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.
Friday, June 23, 2017
Adjusting Expectations
I've come to realize that sometimes, an adjustment of expectations is needed when you are diagnosed with a vestibular disorder. For me, at least mentally, I've decided to do that over the past several weeks. If I expect to feel well all of the time (vestibular-wise), I am going to be severely disappointed and feel down on myself. However, if I expect to not feel well a lot, I find I am better able to cope with flare-ups, and if I do feel well it is a refreshing treat. Instead of being disappointed day after day when I am feeling ill, I have come to expect to feel ill a lot, and am pleasantly surprised when I'm not. Maybe that's confusing, I'm not sure. Hopefully that makes sense.
I am not saying to be negative, or to be down in the dumps about how well you feel. I am just saying to have realistic expectations in regards to your vestibular disorder. With my vestibular migraine diagnosis, my symptoms tend to flare up seemingly at the drop of a hat, sometimes randomly, and oftentimes when one of my proven triggers (such as barometric pressure changes) arrives.
Example:
I live in Tornado Alley, and that means lots of severe storms in the spring. That of course means a lot of barometric pressure changes, which in turn means the onset of vestibular migraine symptoms. I have learned to check the weather forecasts often. If storms are going to be rolling through, I have come to know that I will most likely not feel well, and it would be better on those days to do less. Then, when I experience onset of a vestibular migraine, I have already expected it and am not surprised. I just roll with it as much as possible.
I have had to learn over the past 10 months that I will not feel well 100% of the time as I used to (in regards to vestibular disorders). I had been getting down in the dumps when I was ill because I had unrealistic expectations. Lowering my expectations has helped me mentally cope with my vestibular disorder.
In other news, I stopped taking Cyproheptadine as a preventative on a daily basis. I found that it stopped working for me after a month or so of daily use. Now, I just take it during a period of barometric changes. Sometimes it really helps and other times it helps only a little. But that's ok. So now I am not on a daily preventative at all. That could change. I am going to revisit my neurologist in a few months.
I have also learned that my vestibular disorder, while extremely uncomfortable, is not going to kill me. I obviously don't drive if I have severe vertigo, which is not very often now. I now have more of a rocking sensation, blurred vision, tinnitus, neck pain, ear pain, and spots in my vision (migraine aura I've come to learn). I am usually able to cope with these symptoms. It is hard for me to shower sometimes as sticking my head back to wash my hair can make me dizzy. I have learned to really appreciate baths when I am not feeling well. I just hold onto the tub very carefully and move slowly getting in and out. I use a big plastic cup from the dollar store to help shampoo my hair. This tends to help minimize dizziness since I can hold my head still.
Oh and Zoloft. I am taking 75 mg of Zoloft now and that has really helped me cope with vestibular migraines and the accompanying anxiety and depression that comes with a chronic illness. My anxiety levels are way down, and when I have an episode, I don't get that cold adrenaline sweat as much. I am better able to shrug it off and be like "Hello, vestibular migraine, we meet again," instead of "OHMGOD I'M DONE, LIFE IS HORRIBLE."
I would also like to recommend (again) Chiropractic care. I cannot tell you how much it has helped me when I am having neck pain. There is a chiropractic chain called The Joint. They don't mess with insurance and they have a receptionist and a key tag scanner. You can either pay $39 per visit, or sign up for four visits a month for $69. Any visit past four is only $10. I have joined the monthly plan and it's worked great. They are open evenings and weekends and do not have appointments. You just walk in on a first-come-first-serve basis and scan your key tag. My average visit is less than 10 minutes. It's been tremendously helpful in managing my discomfort during a vestibular migraine.
I am thinking of writing a post that contains DO's and DON'Ts for vestibular patients. My goal with this blog is to put as much information about my own experience so that others who are just starting their vestibular journey may get some tips or info that helps them. I really hope someone out there reads this stuff and realizes they are not alone in their vertigo world.
