Working Out Your Inner Ear and Your Brain

Many people have asked "Is there a treatment for PPPD?" The answer is yes. But before I go any further, let me give a couple of caveats:

1. Don't diagnose yourself
2. Don't treat yourself.

You can do more harm than good and PPPD is nothing to mess around with. You need to be diagnosed by a physician who is familiar with PPPD and can administer the right diagnostic tests. 

© 2008 Fe Ilya, Flickr | CC-BY-SA | via Wylio

Now for the treatment. At the Mayo Clinic, after extensive testing, they prescribe a specialized program of vestibular rehabilitation therapy combined with medication (either an SSRI like Prozac or Zoloft or an SNRI like Effexor or Cymbalta.) The medications are intended to help with the dizziness, making the exercises more effective. I was unable to take these medications because they made my migraines worse. But that was just me - everybody's different.

And don't go to just any physical therapist. He/she needs to have been trained to treat PPPD, because the treatments are very specific. Just any vestibular rehab exercises will not do it. In my case, I met with a PT at Mayo who prescribed a program of exercises I could do myself at home. I just called or emailed him when I had questions, and it worked out well for me. Later, I found a PT in my area who was trained in PPPD, and I found her very helpful too.

For me, the rehab consisted of two types of exercises - balance exercises and VOR (vestibular ocular reflex) exercises, also known as gaze stabilization exercises. I had a specific set of these I did two or three times a day, varying certain factors as my dizziness improved. For example, in the balance exercises, I might have my feet spread apart at first and then worked up to having them together. Or I might increase the length or speed of the VOR exercises. For all of these, the goal is to do just enough to get uncomfortable, but not really dizzy. If you get really dizzy, you've done too much and you haven't helped yourself. I was given this guideline: If the dizziness subsides in 10 minutes, you've done well. If it takes 2 hours, you've done too much. The process is EXTREMELY slow. Dr. Staab at Mayo emphasized I needed to have patience and persistence. The persistence was easy for me, because I was determined to get better. The patience - not so much. 

I was told it could take a year to get better. But the doctor said that I could expect to see some improvement after three or four months. When I was at the bottom of the spiral, a year was too overwhelming to think about. So I focused on the three or four month thing. Turns out that was a mistake. The progress after 4 months for me was so slight that I became discouraged many, many, many times. Let me be clear: This. Is. A. Slow. Process! 

Baby steps. Tiny baby steps. That's what you have to think about and celebrate. For me it took over a year to get significantly better. But if you stick with it, it does work. It probably varies depending on how long you have had the PPPD when you start the therapy. It took me a year to get in to the Mayo Clinic, so I was in bad shape when I started the rehab. It was clear by the way I walked. I've seen 90 year old women walk faster and more steadily than I did. 

What the VOR exercises do is to retrain your brain. That's probably why it takes so long. I mentioned in my post How PPPD Develops that your brain starts to depend on your eyes for balance rather than your inner ears. These exercises actually retrain the brain to use the inner ears for vestibular input. And that can take a while. I did have more rapid success with the balance exercises. And a walking regimen helped a lot with my balance. My gait was the first thing to improve. I guess practice makes perfect.

For me, at least, the dizziness was only part of the picture. I was still left with overwhelming fatigue, and I continue to work on that. But I celebrate all my victories. 

Leave your questions and comments. I'd love to hear from you. And if this helps you, please share it using the buttons below! Thanks!

It's Official!

ICD 11, the 11th version of the International Classification of Diseases, was released today, including within it Persistent Postural Perceptual Dizziness. It won't change anything necessarily for me or for other PPPD sufferers, but it's a validation of sorts.

Definitely talk to your doctor about it. You don't want him/her to use the diagnosis code for this until you are sure that your insurance will cover it. It may take a few months for them to catch up. But it is a little morale boost to know that this condition is recognized by the World Health Organization.

How PPPD Develops

The triggers and development of PPPD, in my understanding, differ from person to person. There is always one triggering event, however that starts it all off. Usually this is some vestibular disorder like Ménière's disease, BPPV (regular vertigo), or some other inner ear disorder, but it can also be a traumatic brain injury or other conditions that cause dizziness. The next steps vary, so I can really only tell you how it happened in my case as was explained to me by the doctors at the Mayo Clinic. But the general pattern should be the same.

