Illness & Meniere’s

Living with Ménière’s is one thing. You know you may have days when you’ve no choice but to rest. Throw a cold, sinusitis or the flu into the mix and all bets are off. 

Being sick on top of Ménière’s makes you feel worse than if you had one or the other. I can deal with each of them separately, but together they make my head swim more than normal. 

I am trying to fight my sinuses and doing everything I normally do. Expectorant & sinus meds are on the agenda. Though they are helping me get rid of the mucus in my throat and glands, sadly it’s doing nothing for my MD. It seemed to have been getting better, but with this new bout of sinusitis my ears are full, tinnitus is louder and I am dizzy from just moving.

So I am resting as much as possible and taking the aforementioned medication and praying it passes soon. After all I have things to do. 

If it doesn’t pass soon I will go to the doctor, but I know the antibiotics are not good, nor do they always help. 

I hope you are spin free.

Love, Peace and Light! Rita

Escape From Reality

How do you escape from everything life throws at you?

Me? I read. Reading allows me to transcend time and space and even my own mundane life. I travel the world and even the universe through books. They are my own personal TARDIS. Yes, I am a Doctor Who Geek. I am a geek in so many ways, but this is my favorite fandom!

If the story draws me in I’ll read it. Sometimes the book covers catch my attention, sometimes it’s the title, while others it’s the book blurb. I am not limited to genre. I love them all. 

Sometimes I get lost in television series. Netflix is good for those times you just want to hibernate in your cave and unable to read for whatever reason.

Nature is another way to recharge my batteries, I feel so at peace when we go camping. It’s a good time to relax and read. Or enjoy views like this.

I cherish my husband who shares these moments with me. I’d be lost without him in these trying times. He helps me relax. Being both an extrovert and introvert requires a special kind of handling. On the one hand being social comes easily to me. On the other hand it drains me. So these times away replenishes my soul. 

Again I ask, what do you do to recover from what life throws at you? 

I hope you are spin free!

Love, Peace and Light! Rita

Teach Your Children Well

Yesterday I shared some personal information on this blog. I think it needed to be said, because things need to change. I have mostly blocked this stuff from my mind, but when women come forward with their accusations, it’s time to speak up. It’s time for change in the way we all think. 

We need to support everyone who says they’ve been attacked. We need to let them know it’s not their fault. It is not their shame... it was done to them, not by them. 

We, also, need to teach our boys & men that it’s not okay to grab, touch, have sex without the woman’s consent. It’s not okay! Women are not sexual objects for your enjoyment. Once men learn this and act like women are equals, maybe those who have been abused will be able to heal. 

So mommas and poppas teach your children to respect everyone. That we are all equal. Be a good role model for them. Teach them well! The Crosby, Stills and Nash song keeps repeating in my mind.

Love, Peace and Light! 

Rita

(This is what my blog yesterday was supposed to be about, but I guess I needed to share.)

Why I didn’t report & me too movement (Trigger Warning)

I am writing this post to help release the feelings I have had on this subject lately. There is a reason I was so despondent when the current president was elected and the current accusations are dredging it up all over again. I hope by posting this to not only release my residual feelings, but to help others. 

MSNBC reported that 1 in 6 American women have been raped. 70% of cases are unreported. 99% of perpetrators walk free.

If you are a woman and haven’t been harassed then you have been extremely lucky. I’d say most of us & some men too have been at least wolf whistled at and have foul language hurled at them. I walked quickly by and was called a bitch in response. I was 20 years old in college, but this wasn’t the first time.

Playing house with the neighbors and going into the closet with the oldest son is something I have blocked out mostly. I remember going in, but not what happened. 

Then there was the time I was invited to someone whom I was interested in and he shoved his penis in my mouth. I was in my early 30’s. 

Why didn’t I report? That is a good question... embarrassment, guilt and not wanting to deal with the accusations that I’d asked for it. 

I even forgot all about it, until these women came forward with their stories. I think if the people who did this to me were running for public office, I would speak up too. Just to make sure nothing like this happened to others. My silence may have cost others their innocence.