I am not saying to be negative, or to be down in the dumps about how well you feel. I am just saying to have realistic expectations in regards to your vestibular disorder. With my vestibular migraine diagnosis, my symptoms tend to flare up seemingly at the drop of a hat, sometimes randomly, and oftentimes when one of my proven triggers (such as barometric pressure changes) arrives.
Example:
I live in Tornado Alley, and that means lots of severe storms in the spring. That of course means a lot of barometric pressure changes, which in turn means the onset of vestibular migraine symptoms. I have learned to check the weather forecasts often. If storms are going to be rolling through, I have come to know that I will most likely not feel well, and it would be better on those days to do less. Then, when I experience onset of a vestibular migraine, I have already expected it and am not surprised. I just roll with it as much as possible.
I have had to learn over the past 10 months that I will not feel well 100% of the time as I used to (in regards to vestibular disorders). I had been getting down in the dumps when I was ill because I had unrealistic expectations. Lowering my expectations has helped me mentally cope with my vestibular disorder.
In other news, I stopped taking Cyproheptadine as a preventative on a daily basis. I found that it stopped working for me after a month or so of daily use. Now, I just take it during a period of barometric changes. Sometimes it really helps and other times it helps only a little. But that's ok. So now I am not on a daily preventative at all. That could change. I am going to revisit my neurologist in a few months.
I have also learned that my vestibular disorder, while extremely uncomfortable, is not going to kill me. I obviously don't drive if I have severe vertigo, which is not very often now. I now have more of a rocking sensation, blurred vision, tinnitus, neck pain, ear pain, and spots in my vision (migraine aura I've come to learn). I am usually able to cope with these symptoms. It is hard for me to shower sometimes as sticking my head back to wash my hair can make me dizzy. I have learned to really appreciate baths when I am not feeling well. I just hold onto the tub very carefully and move slowly getting in and out. I use a big plastic cup from the dollar store to help shampoo my hair. This tends to help minimize dizziness since I can hold my head still.
Oh and Zoloft. I am taking 75 mg of Zoloft now and that has really helped me cope with vestibular migraines and the accompanying anxiety and depression that comes with a chronic illness. My anxiety levels are way down, and when I have an episode, I don't get that cold adrenaline sweat as much. I am better able to shrug it off and be like "Hello, vestibular migraine, we meet again," instead of "OHMGOD I'M DONE, LIFE IS HORRIBLE."
I would also like to recommend (again) Chiropractic care. I cannot tell you how much it has helped me when I am having neck pain. There is a chiropractic chain called The Joint. They don't mess with insurance and they have a receptionist and a key tag scanner. You can either pay $39 per visit, or sign up for four visits a month for $69. Any visit past four is only $10. I have joined the monthly plan and it's worked great. They are open evenings and weekends and do not have appointments. You just walk in on a first-come-first-serve basis and scan your key tag. My average visit is less than 10 minutes. It's been tremendously helpful in managing my discomfort during a vestibular migraine.
I am thinking of writing a post that contains DO's and DON'Ts for vestibular patients. My goal with this blog is to put as much information about my own experience so that others who are just starting their vestibular journey may get some tips or info that helps them. I really hope someone out there reads this stuff and realizes they are not alone in their vertigo world.
Sunday, June 4, 2017
You CAN Learn to Live with a Vestibular Disorder
I've posted before on this topic, but it's something I felt I wanted to post about again. You can learn to live with a vestibular disorder. It's of the utmost importance that you do not let your vestibular disorder ruin your life. This includes the anxiety we all feel because we can't trust our bodies in regards to balance. The more ground you give up to your vestibular disorder, the worse off you will be. I am not saying you are going to be able to keep doing what you normally did before experiencing your vestibular symptoms. Three years ago, I was the golden child, a well-paid restaurant manager at a large company. I can't do that job anymore. I could bump into someone, drop a tray, or fall. I couldn't bear if my vestibular disorder caused me to hurt someone. So, I'm kind of consigned to menial jobs which has been a huge discouragement for me. Career blasted away, back in school at 32...
