Brain Fog?

There's a lot out there about brain fog. It seems to go along with several chronic conditions, including vestibular disorders like PPPD. My experience has been a little different and I'm hoping by sharing it I might find others who have had a similar experience.

I have never felt "foggy" in conjunction with the PPPD. I can think just fine. My problem since the PPPD began has been that thinking makes me tired. Still does. And I don't know what to do about it.

© 2005 paukrus, Flickr | CC-BY-SA | via Wylio

As part of my appeal process for my disability insurance, I underwent a neuropsychological exam. If you are experiencing brain fog, you might be interested to have this done. It measures whether or not you are suffering from any cognitive difficulties as a result of your condition. It isn't easy. It's an 8 hour exam which for me took almost 15 hours over 2 days. It was grueling and needless to say, exhausting. But I wanted to know.

As it turned out, my memory and other brain functions were mostly fine. It showed some impairment of executive function. Oddly, there was no mention in the report about how long it took me to complete the tests, how often I had to take breaks or how many hundreds of times I yawned or put my head down. But actually I was glad my brain was working right for the most part. So why do I get so tired from thinking?

Since I am unable to work, fortunately I don't HAVE to think most of the time. There are occasions when I have to, like trying to select Medicare plans, prescription plans, etc. That was a treat! But it does hold me back. For example, I love puzzles and have several puzzle books, but I have stopped doing them because I noticed that I could hardly stay awake after doing one. Even spending much time on Twitter or my Facebook groups wears me out.

Anybody else out there? Has this happened to you? Because I really want to know. How do I make this better? I am feeling better physically now and am able to do more. I am seeing my grandkids more and am able to do some crafts. We even go out to lunch sometimes. But thinking still makes me tired.

I would love to hear from you. And as always, if you like this post, please share it using the buttons below.

Go Back to Start

If anybody was wondering whether or not you can have a relapse with PPPD, you can. In my case, it was brought on by the shock of having my LTD benefits discontinued. It wasn't the money, although when you can't work, the money is important. It was that I felt like they were saying that I'd been faking all along; lying about my condition. They ruled that I would be able to work 40 hours a week, when the truth was that I couldn't sit at the computer for more than an hour without having to rest. I couldn't do a tiny fraction of the work I did previously. It was ludicrous and insulting and incredibly upsetting to me.

This complete jolt to my system set me back about a year and a half in my recovery. It was so ironic. Suddenly I was dizzy again every day and the fatigue went off the charts. I had to start all over with my rehab and walking. Whereas I had worked my way up to walking 30 minutes a day, I had to start all over again at 3 minutes. Three minutes! It was so frustrating. That was in October (9 months ago) and I still haven't worked my way back to where I was, although I'm getting closer. I have actually just in the last week started to try very light housework. Basically I can dust one room. But it's a start.

If you do suffer a relapse, remember two things: you got better before, you can do it again and, as Dr. Staab said "patience and persistence" are the key. Boy he wasn't kidding! Let me know if you have experienced anything similar. I'd love to hear from you.

On Long Term Disability? Read This!

I'm not much of a sharer of personal information. As an educator, I was all about sharing professionally. I think we all benefit from one another's expertise. But personally, I like privacy. The whole reason I created this blog was to help other people who might find themselves or their loved ones in a similar position to mine. In that spirit, I want to share what I have learned about Long Term Disability insurance.

© 2007 Martin Abegglen, Flickr | CC-BY-SA | via Wylio

Mine was approved rather quickly for my PPPD, much to my surprise. I was very lucky in that regard, I know that. I also knew they would check in with me periodically to see how I was doing and to check my medical records. No problem. What I did not know is what you should take careful note of. Many LTD insurance companies do not like to pay benefits for longer than 2 years. Therefore, the 2 year review is critically important!. In my case, as it turned out, they were looking for any excuse to discontinue my benefits. And I inadvertently gave it to them.

At the two year point, I was SO TIRED of not being well, not having a life, not being able to see my family and friends. I was struggling and the only way I could cope was to focus on the positive. I focused on my small successes and improvements and I would become upset if my husband talked about my true condition, which was not great. Consequently, when the insurance company called to do my two year review, we were in that mindset. Both my husband and I focused on the improvements I had made. I thought, mistakenly, that I was showing good faith. Clearly I was unable to work, but I wasn't just sitting around collecting a disability check. I was working hard trying to get better.

Suffice it to say that the insurance company seized onto one or two statements, twisted them around, took them out of context and fabricated a denial of benefits out of it. The letter they sent me illustrated this so clearly it would have been laughable if it wasn't so upsetting.

I'm not saying anyone should be anything but truthful in this reviews. But it matters how you frame events and facts and how you state them. That's what I learned. For all I know, they may have found some other reason to deny my benefits. I have caught them in so many blatantly untruthful statements and they have contradicted themselves so many times that they are probably capable of anything. But let my story be a heads up to others so they can benefit from my experience.

One more thing - this recorded webinar contains excellent information on applying for disability benefits and also how to appeal a denial. It was sponsored by the good people at VEDA (Vestibular Disorders Association) and is well worth watching.

As for me, I will focus on the positive. I did get 2 years worth of benefits and that's more than many deserving people get. I'm moving on.

About This Blog

Hello all. As you can see, I have had to move my blog to a new location, but all the old posts are still here. I had to take the blog down for a while due to an appeal with my disability insurance company (which I lost, by the way). And in order to resuscitate it I had to move it here.

As for me, I have been clawing my way back to health. It is a long, long road, but I am doing much better now and am getting stronger every day. I'll tell you about my relapse and recovery - the sequel - in an upcoming post. But I wanted this information to be out there again, especially now when there seem to be more of us than ever wrestling with this confusing condition. So stay tuned . . .

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.