Another reason to not come forward is that instead of the men accused of rape being put on trial, it’s the women who are put on trial. Ie. she dresses too suggestively, she talks about sex, she went over willingly, etc. 

If I were to walk around naked it is not an invitation for someone to harass, molest or rape me. It’s ridiculous to say girls must cover up, because boys get distracted. Has it ever dawned on teaching boys about self control? If they cannot control their impulses, maybe they should be locked up. Really teach them right from wrong and that women are not sexual objects. 

And I am not easily offended. I talk about sex, I even enjoy sex, but that is my choice. You don’t have the right to shout obscenities at me, to grab my ass or to rape me.

Someone asked if your brother or husband was accused what would you say... I’d ask who, what, where, when and why? I really don’t know how I’d react because my husband is one of the best guys I know and so is my brother.

Unfortunately, the burden of proof lies with the women and shame or not knowing better has washed evidence away. There are many guilty people out there who have not been held accountable for reasons like I have stated. 

If all the information came to light, it could ruin careers. Is this fair? I ask was it fair this stuff keeps happening? Everyone who has suffered has carried it with them from that point on. It colors everything they do. A life sentence if you will... 

Think about it before you dismiss what has happened to someone just because it happened a long time ago. If the accused was really sorry they would have sought out their victims and apologized. Can people change? I believe so, but they haven’t changed if they deny and throw dispersions at their accusers. 

Love, Peace and Light! Rita

Understanding

Many of you know I talk a lot. (I want to write a lot as one word, but I know better. Maybe someday it’ll make it into the dictionary.) I often overshare. I have no secrets which in my book isn’t a bad thing. 

Reposting this pick, because I have balance issues and yet was able to hold the pose long enough for the picture

 Sometimes I speak to educate others. It’s hard to believe in this day and age of the internet that people still don’t understand invisible disabilities. So, I talk about mine. Not for sympathy, but in the hopes that they may learn and hopefully be more understanding of the next person the meet with an invisible disability.

We are all different and have our own cross to bare. Be slow to judge others. Even if you don’t believe them, keep your doubts to yourself. Ask them about it. Make yourself aware. Be a friend. 

Yes, it makes me angry when people say ignorant things like... “Why haven’t you had problems before?” The simple truth is I have. I am just as surprised that I had such a long remission. I’ve lived with this for about 20 years. I am now re-learning to live with it. 

This time around I am going to live my life. The last time, I ended up in bed, only coming out to visit family once in awhile. I will listen to my body and rest when I need to, but I am going to keep camping, cruising, and enjoying life.

That doesn’t mean that I’m not struggling. I may not even exhibit any outward signs of vertigo or dizziness. My balance is atrocious and I stumbled & tip all the time. For some reason most people don’t notice or choose to ignore it. 

I had a drop attack at a basketball game and a friend said she thought my feet got tangled. I was being extra careful and know my feet were solidly under me when I suddenly went down. I don’t know if this attack was Ménière’s related, because I have had them since I was 12 years old. This is something I will discuss with my ENT when I finally see her on October 1. 

I am watching The Greastest Showman. Besides being highly entertaining it shows people who are different. It also shows they have feelings like all of us. Just like the characters in the movie people with disabilities have feelings too. Most would rather you ask them about the disability instead of whispering and pointing at them. Why should people with invisible disabilities being any different?

When someone says they are disabled don’t dismiss it. Ask them questions. Some diseases have good days and they s is probably when you see them. I know people who need a wheelchair one day, but walk just fine the next. So, before discounting them, learn about them and there issues.

Understanding is all anyone asks. 

I hope you are spin free.

Love, Peace and Light! Rita

PS. I started out to write about something far different, but I guess now isn’t the time. The subject is important though and on my mind. #WhyIDidntReport #metoo

Balance Awareness Week Wraps Up

Wow, what an exciting week. I hope I gave you all a decent overview of Vestibular Diseases. Click here for more information. Despite having lots of balance issues myself, I was able to get out and about and even join in on the fun that my support group, Ménière’s Worldwide, set up for this week. 

