Pause.

 

I have a lot going on this week, including some college classes and new exercises from the functional neurologist. All are exciting and good. But I’m trying to give myself a bit of space this week as I adjust to the new schedule and exercises. I’ll be back on Saturday with Weekend Links & Updates!

Weekend Links & Updates

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Links:

10 Surprising Facts about Dizziness and Vertigo – It was nice to see both Mal de Debarquement Syndrome and Meniere’s mentioned in the same article

Symptoms: Sound- and Pressure-Induced Vertigo – A rare reason for dizziness

It’s About More than Your Inner Ear – How vision therapy can provide stabilization. I did vision therapy as a child and then repeated it after my first concussion. While it was very helpful when I was young, after my concussion it didn’t do much  for me. Because my vision issues weren’t muscle related but nerve and balance related, what I really needed and what we didn’t know about at the time was Functional Neurology. 

Links thanks to the VEDA Facebook page.

Updates:

  • On Monday I went dancing! This was hugely exciting for me. I love dancing and it was one of those things that I thought I would never do again. I mostly did some waltz and swing. I made it through about 30 minutes of lesson review and then maybe 5 dances with lots of sitting in between. I did have moments of dizziness, but it was all mangeable.
  • On Wednesday, my family and I drove to Corvallis to watch my brother Andrew’s White Coat ceremony. Afterwards we went out to dinner at a restaurant that had the dreaded overhead fans. Yikes. My dad ended up loaning me his hat which helped tremendously but there must have been subtle flickering going on because after an hour or so my brain had had enough and I almost burst into tears at the restaurant! So, yes, that surprised me. That was my signal to get out of there, which I did.
  • This was my brother Jacob’s third week at Arrowsmith. We are noticing huge strides already. He talked all day Thursday, which is a big deal. At some point I’ll have to do another blog post on it!

Benefits of listening to your body

Last week, I talked about how to listen to your body, which perhaps was a rather backwards way to go about it, as maybe I should have first talked about the benefits of listening to your body.

Here are just a few reasons to fine tune the skill of listening to your body.

Track minuscule progress
When you’re in the midst of not feeling well every single stinking day, it can be hard to recognize progress when it comes. It’s easy to feel continually discouraged. We often think of progress in terms of large items – for example, being able to wash the dishes without help. But by paying attention you can encourage yourself with small progress that perhaps you wouldn’t notice if you weren’t taking the time to listen to your body. Perhaps you had a strenuous day and that evening you’re not quite as tired as you should be. Take time to notice it and celebrate it. Thank God for it. Don’t just ignore it. I think it’s easy for us to ignore small progress as we don’t want to get our hopes up that everything is getting better. It seems so much safer to wait until HUGE progress is made before we enjoy it. But that’s not really what it’s about. Big progress only happens with lots of incremental steps of often insignificant movement. Taking time to recognize what’s happening in the moment is important.

Track setbacks
While this isn’t quite as fun to think about as tracking progress, this is just as important. By tracking setbacks you can be proactive in trying to find the correlation between activities, food, stress and other factors that can lead to diminishing returns. Then you can work to find ways to avoid, minimize or work around the things that contribute to setbacks.

Communicate with your doctors
Being able to communicate accurately with your doctors is huge. Going to the doctor while dealing with a chronic issue and just responding with “Okay” when the doctor asks you how you’re doing is simply not helpful! Unfortunately (or fortunately!) doctors are not mind readers and need all the help they can get when it comes to helping you towards better health.

 

Weekend Links & Updates

 

Links:

Updates:

  • Last Friday involved an outing to the river, friends over for dinner and an evening conference. Then Saturday was a whole day conference, a quick nap and then a wedding. On top of two weeks of non-stop on-the-go company, I was done by Sunday afternoon. It felt good to do nothing!
  • This week was my brother Jacob’s second week going to the Arrowsmith Program. I found out about it after reading Barbara Arrowsmith’s book, The Woman Who Changed Her Brain. We are seeing a little bit of progress already so that’s encouraging!
  • I’ve been driving Jacob to school every morning, so that’s been a bit of an adjustment. I’m getting up an hour earlier, but I think I’m finally adjusting. It really felt like I had jet lag for a while!
  • This past week has been a little more relaxed. My brother Andrew is leaving for Vet Med school tomorrow, so the focus has been on spending time with him. Yesterday we had a family day and hiked to Mirror Lake up near Mt Hood. Unfortunately the mountain was cloudy, but the hike was lovely. Today is another relaxed day with hopefully some games, movie (It’s a Mad, Mad, Mad, Mad World) and pizza eating!

