My Brain Screams

manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

A Really Long Update

water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved

And The World Spins Madly On

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.

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

20171028_182659
I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Meniere’s Disease Update

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.  🙂

 

When A Virus Hits

sick-cartoon

*this post mentions poop.  if you are uncomfortable reading about poop or the smell of poop well, you probably shouldn’t have read this sentence….oops.  Really this is as bad as it gets so if you’ve gotten this far, you’ll be okay.

The past few days I’ve been a big poopy pants.  No really.  I’ve had some kind of bug that had me running to the bathroom constantly.  I’ve been trying to loose weight but this was not the way I planned.  I’m sure most of you can relate.

What most of you can’t relate to is how this virus affected the rest of me, namely my vestibular system. When something like this hits me my vestibular system seems to think it needs to attack me too.  I was suddenly having vertigo while fighting a vicious virus, well poop.  Running to the bathroom with the room spinning can be a challenge.  (thanks hubby for all the help, sorry about the smell.)

Any kind of stress can cause a person with Meniere’s to have more vertigo.  When my stress levels rise there is a strong likelihood I will have vertigo.  When my body is under stress there is even a greater likelihood that I will have vertigo.  A virus will often have my head spinning.  If I don’t have vertigo when I am stressed at the very least my balance will be more compromised than usual…yes even more than usual, it really is possible!

What can I do?  When I have a virus there isn’t much I can do about reducing my stress levels, but I can try.  I practice deep breathing exercises, not only does this reduce stress, it helps reduce nausea.  I sleep as much as possible.  When your sick sleep is a good thing. Really there isn’t a lot I can do, so when the vertigo comes I ride it out the way I do every vertigo attack and hope it isn’t going to be a bad one.  Luckily, the attacks I had during this virus were not very bad.  As long as I stayed calm, practiced mindfulness, and relaxed as much as possible I was able to get through it with as little extra stress to my body as possible.  This was very important, as I was really sick.

I’m pretty darn lucky  that I have a great hubby to help take care of me when things like this happen.  REALLY LUCKY!

Now it’s time to catch up on life.  What’s up with you?

 

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. 😉

 

Meniere’s and Psychological Distress

wendy hair

When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.”  He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.

Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress.  A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.

Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.

I’ve been diagnosed with PTSD.  I’ve known this for a while but it has never been as apparent as it has been the past month.  For the past month I’ve had very little vertigo.  The vertigo I have had has been minor and only lasted for a very short period of time.  Most days I’ve been vertigo free, but I haven’t been able to enjoy these days.  I am constantly expecting an attack at any moment.  I’m on edge, jumpy, irritable, anxious, argumentative….  I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently.  I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall.  Waiting for that next vertigo attack.  Sometimes I deal with this much better than other times.  Right now, I’m a nervous wreck.

I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis.  If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it.  PTSD Test

additional reading and helpful sites:

Stop apologizing

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo

What’s it like to have a Cochlear Implant?

me with CII got my first cochlear implant (CI) in July of 2011, and my second in September of 2013.  When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs).  A friend of mine asked me a few questions about it recently.  I’m here today to answer some of those questions.

What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing.  Let me see if I can explain this in my own words.  There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter.  There is part that is on the inside that is the stimulator and the electrode array.  Sound comes into the microphone and goes through the speech processor to the transmitter  (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator).  The stimulator is in my head, between the skin and the skull.  When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves.  For a better explanation please go here.   (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)

Cochlear Implant
This is a photo of the receiver/stimulator and the array. The array is the wire it is what goes in the cochlea of the ear and sends impulses to the auditory nerves. The stimulator is right on the inside of my head.  The transmitter connects to the stimulator by a magnet.

cochlear implant 2
This is a photo of a microphone, processor, and transmitter. You can readily see the microphone that hooks around the ear but there is one at the top you can’t really see. Many processors have microphones that are not readily seen.

Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease.  My hearing loss happened fairly quickly.  I was diagnosed bilateral in November of 2009.  In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear.  That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked.  It took a little while, but I soon got my second CI.(September 2013)  Why did I get cochlear implants?  because that was the only way I would be able to “hear” anything.

How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site.  “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”

Do you hear the same with a cochlear implant as a you do with normal hearing? – No.  Some people can understand words and sounds immediately, other people can only hear clicks and whistles.  It is a completely different way of hearing and your brain has to be retrained.  When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium.  A lot of Donald Duck and Mickey Mouse voices were around.  Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part.  When I hear something I’ve never heard before things can sound very odd.  Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them.  The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.

Do you now hear like everyone else? or is it odd?  What is your hearing like now? – This is the big question isn’t it? What is my hearing like now?   First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.

I often can’t hear when someone speaks behind me.  If there is noise in the room I have a very hard time hearing.  (the newer CI’s are better for this, even though I have a newer CI I still have a hard time)  In groups it is very hard to keep up with what everyone is saying.  I am much better at conversing one on one.  I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me.  Between the two of those I do pretty well, but put me in a crowded room, and I’m lost.  Heck, put me in a room with more than one person and I can get pretty lost.

I think I might be able to hear better if I had more practice, I’m not sure.  Most of the time I only talk with Stuart.  I talk to my doctors.  I talk with our roommate, but I have a very hard time understanding him.  His voice is deep and I simply cannot understand most of what he says.  It makes things difficult, and sad.  But for the most part I don’t see anyone else.  Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity.  However, it’s also really hard to put myself out there in those situations because I get so lost and confused.  It does make meeting new people even more challenging.

Unlike most people with cochlear implants my hearing fluctuates.  Some people with Meniere’s who get CI’s end up still having fluctuating hearing.  Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted.  My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.

Let me tell you what an average day for me is like.  I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound.  Everything sounds a bit loud.  Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change.  It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud.  I’m always telling Stuart to please be quieter.    Sometimes my hearing will change throughout the day.  I will often say, “I’m having a bad hearing day.”  I’m thrilled when I can say I’m having a good hearing day.

When I take my CI’s off the world changes.  Suddenly the only thing I can hear is my tinnitus.  (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)

I don’t know sign language.  I am working on learning some, but I haven’t been able to take a class.  At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.

What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off  because I got too close to something metal.  I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it.  It’s kind of funny, kind of annoying.   Other times when I want to lie down the headpiece won’t stay on.  This is annoying, especially when I’m sick.  I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.

Does it hurt? – Well the surgery hurt, but it wasn’t so bad.  It is actually an out-patient surgery.  Does it hurt on a day-to-day basis?  Not really.  If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that.  I have screws that are very close to the surface right behind my ears.  One ear is worse than the other.  Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin.  Sometimes this hurts.  Sometimes my processor and glasses will rub on them.  My sun glass arms are thicker than my daily glasses and they will cause that area to hurt.  If I can lie down on it, it hurts a bit.  Other than that, no it doesn’t hurt.  If I didn’t have the screw issue I really wouldn’t even notice I have them on.

Now I just have to share the funniest thing I’ve misheard due to my hearing loss–  Once I asked Stuart what Jesus was other than seen as a prophet and son of God.  The answer I heard was, “Jesus was Jimmy Buffett”  I busted out laughing.  “Whaaat?  Jesus was Jimmy Buffett??”  What Stuart actually said was, “Jesus was a Jewish Carpenter.”  I still get the giggles when I think about Jesus being Jimmy Buffett!