We had to take our picture with a flamingo or stand on one leg like a flamingo. I managed both. Ralph snapped this before I tipped.Yes, I know this is the Hooters Owl.

We did other challenges like collecting 10 things that began with the letter B. We also had a flossing challenge. I did attempt it, though very bad at it. Here it is if you want to watch... Rita’s Flossing Attempt. 

That’s what I love about our group. We have fun, disseminate information and support each other in our disease and in our successes. We are a bit politically incorrect, without stepping over the line of discrimination, politics and religion. Those are taboo. If you want to join Ménière’s Worldwide click on the name. 

Sometimes it’s easy to lost in the quagmire of the disease or finding a diagnosis. It is important to have fun. Learn to laugh at yourself. Learn as much about your disease as you can, because doctors do not always know the answers. Get out even if you feel like staying in bed. Take time out when you need, but do not stop living. 

I have a cane that I use when I’m off balance. I can see a day that a walker or wheelchair might be necessary at times. Since I don’t intend to stop living. I will utilize whatever I need to maintain a quality of life.

I use blue light filtering glasses because lights can trigger my symptoms. 

I have a placard so I can park closer to buildings, since walking can be an issue. I don’t drive when I’m dizzy or having vertigo, but I am often a passenger. 

I carry my rescue meds when I’m out. I have a medical alert bracelet if I am by myself when an attack happens. I have only had full blown attacks upon waking, so I’m unlikely to have one out. When I have mini spins, I don’t drive. But with the unpredictability of Ménière’s, I thought the bracelet with Ralph’s number would be a good idea.

Take whatever steps you need to... but enjoy life.

I hope you are spin free.

Love, Peace and Light! Rita

Secondary Endolymphatic Hydrops

Wow that’s a mouthful. Secondary Endolymphatic Hydrops affects the endolymphatic fluid of the cochlea, vestibular apparatus or both. The exact cause is unknown, but believed to be caused by abnormalities in the quantity, composition, and/or pressure of the endolymph (the fluid within the endolymphatic sac, a compartment of the inner ear).

Endolymphatic hydrops may be either primary or secondary. Primary idiopathic endolymphatic hydrops (known as Ménière’s disease) occurs for no known reason. Secondary endolymphatic hydrops appears to occur in response to an event or underlying condition. For example, it can follow head trauma or ear surgery, and it can occur with other inner ear disorders, allergies, or systemic disorders (such as diabetes or autoimmune disorders).

Endolymphatic hydrops may be either primary or secondary. Primary idiopathic endolymphatic hydrops (known as Ménière’s disease) occurs for no known reason. Secondary endolymphatic hydrops appears to occur in response to an event or underlying condition. For example, it can follow head trauma or ear surgery, and it can occur with other inner ear disorders, allergies, or systemic disorders (such as diabetes or autoimmune disorders).

Endolymphatic hydrops may be either primary or secondary. Primary idiopathic endolymphatic hydrops (known as Ménière’s disease) occurs for no known reason. Secondary endolymphatic hydrops appears to occur in response to an event or underlying condition. For example, it can follow head trauma or ear surgery, and it can occur with other inner ear disorders, allergies, or systemic disorders (such as diabetes or autoimmune disorders).

Symptoms:

1.  pressure or fullness in the ears (aural fullness)
2. tinnitus (ringing or other noise in the ears)
3. hearing loss
4. dizziness
5. imbalance
   

Diagnosis is often based on the patient’s history, observation, symptoms and symptom patterns. New research has shown that MRI with contrast may show abnormalities that show endolymphatic hydrops, but may not distinguish between primary and secondary.

The treatment of secondary endolymphatic hydrops (SEH) is somewhat different. Since SEH is secondary to (that is, results from) an underlying disorder, the symptoms tend to be present more continuously, rather than occur­ring in spontaneous attacks. However, they are often less violent, and SEH may cause less damage to hearing and balance than does Ménière’s disease.

