Hemiplegic Migraines - Doctor/Hospital Frustration - Michigan

I'm 47, on November 10, 2023, I was working from home. I woke up in the middle of the night dizzy but promptly fell back to sleep. I got up with a headache, took a Tylenol, and went to work(from home). Over 4 hours my eye drooped, my mouth drooped, two of my fingers on my right hand went numb and two of my toes on my right foot went numb. It was only on a call when I could not speak or smile that I thought I was having a stroke did I go to emergency. Went through stroke protocols(CT, MRI) released - no stroke. PT/OT/Speech therapy script and follow-up with PCP. I was prescribed Lipitor and Baby Asprin.

On November 30, 2023, while at OT with nothing but a small pole in my hand, sitting I felt a "bubble" come up the left side of my head and I slumped over/"fell asleep" - luckily there was a nurse there and the OT/PT called for an ambulance. Again rushed to the ER, Stroke protocol this time with TNK on board - all clear. My family said this was not normal, this was not me, something was wrong!!! Only the residents would come into the room. Finally, on the last day, a Neurologist came in the room and said to the resident, not to me "You know back in 2007 this guy came up with these migraines that presented all the signs and symptoms of a stroke without the stroke effects." So I was discharged with Left-sided weakness, I could not walk so I have a rollator. My grip was still weak on the right, my speech was even worse and now I could not remember things. I was only up for 4 hours and would have to take naps, get up for four hours, and then go to bed for the night. I was prescribed Topamax 25 mg 2 times per day and to follow up with Neurology and my PCP. I made the appointments. My PCP has seen me right away, but Neurogoloy still cannot see me until January 2024.

On December 14, 2023, yep you guessed it was at PT this time. Just to be evaluated. She had me stand up and sit down 5 times. I stood up on the 5th time and when I sat down I "fell asleep"/passed out, could not talk, my left eye would not open, my mouth on the right side drooped and I was confused about questions by the ambulance drivers, ER staff and RN's. Hospitals this time of year are overcrowded and busy, staff is overwhelmed and overworked - it's hard for them. I was in the ER for about 12 hours and moved to cardiac( all the rooms were full at the inn) for observation. The next day after lunch I had another episode - I felt a headache, and my face tingled. I hit the call button but could not speak. Lucky for me the neighbor's mom was there and saw my struggle she called Nurse, Nurse, Nurse. They had to call for Rapid Response my BP was 155/101, I could not speak and I "fell asleep". When I woke up I could not talk, I had to write and I could not write well at all it was scratching mostly. Neuro came in - push-pull/push-pull well no stroke follow up with neuro outside. Frustration something is wrong !!.

I saw my PCP he even said I should be seen sooner and sent Neuro an urgent message but nothing so far. So each day I wake up with tingly hair. He increased the Topamax to 1 in the morning and 2 in the evening still the same. I weeble and wobble but I don't fall. I stutter and slur. I forget things. I cry and get emotional over the slightest of things when before I did not. And I'm scared that one day before some professional will take this seriously something permanent will happen .....

This is not me, this is not my life. But I adapt I overcome and I keep going.

So how do I get a Neurogoloist Headache Doctor or Hospital to take this seriously in Michigan?