My Vestibular Story

My Diagnoses

April 11th I got blood work and discovered my C-reactive protein and Sed Rate levels were very high (Inflammatory markers).

 

April 28th I woke up with a severely pinched nerve in the left side of my neck and lots of pain. 

 

Two days later I did more blood work and my levels were still high. I started recovering from my sinus infection. 

During this time, my best friend was scheduled for an induction and I wasn't going to let anything stop me from going. It was an incredible experience to say the least!

Soon after, I was referred to a Rheumatologist due to the high inflammatory levels,

 

May 9th I noticed ticking in my ear, fatigue, and was feeling a run down sick feeling once again. The next day I noticed one of my armpits felt swollen and tender which lasted five days. I also developed a sore throat. 

 April  2018 

 Just a week before the Vertigo 

On May 23, I drove myself to my primary doctor, but after this point I stopped driving. She said if it gets worse I will need to see a balance and vestibular therapist. She was right. I was advised to take allergy meds and meclizine if needed to see if any of that helped. At this appointment, she also completed a fibromyalgia test and confirmed 14/18 points.

My notes taken at the time

Taken back in 2019

My notes taken at the time

August 2018

 During the CAREN Study 

September - December 2018

In September I saw my Oto-neurologist. The DDx is listed as atypical peripheral vestibulopathy (APV), Gait difficulties, Tinnitus, and headaches. Continued Vestibular therapy, home exercises and a log as treatment. 

The pharmacogenomic Testing came back and I found out I had Heterozygous MTHFR Mutations C677T and A1298C.

In October I still had lots of symptoms.  I decided to see a holistic psychiatrist to look into medications and why I was having vestibular issues. At the time I was depressed. I was scared to start medication even though I believed in it. I just couldn’t take any more symptoms and side effects. 

 

So when I saw the psychiatrist, I felt so hopeful during the first appointment. She was speaking my language. I brought my huge binder with me of all test results and summaries. She was impressed. She ordered an Organic Acids Test, and Glyphosate from The Great Planes Laboratory. I was also advised I could start Trintellix if I wanted but we would explore other options as well. 

 

I was exercising using the beach body programs, but my body wasn’t conditioned for even going slow with the modifier and form awareness, so I was in lots of pain and ended up having to see a physical therapist. I had a hip impingement issue, but also an overall body issue I was treating. The plan was to strengthen though and this helped a lot.

 

By the end of November, I also saw a Naturopath and she ordered a GI MAP and

Blood work entailed the following:

  • Lipid Assessment, LDL-P, HDL-P, sDLD-P (NMR), ApoB, ApoA-1, Lp(a)-P (w/ASpoB), Sterols, Stanol, Omega-3 AND Omega-6 FA, Homocysteine
  • NT-proBNP, Gelectin-3

  • hs-CRP, Myeloperoxidase

  • Lp-PLA2, ADMA/SDMA,Fibrinogen

  • HbA1c (w/eAG), Glucose, Ferritin, Adiponectin, Insulin, Proinsulin, Free Fatty Acids

  • CoQ10, RBC Folate, Iron, Magnesium, Vitamin B6, B12, Vitamin D, Vitamin E

  • TSH (no Reflux) T3 free, T3 reverse, T4, T4 free, Anti-Tg, Anti-TPO

  • Estrone, Estradiol, Progesterone, Total Testosterone, DHEA-S

  • Cortisol, and Leptin

  • RF, Anti-CCP3 IgG and IgA, hs-CRP, ANA IFA+

  • ENA 11 Profile - dsDNA, Sm+, Scl-70+, chromatin+, Centromere, Histone+, RNA POL III+, Jo-1+, RNP+, SSA+, SSB+

 

HIGH RESULTS OF THE FOLLOWING: 

 

LDL-C     Non-HDL-C     Apo B     LDL-P     hs-CRP     Cortisol      Sitosterol

Dehydroepiandrosterone Sulfate (543 - high)      Insulin - Very high​

 

Intermediate Risk - Glucose     Leptin     Adiponectin     Homa-IT

 

Normal or Negative : : The ENA 11 Profile, ANA IFA panel,  RF, Anti- CCP3 IgG IgA (U)

GI-MAP Results

NOMRAL - Pathogens, Parasitic Pathogens, Viral Pathogens, H. Pylori, Phyla Microbiota, Potential Autoimmune triggers, Fungi/Yeast, Viruses, Worms, Digestion, GI markers, Inflammation calprotectin, Antibiotic Resistance Genes, Phenotypes.