Treatment of SEH has five goals:

1. stabilize the body’s fluid and electrolyte levels
   
2. identify and treat the underlying condition that is driving the SEH
3. improve daily symptoms
4.  manage persistent symptoms and changes
5. maintain quality of life.

Treatment:

1. Hydrops diet regimen - Eating a balanced diet in moderate amounts at regular intervals—with meals and snacks of a consistent size, eaten at about the same time every day, without skipping meals or alternating tiny snacks with huge meals—helps the body’s fluid and electrolyte levels remain stable.
2. Minimize the use of salt & sugar- don’t add salt or sugar to food & avoid processed foods.
3. Diuretics may be prescribed. It’s important to drink lots of water when on them. You may need to use a potassium supplement.
4. Medication may be prescribed to help with dizziness, nausea or vomiting.
5. Maintaining normal weight, or losing any excess weight. When a person is overweight, the vestibular system must struggle to deal with a larger-than-normal and displaced center of gravity.
6. Avoiding aspirin in high doses, which can cause temporary tinnitus.
7. Avoiding ibuprofen and other NSAIDS (nonsteroidal anti-inflammatory drugs), which can have a direct effect on fluid balance and may increase symptoms in some SEH patients.
8. Stopping smoking. Smoking constricts the single, tiny artery that feeds the ear, thus depriving it of oxygen and nutrients.
9. Maintaining general health by getting adequate exercise and sleep, both can help with cardiovascular health to support the inner ear. Exercise can help the musculature needed for balance stay active.
10. Medication or surgery that destroys the problematic inner ear section may be used in tough cases. Types of surgery: Endolymphatic decompression and labyrinthectomy
11. SEH does not usually result in significant hearing loss. If it does occur, modern hearing aids and other assistive devices may be useful. In addition, tinnitus-masking devices can be used to help deal with annoying tinnitus.

I hope you are spin free!

Love, Peace and Light! Rita

 

Labryinthitis or Vestibular Neuritis

Day 5 of Balance Awareness Week- How is your balance?  This was hard for me to do, but Ralph snapped the picture at the right time. 

What is Labyrinthitis? Inflammation or infection of the inner ear. May be caused by an upper respiratory infection.
What causes Labyrinthitis?

1. respiratory illnesses, such as bronchitis
2. viral infections of the inner ear
3. stomach viruses
4. herpes viruses
5. bacterial infections, including bacterial middle ear infections
6. infectious organisms, such as the organism that causes Lyme disease

You may have an increased risk of getting Labyrinthitis:

1. smoke
2. drink large quantities of alcohol
3. have a history of allergies
4. are habitually fatigued
5. are under extreme stress
6. take some prescription medications
7. take over-the-counter medications (especially aspirin)

Symptoms:

1. dizziness
2. vertigo
3. loss of balance
4. nausea and vomiting
5. tinnitus, which is characterized by a ringing or buzzing in your ear
6. loss of hearing in the high-frequency range in one ear
7. difficulty focusing your eyes
8. In very rare cases, complications can include permanent hearing loss.

How is it diagnosed?
There aren’t any specific tests so your doctor will rule out other possible conditions.

• Brain or heart disease
• Head injury
• Side effects of prescription drugs or substances like alcohol, tobacco, or caffeine
• Stroke

Labyrinthitis can mimic other conditions. These conditions include:

1. Meniere's disease, which is an inner ear disorder
2. migraine
3. small stroke
4. brain hemorrhage, which is also known as “bleeding on the brain”
5. damage to the neck arteries
6. benign paroxysmal positional vertigo, which is an inner ear disorder
7. brain tumor

Tests to check for these conditions may include:

1. hearing tests
2. blood tests
3. a CT or MRI scan of your head to record images of your cranial structures
4. electroencephalogram (EEG), which is a brain wave test
5. electronystagmography (ENG), which is an eye movement test

Treatment:

1. Antiviral medications or steroids 
2. Medication to treat nausea or vertigo 
3. Exercise through vestibular therapy

It might take a few weeks to a month to recover, but most people recover completely. Though they may experience vertigo later on.
If it reoccurs it will be milder and your doctor may look at other causes.
I hope you are spin free!
Love, Peace and Light! Rita

Benign Paroxysmal Positional Vertigo (BPPV)

It is day 4 of Balance Awareness Week and we are going to talk about the most common cause of vertigo, Benign Paroxymal Positional Vertigo or BPPV for short.

