Backpedaling

So yeah, I guess I got a little overconfident when I posted about Beating the Fatigue. It's definitely not beaten, and I am confounded and frustrated by it. I did have initial success with the combination of exercise and meditation (which I continue), but I definitely reached a plateau. And I still get setbacks. If I do too much OR if I have a lot of stress, it's like landing on the "Go Back 4 Spaces" block. Or 7 spaces or 10. Then I have to start all over building up my stamina.

I can't figure it out. Why am I still so tired? Have any of you PPPDers out there experienced this? If so, PLEASE leave a comment. I would love to compare notes with you!

One web site I read mentioned that PPPD may be a component of Chronic Fatigue Syndrome. If anyone has any info about that, I would LOVE to hear it. Too tired to write more.  Later.

See you on Facebook?

Hey Guys,

First, a giant apology to those of you  who left comments I didn't respond to. I was relying on Google to notify me of those comments, and that was a big fail. It didn't. I've been on hiatus from all social media for a while, but I'm back now with lots to

tell. So I hope you hang in there with me.

© 2018 Book Catalog, Flickr | CC-BY | via Wylio

Second order of business, we need a better discussion forum. I am thrilled that my blog has reached other sufferers of PPPD. But this blog is not the best way for us to all share. I think the Facebook group is more efficient. There is a FB group called PPPD and Life. It has just recently become a little more active, and if we all join it and
promote it, I think it can benefit us all. I know that I learned a lot from the FB groups
I joined about Aimovig, the migraine preventive I'm on. (I recommend those too.) I think the word is getting out about PPPD, which is tremendous. And we have so much to learn from each other.

So join the group, OK? And thank you so much for your comments!! See you on FB.

Click to join PPPD and Life

Update on Aimovig

A quick update on my 2 month free trial of Aimovig. Remember, this is the first of the new class of migraine preventives - the first drugs ever to have been developed specifically to prevent migraines. They came out of fairly recent research that determined that migraines are not caused by vasodilation as previously believed, but rather are tied to an increase in a specific peptide, or protein, in the brain, (calcitonin gene-related peptide or CGRP). These drugs inhibit the CGRP, thus preventing migraine.

Aimovig is a self-administered, once a month injection. If you are interested, I suggest applying for the 2 month free trial. Amgen will end the injections to your home for free. I have just finished my first month and will receive the second dose in 2 days. So far, I have not seen a reduction in the number of migraine days, but the headaches I have are definitely milder. It is supposed to take as much as three months to experience the full effect of the medication, so I am still hopeful. But I am happy even now as I don't dread the headaches as I used to, and I have zero side effects. I definitely recommend it to all migraine sufferers.

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.

And as always, if you like any of these posts, please share using the buttons below.

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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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