So confused

I usually don't get this down in the dumps anymore.... I mean sometimes I do, but usually my husband is here to console me or I just kind of suck it up and move on. My husband isn't here at the moment and I am just as blue as one can be. In light of the recent tinnitus stuff and me tapering off the lamotrigine I just don't know what to do anymore. Part of me says to give it another go and just see if the tinnitus happens again and if so then discontinue it and move on. BUT.... I am just facing the reality of this disorder.... there is NO cure! If I get even a little bit better with a certain medicine it's by chance. I am just feeling really down about my future. I can't look ahead to anything because I don't know where I will be then in terms of progression of this illness. Part of me feels like I would be better off not being here... I know that isn't rational and I would never hurt myself... it's just my broken brain. I can't help but look around me at all of the horrible people in this world who have no issues and here I am trying my hardest to function and wouldn't hurt a fly.... I just don't get it.


The brain is still a mysterious organ for us.... I just pray that soon there is an answer for me and a treatment....

Discontinuing Lamotrigine

So about 3 weeks ago I started the lamotrigine. I had a lot of anxiety over it due to the rash it can give you, Steven Johnson. The first few days I experienced itching and tiredness. Then around the fourth day, a few hours after taking the morning dose of 12.5mg (25mg split in 1/2) I would get an increase in energy. This lasted for the first two weeks. During the three weeks on it I noticed my mild tinnitus was getting louder. Last week I woke up in the middle of the night to my ear screaming. I immediately had a reaction of anxiety and once I calmed down I was able to fall back asleep. The loud tinnitus lasted for about three days and then seemed to calm down to a less noticeable ringing (louder than my normal though). I wasn't too sure what caused the initial ringing so I just passed it off as an isolated incident. Then last night the same thing happened. I woke up around 4am to my right ear screaming so loud. Again the anxiety hit, but I talked myself out of it. I did pull up Doctor Google and found that it's a common side effect of the Lamotrigine for some and for some it remains permanent even after discontinuing the medication. I did see my doctor two days ago, but failed to mention the tinnitus even though it had happened a week earlier. I did tell him about the itching and he reassured me that I would not experience any side effects on such a low dose and that it was just anxiety. I cried in my car that day because he made me feel so stupid. Any suggestion I made about possible treatments were turned down. Anyways, he told me to increase the med which I was going to do yesterday. I am glad I didn't, because that was the night of the 2nd tinnitus episode.

 I always feel worse at night and my only guess is because the drug's plasma concentrations are thinning and my body wants more medicine. I know that sounds crazy, but I am VERY sensitive to MOST medicines. Usually migraine patients are and it isn't just an excuse. The faster the medical community listens to their patients saying this - the easier patient-doctor communication and trust will be. Doctors like to put you on a medication that they have faith in because they have seen it work. Vestibular Migraine patients however (usually on their 5th+ medication trial) are scared about side effects.. usually worsening of their symptoms. Doctors become frustrated because we want to take it as slow as possible. I was told my appointment was a waste because I was still taking such a low dose. To me it wasn't a waste because I was going there for reassurance. It became a waste once he said that to me though. It appeared that my last appointment was a waste as well and so were the 2 months that I went without seeing him in between visits because I could have spent that time searching for a more understanding and compassionate doctor.

So here I sit with a little less than 12.5 mg of lamotrigine wearing off in my system and a high pitched- low-level hissing in my right ear. Every once in a while a movement will throw me off balance, but I recalibrate myself. I begin to feel sorry for myself as well, but I try to think positive. It's hard to make plans with anyone because I have no idea what tomorrow brings for me. If I wake up dizzy in the middle of the night, that usually indicated that I will be extremely off balanced in the morning which ruins my day. I hear stories of some people moving on with life and just living with the dizziness. I can't.... I absolutely can not! I am determined to figure out what the hell is going on with me and fix it!! I refuse to take this lightly. There is no reason why I would wake up one morning and my world be changed. Something happened and it has a solution. I just need to find a doctor who is willing to work with me. A doctor who is patient and trusts me so that I can trust him/her. If he/she is out there... I will find them....

Been a while

It has been quite some time since I last posted. The 2nd phase of the Visual Snow study has commenced in Munich, Germany. We are currently awaiting those results. Professor Goadsby is in the process of starting up the 3rd phase of the Visual Snow study at Kings College Hospital in London. We are currently raising funds to hire a full time researcher www.gofundme.com/visual-snow.

Update on me-

I am still dealing with daily visual snow symptoms, but on top of that I am dealing with vestibular issues. I was first diagnosed with bilateral vestibulopathy and then later diagnoses with Vestibular Migraines. At the time of testing when I was diagnosed with vestibular migraine I had ZERO weakness in either ear. I was told that I most certainly have no issues physically with my inner ears, but that it's the migraines which causes the dizziness. That diagnosis was music to my ear, but it still leaves me questioning the diagnosis's. What if my most recent diagnosis was wrong? I should just let it go, but it's tough. I wouldn't be able to do anything anyways. The migraine variant is the best outcome because I can continue on with the treatment I am on now, Verapamil and Lamotrigine, to see if it helps with the dizziness and vision issues. It still seems like everything is way worse right before my period and my OBGYN has said my hormones are all within range. I just don't understand it all. I have the chance to go to Louisiana to see a doctor who specializes in diagnosing vestibular disorders. The only problem is he doesn't work with any insurance companies and wants $4,000.00 for testing and then I would have to submit a claim to my insurance company.... who could then deny it. I should just be happy with my diagnosis and leave it at that....., but my mind doesn't work that way. If my medicines would start working that would prove that it's a migraine variant.