But, you have to roll with the punches when you have a vestibular disorder. You will have to re-arrange your life. I take online courses so I can still work at least part-time, and have time at home. Online classes also work fabulously for the days I am not feeling well. I can do schoolwork from the couch at home. I am getting to finish the History degree I've always wanted to complete, and I'm contemplating grad school. I am working on a book. I get to spend time with my family. I have taken up yoga, and have found it to be very grounding. Counseling is helping me. Medication is helping me. (Anti-depressants are HUGE in reducing anxiety. I also have Xanax for panic attacks, and prescribed sleeping pills. No sleep = vestibular symptom flare. I am a natural, organic eater and so this has been a massive transition for me to taking multiple medications...depressed me a bit, to be honest. But the meds do help me).
I wanted to encourage anyone out there who is feeling down about their vestibular disorder that you can and will have a life again. It might look different, but it will happen if you don't give up. You might need a cane (as I do occasionally), and you might not be able to watch certain TV shows or movies with a lot of camera movement (think Blair With or Starz show Black Sails...great show, but the rocking motion of the camera...bleh). You may need to modify your diet. I have started an overhaul of my eating, following a high-protein, no dairy, low-carb diet. If you have something like Meniere's, you'll probably be on a low-salt diet. It all depends.
On a side note, (I know this post is all over the place, sorry. I didn't really have cohesive thought process when I started it.), tracking your symptoms can help identify triggers for your symptoms. I use the Migraine Buddy app, even before I was diagnosed with vestibular migraines. Even if you don't have migraines, it is useful for tracking vestibular symptoms such as vision changes, neck pain, ear pain, and you can add your own symptoms. I have identified processed foods and weather changes as my primary vestibular triggers. Maybe your triggers are stress, or something else. It's a highly useful app, in my opinion.
Possibly the biggest thing I can tell you the reader is to keep doing things you would normally do as much as possible. For example, there is a local festival today that I've been looking forward to for weeks. I am not feeling 100% today. I've been dizzy since yesterday. I know I am still able to drive, and I am going to make myself go to the festival. Otherwise, I'm letting my vestibular disorder win.
But, you have to roll with the punches when you have a vestibular disorder. You will have to re-arrange your life. I take online courses so I can still work at least part-time, and have time at home. Online classes also work fabulously for the days I am not feeling well. I can do schoolwork from the couch at home. I am getting to finish the History degree I've always wanted to complete, and I'm contemplating grad school. I am working on a book. I get to spend time with my family. I have taken up yoga, and have found it to be very grounding. Counseling is helping me. Medication is helping me. (Anti-depressants are HUGE in reducing anxiety. I also have Xanax for panic attacks, and prescribed sleeping pills. No sleep = vestibular symptom flare. I am a natural, organic eater and so this has been a massive transition for me to taking multiple medications...depressed me a bit, to be honest. But the meds do help me).
I wanted to encourage anyone out there who is feeling down about their vestibular disorder that you can and will have a life again. It might look different, but it will happen if you don't give up. You might need a cane (as I do occasionally), and you might not be able to watch certain TV shows or movies with a lot of camera movement (think Blair With or Starz show Black Sails...great show, but the rocking motion of the camera...bleh). You may need to modify your diet. I have started an overhaul of my eating, following a high-protein, no dairy, low-carb diet. If you have something like Meniere's, you'll probably be on a low-salt diet. It all depends.
On a side note, (I know this post is all over the place, sorry. I didn't really have cohesive thought process when I started it.), tracking your symptoms can help identify triggers for your symptoms. I use the Migraine Buddy app, even before I was diagnosed with vestibular migraines. Even if you don't have migraines, it is useful for tracking vestibular symptoms such as vision changes, neck pain, ear pain, and you can add your own symptoms. I have identified processed foods and weather changes as my primary vestibular triggers. Maybe your triggers are stress, or something else. It's a highly useful app, in my opinion.
