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.
Blogging from my perspective as a vestibular patient.
Monday, May 8, 2017
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.
Subscribe to:
Posts (Atom)