Me posing with the flamingos which are the mascot for this week.

BPPV is caused when crystals in your ear canal move from there normal spot.

People who have BPPV get brief mild or severe attacks of vertigo. These episodes are hard to predict. Unlike some of the other causes of vertigo there is a test for BPPV called Dix-Hallpike maneuver. Your doctor will also look for abnormal eye movements and ask if you are experiencing a spinning sensation. 

The most common symptom:

1. Dizziness 
2. Spinning 
3. Blurred Vision
4. Lightheaded
5. Unsteadiness 
6. Headache
7. Loss of Balance
8. Nausea
9. Vomiting 
10. Malaise 

Your doctor may run other tests to rule out other causes of vertigo.

• Electronystagmography (ENG) or videonystagmography (VNG). The purpose of these tests is to detect abnormal eye movement. ENG (which uses electrodes) or VNG (which uses small cameras) can help determine if dizziness is due to inner ear disease by measuring involuntary eye movements while your head is placed in different positions or your balance organs are stimulated with water or air.
  
• Magnetic resonance imaging (MRI). This test uses a magnetic field and radio waves to create cross-sectional images of your head and body. Your doctor can use these images to identify and diagnose a range of conditions. MRI may be performed to rule out other possible causes of vertigo.
  

The good news is benign paroxysmal positional vertigo may go away on its own within a few weeks or months. But, to help relieve BPPV sooner, your doctor, audiologist or physical therapist may treat you with a series of movements known as the canalith repositioning procedure.

You can also do something called the Eppley Maneuver at home.

1. Sit down on a bed or a comfortable sofa
2. Turn your head 45 degrees to the side of the ear affected with vertigo.
3. Put a pillow behind you and lie back for 30 seconds so that the pillow is under your shoulders.
4. Turn your head 90 degrees to the opposite side, but make sure you don’t raise it. Remain in this position for 10 seconds.
5. Turn your body 90 degrees to the same side you turned your head, but make sure not to change the position of your head while doing so. Remain in this position for 30 seconds.
6. Start to slowly sit up and bring your head back to its normal position.

There is another treatment that you can also do at home called Semont-Toupet Maneuver.

1. Sit upright on a flat surface.
2. Place a pillow behind you and stretch your legs.
3. Slowly lie down and turn your body to the right side while your head is facing the left side and looking upward.
4. Change your position so that your body is turned to the left side while your head is facing the right side looking downward.
5. Return to your normal position with your body sitting straight up while your head is looking forwards.

Also, you can do simple exercises like head rotations. Avoid stress. Head massages can help.Get adequate sleep. Drink water and limit alcohol. Also, ginger and almonds might help in addition to watching your diet and limit your salt intake.

In rare cases surgery may be required.

I hope you are all spin free.

Love, Peace and Light! Rita

Vestibular Migraine

Simply put a vestibular migraine is vertigo associated migraine.

 It may also be called migraine-associated vertigo (MAV), migrainous vertigo, or migraine-related vestibulopathy.

Migraine is a nervous system disease. Stress and environmental factors may trigger a migraine. 

Symptoms:

1. Dizziness that lasts more than a few minutes
2. Nausea and vomiting
3. Balance problems
4. Extreme motion sensitivity -- feeling sick or dizzy when you move your head, eyes, or body
5. Feeling disoriented or confused
6. Feeling unsteady, like you’re in a rocking boat
7. Sensitivity to sound

Sometimes there is no pain in a Vestibular Migraine.