Possibly the biggest thing I can tell you the reader is to keep doing things you would normally do as much as possible. For example, there is a local festival today that I've been looking forward to for weeks. I am not feeling 100% today. I've been dizzy since yesterday. I know I am still able to drive, and I am going to make myself go to the festival. Otherwise, I'm letting my vestibular disorder win.
Monday, May 8, 2017
MRI Results Update
My MRI results came back clear after a few days of anxiety. This would seem to confirm a vestibular migraine diagnosis. I also forgot to take my migraine preventative, Cyproheptadine, for a couple of days because I was feeling better, and my vertigo and vision changes came back. Once I started taking the Cyproheptadine again it has improved dramatically. So all in all, I think my dx of Migraine-Associated Vertigo is correct. I probably did have Labrynthitis/Vestibular Neuritis last fall, and that probably put me on the more-likely list of having vestibular issues from now on.
I have thought back over my late teens and twenties and I can see migraine symptoms very clearly. I had a lot of anxiety in college because of vision changes like aura that would happen around fluorescent lights. I just stewed about it and thought I had a brain tumor back then but the scans came back clear. So I just assumed I was having "spells" of some sort, and they would cluster together. I now realize I was having migraine aura symptoms. It took me a long time to get diagnosed because I don't have migraines all the time, and I do not have the classic one-sided headache. It has been a relief to figure out I am having a type of migraine. It took getting vertigo to figure this out, so I am a little grateful to past 8 months of difficulty to finally find an answer to A) weird symptoms I've had most of my adult life and B) an explanation for the vertigo. My migraine preventatives get rid of the majority of my symptoms.
My symptoms are exacerbated by allergies and storms. For now, my doctor wants me to keep taking a low dose of Depakote in addition to the Cyproheptadine since I have responded so well to both medications. I have also been prescribed sleeping pills, which I hate taking. However, I think the benefits outweigh the risks. My vestibular/migraine symptoms are much worse if I do not sleep well. Taking sleeping pills ensures rest each night. I am sure they are not great for you but they are like a preventative for me.
I have also been seeing a CBT for counseling. I had to go through a grieving process about my vestibular system. Even though I am taking multiple medications to manage my condition, it is still difficult to deal with vestibular symptoms since they can come on so quickly and become quite severe. The medications solve about 75% of my symptoms. I can still become surprised by the vertigo or light-headedness, though.
The best therapy for me has been yoga and plain old walking. I walk a couple of miles each day. I probably look goofy because I will turn my head for a few seconds one way as I am walking, then forward, then to the other side, then up slightly, then down at the sidewalk in front of me. I practice these exercises and they helped me. Walking a lot has helped me even more than vestibular rehab, and it's a lot cheaper and more convenient. I know vestibular rehab is very effective for the majority of people. I did not like it and my insurance did not cover it very much so the cost was high. Walking has been good for my physically and mentally. I get to be outside and get low-impact exercise. I also make myself do things that make me nervous such as going grocery shopping even if I am feeling a bit off. I never do things like driving, though, if I have too severe of symptoms, although that hasn't happened since last fall.
I have thought back over my late teens and twenties and I can see migraine symptoms very clearly. I had a lot of anxiety in college because of vision changes like aura that would happen around fluorescent lights. I just stewed about it and thought I had a brain tumor back then but the scans came back clear. So I just assumed I was having "spells" of some sort, and they would cluster together. I now realize I was having migraine aura symptoms. It took me a long time to get diagnosed because I don't have migraines all the time, and I do not have the classic one-sided headache. It has been a relief to figure out I am having a type of migraine. It took getting vertigo to figure this out, so I am a little grateful to past 8 months of difficulty to finally find an answer to A) weird symptoms I've had most of my adult life and B) an explanation for the vertigo. My migraine preventatives get rid of the majority of my symptoms.
