Happy Second Birthday to this blog! I realized that I started blogging here in September 2016. It's been over two years since Vestibular Girl stumbled into the blogosphere. I will be continuing to post updates, tips, tricks, encouragement, and advice for vestibular patients.
I hope Autumn is finding you well (or as well as possible).
Blogging from my perspective as a vestibular patient.
Friday, October 5, 2018
Friday, September 28, 2018
Migraine Glasses...New Experiment
The other day, after I wrote my post immediately preceding this one, I mulled over my hesitation regarding moving towards a career in education due to my vestibular diagnosis on account of fluorescent lights making me very ill.
That just did not sit right with me. I would be carving myself out of a potential career path that I had planned on for years because of my vestibular diagnosis.
Then, last night, as I was lowering the brightness on my Mac and on my phone because I procrastinate on auto settings, I was struck by how blue light, including that from computer screens, seems to really worsen my migraines, and if I could just...filter it, it may help. I thought about Googling it. Surely, other people with vestibular issues work in careers with fluorescent lights.
I read about Theraspecs.
I mulled over the prescription price at $165.00. You'll quickly learn that to spend on my health, I tend to wait until the last possible moment to buy something necessary, whereas I will gleefully get yet another cinnamon-scented candle -- I know, priorities.
Anyways. I noticed how I do really well in natural light a lot of the time, but man. God-awful fluorescent lights. Blue lights. Screens. They make our lives easier, or they are supposed to...but they really do make vestibular patients' lives harder a lot of the time. I got my oil changed today, and the bay door was open at the mechanic (one reason I drive heinously far is to get to an oil change place - Valvoline - that lets me stay in my car most of the time, and it has lots of natural light coming in via open garage doors and windows in the event you need to wait...if you don't have vestibular hacks, you will soon if you're recently diagnosed).
The mechanic cheerfully instructed me to follow the yellow tape to wait in the waiting room while my car was up, and he actually almost grabbed me as I wobbled my way across to the waiting area. It struck me in that moment how the natural light was a lot easier for me to navigate, and once the big, industrial fluorescent lights overtook daylight above me, I started having issues.
So I sat on my dimmed phone in the waiting area with my sunglasses on, and typed in "migraine glasses."
ENTER:
Theraspecs FL-41
That just did not sit right with me. I would be carving myself out of a potential career path that I had planned on for years because of my vestibular diagnosis.
Then, last night, as I was lowering the brightness on my Mac and on my phone because I procrastinate on auto settings, I was struck by how blue light, including that from computer screens, seems to really worsen my migraines, and if I could just...filter it, it may help. I thought about Googling it. Surely, other people with vestibular issues work in careers with fluorescent lights.
I read about Theraspecs.
I mulled over the prescription price at $165.00. You'll quickly learn that to spend on my health, I tend to wait until the last possible moment to buy something necessary, whereas I will gleefully get yet another cinnamon-scented candle -- I know, priorities.
Anyways. I noticed how I do really well in natural light a lot of the time, but man. God-awful fluorescent lights. Blue lights. Screens. They make our lives easier, or they are supposed to...but they really do make vestibular patients' lives harder a lot of the time. I got my oil changed today, and the bay door was open at the mechanic (one reason I drive heinously far is to get to an oil change place - Valvoline - that lets me stay in my car most of the time, and it has lots of natural light coming in via open garage doors and windows in the event you need to wait...if you don't have vestibular hacks, you will soon if you're recently diagnosed).
The mechanic cheerfully instructed me to follow the yellow tape to wait in the waiting room while my car was up, and he actually almost grabbed me as I wobbled my way across to the waiting area. It struck me in that moment how the natural light was a lot easier for me to navigate, and once the big, industrial fluorescent lights overtook daylight above me, I started having issues.
So I sat on my dimmed phone in the waiting area with my sunglasses on, and typed in "migraine glasses."
ENTER:
Theraspecs FL-41
Yeah...not sexy-looking. But neither is puking because of vertigo.
I have an eye exam in a few weeks, and I am going to order a pair after I receive my updated prescription from an optometrist. I'll post pics and document my Therspecs over the next couple of months. I plan on using them in box stores - over the holidays. Ultimate test!
Monday, September 24, 2018
2018 Relapse; Thoughts and Updates
Hey everyone!
I hope the last portion of 2018 finds you well. As a whole, 2018 found me largely symptom-free until this month. I was very thankful that I was able to keep working and continue taking online classes. I am now 1.5 semesters away from graduating with my Bachelor's Degree in History. I am contemplating going on to get my Master's because it's always been a dream to do that.