 

ABNORMAL RESULTS - Secretory IgA low, Dientamoela fragilis high (all other parasites normal), Enterococcus app, and lactobacillus spp. low (needs probiotic).

 

I was so desperate for answers.  

 

I received the OAT and Glyphosate test results from the psychiatrist. This was confusing to me and I didn’t really get a thorough explanation of the results. 

OAT (Organic Acids Test) and Glyphosate Test Results

NOMRAL - Pathogens, Parasitic Pathogens, Viral Pathogens, H. Pylori, Phyla Microbiota, Potential Autoimmune triggers, Fungi/Yeast, Viruses, Worms, Digestion, GI markers, Inflammation calprotectin, Antibiotic Resistance Genes, Phenotypes.

 

ABNORMAL RESULTS - Secretory IgA low, Dientamoela fragilis high (all other parasites normal), Enterococcus app, and lactobacillus spp. low (needs probiotic).

When I saw my Oto-neurologist next, he referred me to a doctor to get a neuropsych evaluation, a sleep study, and an MRI for my back. I tested low on the MoCA cognitive test. I haven’t gone back to them since. I sort of gave up in a way. I was exhausted. Eventually though I plan to go back and follow up. 

2020

I started the year off by talking with Tony and my therapist about my goals for the year. I wrote down plan for the first time even if I don’t hit the goals. I wrote out what I needed to do to get there. 

 

In early January, I woke up with a terrible pinched nerve in my neck after a day of painting where my posture was not good. 

 

A few days later I had the longest episode of vertigo since 2018 when I woke up with it. This time the spinning lasted 12 hours. It was particularly bad when I was on my sides. I remember crying as I saw there. I just let it all out. This time though, I knew it would pass. I knew what this was so I didn’t have a complete breakdown. I still cried out of frustration though. I was also relieved in a way though. I saw a pattern this time. When I get pinched nerves in my neck, Vertigo also gets induced. 

 

By the end of January I was diagnosed with Cervicogenic Dizziness (Cervical Vertigo).

 

This made so much sense! Could this be related to my neck injury I had back in 2002? The pattern was clear. From this point on, my neck has been the area of treatment. Strengthening and posture work has been the key. 

 

As of March 1, I have been off birth control after being on it for 12 or so years or more. I have been needing to be off to see how my body adjusts and if this has any part in my over all health and function. For the past few years, I discussed getting off. This was so important to me. I felt like I was taking a step forward by stopping this medication. A step towards my health and maybe trying for family someday. 

 

It’s May now and almost two years of chronic vestibular symptoms.

 

I am still coping. It's in a more constructive way though. I am in a stage of managing, and accepting. I have learned to live and adapt more. I am recovering. I will probably always live with some symptoms. I am not cured. I don't know when I will be from some of this.

 

I had to throw out the idea of chronic illnesses stopping me from trying to have children. 

 

 I had to throw out the limitations, and voices 

 

"When I heal, I can try for children”

"If you're this chronically fatigued and ill, you can never handle kids”

"How can you have children when you don't really drive”

“Will people judge me more if I am participating in the world?”

 

 Instead, I have to stop and tell myself 

 

"I am healing and may not be fully healed but I have tools to cope if I am able to have children”

"I can live WITH an illness and have children even though it will be a challenge”

"I will find a way”

“I have adopted” 

“I am not healed, but I am okay and I can cope”

I am having to stop beating myself up emotionally and be aware of the pattern. I abused myself for years throughout my life. This just isn’t working for me anymore and never did.

 

Self compassion  is something I am strengthening. I won’t limit myself or my voice to keep others comfortable anymore. 

 

Changing my mindset and working on my confidence along with other tools has helped. 

The MRI for my neck and the CT in June for my temporal lobes turned out fairly normal. 

I do have some minor C5, 6 and 7 issues. 

"Normal results" is what I am use to hearing even though I am not. I am currently in Vestibular Rehabilitation again as I took a break during Covid. We are treating my neck more and my brain. 

My thoughts on WHY & root causes

I don't really know if this is truly from a virus that attacked my inner ear and caused damage to my left utricle. 

I suspect this is from neck issues and maybe from the head trauma I had back in 2002 and 2016 along with unhealthy posture and weakness.

