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??

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[color=cyan>Currently> <FONT color=blue>Prednisone 2.5 mg, , <FONT color=blue>aspirin 83 mg, <FONT color=red>Calcium with vitamin D, Flonase, [color=purple>Celexa</FONT>,]Neurontin.



Mom to Joey 17 (diagnosed with PDD 1995), Kelsey 14, Michaela 7, and Mitchell 5 (diagnosed with Port Wine Stain left arm at birth and scoliosis at 1 year old.)

It can take awhile to find a preventative that works because there are so many of them and it takes 2-3 months to see if they are working. In the meantime, you can work on raising your threshold and finding your triggers.

Here are some things some migraineurs can try at the same time as a prescription med. You can read about these

Magnesium  up to 800mg/night

vitamin B-2  400mg/day

CoQ10  300mg/day

butterbur or feverfew (better doublecheck these!)

Check with your doctor to be certain these are ok with your other conditions!

Another option is lifestyle and diet changes.  Heal your Headache has a good list of foods to avoid for migraines. In particular, MSG is associated with vertigo. Here's a list of hidden forms of MSG.

 

Breaking the Headache Cycle has info on lifestyle changes. Robert's Living well with Migraine Disease is also a good place to start for info on preventatives.

Here's a link to the American Hearing Research Foundation discussing migraine and vertigo and preventatives that address both conditions.

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.

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DX: NDPH, Bipolar 2, Recovered CRPS

Thanks for the info about the magnesium dosage/absoption. I haven't had any problems; but who needs to waste money? I'll put this on my list to ask my neuro next week.

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!!

 

 

 

I am sorry to hear about your constant migraine/vertigo cycle. I understand that the vasculitis is a trigger that is very difficult to control. But there are other reasons your migraine frequency could increase and it would help to rule them out. Caffiene and MOH (medication overuse headache) come to mind. Good luck with your testing/diagnosis.