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.
Blogging from my perspective as a vestibular patient.
Friday, June 23, 2017
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.
Thursday, April 20, 2017
Relapse
Ah, the dreaded relapse. Going back over the past few months, my vestibular symptoms went away. I was taking Depakote which is used as a migraine preventative, but ceased it when I gained weight. We also had a very mild winter, which is unusual where I live, and I think the medication along with a lack of major weather changes contributed to my recovery from my vestibular symptoms. I was wondering about springtime, though. I live in tornado alley and we typically get a lot of severe storms and rapid weather changes in the spring and early summer. I was wondering if this would affect my vestibular symptoms.
It did. I have relapsed and have vertigo, visual changes, tinnitus, ear fullness and balance issues. I first started to feel crummy about two weeks ago. That is when the storms were beginning to roll through. I chalked it up to a cold. Then, my ears began bothering me. They began having the full feeling like I have water trapped inside them. This is when I began to wonder if my vestibular symptoms were returning. The visual changes have been the most distressing for me. When I am looking at something, my vision just seems off. I feel like I am looking at things through a funhouse mirror. I can still drive and make out things, but it's just a really weird feeling. Light and sound are hard for me. I was driving the other day and the sunlight was filtering through the trees and I got nauseated.
It has been quite distressing to be symptom-free for several months and then have it return suddenly. I knew this was a possibility but I was hoping I would not have a relapse story to tell.
I have another appointment with my ENT next Friday. My official diagnosis is vestibular neuritis, but I strongly feel I am having vestibular migraines. One reason I feel I am having migraines is the photosensitivity. Another reason is that I had a recovery period and now a relapse with the weather changes. My vestibular symptoms did not stay constant; they went away and came back. That is one of the key indicators of migraine-associated vertigo. Another reason is pain behind my eyes, and spots in my vision sometimes.
Despite my symptoms returning, I have been making myself walk every day. I have been averaging about a mile a day. I began taking Depakote again on my own a few days ago after I read it can lessen a migraine's severity. I am interested in Topamax or Propanolol as a preventative which I plan on discussing with my ENT.
In the meantime, I am focused on ignoring my gut reaction of staying home and sleeping all day or cancelling activities. I refuse to let my illness totally take over my life again. I don't know if this will work, but I have stayed working normally and participating in activities normally.
My plan to combat the relapse is:
A) speak to my ENT about taking a preventative that does not cause weight gain.
B) take Depakote ER for the next week to see if it helps lessen symptoms.
C) chiropractic twice a week (this does help me feel better in general, which is a win).
D) keep walking as much as possible.
E) keep my normal routine as much as possible (I had a bad two days where I could not fathom going into a grocery store with fluorescent lights, so I used their new delivery service).
F) eliminate some caffeine, salt, and processed foods over the next few weeks to see if that helps.
I will post updates when warranted. I am having tough symptoms today but storms are also rolling in and it is supposed to be rainy and stormy all day for the next 3 days. I anticipate I will have some issues today and this weekend.
By the way, if you feel you are having migraines of any kind, I strongly recommend Migraine Buddy. It's an app and you can add your own custom symptoms and relief methods. It helps you identify triggers and provides records that can be shared. I have learned through Migraine Buddy that barometric pressure changes are my main trigger, and that vision changes are one of my first symptoms before I start feeling dizzy. I also learned that chiropractic, rest, hot showers, wearing sunglasses, and Depakote are effective relief methods for me.
It did. I have relapsed and have vertigo, visual changes, tinnitus, ear fullness and balance issues. I first started to feel crummy about two weeks ago. That is when the storms were beginning to roll through. I chalked it up to a cold. Then, my ears began bothering me. They began having the full feeling like I have water trapped inside them. This is when I began to wonder if my vestibular symptoms were returning. The visual changes have been the most distressing for me. When I am looking at something, my vision just seems off. I feel like I am looking at things through a funhouse mirror. I can still drive and make out things, but it's just a really weird feeling. Light and sound are hard for me. I was driving the other day and the sunlight was filtering through the trees and I got nauseated.
It has been quite distressing to be symptom-free for several months and then have it return suddenly. I knew this was a possibility but I was hoping I would not have a relapse story to tell.
I have another appointment with my ENT next Friday. My official diagnosis is vestibular neuritis, but I strongly feel I am having vestibular migraines. One reason I feel I am having migraines is the photosensitivity. Another reason is that I had a recovery period and now a relapse with the weather changes. My vestibular symptoms did not stay constant; they went away and came back. That is one of the key indicators of migraine-associated vertigo. Another reason is pain behind my eyes, and spots in my vision sometimes.
Despite my symptoms returning, I have been making myself walk every day. I have been averaging about a mile a day. I began taking Depakote again on my own a few days ago after I read it can lessen a migraine's severity. I am interested in Topamax or Propanolol as a preventative which I plan on discussing with my ENT.
In the meantime, I am focused on ignoring my gut reaction of staying home and sleeping all day or cancelling activities. I refuse to let my illness totally take over my life again. I don't know if this will work, but I have stayed working normally and participating in activities normally.
My plan to combat the relapse is:
A) speak to my ENT about taking a preventative that does not cause weight gain.
B) take Depakote ER for the next week to see if it helps lessen symptoms.
C) chiropractic twice a week (this does help me feel better in general, which is a win).
D) keep walking as much as possible.
E) keep my normal routine as much as possible (I had a bad two days where I could not fathom going into a grocery store with fluorescent lights, so I used their new delivery service).
F) eliminate some caffeine, salt, and processed foods over the next few weeks to see if that helps.
I will post updates when warranted. I am having tough symptoms today but storms are also rolling in and it is supposed to be rainy and stormy all day for the next 3 days. I anticipate I will have some issues today and this weekend.
By the way, if you feel you are having migraines of any kind, I strongly recommend Migraine Buddy. It's an app and you can add your own custom symptoms and relief methods. It helps you identify triggers and provides records that can be shared. I have learned through Migraine Buddy that barometric pressure changes are my main trigger, and that vision changes are one of my first symptoms before I start feeling dizzy. I also learned that chiropractic, rest, hot showers, wearing sunglasses, and Depakote are effective relief methods for me.
Saturday, January 7, 2017
Just an Update Post Recovery
I'm happy to report that my vestibular symptoms have gone and I am now recovered from Labrynthitis, although my diagnosis is still kind of uncertain since the migraine medication (Depakote) has also helped tremendously with my symptoms. My doctors think I have been having migraines throughout my life, just not diagnosed until now. I have spots in my vision sometimes before a sick headache, that kind of thing. Anyways, whatever the cause of my vertigo and vestibular journey, I have joined VEDA as an online support group coordinator. I will post more information as that arises. Nothing else really to report. I am back at work and running on a treadmill 4 days a week. I am trying to eat healthier and what not. If anything changes I will post it here.
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