© 2013 John Bäckstrand, Flickr | CC-BY | via Wylio

The docs told me that my triggering event was inner ear damage of an unknown origin. Through testing, they determined that the vestibular function in my left ear was damaged by 70%. They also told me that my migraines made the situation worse, because they evidently interfere with the brain's ability to regulate balance. So once you are dizzy, the brain goes into survival mode trying to help you keep your balance. As you walk, the brain is working really hard to keep you from falling down. In my case. This was aggravated by extreme, prolonged stress I was experiencing in the workplace. The more you try to function, the more your brain gets agitated, making it harder to balance, so the dizzier you get. And the spiral starts.

As you get dizzier, the brain searches for another way to balance, so it starts depending on signals from the eyes to balance rather than the inner ears. The eyes, however, are terrible at this for two reasons. One, everything around you moves, so your eyes are constantly adjusting and sending signals to the brain. And two, the eyes take up more brain power than any other organ, so you're taxing your brain even more, agitating it even further, making it harder to balance. And down it goes.

The dizzier you are, the fewer things you are able to do. And your life gets smaller and smaller till you can't leave the house or even entertain visitors. That is the downward spiral and it gets worse and worse until you get treatment. The good news is that there is a treatment. See my post Working Out Your Inner Ear and Your Brain.

Please feel free to leave comments or questions. I would love to know your story. The more we get the news out about PPPD, the more doctors will learn to diagnose and treat it.

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Spiraling Down

Since I could not document my journey as it was happening, my plan is to try to paint a picture now of what life is like with PPPD - both on the spiral downward and on the road to recovery.

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© 2007 Myshelle Robinson, Flickr | CC-BY-ND | via Wylio

PPPD is a degenerative condition. Until it is treated, it gets worse and worse. I had to stop working fairly early on in the process and it went much farther down from there. Also, there really is no typical day, because it ebbs and flows. You have good days and bad days, and for me at least, the dizziness triggers were constantly changing. That said, I'll try to describe a "typical" day on the descent.

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Every day I would get up and have coffee and walk slowly to the sofa where I would stay until bedtime. Many TV shows were out either because they had fast-paced action that made me dizzy or the drama made me anxious, which made me dizzy. Reading was out, emailing was out and talking on the phone was out (not sure why that made me dizzy, but it did.) I listened to a LOT of audiobooks to keep from going crazy. I also found that I could do jigsaw puzzles on the tablet. Those two things were pretty much my only distractions for a while until I found enough shows on Netflix that I could watch.

Other things that made me dizzy:

• Moving around
• Bending over or looking up
• Nodding or shaking my head (yes or no)
• Stress and anxiety
• Getting tired
• Riding in a car (I stopped driving really early on)
• Conversations
• Most games and apps on phone or tablet. 
• Going outside

The only thing that relieved the dizziness was to rest with my eyes closed in a semi-reclined position. The time it took to resolve depended on how dizzy I was - anywhere from an hour or so to all day. And since the triggers were constantly changing, while I was awake I was either dizzy, recovering from it, or trying really hard to avoid it.

Then, there's the emotional aspect. Foremost is the fear and confusion. You don't understand what is happening to you or why such simple things are making you dizzy and you don't know how to fix it. And let's face it - you try to explain to someone why you can't work and you're sure they're trying not to roll their eyes, thinking "You can't work because you get dizzy?" It's very hard to explain and for others to understand. Also, as I mentioned in the How PPPD Develops post, my life became smaller and smaller. Whereas I used to host family events at holidays, now I couldn't even attend them. I couldn't see my grandchildren or even leave the house except to go to the doctor, which was an ordeal. It's depressing and extremely frustrating. And because you don't know what this is, you don't know if there's a way out.

The good news is that there is a treatment. Once you get diagnosed, you will begin vestibular rehabilitation, which will help stop the downward spiral and help you begin to spiral back upward. I will tell about both those things very shortly.

I would love to hear your comments and questions. And if you like this post, please share it using the buttons below. Thanks

I Can Read!

This is huge for me. Reading has always been my favorite pastime, and it was one of the first casualties of my PPPD. I couldn't read for more than a minute or two without getting really dizzy. It was a variable thing. I could read enough to find what I needed when researching symptoms, doctors, etc. Then I would print it out and my husband would read it to me. The smaller the screen, the better. Phone beat tablet; tablet beat computer. 

