Tag Archives: #menieres

And The World Spins Madly On

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Early yesterday the barometric pressure took a nosedive and my head went with it.   My head started to throb and the light was excruciating; I took meds and carried on…or I tried to.  I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup.  Then it was a sit in the chair and knit kind of day, and I was okay with that.

After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw.   I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo.  I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart.   He came and helped me to the bathroom and back to my chair.  The worst had not arrived…

As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad.  I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy.  (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds)  I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!

I tried so hard not to disturb Stuart.  He has to get up really early to go to work and I hate when I have to disrupt his sleep.  He stirred a few times and I admitted I was sick but told him to go back to sleep.  I knew I could handle it, at least I told myself that.  I did sleep some, on and off, all the while feeling like I was moving.  Every slight movement of my head caused the room to spin faster, and my stomach to lurch.  I was not doing well, but I was dealing with it.  I survived the night, and I didn’t vomit, that is a miracle.

Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down.  Now it’s all the other symptoms that go with vertigo that are still getting to me.  The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised.  It’s been a challenging day.

As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years.  It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years.  Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again.  I even bought a car a couple of weeks ago.  Now, I’m being reminded that this will always be with me.  I will never escape Meniere’s disease, and I’m scared.

The fear escalated through the night and all day today.  My thoughts keep running to the “what if”s.  What if this is a new stage and it’s worse?  What if I can’t drive and I just bought a car?  What if I need more help than is available now?  What if?????

Can you see me spiraling out of control?

Time for a reality break.  Yes, I have Meniere’s and I always will.  Yes, it is unpredictable.  Yes, it could get worse, or it could get better.  Nothing is certain.  Life is not as I expected, so I will change those expectations, or better yet, I won’t have any.  Now, it’s time for a deep breath and a good night’s sleep.  Tomorrow is a different day.

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Meniere’s Disease Update

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menieres-drunk-cartoon

cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

#HAWMC Day 19 Rough day? What do you do?

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Today is Day 19 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Everyone has tough days, but how do you pull yourself out of the rut?
Maybe you blog, repeat affirmations or listen to a favorite playlist.
Write about what tools, tips or practices you use to lift your spirits after a rough patch.

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image source pixaby

When I read this prompt I was reminded of a post I wrote a few years ago, I thought I’d link back to it now for your reading pleasure.  Living In The Moment  In this post you will find one of the main ways I deal with the rough days.

A little list of things I do to deal with a rough patch:

  • I do things that get me involved with others.  I reach out.  I text, email, blog, talk….
  • I do things that relax me.  I take a bath, a nap, read, watch movies and  mindless TV…
  • I do mindfulness exercises.  I focus on staying in this moment.  I remember that the past is over and the future is not written (when I’m having tough days I can get caught up in “how good things use to be” and “how bad things will always be”, neither of these things are true, focusing simply on the present can make it not as overwhelming). I meditate and do deep breathing exercises.
  • I remember to be grateful.  I write in my gratitude journal, I am sure remember I have many things to be grateful for.
  • During particularly rough times, such as a very bad vertigo attack, I chant.  I have a special chant I learned in a yoga class years ago that my husband and I chant together when I’m extremely sick with vertigo, this helps to calm me down. “Om bhur bhuvah svah tat savitur varenyam”
  • I have my go to books, and I seek out books on mindfulness.  I have books by Jon Kabat-Zinn, Thich Nhat Hanh, and others that I rely on, but the first book I reach for is How to Live Well with Chronic Pain and Illness, by Toni Bernhard.
  • One of the biggest things I need to do during a rough patch is to remember, it’s not my fault.  I’m often hardest on myself during a rough patch, so I try to practice self compassion during this time most of all.
  • During particularly rough patches I reach out to my therapist, remember, that’s what they are there for.

How do you get through a rough patch?  Any suggestions?

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

 

 

#HAWMC Day13 – Best Thing This Week

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Today is Day 13 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

What’s the best thing that happened to you this week?
Maybe you got great news or maybe ice cream was on sale-
write about it and relive it!

best-thing-button

image source click here

This week has been a challenge physically, and mentally.  It hasn’t been horrible, I just haven’t felt good.  I’ve been a bit wonky.  Feeling off  balance and having a hard time keeping myself upright.  The election has made me anxious and panicky.  As the week went on I started to feel a bit better.  Good thing too because I got good news this week that I would be going out of town on Sunday.  So today (Sunday) I’ll be visiting with friends.