Another theory is stress induced. I do know that one of the triggers for the symptoms being greater is the way my body responds to stress so stress management has been one of my top treatments. I believe stress and unhealthy mental patterns causes more intense flare ups. I do believe the way I handled stress was part of the root cause.

Cervicogenic Dizziness makes so much sense to me. 

Either way I do know it's complex, and stems from multiple angles.

My vestibular therapist believes right now the main issue is PPPD and VM with cervical issues causing flare ups in vertigo episodes and the heavier brain zapped days.

MY NEXT STEPS

Continue current treatments to keep strengthening. 

Blood work for heavy metals and toxins. 

Continue tapering off my antidepressant.

Adjusting my diet more and continue to get the insulin resistance under control.

While doing so, I will trust the process. 

Volunteering with VeDA as an Ambassador.

Continuing to build relationships within our vestibular community. 

I don’t have to have my health completely solved while moving forward in my life. 

Love

Ash

2018

Events right before Vestibular Issues

By the beginning of 2018, Chronic / Invisible mysterious illness symptoms were still in my life. 

 

I was still feeling fearful and resistant to exploring my symptoms and overall health. I had lots of resources from my therapist but was still exhausted and stubborn. I was fearful of how long the process would be. I was only making the process longer by being fearful and not acting on anything. 

 

If I was already exhausted, how was I suppose to dive into more appointments. In this big city, people drive horribly, and there’s a fast pace of life here that is too much for my system to handle. Driving was a draining task for me. My energy levels were depleted by driving anywhere really. I usually had to be extra cautious of people who don’t pay attention and are distracted. Anyway . . . 

 

I took the leap again and started Acupuncture per the recommendation by my therapist. I still see my acupuncturist/naturopath. He is great and truly cares. He knows my journey. The first session I had with him, I remember my gut getting a wake up call. I can’t describe it, but the feeling in my stomach was unlike anything. 

 

After this, a lot happened. If I thought life was a struggle already, I was in for a surprise. 

 

On March 4 I had another freak accident. I got my finger stuck in a an emersion blender (sounds worse than it was, and I got to keep my finger). I went to the ER and my finger was saved without surgery.

 

I got sick with a sinus infection five days later. Maybe stress induced from the trauma of the injury. I was placed on medication, but then relapsed in early April. I was advised to take a probiotic so I got a basic brand from the store. My doctor wanted to look into my inflammatory levels. I am so thankful she did. 

When Vertigo and Vestibular Issues started

On May 18th my life once again changed. 

 

I woke up with vertigo (full on spinning and dropping to the sides) and my body has never been the same. I was way off and this was new. I had vertigo a few times in my life, but bounced right back within 10 seconds. 


The next day I had ticking in my ear. I continued to deal with vertigo and an off feeling that was extreme. A few days later I saw the rheumatologist. He ran a lot of detailed tests that I hadn’t received before so I was happy about this.

Testing = Answers maybe! I started Flexeril for sleep issues and to relax my body. 

 May 19 : : The next day 

 May 22 : : In bed and OVER the vertigo! If only I knew this was just the beginning.  

Vertigo episodes in the beginning with Spinning, but now with constant symptoms below.

 

CONSTANT

  • Swaying

  • Bobble head

  • Unbalanced

  • Walking on a tight rope

  • Drunk feeling

  • Like I am floating away

  • Out of control feeling

  • Extremely hard to concentrate

  • I have to have my hands out or hold onto stuff for balance

  • Headache

  • Major Ear Pressure

 

SOMETIMES

  • Nausea

  • Anxiety most of the time heightened due to imbalance and low concentration)

  • Heart rate increase

  • Hearing Loss Moments

  • More Tinnitus than normal (ringing, pulsing, hearing loss, ticking)

 

Vertigo

  • Spinning

  • Tilting

  • Swaying

  • Unbalanced

  • Pulled in one direction

  • Nausea

  • Headache

  • Sweating

  • Ringing in the ears

On May 27 I went to the ER with Tony. I had enough of the vertigo after trying the Epley Manouver, Modified Epley, and a few other at home tricks I looked up. 

 

I was prescribed 25 MG of Meclizine and advised to do the Epley. The ticking and ringing was occurring in the left side of my ear.

  • Hot flashes. Ear pressure.

  • Ticking, high pitched, pulsing, loud noises both ears, ache ears. 

  • Feeling of wanting to clear my ears, and maybe inflammation. They just don’t feel right.