I am finishing out about 2 years working as a dog walker. I started off very part-time at the end of 2016 because it seemed like a good, low-stress position while I figured out my diagnosis, and it has remained a lifesaver. I am still at that job, but I am working slightly more, for a total of about 30 hours a week. I have also found a job as a social media manager for an online company, and it only requires a little bit of time throughout the day and it is very helpful to have the extra money. I am by no means wealthy and I have had to re-asses my career goals. I planned to be a history teacher but I do not think that I could be in a building with fluorescent lights for more than a few minutes at a time on my good days, no time at all on my bad ones. There are options that I am looking into, such as migraine glasses which filter out blue light. But just the thought of fluorescent lights everywhere, such as in a school, makes me nauseated. It's kind of like life is choosing my career. If I could financially manage it, I would probably stay at my current position as a dog walker. It really makes a huge difference to be outside and feel sunshine. It forces me off my couch and to get exercise. The dogs keep me occupied on something other than how I feel. My chiropractor offered me some sage advice I've followed: use it or lose it!
That's right. He recommended I get out and walk and move my head around when I felt safe enough to do so to help my body compensate, and I largely credit that advice for as much success as I have had in having more good days than bad this year. I walk several miles a day now. Vestibular rehab was too expensive for me to do two years ago, but I turned my job into a form of it.
My life as a vestibular patient is a lot different than it used to be. I have lost relationships due to my health. I have also gained new, better ones.
As far as my illness maintenance goes, I just had my annual check-ins with my ENT and my Neurologist. Both docs kind of bounce me off of the other one; I don't really feel like either one wants to completely take on a chronic vestibular patient. However, I've learned that my ENT, while his bedside manner isn't great and I have complained about him previously on this blog, is not malicious and has had good general advice. I just think he is a jaded and abrupt type of personality, but he seems to know his stuff.
My symptoms did return with an utter vengeance this fall. It actually knocked the wind out of me emotionally and mentally. Our summer here went really long, and it didn't occur to me that fall was approaching quickly. I had been losing weight and really taking care of myself in general, but I really dropped the ball on my vestibular health this year. I had stopped all migraine preventative in the spring/summer, and I wasn't even thinking of managing my allergies. I remember thinking, man, I need to get my eyes checked and get new glasses. Then, within 10 days I was nearly puking with vertigo and barely able to work. It just reminds me how insane it is when these symptoms can come on severely and very, very suddenly. Tonight was especially scary. I had vertigo so bad I thought I was going to pass out, and my daughter needed help with her homework. My boyfriend ended up driving me to my chiropractor, and my daughter held my hand to steady me going in. I felt like such a burden. I took Imitrex and Xanax and a muscle relaxer. I am doing slightly better now than about 3 hours ago.
One thing I have to keep repeating to myself over and over and over:
I have vestibular migraines/MAV. I know what these scary symptoms are. I will have long stretches where I won't feel well, but these will not kill me. I know I won't pass out and I won't wreck my car. I have a cane to take with me to work and to use out and about. I will engage in self-care and take my meds. I will go to the chiropractor (frequently). I will blog more here while I am unwell.
My immediate reaction when symptoms come on suddenly is to cry and rage because I felt so good this year. I actually forgot I had migraines for a few months. That is/was a blessing. Even though I am discouraged tonight, that is still really awesome that I got through so much of the year feeling better.
Friday is my overdue eye exam. I know that that will make me slightly more comfortable because my eyes won't be strained with an old prescription. It usually helps my vestibular migraines a little bit. For now, I have my trusty cane out and leaning up against the recliner.
Tips for vestibular newbies:
I really, really want to recommend visiting VEDA to learn more about vestibular disorders and resources. I also strongly recommend seeing a chiropractor. My chiropractor is often my first-line self-care mechanism since I realized that neck pain was one of my vestibular migraine symptoms. Next, be sure your eye prescriptions are up-to-date. I waited way too long to go in for an exam this year because I was feeling better, and my eyes are feeling the strain right now. As far as exercise goes, I encourage you to be as physically active as is safe and possible for you. Maybe you walk to the mailbox with a cane everyday like I did for two months. Maybe you just go back and forth across your living room. I used to be a horseback rider and a runner. Now, I am a walker. I walk, walk, walk. I can't run, I can't ride, but I can sure walk. I'd also like to encourage not to get trapped in your head too much. I have been there, I am depressed right now writing this. But if you can write in your journal, or talk to a therapist or a friend, do it.
I will probably be writing more as this week unfolds because this is a good outlet for me when my symptoms are bad. Make sure to leave a comment with any vestibular questions, if you like or just to say hi! On a side note, I am contemplating making Youtube videos about my vestibular disorder.
I hope the last portion of 2018 finds you well. As a whole, 2018 found me largely symptom-free until this month. I was very thankful that I was able to keep working and continue taking online classes. I am now 1.5 semesters away from graduating with my Bachelor's Degree in History. I am contemplating going on to get my Master's because it's always been a dream to do that.