Other symptoms may include:

1. neck pain
2. discomfort turning, bending down, or looking up
3. feeling of pressure in the head or the ear
4. ringing in the ears known as tinnitus
5. partial or complete loss of vision
6. visual disturbances, such as flashing lights, spots, or blurring

Once again with so many vestibular and other chronic illnesses the doctors do not know the cause. 

Your doctor, usually a neurologist, will use your history to diagnose VM. 

1. You have migraines or had them in the past.
2. You have at least 5 episodes of vertigo that make you feel like you are spinning or moving. This isn’t the same as motion sickness or feeling faint.
3. These feelings last between 5 minutes to 72 hours.
4. Your symptoms are moderate to severe. That means they stop you from doing everyday tasks or they’re so bad you can't do anything at all.
5. At least half of the episodes happen with one of the following migraine symptoms:
6. A headache that has two of these characteristics: is one-sided, pulsing, moderate to severe, or gets worse with activity
7. Sensitivity to light or sound
8. Seeing shimmering or flashing lights in your vision (a migraine aura)

There is no cure but your doctor may prescribe medication to help ease the symptoms. 

• Triptans
• Vestibular suppressants 
• Traditional migraine medications

For more severe cases:

• Anti-seizure medications
• Blood pressure medications
• Tricyclic antidepressants 
• SSRIs or SNRIs

There are some devices that may give relief.

• Cefaly
• SpringTMS or eNeura sTMS
• gammaCore 

Again figuring out your triggers for the episodes might help some. Common triggers are chocolate, cheese and alcohol.

Tracking your diet may also help determine if your vertigo is related to migraine or another disease such as Ménière’s Disease. For instance a high salt diet can make things worse for MD, but not VM.

While I have migraines and vertigo, dizziness and balance issues I have not been diagnosed with VM. It is possible to have both Vestibular Migraine and Ménière’s Disease. 

Keeping track of your episodes will help your doctor determine your diagnosis.

I hope you are all spin free.

Love, Peace and Light! Rita

 #BAW2018 #BalanceAwareness #MenieresSociety #DefeatDizziness

Ménière’s Disease

What is Ménière’s Disease?

1. Bouts of Vertigo (room spinning)
   
2. Hearing loss
3. Tinnitus 

It’s the unpredictability of the attacks that makes the disease so hard. Usually there aren’t any symptoms (at least that others can see) between attacks. The tinnitus and hearing loss are major symptoms that people may not be noticeable to others.

Many with the disease fear going out, because of the unpredictability of an attack. Holding a conversation can be difficult in crowds or where there’s a lot of background noise. Because of this many people with MD don’t go out where they feel inadequate.

When I first learned I had the disease my prognosis was I would eventually go deaf and have no balance. Now after having spoken with over 900 others with the disease, I know that may not happen for many years or it could happen tomorrow.

Periods of remission are possible. The duration seems to differ for each individual. Mine lasted six years with only tinnitus and minor balance issues.

How is MD diagnosed? Mostly it’s a rule out other things such as a brain tumor or inner ear damage and your history. 

Typically, your doctor will perform a series of basic lab tests, a hearing test, and may consider an imaging study such as an MRI (brain scan) to rule out other causes for the symptoms.

1. Hearing test
   
2. Balance testing: VNG, Rotary tests and a few others.
3. Test to rule out other causes like MRI.

There is no cure for Ménière’s Disease. There are some things you can do that may help. Medication such as anti-nausea and motion sickness may help. Also diuretics are often prescribed to help with fluid build up in the ear.

Vestibular Therapy can help. And hearing aids are helping some patients. There is also invasive treatments such as steroid and gentamicin injections that help some find relief. Also surgery can be an option.

Still all this will not cure the disease. It will just help make it possible to enjoy life. I got one will continue to enrich my life through music, travel and having fun between episodes.

Love, Peace and Light! Rita

 #BAW2018 #BalanceAwareness #MenieresSociety #DefeatDizziness

Mind Over Body

When my symptoms first began, my late husband told me I just had to think positively and I could get better. I felt inadequate when I would still wake up dizzy or sore. (Ménière’s and Fibromyalgia were my biggest foes.)