My symptoms are exacerbated by allergies and storms. For now, my doctor wants me to keep taking a low dose of Depakote in addition to the Cyproheptadine since I have responded so well to both medications. I have also been prescribed sleeping pills, which I hate taking. However, I think the benefits outweigh the risks. My vestibular/migraine symptoms are much worse if I do not sleep well. Taking sleeping pills ensures rest each night. I am sure they are not great for you but they are like a preventative for me.
I have also been seeing a CBT for counseling. I had to go through a grieving process about my vestibular system. Even though I am taking multiple medications to manage my condition, it is still difficult to deal with vestibular symptoms since they can come on so quickly and become quite severe. The medications solve about 75% of my symptoms. I can still become surprised by the vertigo or light-headedness, though.
The best therapy for me has been yoga and plain old walking. I walk a couple of miles each day. I probably look goofy because I will turn my head for a few seconds one way as I am walking, then forward, then to the other side, then up slightly, then down at the sidewalk in front of me. I practice these exercises and they helped me. Walking a lot has helped me even more than vestibular rehab, and it's a lot cheaper and more convenient. I know vestibular rehab is very effective for the majority of people. I did not like it and my insurance did not cover it very much so the cost was high. Walking has been good for my physically and mentally. I get to be outside and get low-impact exercise. I also make myself do things that make me nervous such as going grocery shopping even if I am feeling a bit off. I never do things like driving, though, if I have too severe of symptoms, although that hasn't happened since last fall.
Thursday, May 4, 2017
Differing Opinion, MRI Anxiety, Irritating Doctors
As with most vestibular patients I have heard of, navigating the medical system can be quite complex, confusing and frustrating. I was very fortunate early on that a canny Urgent Care doctor diagnosed me with a vestibular disorder.
Since then, I have had CT scans done last August during my initial symptom onset, along with bloodwork and a complete physical to rule out stroke, tumor, and MS. Everything came back normal. My symptoms came back a few weeks ago and, and based on my own research I decided to seek further testing because Vestibular Migraines was one of the possibilities floating around last fall. I strongly feel that I am having Vestibular Migraines and that those are causing my vertigo, balance issues and other symptoms. My GP did not want to diagnose me with migraines, though, because I don't have the one-sided head pain. My pain is normally behind my eyes in bright light, and in my neck and base of skull. Sometimes it is on my forehead and I have ear discomfort.
I went to a neurologist for the first time last week, and he immediately diagnosed me with atypical migraine with aura/vestibular migraine with aura. He said all of my symptoms match a vestibular migraine with aura. The temporary wavy lines and spots in my vision, neck pain, blurred vision, vertigo, tinnitus and ear discomfort were red flags to him that I was having a vestibular migraine with aura, or having an atypical migraine with aura that was exacerbating my vestibular system. He prescribed me Cyproheptadine 4mg up to 3x/day. Cyproheptadine is an old anti-histamine that is used sometimes as a migraine preventative. I have been taking it just over a week and have noticed my allergies have improved and my vestibular symptoms are not as severe (it's been raining cats and dogs for the past week, so I've had vestibular flare ups almost every day, but they are less severe than a couple weeks ago).
After doing more research, I picked up an OTC steroid nasal spray, Walgreens' brand version of Nasacort. I have been using this once a day in the mornings and my allergies have improved dramatically and my ears hurt less.
I am still taking 375 mg of Depakote (half of a 750mg pill) at night because it seemed to help break my symptoms last fall, and it is used as a migraine preventative as well. I think that has also been helping.
Last Friday, I saw my ENT for the second time. He seemed irritated to see me back. I was immediately put off by his manner, which sort of surprised me. I don't have many options for ENTs because my insurance only covers a couple. He listened to my symptoms and agreed with the neurologist about migraines, but he wasn't sure what type. He prescribed me Sumatriptan to take if I was having severe migraine symptoms as an abortive medicine. He also ordered an MRI "to rule out a brain tumor." I told him the Urgent Care doc and my GP had looked at my CT scans last fall and said they were normal. My ENT sort of snidely replied that "maybe there was a tumor they missed, or maybe nothing at all was missed." He seemed to enjoy my discomfort and anxiety at the brain tumor bit.