 

Listening to your body

I realized on Monday that I forgot all about Weekend Links and Updates. The past two weeks have been crazy, and last weekend was the craziest. I think my brain was so exhausted by Sunday that it went into survival mode. I’m sad I missed it, as I had lots to share, but next weekend I’ll be back!

This weekend I was visiting with friends at a wedding and I was talking about an experience I’d had in which my ability to listen to my body had surprised the doctor I was with. My friend remarked that she wished she had that intuitiveness, to which I replied, “No, you don’t really want to have to go through what I have to gain it.”

Being able to listen to what my body is telling me isn’t something that happened overnight, or something I was born with. But dealing with two concussions over four years forced me to pay attention to myself in a way I had never done before.

While I think this ability comes more naturally to some personalities, it certainly didn’t for me! I was willing to push myself through almost anything. It took a lot to stop me from pretending I was okay. It was only with my concussions that I started listening closely. I couldn’t pretend anymore. I couldn’t fake it.

Listening to your body is important if you deal with any sort of ongoing health issue.

It is possible to learn how to listen to your body, but it’s not always natural or intuitive. It takes time and practice. BUT, if you can learn how to do it, it’s a valuable tool that can help you recover faster and give you more peace of mind.

So how do you learn to listen to your body?

The easiest way to start, I think, is to ask yourself how you feel when you wake up. I know that seems simple, but it makes all the difference. I suspect that most people don’t give a thought to how their body is feeling in the morning unless they wake up with unexpected pain. So as you start to wake up, sit up, or drink your coffee, just take a moment to check in. Here are some questions to ask yourself:

Does anything feel out of place?
Do I feel worse or better than yesterday?
Is there an obvious reason why? If not, try and think about it off and on for the rest of the day. Sometimes it takes me a day or two to see a pattern.
Am I feeling rested? Do I need to make time for a nap today?
Do I need to take it easy today? If so, what can I cut out that’s not essential?
Am I happy? Sad? Depressed? Stressed? Sometimes just acknowledging what you are feeling can make it seem better. And you can give a heads up to the people you’ll be seeing.
Why do I feel this way? This is a little harder, but go for it!

Listening to your body is really all about trying to find what patterns and habits are helpful or harmful to your body, and trying to put a stop to anything that is within your control that is negatively affecting you. It’s a valuable tool to have and one that will hopefully lead to quicker healing or at least more consistent health.

Next week I will share some of the benefits of listening to your body.

Does Acupunture help with MdDS or Hydrops?

The short answer is: Yes.

The long answer is more complicated. Acupuncture is extremely individualized and I wouldn’t say by any means that it is a miracle cure. But for me, I have found that it provides some extra stability and is worth it!

So what differences have I noticed?

I feel more grounded.

I think MdDS and Hydrops (and probably other vestibular disorders) lend themselves to a feeling of lightheadedness and a slight floating sensation. I notice that after acupuncture I feel more connected to my feet. And I feel “heavier” in a good way! Not as in fatter, but as in my center of balance is lower and I’m more stable. As in less likely to get blown over by a gust of wind.

My hydrops stays consistent.

This was especially true before my nose surgery and I had blocked sinuses. I noticed that my ear would feel fuller if I hadn’t done acupuncture that week. I hadn’t thought about the correlation again until today, but all last week I was having issues with hydrop flare ups and I had also gone about a month without acupuncture, and I suspect that was contributing to my sensitivity. Now that I just had an appointment I’ll be curious to see if it stabilizes again. If so, this is a huge reason for me to keep doing acupuncture, as hydrops flare ups get old very fast.

My neck and shoulders stay looser.

Before I was able to do physical therapy for my shoulders and neck, they were extremely weak and constantly sore. Acupuncture helped keep the pain down and I believe brought some healing to the area as my pain level did decrease a little bit after several months (and then it seemed to plateau). Now that my neck and shoulders are stronger, they don’t get sore like they used to, but I know that they aren’t “normal” as they are always having to do extra work to compensate for my balance. It’s nice to give them a well deserved rest.

It lessens the side effects of my prescription diuretic.

