are hazardous for type O's because they agglutinate, especially in the joints and can cause joint pain. But all of those pesky gluten free products out there are based on corn and potato flours. I had also refused to give up my coffee ( I live in the pacific northwest!) and my red wine, both of which are not good for type O's.

 

I've stopped the coffee, the wine, and the processed gluten free products and am back to basics and strict compliance with the type O diet and I feel better already. (This would also mean I'm not eating any more goat cheese products, half and half in my coffee, or the sodium in the processed foods, so there is consistency with what you advised.)

 

I should say that I do understand that the blood type diet is considered controversial and I am not using this forum to advocate or debate it. I can only say that even my partial compliance with it brought me benefits, and full compliance with it has already brought more.

 

Thanks so much, and all the best,

 

megan

[skullgrl]

Have you considered the possibility of Gluten Ataxia? See if any of the other symptoms of it sounds like you. I was gluten-free and I still developed G.A. due to trace amounts of gluten.

 

Hope you figure it out and feel better!

 

Edit: Just thought to mention I have swollen lymph nodes too.

Edit Edit: Don't forget that Celiac disease is an auto-immune disease, so if they think it could be auto-immune and you come back negative on the things you mentioned it could be that you are a Celiac.

[SMRI]

Do you have ringing in your ears or have you noticed any hearing loss--maybe feel like people are mumbling a lot?

[skullgrl]

Yes, although its not my biggest complaint. I also have an issue where if I'm doing something else and someone starts talking to me and I don't really hear them, I won't hear them at all. Actually, thinking about it now I do have problems with it sounding like people are mumbling a lot! 

 

Your vision problems, I have Visual Snow. Is it anything like that?

 

I suggest you buy Gluten Freedom, by Dr. Alessio Fasano. Apart from it being an amazing book otherwise, it has a helpful section on the neurological issues/nonresponsive Celiac disease. His "Fasano Diet" has really helped me, although I did start it before the book came out based on basic information on here. Your issues with potato and corn could simply be an issue with all/most premade gluten-free food. I know I can only tolerate a couple of certified gluten-free (10ppm, by GFCO) things in a day and even then its things like peanut butter or spices.

[SMRI]

Get an an appointment with an ENT that deals with Meniere's disease http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/definition/con-20028251 . Your symptoms are very similar and hearing loss and ringing in the ears are an unfortunate side effect of this.

[Javi]

Hello,

I have developed similar symptoms for 3 months now. It all started with dizziness that turned into insomnia which was terrible. It all started during the summer, I thought it was the extreme heat and perhaps that I was not drinking enough water. The dizziness started and then I was having trouble falling asleep, when it became chronic, I was awake all night. I saw my general doc, not really sure what I had. Went to the ENT thinking that I had Meniere´s disease, my ears are alright, she could detect some dizziness with some special glasses she put on while looking at my eyes. I went to see a neurologist (including brain MRT, no brain tumor), all fine. I even went to an osteopath, perhaps something with the Vagus nerve and the Atlas C1 disc, it helped quite a lot, the dizziness was less and I could sleep a little bit better. I have read many articles, from the Vagus nerve, to the leaky gut, to allergies, gluten, etc, I have made some changes to my diet, I stopped drinking beer and wine, in other words, stopped drinking alcohol, and I am cutting on bread and pasta, no junk food at all. I have joint pain sometimes, specially in the elbows, so I try to hit the sauna 2 to 3 times per week and it helps. I am trying to take it easy, the dizziness, when it hits me, it is very uncomfortable, and for the lack of sleep I have been taking melatonin or valerian at night. No sodas, just 1 coffee a day, the least salt possible, and well, just staying positive. I would really appreciate any insights or comments from other users, thank you!