Could the CT scans have missed something? I was both frightened and slightly offended with my ENT's demeanor. He seemed to enjoy the "guess we'll have to wait and see if anything frightening turns up" game. I told him he was scaring me, and that I was becoming very upset. He then told me the chances of a malignant brain tumor were small, but that it wouldn't hurt to check. I left his office feeling scared and anxious and mad.
I had my MRI yesterday, both with dye contrast and without. The MRI place told me that they would let me know after my scan if anything dramatically wrong was found to alleviate my anxiety. I was really happy about this. I did my MRI which took about 45 minutes and then got dressed and waited for my results. The technician came back and said my ENT doctor doesn't let the MRI technicians tell anything to patients, good or bad. It has to be him, the ENT doctor. I told the technician that I was having massive anxiety, and just wanted to know if I had some sort of awful brain tumor or not. The technician said "sorry, your doctor told us we can't tell any of his patients good or bad news, or anything about their scans. He will call you with the results." Again, I felt this ENT was playing with me, or just being a jerk. On the flipside, maybe my ENT has had bad results with non-doctor MRI techs telling people the wrong thing and that's why he is not budging. No matter the issue, I felt this ENT doctor was irritated with me, and I won't be going back to see him. I am supposed to hear my results back today at some point. My ENT (soon to be former ENT) suggested that I start seeing the neurologist for further issues. I was like, being dismissed for being sick. Whatever, screw him. He hasn't helped me hardly at all, other than diagnosing me with a vestibular disorder for sure, and referring me to Vestibular rehab which was a waste of time and money. I did better walking on my own and doing yoga exercises to help with my balance.
So now I am sick with worry and exhausted from fear about my MRI because the ENT scared me. I know the probability of something really bad is very small, but the way the doctor handled it was cold and offensive. I will update this post when I get my results back.
Update 4:50 pm - Despite being told I would have my results phoned to me by the end of business today, I have not heard anything. I was told if I went through the hospital, it would cost me less but that results would take up to a week, so I elected to pay $200 more out of pocket to have an MRI done at a private clinic so my results would be given to me within one business day. I have called my ENT's office 3 times today and politely asked when my results would be available so I wouldn't miss the phone call. I was told flatly that they "were busy." I was sent to a voice message system which promised a call back from the office same business day as the message was left. I just requested to be called to let me know when they would be calling about my MRI results. Nothing. I am feeling like I am at the mercy of an uncaring staff. I recognize that I am overly anxious about my results, and am probably driving the office crazy. However, I was really traumatized by the doctor's manner last week and I am irritated that I was told I would have my results today, and have not gotten them. I no doubt sound like I am whining but this is really weighing on me right now.
Since then, I have had CT scans done last August during my initial symptom onset, along with bloodwork and a complete physical to rule out stroke, tumor, and MS. Everything came back normal. My symptoms came back a few weeks ago and, and based on my own research I decided to seek further testing because Vestibular Migraines was one of the possibilities floating around last fall. I strongly feel that I am having Vestibular Migraines and that those are causing my vertigo, balance issues and other symptoms. My GP did not want to diagnose me with migraines, though, because I don't have the one-sided head pain. My pain is normally behind my eyes in bright light, and in my neck and base of skull. Sometimes it is on my forehead and I have ear discomfort.
I went to a neurologist for the first time last week, and he immediately diagnosed me with atypical migraine with aura/vestibular migraine with aura. He said all of my symptoms match a vestibular migraine with aura. The temporary wavy lines and spots in my vision, neck pain, blurred vision, vertigo, tinnitus and ear discomfort were red flags to him that I was having a vestibular migraine with aura, or having an atypical migraine with aura that was exacerbating my vestibular system. He prescribed me Cyproheptadine 4mg up to 3x/day. Cyproheptadine is an old anti-histamine that is used sometimes as a migraine preventative. I have been taking it just over a week and have noticed my allergies have improved and my vestibular symptoms are not as severe (it's been raining cats and dogs for the past week, so I've had vestibular flare ups almost every day, but they are less severe than a couple weeks ago).