© 2010 Tim Geers, Flickr | CC-BY-SA | via Wylio

I'll mention here that this symptom of PPPD is sometimes referred to as Visual Vertigo. If you have this problem, here are some resources that I found very helpful:

• Podcast featuring Dr. Jeffrey Staab from the Mayo Clinic and Marousa Pavlou from King's College, London. 

• Handout that gives helpful explanations and treatment 

At any rate, my beloved books were off limits. Instead I depended on audiobooks for two years. But as my dizziness improved, I began to have less trouble reading. Just recently, I finally felt ready to try a large print book. I thought that would be a good place to start. And success! I had no trouble reading large print. After reading two large print books, I got up the courage to try normal print, and once again, success!

You don't realize how much the small things mean to you until they're taken away. Picking up a book is a simple pleasure I won't take for granted again.

Beating the Fatigue Part Two - Meditation

As I mentioned in Part One, I discovered the combination of exercise and meditation by researching brain trauma recovery after I began thinking of my brain as being damaged. I believe that it was damaged by severe prolonged stress, a topic I will write about soon. At any rate, the combination of exercise and meditation is working really well for me. Again, I'll give my inexpert non-medical opinion as to why it helps.

© 2007 impaulsive photography, Flickr | CC-BY | via Wylio

First, meditation teaches you the value of deep breathing. It's very calming, which is a benefit, but in my opinion, the real value is that deep breathing in combination with exercise helps get oxygen to to the brain, allowing it to create new brain cells and repair damaged tissue. Secondly, we've talked about how migraine and PPPD make the.brain extra sensitive to external stimuli. Meditation teaches you to disregard the stimuli, and with me, it seems to be happening even sub-consciously. As the brain gets stronger and calmer, it is better able to defend itself from over stimulation.

I have also found that guided imagery works really well during meditation. I picture my brain healing, growing new brain cells, creating new synapses. And I picture myself breathing in healing oxygen and breathing out toxins or any unwanted symptoms. I found some really helpful guided meditation and imagery tracks on www.healthjourneys.com. The one on Traumatic Brain Injury works well for me, but they have tons to choose from and you can buy them online and download them straight to your mobile device.

If you just want to get started with meditation, Calm.com (or use the Calm app) has lots of excellent guided meditation exercises for free. There's also soothing music you can use for meditation on your own. I also use the calming music sometimes when I practice my Tai Chi.

You know, I have to wonder if I had started meditation while I was going through the extraordinary stress at my workplace if I might have avoided this whole journey. But regardless, I am finding it invaluable now. I meditate about 25 minutes a day, but it doesn't have to be that much. I think doing it every day is more important than the amount of time you spend. I'd say if you don't have 25 minutes, try for 10.

I'd love to hear from you if you have any questions or comments. And if you like any of these articles, please share them using the buttons below.

P.S. to my migraine post

Today I received my first dose of Aimovig. It is the first of a new class of migraine preventives that is being developed. This is huge news for migraine sufferers. If you haven't heard of it, these CGRP* inhibitors are the first drugs ever developed specifically for migraine prevention. All other preventives that are used were developed to treat something else and then found to help prevent migraines in some people. They all have side effects and none of them has worked for me.

Aimovig is the first CGRP inhibitor to be approved by the FDA. Others are coming later this year. The great thing about these medications is that side effects are few and mild and they are proven to be effective in reducing migraine days by as much as half. They come in self-injectible pens and Aimovig has a 2 month free trial available. I just received and took my first dose. Super exciting. I'll let you know how it goes!


*Calcitonin Gene-related Peptide

Beating the Fatigue Part One - Exercise

As I mentioned previously, after experiencing some success in reducing the dizziness through vestibular rehabilitation, I still found myself unable to live a normal life due to extreme fatigue. No one prepared me for this and I couldn't figure it out. The doctors at the Mayo Clinic and my physical therapist all said that it was because my brain was having to work extra hard to fight the dizziness and to deal with all the external stimuli.

© 2012 Hisakazu Watanabe, Flickr | CC-BY-SA | via Wylio

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Explanatory note: in PPPD, you have to retrain your brain to balance correctly. For whatever reason, the balance system becomes compromised and the brain begins to use the eyes to balance rather than the inner ears. This does not work well, because everything moves, so the eyes and brain are constantly trying to keep up. You have to retrain your brain through vestibular therapy to go back to balancing with the inner ears. And because the brain is working hard, it becomes extra sensitive to stimuli.