Javier

Edited October 14, 2019 by Javi
correction

[cyclinglady]

15 minutes ago, Javi said:

Hello,

I have developed similar symptoms for 3 months now. It all started with dizziness that turned into insomnia which was terrible. It all started during the summer, I thought it was the extreme heat and perhaps that I was not drinking enough water. The dizziness started and then I was having trouble falling asleep, when it became chronic, I was awake all night. I saw my general doc, not really sure what I had. Went to the ENT thinking that I had Meniere´s disease, my ears are alright, she could detect some dizziness with some special glasses she put on while looking at my eyes. I went to see a neurologist (including brain MRT, no brain tumor), all fine. I even went to an osteopath, perhaps something with the Vagus nerve and the Atlas C1 disc, it helped quite a lot, the dizziness was less and I could sleep a little bit better. I have read many articles, from the Vagus nerve, to the leaky gut, to allergies, gluten, etc, I have made some changes to my diet, I stopped drinking beer and wine, in other words, stopped drinking alcohol, and I am cutting on bread and pasta, no junk food at all. I have joint pain sometimes, specially in the elbows, so I try to hit the sauna 2 to 3 times per week and it helps. I am trying to take it easy, the dizziness, when it hits me, it is very uncomfortable, and for the lack of sleep I have been taking melatonin or valerian at night. No sodas, just 1 coffee a day, the least salt possible, and well, just staying positive. I would really appreciate any insights or comments from other users, thank you!

Javier

Is there anyway to get tested for celiac disease before going gluten free?  A celiac or someone with a gluten sensitivity needs to be on a very strict gluten-free diet.  Gluten can be hidden in so many foods.  Once gluten free, it can be very difficult to go back on gluten to get a diagnosis.  Learn more:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Javi]

Hello Ciclinglady,

thank you for your reply with the link to the celiac disease screening. I apologize for replying so late, I had forgotten I had posted on this page. It hasn´t been easy this couple of months, since October 2019, the dizziness comes and goes, what is new is the inflammation in some joints and I am having some sort of trigeminal pain in my face, in my jaw and cheekbones, like if the muscles on the side of my head were strained. I went to a jaw orthopedist and I was diagnosed with TMJ disorder, but the pain in the face is awful, it is like in the nerves. Sometimes I wake up with a really stiff neck and trapezius muscles, after physio the pain is reduced, but a couple of days later it will come back. I will see a internist who specializes on pain and rheumatology and I will also get the celiac screening plus a rheuma blood screening test. I have really tried to eat better, taking Lysine supplements, Hericium, and a healthy diet, but the inflammation is still there. I still eat bread (made with spelt) and pizza occasionally, so I guess if I have the celiac screening there will be enough dough in my blood for a result. Thank you once again!

[cyclinglady]

Just make sure you are consuming 1 slice of bread or equivalent daily in order for celiac disease testing to work.  

[FelissaML]

On 7/7/2014 at 8:47 PM, houseofdavid said:

Hi all,

 

I am new to this forum and decided to post my current situation with two hopes: that others may have some acquired wisdom they can share, and to also help anyone else out there who may be struggling.

 

I have had chronic vertigo, inability to concentrate (foggy headedness), inflammation in the glands and inner ear, and sore throat for 17 months now. The symptoms ebb and flow, with some days being more tolerable and the flare-ups making me bedridden.

 

The symptoms began during the flu season and began with a flu-like illness that developed into the syndrome. I saw two general practitioners who were puzzled and sent me to an ENT.  The ENT diagnosed the vertigo as the type that occurs when the crystals in the inner ear get shaken up and said he 'didn't care' about the chronic sore throat or swollen glands. He sent me to a physical therapist who disagreed with his diagnosis and said the vertigo was likely due to neuritis, or inflammation of the nerve in the inner ear, which is thought to be caused by a viral infection. This is much more likely, but doesn't explain why I cant shake it, and there is no accepted cure for neuritis.

 

I have been gluten free for several years. (Prior to that, I was a vegetarian and ate massive amounts of wheat gluten daily and so developed Candidiasis (thrush), another saga that involved skeptical or hostile doctors and the necessity to do research and self-diagnosis.)

 

In the last two weeks I've also developed joint pain in the right hand and my vision is sometimes blurry or 'off'.

