INTERVIEW FOR UNIVERSITY OF MICHIGAN HOSPITAL

I was contacted by Angela Selar to conduct an interview regarding Meniere’s Disease/Vestibular Disorders and patient protocol. The purpose of the interview was to assist her by contributing to her research and presentation to the medical specialist at Michigan State University Hospital. I must say I was truly honored by her request. She is constructing a PowerPoint presentation to provide to that regent board for Menieres protocol. She has been working with the head of research for the hospital in an effect to truly raise awareness with the medical professionals. Her goal is to have her work be an instrument to educate doctors on the real struggles, concerns, and patient based care for better protocol of Meniere’s patients. Angela has a background in teaching and is a warrior herself. This has helped her tremendously in her journey.

Angela: First, what type of doctor diagnosed you; a PCP or an ENT? How long did it take to get a proper diagnosis?

Gina Marie: ENT. We can not clarify when. Reason being is that I was diagnosed in May 2001 with an inner ear infection. I was on a steroid and antibiotics. In June, I had my first experience with tinnitus and vertigo. Thinking I was misdiagnosed, I saw another ENT. That ENT diagnosed me in June and a second opinion with a third ENT confirmed Menieres but stated, I may have very well had it with Inner Ear Infection. Final answer would be July 2001. I was fortunate. My ENTs in this area have knowledge of the disease so unlike other warriors, it was 3 months. Most warriors go years misdiagnosed or with no diagnosis at all.

Angela: When did your first episode happen? What age? Have you always had these symptoms?

Gina Marie: June of 2001. I was feeling better from the inner ear infection pain but, still felt something was wrong. I was tired all the time (fatugue), having trouble focusing (brain fog) and a slight noise I couldn’t explain (tinnitus) in the left ear. One day in June I started laughing at a joke someone told and tilted my head back a bit. The vertigo hit so fast and so hard that I will never forget the fear I felt. Most MD warriors never forget the first time. I was 24. I did not have MD symptoms before May 2001 possible inner ear infection. However, I did have chronic ear infections for most my childhood years. They stopped around age 13.

Angela: Thank you for being so detailed.

Gina Marie: You’re welcome. You are my first interview and I’m honored. I have several podcast invites waiting but, I took you first. (hugs indicated)

Angela: Awe thanks! Ok, I know your time is valuable. 3 Chief health complaints with meniere’s? Or 5.

Gina Marie: I don’t fully understand the question.

Angela: List in order from 1 to 5 these symptoms

vertigo nausea
Fatigue
brain fog
anxiety
Pain
Other…

… as chief complaints. 1 being the worst. What aspects of this disease are worse for you?

Gina Marie: For me, I believe it is different than most warriors:
1. Head Pressure
2. Anxiety while driving
3. Unbalanced/Dizziness
4. Fatigue/exhaustion
5. Violent, quick vertigo attacks

Angela: Tubes?

Gina Marie: Summer 2004. Unsuccessful.

Angela: Surgery? Shunt decompression?

Gina Marie: I am not a candidate. I was diagnosed bilateral.

Angela: (Indicates thumbs up) That was my next question. {laughs out loud} But, you knew that anyway.

Gina Marie: Yes, I did. {Laughs}

Angela: Barometer weather changes bother you?

Gina Marie: Yes. Barometer weather changes and emotional stress are my biggest triggers. They are also least talked about, which is concerning.

Angela: Yes…yes…yes!! I would like to change THAT. As well as other things, so speak up. Tell me what you think is important. We have an in dear, use it!!!!

Angela: Do you track the weather and barometric pressure to predict when you are going to feel well?

Gina Marie: No. Ain’t nobody got time for that! (Laughs at my own sarcasm). However, newly diagnosed should! They should also keep a diary and start folders for all copies of test results and doctor’s information. I stopped in 2010 after 5 expandables!

Gina Marie: Going back, I want to state a few concerns.

Angela: Please, give me your input. What doctors want from patients…logs!!!!

Gina Marie: I am concerned about the information put out on the Internet. The triggers always listed are alcohol, smoking, caffeine, salt. None are my triggers unless already flared. Why must new warriors scroll so far and have to search so deep for these:
Weather changes
Emotional Stress
Allergies

Also, one third of us are autoimmune deficient. Why aren’t doctors aware enough of this fact so when warriors get unrelated symptoms, they know they could also get other diseases like Fybro, Crohns, MS?

Why do you never see Chiropractor suggestions when it’s proven in most cases, Upper Cervical Adjustments can give relief?

MAIN CONCERN: why are warriors never given, that I know of, hope for a quality of life! Suggest something! Facebook support groups, therapist, life coaches, something! Do you realize people have committed suicide?

Or ME, Gina Marie. Just going to throw that out there. {laughs}

Angela: You totally nailed every bit of my concern and yes, I too have been to that point. I think a great many of us have been to that point.

I’m adding suicide to my feelings card slide. You helped me complete my slide! {smiles} Thank you.

Angela: Do you wear glasses are contacts?Do you get nystagmus?

Gina Marie: I do not wear classes. No, I do not have Nystagmus however, I do have another vestibular order, PPPD. I also have Iritis.

On a side note, I also have Fybro, Crohns, Sacriolitis, survived melanoma 2x and 6mm Lipoma in center of brain.

Angela: Feel free to add points on any of these note slides. (shows picture of her personal notes)

Gina Marie: Feelings: despair and worthlessness should be added to your diagram.

Angela: I see the pppd is a newly defined vestibular diagnosis. I will do some reading.

Angela: You definitely have a world of hurt going on there girl!

Gina Marie: That’s okay. It makes me fight harder. I know exactly why I have all these issues.

Angela: Bad gut? Perfect storm? (Credits Dr. Neil Cherian Cleveland Clinic-Perfect Storm)

Gina Marie: No. {laughs} Although the Brain Gut Axis is connected to everything, it’s not my answer. If I didn’t live it myself; I couldn’t be helping 2.6k people global learn how to deal with it. (Is speaking of Meniere’s and Vertigo Without Borders. A private Facebook support group)

Angela: Yup! Perfectly stated. In some respects, I do feel like with this that there are some gifts given. Like appreciation, love, happiness, hope, and knowledge. Okay, back to the next question. Have you been diagnosed with vestibular migraine? Oh, and totally agree with mind gut connect.

Gina Marie: No I have not. I was told my migraines are connected to my PPPD and fall under vestibular category.

Angela: Cervical c1-c4 issue?

Gina Marie: Car accident. Unrelated. However, adjustments help my MD greatly.

Angela: How long ago? Before or after age 24?

Gina Marie: Accident was at age 21.

Angela: You know that’s connected to your Menieres?

Gina Marie: For some, yes, it is connected. Not in my case.

Angela: Tinnitus? 24/7? Loud during attacks? Comes and goes with the weather?

Gina Marie: My tinnitus is constant but at times for no known reason, can sound like an orchestra. Flare ups usually follow after.

Gina Marie: Now I have a question. Why did you pick me for this interview?

Angela: Not to sound weird, but I find you intriguing. I like your personality. You have a good handle on your symptoms. You have a good knowledge base. You also run a bunch of websites (sic) about vestibular disorders.

Gina Marie: I thank you for the opportunity. I am truly honored.

End Interview.

The purpose of publishing this interview is to also help warriors battling everywhere. Education and information is necessary for every warrior. Be well.

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