Time for “Us”

wendy-and-stuart-anniversary-12

This past Saturday was our 12th anniversary.  With my husband being my caregiver it is hard to find days where we can find time for just us without my illnesses playing a major part.  Saturday was one of those rare days.

Recently I’ve been feeling pretty darn good.  I have my days of not feeling well, my balance will be way off, and I’ll topple a lot, but for the most part I haven’t had any major vertigo attacks.  That’s huge for me.  I had a few days last week where I just didn’t feel good.  I was afraid I wouldn’t be able to spend our anniversary out of my recliner.  But I was surprised.  I woke up feeling good, so we headed out for a day of adventure.

We had a few plans for the day.  Stuart asked me what I wanted to eat on our special day and I wanted crab legs.  So we found this little restaurant that is on a small lake.  I love being close to water.  I was such a happy girl when we were sitting there on the water I teared up.  After our wonderful lunch we walked around the lake and watched the ducks.  We took pictures and just enjoyed ourselves.  We then went out of frozen yogurt.  The whole day we flirted like teenagers.  It was such a good day, but it wasn’t over.

We stayed in a hotel for the night.  It had a big whirlpool tub, and was in the ritzy part of town.  We decided not to go out for dinner we instead went to Whole Foods and loaded up on the Salad bar and went back to our room.  That may not sound romantic but it was so nice to just curl up in bed with my hubby eating salad.  🙂

It was a very romantic day.  We had planned to do more on Sunday but we were both exhausted from our anniversary celebration.  We came home and just vegged.  I slept sooo much.  On Monday I was still paying for our little adventure and felt like I was catching a cold, but by Tuesday I was feeling well again.  Which was great timing as Stuart had Tuesday off and we decided to go back to the boardwalk and just walk around and watch the ducks.  We had ice cream outside enjoying the beautiful weather.  It was a very relaxing afternoon.  Sometimes even though I know I’ll pay the price later the price is worth it.

It is so very important to take the time to spend as much “us” time with your significant other as you can.  My husband is my caregiver.  Even when I’m too sick for days like Saturday (and Tuesday), we try to take some time for us.  We may curl up and watch a movie together, or have a special dinner, just sit and talk…anything that makes things special.  One big thing we do a lot is flirt with each other a lot.  I am not able to follow through on a lot of my overtures but it doesn’t matter, he knows I want to.  That is what is important.  It’s important that even though we can’t be as intimate as we’d like as often as we’d like that we let each other know we’d like to, but it’s okay that we don’t.  It’s okay that we just cuddle, that we are with each other, that we are so in love that not being able to have sex as much as we’d like isn’t going to come between us.  And it makes those special nights in a hotel all the more special. 😉

 

Thoughts on Migraine Hypersensitivity

Thoughts on migraine hypersensitivity

I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.

Thoughts on Migraine Hypersensitivity By On July 18, 2016

“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”

to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/

Stress should be a 4 letter word

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Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse…  Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.”  I can’t tell you how many times I’ve heard this.

The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time.  I’m sure you are wondering, “What has been going on in Wendy’s life?”  Well let me tell ya!

This may not be in order, I’m just going to get it all out.  We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.

I’m wondering if my migraines are worse because of the stress?  My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now.  (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.)  I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud.  Some days my balance is worse than usual.  My emotional state is not well.  I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that).  My anxiety is very high.  I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue)  I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over.  I can’t relax; I can’t give myself a break; I’m not being kind to myself.  I’m just a mess.

I’ve been having a very rough time.  This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years.  I haven’t had a bad attack in almost 2 months.  This is surprising because it normally gets worse when I’m under a lot of stress.  However, It is often much better during the summer.  I know I would be feeling even worse if I was having vertigo as often as I normally do.  But I can’t stop having profound fear that it will get worse any moment.  I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.

I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.

When we are under stress it is imperative that we practice self-care.

Things I plan to do to increase my self-care:

  • Be sure to see my therapist and be open and honest during appointments.
  • Give myself a break.  This is more easily said than done, but I need to really make a conscious effort to do so.  When I have negative thoughts or feelings I want to start being more gentle with myself.
  • Meditate more.
  • Take more baths.
  • Watch funnier TV shows and/or movies.
  • Read funny or inspirational books.
  • Cuddle with my hubby.
  • Cuddle with Max (the cat) and Kiki (the little dog).
  • Eat healthier.
  • Do as much as my health will allow that makes me happy.
  • Be creative.
  • Stay in touch with those who love and nurture me.
  • Try to get outside more.
  • Keep up a gratitude list every day.
  • Laugh
  • Sing Silly Songs
  • Dance
  • Give my body 10 minutes of mindful attention.
  • Take a nap.
  • Take Deep Breaths
  • Get Positive Feedback (ask 3 friends what they love about me)
  • Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
  • Drink water (I’ve been drinking soda recently, something I haven’t done in years)

 

How do you take care of yourself?  Any self-care suggestions?  I’d love to hear them!

 

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To My Husband

hearts color copy2Everyday He Loves Me

He holds my hair as my world spins

leaving me a wretched mess.