It’s not a matter of mind over body.

The stress of not being able to think my way to good health made me worse. It wasn’t until I accepted that I had chronic health issues and began to learn what my triggers were that I managed to feel better. Even then my health issues popped up when I least expected. 

Stress is a major trigger for me in all my health issues. With meditation and exercise I learned to get it under control. However, as with everything you must keep up the practice. I haven’t been able to exercise because the vertigo was present daily. Though I can still meditate I often forget. 

Diet is an important part of managing my illnesses, especially since I have food allergies. And the food allergies were triggering the constant vertigo I had for months. Changing my diet eliminated the constant internal vertigo. 

Exercise is something that I need to get back to doing. Especially since I am losing weight the exercise will help continue that process. And a healthy body helps control all manners of illnesses. My doctor was not wrong when he told me to exercise. 

Identifying triggers is another way I can help to control the Ménière’s. Salt is a trigger for me, but only in that my tinnitus will increase in volume if I have too much. It doesn’t seem to trigger episodes of room spinning vertigo. Lights and sounds can trigger vertigo and migraines for me. Other than stress I haven’t figured out any other triggers.

My thoughtful husband bought me blue light filtering glasses which I wear everywhere. Shopping, movies, sporting events or anywhere that lights may trigger vertigo or migraine. I still have to close my eyes and turn my head for strobing or flashing lights. I carry earplugs with me in case noise causes my ears pain. They are handy in crowded places so I can block out background noise. And my cane folds up to fit in my back pack in case I need it. 

Pacing myself is helpful. When I push myself to do too much, I know I will pay for it for a couple of days after, especially with the Fibromyalgia.

Medication can help control the symptoms.

So though maintaining my health isn’t a simple matter of mind over body, using my mind to figure out what helps can. Unfortunately, in my two major complaints symptoms and triggers are different for everyone.

Vestibular Disorders

This is balance awareness week and I’m going to take some time discussing them. Since I have Ménière’s Disease this is the one that I speak about the most, but there are other types of inner ear dysfunctions. Too many for us to discuss in detail during the week. I have found some great information at vestibular.org. 

The most common vestibular disorders include benign paroxysmal positional vertigo (BPPV), labyrinthitis or vestibular neuritis, Ménière’s disease, and secondary endolymphatic hydrops. There are other things that account for dizziness including acoustic neuroma, migraine-associated vertigo, and mal de débarquement. Also complications from aging, autoimmune disorders, and allergies can cause vestibular issues.

Many of these present similar symptoms making it difficult to diagnose. Or more often than not there may be overlap between the types of vestibular issues and there causes. For instance I have migraines, an autoimmune disease and allergies which can exacerbate or contribute to my Ménière’s symptoms. 

During this week I will try to cover some of the basic symptoms of each disorder. You will find there is a lot of overlap.

Uncertainty

How Long Will This Keep Going On?

Though I changed the words, Van Morrison’s song is playing in my mind. Every time a mini-spin hits, I ask that question. I almost wish for a full blown episode that will last for a few hours, leave me as wobbly as a newborn foal for a couple of days. 

The face of MD between episodes of mini-spins. 

I woke up this morning to a mini-spin. And though I fought it becoming a full blown vertigo episode, I can’t help but wonder if it would be quicker to have one. This is day two of mini-spins. Day 2 of a full blown vertigo attack would just leave me exhausted. Instead I am paralyzed with fear that if I do anything that doesn’t involve my bed or recliner, I’ll fall. 

It’s not as if falling is that frightening, I mean I do it all the time. Sometimes through my own clumsiness, but sometimes totally out of the blue. I can be walking and down I go. Nothing tripping me, not my carelessness, nothing causing it. I used to think it was my ankle not doing it’s job. Now I think it’s a drop attack. Maybe not Ménière’s related, since I’ve had them since junior high. 

I haven’t fallen during these mini-spins, but I am becoming intimate with my walls and door jambs. While mini-spins are easier to navigate, they are more unsettling than the full on vertigo attack. At least with the latter you know you can’t do anything. 