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I found it hard to believe that brain fatigue was causing all this physical fatigue. But I'm here to tell you, it can! I had started a regimen of walking early on in my fight against PPPD just because I thought it might help me get in better shape and make me feel better. It did, and it actually helped my balance as a side benefit.  But a couple of months ago, I finally decided to accept the brain fatigue theory and started thinking of my brain as damaged. When I researched recovering from brain trauma, two things came up over and over - exercise and meditation. I decided to focus on those two things and I have had excellent results.

I worked my way up to walking 30 minutes a day. Sometimes I walk outside, sometimes in the mall and sometimes just inside my apartment. I am now working on increasing my speed. Now, here is my inexpert, non-medical, understanding of how it helps. We know that exercise is good for the brain and helps it regenerate itself. That's why they say exercise is the best way to prevent dementia. I know that exercise strengthens your heart. I figure that as my heart gets stronger, it helps improve blood flow to my body and my brain. That helps feed oxygen to my cells, helping me to heal. And as my brain gets stronger and more healthy, I figure it can work more efficiently, helping diminish the fatigue. And it is working. I can finally see progress!

The other exercise I do is Tai Chi. I do the 24 form I am learning from a DVD. Tai Chi is known to improve balance and increase energy. And I love it because it's calming and beautiful. It is also improving my flexibility and stamina.

In my next post, the other part of the magic formula - meditation.

Beating the migraines - What worked for me

So first I want to say that migraines can play an important role in PPPD. The migraine brain is more susceptible to developing PPPD in the first place. Migraines also interfere with the brain's vestibular functions making balance more difficult, and additionally, the migraine brain is more sensitive to stimuli, which is a huge factor in PPPD.

For me, the PPPD exacerbated the migraines and vice versa, and both caused an unusual amount of fatigue. They all sort of played off one another to really mess up my life.

© 2009 keith ellwood, Flickr | CC-BY | via Wylio

I, like many of you took a triptan medication (Relpax) for migraine relief. They work great if you only have occasional migraines. But more than that and you can be in real trouble, because they cause rebound migraines. In my case, I ended up taking a Relpax pretty much every day, which meant daily migraines, fatigue and a lot of misery. So I knew I had to stop the cycle.

There are infusion centers available that hook you up to an IV for 8 hours a day for 5 days to help you  break the cycle, but that didn't sound good to me. After doing some research, I decided to quit cold turkey. I knew I would have a bad withdrawal migraine, and the research told me I could expect it to last 4 days. I asked my doctor for a prescription for anti-nausea suppositories in case I started throwing up and couldn't stop. But that didn't end up being a problem.

My withdrawal headache lasted 3 days and the first night was by far the worst. So I knew I could make it. When it was over, I knew I never wanted to take tripans again. I just didn't want to get back on that train. And I haven't. I now get about one migraine a week, and I don't take anything. They only last 1 day each, unlike the 3 to 5 days they used to last in the pre-Imitrex days. I know each time that the pain will go away, and I can make it. And I am so much happier being medication free.

Kicking the Relpax (and also my migraine preventive, Topomax) made a huge difference in the way I feel. I am much less tired and I feel so much better. I heartily recommend it if you are anything like me.

Next time, how exercise has helped my PPPD.

I'm Baaack!

Sorry I haven't posted in a while. It turned out that starting this blog was taking too much out of me, so I had to step back for a while. Six months later, I am MUCH better, I'm happy to say. So I'm going to try to continue posting everything I think might be helpful to other sufferers of PPPD or chronic dizziness.

© 2007 Todd Baker, Flickr | CC-BY | via Wylio

When last I posted back in January, I had already overcome a lot of the dizziness through vestibular rehabilitation therapy, which I will explain in an upcoming post. My primary problem then was the crippling fatigue. I just could not function normally. It was complicated by my chronic migraines, which actually play a role in PPPD. Now, six months later, I am significantly improved on all fronts. I accomplished this by the following:

1. I kicked the triptans (migraine treatment medication which actually contributes to chronic migraine)
2. I weaned myself off of the Topomax (migraine preventive) which was causing lethargy.
3. Regular exercise - walking 30 minutes a day (I worked up to this) and 30 minutes of Tai Chi (really good for balance and fitness).
4. Meditation - 30 minutes a day

More detail in this post. But this combination worked miracles for me. 

Also, if you have any questions about anything on this blog, please leave a comment and I will get right back with you. More to come.