It was so much fun planning the trip.  Finding out that both friends would be home and would have time for me.  I’ll see the first one in the early afternoon when I first get into town and the second will be cooking dinner for me.  This is the most exciting part of my week!  I get to see my good friend, her husband and son.  We’ll have lunch together and visit.  It’ll be grand.  Then off to have a friend cook for me and my husband, and I’m finally meeting her beau.  They’ve been dating for months now and I’m finally meeting him.  I’m so excited!

I will admit there is a little apprehension when I’m going to see other people.  What if I can’t hear them?  What if I get confused?  What if my head hurts too bad?  What if I have vertigo?

Today I will not allow the “What if’s” to sabotage me.  If something happens I’ll deal with it.  The friends I’m seeing are the most understanding people I know, so there is no pressure there.

The excitement of knowing the trip is coming has been with me all week.  As I’m writing this (yes, I’m writing this post a day early so I can go on my trip and not worry about writing it) I’m excited about seeing my friends and all the experiences I’ll have when I’m with them.  I’m so grateful for this time.

What has brought you happiness this week?  What are you grateful for?

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 12 – Dear Doc

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Today is Day 12 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to get real.  Write a letter to the best or worst healthcare professional you’ve seen. Don’t hold back.

writing-letter

image source click here

This letter is to the first doctor I saw for vertigo.

Dr. H,

When I first saw you I was filled with fear and longing to understand what was happening to me.  I had just been seen at the emergency room after 12 hours of vertigo,  accompanied with almost constant vomiting.  It was there that I first heard the mention of Meniere’s Disease.  I was told that I should see an ENT (Ear, Nose, and Throat doctor) to help determine the cause of my vertigo.  So I came to see you.

You talked to me and gave me a hearing test and told me that I had Meniere’s Disease.  You put me on a low salt diet and sent me home.  I trusted you.  Your staff was amazing.  Your nurse had the best bedside manner, she made up for your aloofness.  You were a busy doctor, I understood.

The vertigo continued to come back, over and over again.  I kept coming back to see you.  You continued to give me hearing tests.  Yes they showed that my hearing fluctuated and I was losing some of the low frequencies, common in Meniere’s Disease, but this is the only test you ran on me.  You said that putting tubes in the affected ear should help.  Again, I trusted you.  So I got a tube in my ear.  It seemed to work.

After a couple of months the vertigo came back.  The tube had come out.  You said I should have a tube put in that stays much longer, but it requires general anesthesia to have it done.  I had the tube put in my ear.   I had this done a number of times.  I’d have vertigo, it would be found that the tube came out, I’d get another tube.

After seven years of the merry-go-round of getting tubes the illness spread to the other ear.  So once again I went under to get tubes put in both ears.  This time the vertigo didn’t stop at all.  I was miserable.  I went back to see you.  Something had to be done.  You told me that you needed to send me to a different doctor because, you didn’t “know much about Meniere’s”.  How could you treat someone for SEVEN YEARS and not know much about the disease?  How could you even begin to diagnose someone if you know nothing about the disease?

When I found a different doctor, no I didn’t go to the one you recommended, I found my own.  I found out that tubes are not a treatment for Meniere’s.  It hasn’t been a treatment for many years.  You really didn’t have any idea what you were doing did you?

When I started to get the information together to file for disability I requested my files from you and found out that you never put a diagnosis of Meniere’s Disease in my files, you put in unknown Vestibular Illness.  How can you tell a patient she has a disease when you didn’t even put it in her files?  Is this even legal?

I’m sure my story is all too familiar among your patients, unfortunately many may not even know that you are treating them wrong.  I regret that I cannot stop you from telling anyone else that they have Meniere’s Disease.  You should not treat people with vertigo.  There are a number of things that could have been wrong with me that were not Meniere’s Disease, you just happened to be right.  You did not order any vestibular testing or an MRI.  You did not rule out any other vestibular disorders or a brain tumor.  When presented with a patient who has vertigo you should send them to a doctor who knows more about it immediately.  What you did to me is nothing short of neglect.

How can you play with people’s lives?  Is having a big business practice more important than the patient?

I need to thank you for teaching me that I know more about my health than any doctor.  I knew something wasn’t right when I was seeing you, I just didn’t know what.  I had a feeling there should have been more testing, but I trusted you.  I now know to never blindly trust a doctor.  Before you, I would never have thought to do a lot of research into my disease.  I would never have thought of firing my doctor.  But I fired you.

I left your office and didn’t go back.  Your office wrote me an email reminding me I hadn’t be in for a while and wanting me back. I wrote them back explaining my frustration with my treatment.  I never received a reply.  This is just more evidence that you think very little of your patients.

Please cease treating those who come to you with vertigo.  Immediately send those patients to a doctor who knows more about vestibular issues than you do.

Sincerely,

Wendy Holcombe

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.