I am finishing out about 2 years working as a dog walker. I started off very part-time at the end of 2016 because it seemed like a good, low-stress position while I figured out my diagnosis, and it has remained a lifesaver. I am still at that job, but I am working slightly more, for a total of about 30 hours a week. I have also found a job as a social media manager for an online company, and it only requires a little bit of time throughout the day and it is very helpful to have the extra money. I am by no means wealthy and I have had to re-asses my career goals. I planned to be a history teacher but I do not think that I could be in a building with fluorescent lights for more than a few minutes at a time on my good days, no time at all on my bad ones. There are options that I am looking into, such as migraine glasses which filter out blue light. But just the thought of fluorescent lights everywhere, such as in a school, makes me nauseated. It's kind of like life is choosing my career. If I could financially manage it, I would probably stay at my current position as a dog walker. It really makes a huge difference to be outside and feel sunshine. It forces me off my couch and to get exercise. The dogs keep me occupied on something other than how I feel. My chiropractor offered me some sage advice I've followed: use it or lose it!
That's right. He recommended I get out and walk and move my head around when I felt safe enough to do so to help my body compensate, and I largely credit that advice for as much success as I have had in having more good days than bad this year. I walk several miles a day now. Vestibular rehab was too expensive for me to do two years ago, but I turned my job into a form of it.
My life as a vestibular patient is a lot different than it used to be. I have lost relationships due to my health. I have also gained new, better ones.
As far as my illness maintenance goes, I just had my annual check-ins with my ENT and my Neurologist. Both docs kind of bounce me off of the other one; I don't really feel like either one wants to completely take on a chronic vestibular patient. However, I've learned that my ENT, while his bedside manner isn't great and I have complained about him previously on this blog, is not malicious and has had good general advice. I just think he is a jaded and abrupt type of personality, but he seems to know his stuff.
My symptoms did return with an utter vengeance this fall. It actually knocked the wind out of me emotionally and mentally. Our summer here went really long, and it didn't occur to me that fall was approaching quickly. I had been losing weight and really taking care of myself in general, but I really dropped the ball on my vestibular health this year. I had stopped all migraine preventative in the spring/summer, and I wasn't even thinking of managing my allergies. I remember thinking, man, I need to get my eyes checked and get new glasses. Then, within 10 days I was nearly puking with vertigo and barely able to work. It just reminds me how insane it is when these symptoms can come on severely and very, very suddenly. Tonight was especially scary. I had vertigo so bad I thought I was going to pass out, and my daughter needed help with her homework. My boyfriend ended up driving me to my chiropractor, and my daughter held my hand to steady me going in. I felt like such a burden. I took Imitrex and Xanax and a muscle relaxer. I am doing slightly better now than about 3 hours ago.
One thing I have to keep repeating to myself over and over and over:
I have vestibular migraines/MAV. I know what these scary symptoms are. I will have long stretches where I won't feel well, but these will not kill me. I know I won't pass out and I won't wreck my car. I have a cane to take with me to work and to use out and about. I will engage in self-care and take my meds. I will go to the chiropractor (frequently). I will blog more here while I am unwell.
My immediate reaction when symptoms come on suddenly is to cry and rage because I felt so good this year. I actually forgot I had migraines for a few months. That is/was a blessing. Even though I am discouraged tonight, that is still really awesome that I got through so much of the year feeling better.
Friday is my overdue eye exam. I know that that will make me slightly more comfortable because my eyes won't be strained with an old prescription. It usually helps my vestibular migraines a little bit. For now, I have my trusty cane out and leaning up against the recliner.
Tips for vestibular newbies:
I really, really want to recommend visiting VEDA to learn more about vestibular disorders and resources. I also strongly recommend seeing a chiropractor. My chiropractor is often my first-line self-care mechanism since I realized that neck pain was one of my vestibular migraine symptoms. Next, be sure your eye prescriptions are up-to-date. I waited way too long to go in for an exam this year because I was feeling better, and my eyes are feeling the strain right now. As far as exercise goes, I encourage you to be as physically active as is safe and possible for you. Maybe you walk to the mailbox with a cane everyday like I did for two months. Maybe you just go back and forth across your living room. I used to be a horseback rider and a runner. Now, I am a walker. I walk, walk, walk. I can't run, I can't ride, but I can sure walk. I'd also like to encourage not to get trapped in your head too much. I have been there, I am depressed right now writing this. But if you can write in your journal, or talk to a therapist or a friend, do it.
I will probably be writing more as this week unfolds because this is a good outlet for me when my symptoms are bad. Make sure to leave a comment with any vestibular questions, if you like or just to say hi! On a side note, I am contemplating making Youtube videos about my vestibular disorder.
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