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....
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