After doing more research, I picked up an OTC steroid nasal spray, Walgreens' brand version of Nasacort. I have been using this once a day in the mornings and my allergies have improved dramatically and my ears hurt less.
I am still taking 375 mg of Depakote (half of a 750mg pill) at night because it seemed to help break my symptoms last fall, and it is used as a migraine preventative as well. I think that has also been helping.
Last Friday, I saw my ENT for the second time. He seemed irritated to see me back. I was immediately put off by his manner, which sort of surprised me. I don't have many options for ENTs because my insurance only covers a couple. He listened to my symptoms and agreed with the neurologist about migraines, but he wasn't sure what type. He prescribed me Sumatriptan to take if I was having severe migraine symptoms as an abortive medicine. He also ordered an MRI "to rule out a brain tumor." I told him the Urgent Care doc and my GP had looked at my CT scans last fall and said they were normal. My ENT sort of snidely replied that "maybe there was a tumor they missed, or maybe nothing at all was missed." He seemed to enjoy my discomfort and anxiety at the brain tumor bit.
Could the CT scans have missed something? I was both frightened and slightly offended with my ENT's demeanor. He seemed to enjoy the "guess we'll have to wait and see if anything frightening turns up" game. I told him he was scaring me, and that I was becoming very upset. He then told me the chances of a malignant brain tumor were small, but that it wouldn't hurt to check. I left his office feeling scared and anxious and mad.
I had my MRI yesterday, both with dye contrast and without. The MRI place told me that they would let me know after my scan if anything dramatically wrong was found to alleviate my anxiety. I was really happy about this. I did my MRI which took about 45 minutes and then got dressed and waited for my results. The technician came back and said my ENT doctor doesn't let the MRI technicians tell anything to patients, good or bad. It has to be him, the ENT doctor. I told the technician that I was having massive anxiety, and just wanted to know if I had some sort of awful brain tumor or not. The technician said "sorry, your doctor told us we can't tell any of his patients good or bad news, or anything about their scans. He will call you with the results." Again, I felt this ENT was playing with me, or just being a jerk. On the flipside, maybe my ENT has had bad results with non-doctor MRI techs telling people the wrong thing and that's why he is not budging. No matter the issue, I felt this ENT doctor was irritated with me, and I won't be going back to see him. I am supposed to hear my results back today at some point. My ENT (soon to be former ENT) suggested that I start seeing the neurologist for further issues. I was like, being dismissed for being sick. Whatever, screw him. He hasn't helped me hardly at all, other than diagnosing me with a vestibular disorder for sure, and referring me to Vestibular rehab which was a waste of time and money. I did better walking on my own and doing yoga exercises to help with my balance.
So now I am sick with worry and exhausted from fear about my MRI because the ENT scared me. I know the probability of something really bad is very small, but the way the doctor handled it was cold and offensive. I will update this post when I get my results back.
Update 4:50 pm - Despite being told I would have my results phoned to me by the end of business today, I have not heard anything. I was told if I went through the hospital, it would cost me less but that results would take up to a week, so I elected to pay $200 more out of pocket to have an MRI done at a private clinic so my results would be given to me within one business day. I have called my ENT's office 3 times today and politely asked when my results would be available so I wouldn't miss the phone call. I was told flatly that they "were busy." I was sent to a voice message system which promised a call back from the office same business day as the message was left. I just requested to be called to let me know when they would be calling about my MRI results. Nothing. I am feeling like I am at the mercy of an uncaring staff. I recognize that I am overly anxious about my results, and am probably driving the office crazy. However, I was really traumatized by the doctor's manner last week and I am irritated that I was told I would have my results today, and have not gotten them. I no doubt sound like I am whining but this is really weighing on me right now.
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