He brings me food

washes my body

cares for our home

He holds me

comforts me

helps me fight my battles.

He kisses me

caresses me

loves every part of me

To him I am no burden

He loves me.

Everyday He Loves Me.

He watches me get my hopes up

and holds me when they fall.

The words are nice to hear,

but easy to say.

Every day, he shows he loves me.

How can I write a tribute to a man who has given me so much?

The words seem to lose their potency after leaving my heart.

How do I express how much I love him?

My heart swells with emotions and words that will not come forth.

This man who shows his love each and every day.

Sometimes my Caregiver,

Often my Lover,

Always my Champion,

Forever my Hero,

My Husband,

My Friend.

I love you more than words can say.

Stress and 12 Ways To Cope With It.

Recently I’ve been feeling pretty sick.  Having vertigo regularly and having migraines daily again is taking a toll on me.

The stress in my life has increased significantly and “chronic stress has a significant effect on the immune system that ultimately manifest an illness.” (Mohd. Razali Salleh 2008)  I don’t know how many doctors have told me that I need to control my stress.  Unfortunately, that is much easier said than done.

Stress comes in all shapes and sizes.  We have major things that cause stress, like someone close to us dying, or being diagnosed with a chronic illness. We have little things that cause stress, like a traffic jam or being late for an appointment.  We even have stress from good things in our life, like moving into a nicer home, or having a baby.  Every moment of stress can cause havoc on our health.  Chronic stress is caused more by the big things, the things that don’t just go away, but the little things can build up and be “the straw the broke the camels back”.

In mid April we moved from this a tiny little duplex that I felt very uncomfortable in to a larger house with a beautiful backyard.  This relieved one huge bad stressor on me and created a new happy stressor, but a stressor none the less.  It has been 2 months since we’ve been in this house and we still aren’t settled in, this causes me a lot of stress because I know if I was not sick, this would not be the case.

At the beginning of May we had a friend move in.  Someone who is going to be helping us out and we are hopefully going to be helping him out.  No matter how smoothly this move-in was, no matter how much we all love each other, no matter how good the situation will be, it has caused stress.  Suddenly I have someone else in my home and I’m not used to that.  I’m not used to people seeing me sick.  I haven’t been around many people at all for the past few years and suddenly there is someone living with me.  I’m not used to sharing my space with anyone other than Stuart.  This has caused a huge amount of stress.  It’s unintentional, I didn’t expect it, and I’m sure it will ease, but right now it’s there.

My father’s health is declining.  He lives over 3 hours from me.  I can’t just jump in the car and go see him. I can’t spend this precious time with him.  I can’t help care for him.  I can’t help my sister.  About the only thing I can do is give my sister encouragement.  I can text her and listen.  That isn’t real help and It breaks my heart.  The guilt is overwhelming, so is the stress.  This is the first time since I stopped driving that is has caused me such anguish.  I know even if I could drive I’m not well enough to care for someone who is ill, and I’m feeling guilty about that too.  Guilt is a huge stressor.

Of course, the fact that I’ve been sicker is a major stressor too.  A huge Catch-22 huh?

A little fairy, something I created. Creating is a great way to relieve stress.
A little fairy, something I created. Creating is a great way to relieve stress.

What can we do to reduce the effects of stress?  Well there are a few things, many of which are hard to remember when you are in the throws of being sick.  However, there are things I try to do, they include:

  • Meditate:  I usually use guided meditations, there are a lot of apps out there to help you with this, and you can find many of YouTube.  There are different guided meditations that help with different things.  I often do the body scan meditation, I’m so used to this one I can do it without the aid of a guide.  You simply focus on a part of your body, I start with my feet, and move on throughout the body paying attention to what each part is saying.  Don’t judge, and don’t worry about doing anything, relax into it if you can, but mainly just note it and move on.  For each part really pay attention.  For example, right now as I focus on my feet I notice my toes are a bit chilly, my heals are pressing into the floor, an old ankle injury is causing a little bit of pain, but nothing that should concern me; I’ll stay here for just a bit to see if there is anything more I need to pay attention to, then I’ll move on to my calves.  For some people this can be uncomfortable, getting in touch with their body can bring back repressed memories, be aware of this and take care of yourself accordingly.   This is just one example of a meditation I often do, there are many, feel free to practice this any way you feel comfortable.
  • Deep Breathing:  This is pretty simple but can be a great stress reliever.  Simply stop and focus on your breathing.  Put your hand on your belly and feel the breath fill up your abdomen and then go out.  Do this for about 5 minutes, or just take a few deep breaths when you need and carry on.  I find this very cleansing.
  • Some me time:  Find time just for yourself.  I take a hot bath with Epsom salts and sometimes candles.  It’s a me time.  Some people are not comfortable with this, if it isn’t for you, don’t do it.  See if you can find something that is just for you that you consider self care.  Paint your nails, put lotion on your feet, have a nice cup of tea …. these are all things that I like to do, find your special thing.
  • Stay in the moment:  When we are under a lot of stress it’s easy to build things up in your mind about how bad things are going to continue to be.  Stop and try to focus on this moment.  The future hasn’t been written yet, things will never stay the same.  When I’m having a vertigo attack I try hard to stay in that moment.  It’s a rough moment sometimes, but I know it will end.  I can deal with anything for a moment.  I wrote a whole post about that, Living In This Moment.
  • Bitch:  I don’t mean to wallow in your misfortune, but reach out to someone you trust and just let it all out.  Maybe get some advice.  I hold things in way too much so, I feel better when I talk to a friend and just let it go.  I have a good friend who never judges and gives great advice, sometimes I even take it.  🙂
  • Exercise:  This one is really tough for some of us.  It’s very tough for me.  However, the release of endorphins when you exercise will make you feel better.  I try to do stretches, and walk as much as I can.  Don’t let it stress you out if you can’t do this, I often can’t, just do what you can, doing something good for ourselves makes us feel better.
  • Eat Well:  Again, doing something good for ourselves makes us feel better.  When I’m under a lot of stress I often binge eat.  I crave sweets and I’m literally hungry way more often…like all the time.  I’m trying hard to munch on things that are good for me.  When I do this I feel better about myself.  When I give in and eat a lot of junk, I get even more stressed out.
  • Laugh:  How can you feel stress when you are laughing?  Watch a funny movie.  Read a funny book.  Play.  I play with my dog, she always makes me laugh.  My husband often makes me laugh too.  Laughter has really saved me a number of times.  I have been spiraling into a deep depression, but finding things to laugh about helps.
  • Listen to Music:  I can’t do this one because a lot of music sounds weird to me since I got my cochlear implants, however music can soothe your soul.  Just lay back and turn on some tunes.  Listen to relaxing tunes to calm down, peppy tunes to help you get moving, happy tunes to make you smile.  Music can melt stress away.  (My husband and I often sing out loud and make up silly songs, this makes me laugh.  I’ll also hum to calm myself.  So even though I can’t hear music it is a big part of my life.)
  • Create:  Write, paint, draw, color….do anything that gets your creative juices flowing.  When you get really involved in creating it can produce the same positive effects that meditation can.
  • Have sex:  Perhaps a little Too Munch Information here, but I feel it’s worth a mention. Having sex, talk about an endorphin release!  Not only does sex release endorphins it makes us feel close and secure in our relationship.  The feelings that are released during sex can be a great stress reliever.  (masturbating can be very releasing too)
  • Be Grateful:  When we stop and take note of the things we are grateful for instead of focusing on the things that are going wrong it can be very cathartic.  Sometimes you may feel you have nothing to be grateful for, but we all do.  Chances are if you are reading this you don’t live in a war-torn country, you have a safe place to live, you have enough food to eat, clean running water….  We take so many things for granted, but we have so many things to be grateful for, take a moment, step back, and think about things you are grateful for.  I try to list 3 good things every day.  3 things I’m grateful for.  You may find this practice very helpful too.

How do you handle stress?  Any suggestions for me and others?

I admit when I’m under a lot of stress I have a hard time implementing my stress relieving techniques, but just sitting here listing them makes me realize that I have ways to help myself and it has given me the incentive to get busy and try more of them.

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Why can’t every day be like today?

Happy colored 10 10
drawing by me.

Today I woke up and said, “I feel great, let’s run around the block!”

Today was my 3rd day being on steroids.  I couldn’t sleep much last night, but I don’t feel it today.  I feel normal.  I feel like a normal person.  The migraines are gone.  The vertigo is gone.  The pain in my neck is much less.  Even the pain in my knee is gone.  Amazing!

I did all of my Vestibular Rehabilitation Therapy exercises without a problem.  I haven’t been able to do them at all for over a week.  Today I can walk without my walker.

I made myself lunch.

I danced in my living room.

I took a long relaxing bath.

I’m tired now or I’d make dinner!!

Why can’t I feel like this every day?  Or more days than not?  Or even some days when I’m not on steroids?

Today has been a very good day.

what a relief.

 

Update 5.10.2016

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It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Migraine Madness

headache guide 1a
My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

Update On My treatment

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.

6 Signs Your Symptoms Could be a Vestibular Migraine

migraine eyeAs I’ve written about before, I have vestibular migraines, with Migraine Associated Vertigo (MAV).   It is hard to diagnose this type of migraine,it’s also very difficult to figure out if your vertigo is coming from MAV.  I came across this article the other day and thought it was worthy of sharing.

6 Signs Your Symptoms Could be a Vestibular Migraine

Following are the Symptoms they talk about, please go to the actual article to read about each of these in detail.

1. You have a personal or family history of migraine.
2. You experience vestibular symptoms in the presence or absence of a migraine headache.
3. Your vestibular symptoms vary in their severity over time.
4. In an episode, you experience other classic migraine symptoms.
5. Your symptoms increase with exposure to known migraine triggers.
6. Your vestibular symptoms significantly reduce your quality of life.

From this article there is a link to a blog post on My Migraine Brain that I found interesting. Valerie’s Vestibular Migraine

I hope you will find this as informative as I did.

If you have any questions about my experience with vestibular migraines and MAV, please ask.  I’m happy to keep the conversation going.