  • Not a spinning vertigo feeling anymore, but instead a swaying and constant feeling of being unbalanced.

 

Well maybe this was because of the pinched nerve in my neck. I was placed on a steroid and got an occipital nerve block. I tried  a chiropractor and got X rays and punches a neck pillow. 

 

By June 2, I was still having left side pains and numbness. My face was tingly and down my arm. We decided to go to the ER again. I had a CT scan done, but the results were normal and I was prescribed Valium and Prednisone. The doctors at the ER recommended I see a vestibular therapist on base.  

 

The next day Tony was taken to the ER from work. He was having chest pains, but all was okay. 

 

Did I mention at this time, we were one month away from going through the orders process. This means he would be seeing his choices for new orders for the military soon. This stress was on our minds also. 

 

By June 6, I saw a vestibular therapist. Of course the only way this treatment would be covered by insurance was through going to the base. I took the opportunity because I felt lucky enough to have the treatment be paid for. Insurance clearly doesn’t believe in vestibular therapy. 

This same day I also saw my ENT and got Ocipital Nerve Block injections in hopes that this would help. 

 

I continued to have tinnitus, vertigo, migraines, and a variety of symptoms as my neck was healing. I used the Valium as well per orders. 

 

We then went on a vacation we had planned the mountains so we decided to still go since he was driving. Tony was changing commands to go to a new training school in San Diego. It’s not often that family time and leave chits get approved in military life, so even though my health was up in the air, we went. 

 

By the end of June, I started a CAREN (Computer Assisted Rehabilitation Environment) study with my vestibular therapist at the NHRC which ended up being so amazing. 

I held on to the idea of being able to drive again and work, but I was not able to do either. I could have tried to go on disability but I was extremely overwhelmed and that was one more battle. Therefore, I did not apply for disability. 

 

I saw my rheumatologist and he diagnosed me with Trochanteric Bursitis and Hypermobility Syndrome and went over my Xray results for my Neck, Lumbar, Hips and knees. All normal. 

 

I continued to search for answers and had an appointment with the audiologist, which resulted in normal hearing and only elimination. I was referred to an Oto- Neurologist by my ENT. When I saw him, he prescribed me . . . 

 

  • Prednisone Pack 4 MG​​

  • Klonopin 0.5 MG – Take one half at 8 and the other half at 2

  • Valtrex 1 GM once per day

  • Omeprazole 20 MG once per day

He suspected I may have had a stroke or a tumor so I was ordered to get a brain MRI. He also put me in a chair with some recording goggles that would record any vertigo I had. Of course I was only swaying and feeling “vestibulary” and “off”, but no spinning vertigo.  I was diagnosed with APV, vestibular Neuritis, and utricle damage to the ear from a virus. 

July 2018

Into July I continued to have the following symptoms of Tinnitus 

 

  • Tinnitus – Deaf in right ear and then slow ringing that lasted minutes this time and this happened multiple times throughout the day. Experiencing constant ringing in the ear.

  • Ringing, pulsing, ticking, thumping.

 

The headaches and migraines (the felt painful kind for me anyway) continued along with a constant feeling of being unbalanced and off. I swayed and felt out of control of my body. The brain zap feeling and foggy feeling was terrible.. 

 

I saw a different ENT as well. 

 

Mid July I saw the Oto-neurologist for a VNG (Videonystagmography) and a VEMP and then again at 11 AM for a follow up. I got very sick and threw up during the testing from the air being blown into my ears.

By August 2, I stopped Klonopin per our plan as to not get addicted. For my sensitive body though it was too late. I started going through withdrawals. Symptoms increased.  I had to tough out the withdrawals for months, but in the meantime I constantly felt like I was in a severe state of brain fog and brain damage. 

 

I saw my primary doctor mid August to discuss everything and she ordered me Pharmacogenomics Testing which was based on my reaction to Klonopin. 

 

The rest of the month consisted of constant appointments with therapy, acupuncture, and vestibular therapy. I saw the eye doctor which helped rule out no issues of a stroke and my eyes were healthy. My oto-neurologist ordered a B12 and Folate workup. I also scored low on a cognitive test they ran. My MRI results were normal. Of course I was disappointed that I didn’t have an answer even though my brain looked healthy.

 

Having a family felt very unreachable after the vestibular issues. 

2019

Yay, another new year and no children, and no moving on in my life. Still sick, and not much progress really.  I didn’t know how much longer I could take. 