Between mini-spins you think maybe I can just do this or that, but then the next wave hits when you least expect it. Oh and it drains you as if you were in the big one. I slept quite a bit during my attack yesterday. My muscles are aching. I still feel exhausted. 

I know this will pass, but after a bit of time with only being unbalanced, I was hoping it would continue. I was in remission for 6 years... I guess I expect the good days to continue. I will try to smile my way through this. Maybe it will convince my brain there is nothing wrong, but how do you convince your inner ear when it has constant tinnitus and it’s been screaming since yesterday. 

I can be thankful that while I have nausea, I rarely vomit. Unfortunately, I rarely lose my appetite either. Others have it much worse than me. 

I don’t know what stage I’m in... if the stages are truly what happens. As far as I can tell from our large group of MD warriors, nothing is certain with this disease. (Ménière’s Worldwide) We battle this disease filled with uncertainty everyday. Trying to live our lives, choosing what battles to fight and when we should go to war with our disease. Sometimes we loose, but we pick ourselves back up and try again. 

There is so much positivity that flows from the people in Ménière’s Worldwide that it encourages me to keep on going. Those around us may not get it, but the nearly 900 in the group gets it and it’s so heartening to know they do. Though I wish none of them had this disease or similar diseases. 

I am rambling so I’ll leave you now. Be spin free!

Love, Peace and Light! Rita

PS. With Balance Awareness week coming up, I may be posting more about it. September 16-20.

The Results Are In

The good news is no cancer. I had my follow up for my endoscopy yesterday. My esophagus and stomach are inflamed, which I knew. My ulcer is back or another formed in my esophagus, which doesn’t surprise me as I was throwing up so much. All that stomach acid is harsh. So, bland diet it is and through the holidays. Bleh.

Wheat and Cow’s milk are my worst allergies, so definitely no cheating. The others are less severe, but the doctor said to continue to avoid them. I was hoping that I could get some leeway. She said I was only tested for the most common allergies so if something I eat doesn’t agree with me, stop eating it too. 

It’s a shame since I know I have trouble digesting beef. I love beef... Maybe I’m allergic to the whole cow.

Chicken and fish will be my main stays until my next endoscopy in December. I feel better since I began my allergen free diet about a month ago. So, I may be on a healing path already.

There is a bright side to my new diet... I didn’t gain weight on the cruise. 

I usually gain about 3-5 ponds.)

Stay healthy my friends. I hope you are spin free.

Love, Peace and Light! Rita

Hola Hola Que Bola

Hola Hola Que Bola is a phrase we heard often onboard Carnival Paradise from author Heidi Siefkas   and then repeated by the Cuban people. It means what’s up or que pasa... Bola is a made up word and specific to the Cuban people.

The Cuban people have captured my heart. They are so happy. I think because they don’t have problems, but situations. Situations are easier to overcome than problems. And if it’s really bad you can have a mojito.

We had a situation while on our people to people tour several times. The first being that every time we we going to stop in old Havana it would start pouring. We just kept going. The second was lunch was not ready so we had happy hour of rum & coke. The third situation was a bit more work on our part in that we had to climb 5 flights since the elevator didn’t arrive, but then we had lunch and mojitos or beer. See if you don’t make it a problem it can be overcome.

The Cuban people have a roof over there heads, education, and even college. Our tour guide went to college. She had to work for the government for three years and then is free to do what she wants. She said she is going to continue working for the government and do translating on the side. 

The most surprising thing is that while they have homes,they are multi-generational. Grandparents, parents and kids and their spouses and their families all in a tiny apartment. They own their own homes/apartments though.

They have Frankenstein engines in their classic cars. Kept running anyway they can. Diesel is cheaper so many are converting to diesel. 

As you can tell they are a colorful people. Our tour guide said they use the bright colors because it makes them happy. And really isn’t that what life is all about? 

I intend to return to Cuba someday. I hope you get the chance to do so too.