I was diagnosed with migraines in 2003 after having them all my life. Also was diagnosed with pseudo cerebri tumor in 2005 was put on Zonisamide and had yearly spinal taps. After taps I was almost migraine free for 6 to 9 month then as the pressure built back up the migraines would start again. I tried diamox twice but the side effects were too bad. In 2012 I started a new problem where I was just really confused I’d be driving and forget where I was or where I was going. Id look down and see my scrubs and know I was going to work. I was scared but didn’t tell anyone for 2 months I told my mom after I started looking at my husband and not know I was married to him I thought I was 27 and we were dating when using was 29. Then I went to the doctor. They took me off all meds and started me on kepra and I lost more time over the next 6 months went back to about 24 when I was in paramedic school… Long story short as time passed I lost more. Now 4 years later when I have migraines I revert to 3 or 5 years old. My speech, my mannorisims, my memories, its like I’m that age. I’ve been to 5 different neurologists and 3 physiatrists and no-one knows what is wrong with me or why it’s happening. It’s so annoying because I can’t work I can’t drive I don’t know my husband or stepkids when I have these migraine episoids. Has anyone ever had this or heard or this??? Please help
I haven’t heard this symptom before, but that doesn’t mean it doesn’t happen to others. The first thing that comes to mind is it’s time to see a true migraine/headache expert rather than a general neurologist. Its not that neurologists aren’t fine doctors, just that they have a hard time being experts in one area because they treat so many different disorders such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. Migraine/headache experts are just that – experts in one area – migraine and headache – AND are board certified in headache medicine which is different than being certified in neurology. We have information in these articles that may be helpful; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
I hope this helps, please let me know what you think,
Thank you so much for the response Nancy. As I stated there is more to the story. The first neurologist that diagnosed me with migraines and pseudo cerebri tumor thought it was all migraine related but he moved his practice out of the state and that is why I’ve been to a handful of neurologist since then, 1 said it was all seizure related even though there is no family or personal history and every test came back negative. I’ve been told by the last physiatrist I saw it was dissociative identity disorder but the evaluation I had done didn’t support his diagnoses.
The last Neurologist I saw was a migraine specialist. I had found her online and called her office to see her and was told to see another office neurologist. I saw him for a year and was then told it was my PTSD causing my problems and not migraines even thought I took records with me that showed 95% of the time I had a Migraine I have an episode of memory loss/regression with or following the migraine the memory regression last anywhere from a few minutes of confusion to so far 6 days. I asked if I could again see the migraine specialist and was told fine. I went to see her once and she told me that episodical memory loss was very rare with migraines. She also told me I had been on pretty much every class of meds used to treat migraines except Botox. But that if I had true pseudo cerebri tumor that Botox wouldn’t help me and she took me off the sumatriptan I was on because she said I couldn’t be on triptans if I’d had a history of TIA (which I’d had in 2010) She wanted me to see a neuroophthalmologist to rule out if I truly had pseudo cerebri tumor.
7 months later I got in to see a neuroophthalmologist and was told I have a mild case of pseudo cerebri tumor and that it doesn’t cause episodically memory loss and I needed to be on Diamox. I explained to him the previous side effects I had on the med and was told that the side effects I reported were not side effects of the meds. I went on the meds after having a spinal tap and instantly got a headache, was light headed, dizzy, felt short of breath, I stayed an hour after work one day because I thought I was going to pass out, My face was numb, and I had visual disturbances that caused me to drive into 2 ditches and hit a mailbox on my way to and from work. I called to report the same side effects as before and my calls were never returned so my husband told me to stop taking the meds and 2 days later I was fine and all the side effects were gone. I went back to the Dr and he again said that I didn’t have any of those side effects. Said I was refusing his treatment and that he could put me on Furosemide to reduce the fluid. After a year of treatment from him I still knew nothing and was still having migraines with memory problems.
I called the migraine specialist back to see if I could make an appointment to come back to see her for the migraines and memory troubles since the neuro ophthalmologist was not going to be treatment me for either and just for the pseudo cerebri tumor and was told by her nurse after leaving 2 messages to schedule an appointment, that the doctor would not see me because she could not help me and to go back to the memory clinic. I was so dumbfounded by the answer I just said ok and hung up I did not ask her what memory clinic she was talking about because I did not come to her from a memory clinic.
So back to square 1 again after almost 4 years of this I have went to my Ophthalmologist that checks me for my diabetes and asked if he could treat me for my pseudo cerebri tumor and migraines and he said yes and so I have been going to him last time I was in his office he gave me half a treatment of Botox (for FREE) just to see if it might help. He said if it helps he’ll give me the full treatment including the shots to the occipital area. So far I’ve had 2 migraines since the treatment almost a month ago and had been having them 3 to 5 times a week.
So hope this works for now but I still have no idea what is causing them. At least I have a Dr that says he believes me and wants to help me.