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Status Migrainosus
My current diagnosis doesn't included any prognosis or remedies. My current lifestyle in no way resembles my life 6 months ago when my symtoms started. I have had this severe headache for 5 mons. along with nausea, dizziness, loss of muscle control (drunken sailor gait) eye pain and fatigue. I have had 3 sets of blood work, 2 eye exams, and brain mri, a brain CT and cta scan, a vng test and hearing test. I am currently on topiramate 50 mgs for 2 weeks with little effect. All other meds have been ineffective or severe side effects.
Is this what my life is now?
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I have chronic migraines with bouts of status migrainous for over 50 years. I get Botox to my upper back, neck and scalp every three months to control the migraines, and oral med ( sorry, I’m on vacation and don’t have that med with me right now - as I just got my Botox on the 22nd and don’t recall the name) to control the status migrainous bouts. The med pretty much knocks you out within 30 minutes of taking it and have to take it for 10 nights in a row, but it works pretty well. My neurologist prescribes it.
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1 Reactionburtallman @burtallman
It wasn't until topiramate was increase to 100 mg am and pm, that I started noticing a positive result.
Question - do you have a stiff neck - turn head left and right (70 degrees is normal)? If so, there is Physical Therapy - Dry Needling might help (it took me 9 months of weekly session, then once a month maintenance mode for me) and muscle relax medication Baclofen.
Since I have many puzzle pieces (symptoms), I have a few providers.
Best Wishes,
🍀
@fourleaf I also had luck with the Topomax at 100 mg twice a day for many years and also have the stiff neck with apparently some cervical nerve issues I am doing PT for. I did dry needling for my back. I will try it for my neck! Just a sad note on the Topomax I had to recently get off of it due to peripheral neuropathy as a side effect and issues with severe osteoporosis. I am working on the taper now and will go on a blood pressure med I hope that will work. But the neck exercises have helped me during the taper a lot. Good to talk to others in a similar boat.
Could you have vestibular migraine?
If so, the only thing that worked for me was aggressive vestibular physical therapy, Ativan .5 at bedtime only and time. Read the book "Victory Over Vestibular Migraine" by Dr. Shin Beh. He's the guru for vestibular migraine.