 

The evidence seems to point towards some kind of autoimmune disorder, such as lupus, rheumatoid arthritis or thyroiditis.

 

I'm now looking into lectins in food and their apparent connection to immune suppression/disorders in some people, but the research is scant.  I'm going to eliminate high-lectin foods (grains, legumes, dairy and nightshades) for a week to see if this impacts the symptoms.

 

Has anyone ever experienced anything similar, or has any substantive information about the lectin connection?

 

Thanks so much and so nice to see this forum!

 

megan

My daughter whom is 9 complains of the exact same symptoms!  Everything you stated is the same with her.   She has been gluten free for 5 years.  She has Celiac disease.  She doesn’t even like to drive in a car because of her dizziness.  I would appreciate any information you find that helps you.  It is hard to see your 9 year old suffer with these symptoms.     Thanks!  Felissa 

[cyclinglady]

3 hours ago, FelissaML said:

My daughter whom is 9 complains of the exact same symptoms!  Everything you stated is the same with her.   She has been gluten free for 5 years.  She has Celiac disease.  She doesn’t even like to drive in a car because of her dizziness.  I would appreciate any information you find that helps you.  It is hard to see your 9 year old suffer with these symptoms.     Thanks!  Felissa 

Is her celiac disease in remission?  How are her antibodies?  I just read a story of a celiac teen who was getting sick again.  He went to see Dr. Fasano (celiac expert and PED GI).   The doctor asked the parents to step out of the room.  The teen confessed to eating pizza on a few dates.  He wanted to be normal.  

Not saying that this has happened to your daughter, but it would be helpful to know if her celiac disease is active or not. Then it is a bit easier to look for other causes especially since celiac disease is systemic and is like a chameleon where symptoms can change.  

[Beverley Ann Johnson]

On 7/7/2014 at 11:47 PM, houseofdavid said:

Hi all,

 

I am new to this forum and decided to post my current situation with two hopes: that others may have some acquired wisdom they can share, and to also help anyone else out there who may be struggling.

 

I have had chronic vertigo, inability to concentrate (foggy headedness), inflammation in the glands and inner ear, and sore throat for 17 months now. The symptoms ebb and flow, with some days being more tolerable and the flare-ups making me bedridden.

 

The symptoms began during the flu season and began with a flu-like illness that developed into the syndrome. I saw two general practitioners who were puzzled and sent me to an ENT.  The ENT diagnosed the vertigo as the type that occurs when the crystals in the inner ear get shaken up and said he 'didn't care' about the chronic sore throat or swollen glands. He sent me to a physical therapist who disagreed with his diagnosis and said the vertigo was likely due to neuritis, or inflammation of the nerve in the inner ear, which is thought to be caused by a viral infection. This is much more likely, but doesn't explain why I cant shake it, and there is no accepted cure for neuritis.

 

I have been gluten free for several years. (Prior to that, I was a vegetarian and ate massive amounts of wheat gluten daily and so developed Candidiasis (thrush), another saga that involved skeptical or hostile doctors and the necessity to do research and self-diagnosis.)

 

In the last two weeks I've also developed joint pain in the right hand and my vision is sometimes blurry or 'off'.

 

The evidence seems to point towards some kind of autoimmune disorder, such as lupus, rheumatoid arthritis or thyroiditis.

 

I'm now looking into lectins in food and their apparent connection to immune suppression/disorders in some people, but the research is scant.  I'm going to eliminate high-lectin foods (grains, legumes, dairy and nightshades) for a week to see if this impacts the symptoms.

 

Has anyone ever experienced anything similar, or has any substantive information about the lectin connection?

 

Thanks so much and so nice to see this forum!

 

megan

I know this post is old but I had constant vertigo and was told the same thing as you that it was crystals in the inner ear.  I found out that it was not.  My dizziness was caused by gluten and also the fact that vegetarians have low levels of B 12 which can cause dizziness and fatigue with brain fog.