Trialing migraine medications-has anyone else done this? Help!

Hi,

I also post on the Lupus forum. I have CNS Lupus. I was also diagnosed with CNS Vasculitis back in August 2005. I was treated with high dose prednisone and an immunosuppressant. I am still on the immunosuppressant and low dose prednisone now.

I have had headaches from teen age years to present. They have now increasingly gotten worse. I now have dizziness, vertigo, memory problems, concentration issues, "brain fog", stabbing pains behind my eyes(mostly right eye). Stiff neck. I have visual disturbances with and without migraines. I see floaters, dark spots and flashes of light that look like "fireflies".

I have seen way too many neuro's, was evaluated at Mass Eye&Ear Infirmary(for vertigo). Finally I saw a Neuro-otologist (a guy that is a neurologist/ENT that specializes in vestibular disorders.). He verified I had damage to my right inner ear from the vasculitis. It was permanently damaged. So, that contributes to my vertigo. I had vestibular retraining with an occupational therapist. It didn't work. Now the doctor feels that my migraines are causing "migrainous vertigo". Now I am trialing meds to see what helps the best.

I was on Topamax but could only get up to 87.5 mg a day. The side effects were killing me. It helped my headaches but I was a ZOMBIE. I was on it for a year. Now I am down to 50 mg at night and he may wean me off of it all together.

We are trying neurontin now. I feel not as tired, but I have had migraines at times. I was on 900 mg a day. He just increased me to 1200 mg a day and still the 50 mg of Topamax at night.

I am SOOOOOOOO frustrated. I can't drive due to the vertigo. I haven't driven in 2 years. I was an Oncology Registered Nurse until I became ill. Now I am on disability. I just wish I could find the right "cocktail" for my migraines and dizziness and get back to my life!!

Any advice? What are other people on and what works best for you??

I have been told that at least 1200-1500 mg of Magnesium must be taken daily for the headache effect you speak of.  It's also important to remember that the body can only absorb 400-500 mg at one time, so a 3x a day regiment is recommended.  Taking 800 mg at once will not have the desired effect, except maybe diaherrea.

I am new to this message board stuff but not new to lupus, vasculitis and migraines. However, I now may be facing lupus CNS or vasculitis CNS (undergoing testing now). I am just one big migraine - I think everything you described (YOU, being the first author) is everything I have been experiencing, so intensely that meds are no longer working.

The migraine is constant, and when it lets up, the vertigo takes over...just a vicious cycle.

Anyway, someone wrote about 'triggers'. It is my understanding, that with vasulitis CNS, there are no triggers, or if you consider vasculitis a trigger, it is not necessarily something that can be avoided or controlled.

I used to have occasional migraines - I knew the triggers. But once they increased to 2/wk, and now seem constant - I have no clue what the triggers are. The last 6 months, these things have been multiplying like rabbits!

Please, please, please could you share with me how you were diagnosed with both CNS lupus & vasculitis? And also your vertigo symptoms and how you are dealing with them?

For me, it is similar to a migraine in that there is lots of pressure in my head and like someone is pushing me over. The room doesn't spin, but I don't feel like I will stay 'up'. My vision becomes blurry and I feel disoriented, a little confused and can't focus mentally. Only once did I become VERY disoriented. 

I would really appreciated your hearing from you!!

Post Edited (sisters) : 7/20/2007 8:13:32 PM (GMT-6)