Diuretics can be extremely hard on your kidneys and I want to do everything I can to ease the unfortunate burden they have to carry and acupuncture provides some support. My acupuncturist also gives me several different supplements that support the kidneys and dispel excess warmth that I get from the diuretic. I also take a diuretic supplement from her that is just a little boost to my prescription diuretic. It helps the kidneys and allows me to eat just a little more salt.

Acupuncture has been a huge blessing as I’ve dealt with the side effects of hydrops and MdDS and it’s a useful tool to have in your toolbox. I think it’s pretty easy to tell whether it’s helpful, but you need to give it more than just an appointment or two to see if it helps as it is cumulative. If possible, I would suggest giving it at least 4-6 visits to see if it helps.

Weekend Links & Updates

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A pretty garden I spotted in Corvallis


Links:

Updates:

  • I’m still dealing with some hydrops issues. Yesterday I had another minor flare up and I’m suspecting that it is because I haven’t been cooking what I’ve been eating so it’s a lot harder for me to have an idea of how much salt I’m eating. Sigh.
  • The first half of this week was fairly stressful. A friend had a family emergency and I spent Tuesday at the courthouse helping her get a restraining order for her husband. It was long and stressful, but I didn’t have any waves of dizziness which was fantastic.
  • The week hasn’t been all stressful. I spent the day with my family and we helped move one of my brothers into his new apartment at Corvallis. He’ll start veterinary medicine school this fall at OSU and we are all excited for him. His lifelong dream to be a cat vet began at age 6. 
  • I’m playing the piano again and actually enjoying it. 🙂

The various stages of a Secondary Endolymphatic Hydrops attack

This past weekend I dealt with a Secondary Endolymphatic Hydrops flare up.

Ironically, it happened just days after I wrote to a friend who was inquiring about how I was feeling: I don’t think regularly about my brain anymore. Ha! Well, I thought about it this weekend, that’s for sure.

Saturday night, my brother cooked one of my family’s favorite meals, a corn sausage chowder. It’s delicious, but I wasn’t paying attention and he used the super salty chicken broth that I use when cooking something I won’t be eating. It’s very delicious but it has 3 times the amount of salt than the chicken broth that I use normally. So that night, my ear started filling up.

Here are the stages of my hydrops attacks:

I start feeling grumpy.

I now know that if I’m feeling grumpy/overwhelmed for no apparent reason it’s probably because my balance is off. It’s not enough to say I feel dizzy, but my brain is sending messages that something isn’t right. I’m still not to the point where I automatically tune into the grumpy=bad balance equation, but I’m slowly getting better at connecting the dots.

I start feeling discombobulated.

By this time, I am noticing that my balance is off. I’ll notice that I’m not comfortable just standing around or sitting in a chair without my head being supported. I also start feeling the urge to take a walk as I would rather be moving than standing or sitting. I also start to analyze why I could be feeling dizzy. Sometimes it takes me a while to figure it out. It took me a whole day and a half to realize why the soup had made my hydrops flare up!

I also begin drinking lots of water and I increase my diuretic supplements (not my prescription!). And I make sure to cut most salt out of my diet.

I start feeling like things are moving when I’m still.

This can take a couple different forms.

If I’m lying down, it feels like I’m moving/floating on a rippled surface. 

If I’m sitting and my head isn’t supported, I feel like my head is slowly going in circles. 

But I can usually rest in a reclining position and feel okay.
This is when I give myself permission to do nothing and watch tv/read books. I am careful to avoid too much stimulus on the computer as scrolling can make it worse.

I start feeling like everything around me is moving.

I’ve had about 6 of these attacks (maybe more?), all happening randomly during the 6 months between my diagnosis and when I had surgery for a deviated septum that was keeping my sinuses and ear from draining properly.

But when they did happen, it was nasty. They would usually start coming on in the evening and I would give up on getting a normal night’s sleep. After a couple of them, I figured out that if I positioned myself just right on the couch, with my head supported and tilted back at just the right angle, I could mostly stop that feeling of movement. Then I would watch tv until I fell asleep.

It’s not going to last forever!

Having a hydrops attack isn’t pleasant. But now that I’ve been around the block a few times, I’ve gotten to the point that I don’t start freaking out when I realize one’s coming on. I do get discouraged though! It’s hard to fight that feeling, but I just try and remind myself of the truth (it’s not going to last forever!) and that helps.