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. 

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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.

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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.

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