 

The results for my blood work came back from the naturopath. 

 

My hs-CRP level was high.

 

You know you’re chronically ill when you get excited about new testing and the results to see if you “won” an answer to your live your life again. For me, these results were a helpful lead to something. I hoped it was connected to the years of suffering but especially the vestibular issues.

 

A few days later after an intense emotional breakdown, I talked to my therapist and she encouraged me to try the antidepressant. At this point, it was time. I had tried for years to avoid medication, and loved that my therapist is more holistic, but she also understands the benefits if a medication is needed. In this case, I needed it. I didn’t want it, but needed it. 

 

I held myself to an expectation and goal that I could handle everything without medication.  I did more harm by resisting it in the end. 

 

So I started with 5 Mg of Trintellix (vortioxetine - an SSRI (selective serotonin reuptake inhibitor) and serotonin receptor modulator) every other day. I am so glad I did. I needed something. I couldn’t do it all on my own. Not with everything I was going through.

 

My MRI results showed 

L5-S1: Mild disc degeneration with 2 mm disc bulge. ​​

Mild bilateral facet arthropathy. 

Mild lateral recess stenosis bilaterally.

 

I saw my naturopath again, and she ordered more blood work. The results were ….

 

Fibrinogen (mg/dL) - Intermediate risk

Proinsulin (pmol/L) - High

Reverse T3, Myeloperoxidase, and Vitamin B - Normal

 

I was also trying to get into an endocrinologist at the time per my naturopaths orders. The test results showed I needed one. 

 

My health insurance is great and I can choose to go anywhere I want within network, but an endocrinologist was a different story, so I never did go see one. 

 

By the end of January, I had another episode of the spinning vertigo but it lasted about 5 seconds. I lost control of my vision and everything dropped. I remember when it happened I was listening to a friend talk. Many times, too much conversation is difficult especially during flare ups. I often take Tony with me in to appointments because the brain fog can be so intense that I need another ear even if I write notes. 

 

The next day, I cut gluten out of my diet and started reducing dairy. I LOVE dairy. 

 

In the beginning of February the antidepressant was bumped up to 10 mg every other day. However, this psychiatrist didn’t work out for me unfortunately, and I found a new one. 

 

In the meantime, I was taking Apex Energetics ClearVite-GL K95, Adaptocrine, and Trizomal glutathione as additional supplements. 

 

On February 22, I did the Sleep Study. No Sleep Apnea, but I was told I have insomnia. 

 

On March 5, I had a Neuropsych Evaluation. The results of this were a proper diagnosis of ADHD Inattentive Type. I was relieved about this actually. All my life, I had concentration issues. Even though I went to the appointment for the vestibular issues, this was a positive result. 

 

April passed and into May I was still in the same position with symptoms. We signed up for 24 hour fitness so I could keep strengthening my body since PT was ending. 

 

My diet changes seemed to pay off also because on June 2, I had a Creatinine 24 hour and Cortisol test and the results were in normal range!

 

In August I had some gluten. I was extremely fatigued for weeks after and soon after that I started getting sick with flu symptoms after eating something not gluten related. Stomach belching and nausea for a month and a half following.

 

By earlier September the Trintellix was in creased to 15 Mg. I was devastated though to find out that I would need to be on this for a year and in remission before tampering off if we wanted to have children and I was ready by then. It just felt like one more thing holding me back. But I was encouraged to trust in the process and see where it takes me. 

 

In mid September I started a Meditation Mindfulness Yoga Class. This was really the beginning of my new Yogi life. I’ve been in classes and practicing at home as well ever since. 

 

I also incorporated a Craniosacral Therapist to my treatments. I had Cranio done before with my acupuncturist as well. 

 

By October, even though I was having symptoms, I was doing better and accepting the symptoms as part of my life more. 

 

October 30, 2019 - Lab Report: CBC+Diff, CRP, Lipid Panel, Sed Rate, Hgb A1c, Vit B12 

 

HIGH - CRP & ESR

NORMAL - Cholesterol Panel, Insulin, Insulin Free, B12

 

In November I saw my psychiatrist and I was doing well enough to not see him until June 2020. 

©2020  ©ASH ALIGNED™

Love

Ash

DISCLAIMER

Information on this website is not intended to be used for medical diagnosis or treatment.

The information I provide on my website is strictly resource based and part of my experience only.