Hi All - started reading your comments the other day and wanted to share what I have found out so far just in case it helps. After all, that's usually why we're all going to this website, either for support, trying to figure out more of what's up and/or how to help ourselves, right? We are solution oriented ppl that are determined to find an answer! ;) . The first thing that comes to mind is that we must not give up hope. I have just started to listen to Tony Robbins b/c I was getting down. As he says, "no one can GIVE you your life back, you have to take it back," (from his YouTube video entitled "How to stop negative thoughts").
My background: sinus and ear infections all my life with some of the usual dizziness and tiredness with ear infections. Then in 2012 (age 32), I went to Jamaica for my honeymoon and got a stomach virus - came back and it wouldn't go away. Physician mistakenly prescribed antibiotics which made virus worse - more diarrhea and then throbbing of head and tinnitus started. I called in and they said to stop the medication. finally beat the stomach part of the virus but what I was left with was a floating light headness feeling and feeling also like someone was pushing me in a circle. I did also have some lightheadness before I went to Jamaica here and there from Feb - June 2012 but I don't think it was constant.
I have had all the usual fancy tests: MRI of brain and neck, VNG, hearing test - I can't remember but I think I tested positive for the hydrops and there is some hearing loss in the right ear and a little in the left. I went to Physical Therapy Solutions in Schaumburg, IL - the owner of the clinic worked with the famous DizzyDoc who operates in Chicago. All these physical therapists see all day is vertigo so they are really used to hearing and distinguising the symptoms (which can be hard to explain and hard to read). They treated me for my BPPV and it is almost gone. They can tell it's BPPV because they have special testing equipment (goggles, a way of looking into your eyes, etc) From what I can tell, the BPPV issue is more mechanical (crystal fell out) and can get treated by physical therapy (among other things). I have gone to them on and off - the BPPV they can usually treat in 10 weeks (which is the spinning part for me).
That is mostly gone and they are going to discharge me because the goggles test doesn't show positive anymore. However, I do still have to horrible floating feeling and lightheadness - that is what I want to kick - if I could kick that plus the fatigue, things would be pretty okay.
This has led me to identify that maybe the floating / lightheadness is not BPPV but rather something else (Meniere's, some virus that keeps coming back or other imbalance). (As you know, ppl can have more than one type of vertigo.) Salt is a trigger for lightheadedness but that might even be a 3rd type of lightheadedness. I do know that too much frecuent salt can trigger BPPV (knock the crystals out) so I don't mess with it really. In fact I have been trying to only eat bt 500 and 750 mg a day but that is not recommended.
My primary care physician got vertigo herself and then cured herself through a lot of ayurvedic medicine. This experience caused her to shift into Functional Medicine, which is where physicians focus more on diagnosis than just giving you a pill. She did a Functional Blood Chemistry Analysis test by Genova Diagnostics (which tests literally everything in your blood - Vit D levels, Vit B levels, Magnesium levels, you name it, she tests it). She also did a Hormone Test, Food Allergy Test and G.I. Effects Test all through the company Genova. These tests are barely covered by BCBS PPO insurance but I thought it was worth it. The blood test I was able to rock through my insurance and Quest so that is good. Her findings:
low magnesium (low Mg is common with ppl who have anxiety)
Vit D too high,
blood glucose levels borderline not so great,
cholesterol all good,
Ferretin (which includes Iron) is super low - in fact anemic but I never was before when i was tested - she explained to me that Iron is important b/c it helps the thyroid function (thyroid is essential for energy and also affects metabolism) by the way Splenda slows down thyroid she says. (She says my undersalting might be contributing to these levels changing)
Vit B12 also low
Hormone test: high amounts of estrogen found, testosterone on the lower end which indicates stress and means that cortisol levels are up. Cortisol also raise blood pressure. Even if you are a female, you need some testosterone as that is the "get up and go energy" in the morning. I contested that it is the most tiring in the morning - most lightheaded then or if I have been laying on couch and have to get up. Her big concern was how I was metabolizing estrogen - sometimes broccoli extract can help metabolize estrogen better but it raises blood pressure sometimes too.
We are going to follow up with more tests but for now she has recommended a good probiotic, Ashwaganda (Indian Ginsing), and new vitamin supplements which I can give you names if you want them.
(who knows whether these are low due to years of vertigo or as cause but either way they have to be balanced out)
She also explained that vertigo has an autoimmune component as you probably have been reading. Ladies, the week before your period is a low immune time so boost up with vitamins that week to try to avoid getting colds, maybe week after too? She put me on immune boosting diet: gluten free, low sugar, low dairy, low salt. Pretty much paleo plus low salt for all intensive purposes. also of course, no alcohol, no or little caffeine, dark chocolate triggers BPPV in some ppl too. not a great party diet but you lose a lot of weight and feel a little bit better just being on it.
We still looking into these symptoms that come every month: Diarrhea, sore throat, loss of sleep, more lightheaded dizzy that normal - I take echinacea, vitamin C and even VS-C Chinese medicine immune booster specically for virals to get rid of it and then it comes back next month. (Warning though VS-C can mess up your sleep b/c there is something in there that stimulates adrenal gland - either dandelion root or black licorice i think?)
I am also fascinated by the findings about oral and/or intranasal Betahistamine (a treatment for supressing Meniere's symptoms) - not currently avail in U.S. but in 80 other countries and has been used for years.
Lastly, I made a list of all the medical surgeries, problems etc that occurred leading up to the vertigo to see if it sheds any light. I know I could make myself crazy but it's worth a shot. For example, i had some issues with my vocal chords in 2004-2005 and one of my lymph nodes swelled up (now a lump on neck) - never went away - the doctor took out my adenoids as he said they were swollen but lymph is still swollen. My acupuncturist has a theory that the virus might be living in there and come out each time it senses a drop in immune system to give me that "dizzy feeling." I also grind my teeth a lot and do notice i get migraines and some dizziness and headaches with that - (thanks to whoever posted about their TMJ - this was a great thing i had not thought of!) I was also in a few car accidents that injured my neck so I get dizziness if I have bad neck posture for a while. My theory is that i f I attack this from many fronts i will get better.
Anyway, this is my journey - i'm in the process of learning more. If i find out mroe I will type back - sorry i'm so long winded but I know you are searching like I am so I wanted to put everything down in case any of it helps at all.