It's been a while since I last wrote.... and I am sorry to report that it isn't because I have found a magic pill that has taken away all of my difficult symptoms.... No, it is merely out of the lack of motivation to pick up my laptop and tap on the keys. It seems I have been in an endless funk for the past month. Hell, for the past few years really. I am feeling stuck actually. I feel as if I'm stuck at a theater watching an awful movie that I can't walk out on. One that you had your hopes up that would really be great, but instead you're regretting paying the $20 to get in to see the crap fest. Yup, that's where I am. Pull up a seat and I will tell you the story line:
Late last month I went to see a Dr. over an hour a way who specializes in dizzy conditions - Mainly inner ear problems. His office was full of special equipment and fun machines that spun you round and round until you were seriously dizzy. When I first sat in this particular fun chair the doctor read over my history and made some comments about my illness prior to getting dizzy in 2006 and the birth control I took one day prior to the actual episode happening. Then the prozac and feeling better in between until I stopped it, restarted after having my son and getting trampled on by migraines, visual symptoms (VS) and then 4 years later getting dizzy again. He told me from the get-go that it sounds like migraines to him and not an inner ear thing, but that he would test me with the best testing equipment they have available on the market "The stuff they test astronauts with before they send them into space!" (His words).
The doctor left the room and his assistant actually did all of the work. He strapped me into the chair and put these goggles on my head. He has me following a moving dot on a screen and then put something on the goggles to make it go completely dark. He told me the chair was going to start spinning for a little while and that I would get dizzy and once it stopped I would feel like I was going in the other direction. Wow, that was awful!!! I have to say though, as bad as that was, it wasn't near as bad as the caloric testing with air going into your ear. Yes, both make you terribly dizzy, but I felt more secure being strapped into a chair in an upright sitting position. After that test was done, the assistant had me do some other things that required the goggles, then without the goggles and standing. I waited while he was doing some paperwork before we went on to another test in another room. Before we got up to go to the other room he looked at me and said "I can tell you now, you have nothing wrong with your ears. They are functioning quite well. Higher than well." That was a relief. But still confusing as to why the first ENT told me I had bilateral vestibulopathy.
So, in the next room they did some test that looks for brainstem issues. After this they did a hearing test. I learned that my right ear canal is shaped differently than my left lol. It was harder for him to get the equipment in my ear. None the less he succeeded and I did really well on that test too.
Lastly, I was taken into another room where the doctor came back in. He told me they were going to do one last test which was super advanced. They put on a different pair of goggled, more like glasses with little cameras on them. I was instructed to stare at one spot on the wall and that the assistant was going to push my head around, but to keep my eyes on the spot on the wall. Needless to say, that test was good. The doctor said I was well above the average for my inner ear testing and said there is nothing wrong my ears, just as the assistant had mentioned earlier. He told me it is a classic case of migraines and that it has a hormonal component to it and that I should speak to my ob/gyn about it. (Funny enough I had seen her the day before and was asking her about it).
So, I left his office feeling like I was on top of the world. For two years I lived in fear under a diagnoses that is, to me and most, a life sentence. With Bilateral Vestibulopathy you will always have damaged ears, you just have to help your brain rewire itself to regain balance. You usually will never regain 100% of your balance. So yes, getting a new diagnosis made me feel on top of the world. I felt like I was going to get a second chance at this life. A chance to really be a mom and a wife without these dreaded migraines and all of the dizziness......
I returned to my ob/gyn, with my husband =), and she went over some blood work she had me do. She told me all of my blood work looked normal and it has no indication that it's my hormones that are the issues. My husband stuck up for me and told her what he has witnessed with me getting dizzy the same day I start my period, or certain times during the month. She had no answers. Then I asked her "What if I have just become SENSITIVE to my hormones... even though they are normal?" That was the million dollar question. Of course there is no straight answer... in fact she really didn't have an answer except that it may be possible. She was really hesitant to even mention what she did which was to take a medication that they normally give women with endometriosis to completely stop a woman's cycle to see if it helps with migraines. She said it would immediately put me into a temporary menopause and that is the side effect profile... menopause symptoms - hot flashes, night sweats, dizziness.... hmmmm sounds like me already, both myself and my husband said this at the same time. Any ways, I was told to think on it and if I decide to do it, let her know. I declined on the birth control option as I feel that screwed me up in 2006 and I really don't want to go through that again.
So here's the thing... You can equip yourself with all of the ammo in the world, but if you stand in the middle of the war and you don't use any of it, you won't last too long, right? So since late last month I have been doing exactly that. I stayed on my small dose of Verapamil just praying for something to change. How can I expect anything to change if I didn't change it? I've been literally living day to day, not looking forward to any of it. I've been sitting in that lonely seat in my very own theater watching my very own movie play before my eyes all the while not changing a thing.
Several days ago I came across a website called Mvertigo.org - it's a website for Migraine Associated Vertigo patients. I didn't quite fit that diagnosis in a sense that I don't get true spinning vertigo. The term MAV has been used loosely when it comes to migraine so I won't use the term MAV, but I will say Vestibular Migraine fits me very well. In fact every single symptom fits me, down to the visual snow as it seems quite a few have too. Some of the pieces started coming together for me. I started thinking back to 2006 right before all of this happened and could see signs of the symptoms of migraines, like the light sensitivity, fluorescent light issues, vision issues, rubber band feeling all after a very stressful few months. The Prozac made it better (which a lot of SSRI's can help with migraines). The issues presenting again after I went off of the medicine, got worse after starting them again and switching meds which presented with the actual painful migraines and visual snow. As the time goes on it keeps getting worse. The best I have ever felt was when I was on 120mg of the Verapamil. For the past few months I had taken myself down to 40mg a day.... yup, that is an infant dose. No wonder I have been getting horrible migraines daily and awful dizziness. I am motion sensitive, sound sensitive, light sensitive, etc. My brain's threshold is none existent at the moment. So, for the past few days I have increased the dose by 1/2 a mg and will work my way up to an additional 40mg a day. Eventually I want to get back up to the 120mg a day, but I have to do this slowly because I have such low blood pressure. I know some doctors day the verapamil typically doesn't lower already low blood pressure, which makes no sense to me since that is the idea behind the medicine. It did actually lower mine, but fortunately I had no symptoms from it.
So why am I depressed? I'm not sure... Maybe because it's already Christmas. It's another year passing and I am still in the same place I was years ago. Desperate for a cure.... in pain... suffering... not enjoying life. The symptoms torture me some days and make it hard to ignore. Ive been debating on trying another medication, or adding another medication. The thing is... there are no doctors around me who know anything about Vestibular migraine. It's so rare, I would almost have to travel out of state to find someone.
So this is where I am now. Hopefully by this time next month I will be somewhat improved... at least maybe a break or two with my migraines?
