I'm a 46 year old male with a long (15-20 year) history of migraines, they have been gradually getting worse over time.
I have been unable to work for the last year and a half, and have been bedridden for the last year due to a severe headache. The headache has not gone away at all during that time.
Five years ago I had a bad stretch that I was off for about a year but not necessarily bedridden the entire time. The rest of the time I experienced what may be considered regular bad migraines. The only other symptom I have is usually when I get bad headache my left arm goes slightly numb and my left hand gets quite cold.
I have seen a number of neurologists and have been on a wide variety of medications over the years with no real results.
Some of the medications I've been on are as follows: amitriptyline, botox injections, celebrex, clonazepam, cipralex, demerol, fentanyl, gabapentin, imitrex, maxalt, metoprolol, migraine prophylaxis, oxazepam, proplylaxin, prednizone, topamax, toradol, tramacel, valproic acid, zoplicone, zolmitriptan (I apologize ahead of time for spelling and/or duplicates in the list, there have been others as well but I have no records on hand)
I have had the usual tests and seen the usual professionals associated with migraine such as MRI's, EMG, otolaryngology (sinus) visit, physical therapy, head & neck pain specialists, various neurologists, I forget others.
When I was on Topomax was the only time I seemed to get some relief so I was on that for years. I still got the odd headache but they were not as regular or severe. Eventually I gradually started to get regular headaches again and I experienced a fairly severe memory loss issue which has not resolved yet. I was taken off the Topomax (this was about 5 years ago, I don't remember the replacement med)
I'm currently on Fentanyl trying to break the cycle of pain. I have another series of MRI's both head and neck booked for the beginning of April to check again if there is something wrong.
The reason I have posted for some insight is that this has more than turned my life upside down and I'm finding myself in a very bad place. I used to be able to deal with them but I've pretty much hit bottom now and do not see much hope ahead. I'm sorry if my language seems desperate but this is where I find myself. I'm hoping that someone out there has some similar experience and perhaps some help.
I have had optical migraines as well as the typical headachey migraines but never for that long of a period. My neurologist is at Rush in Chicago and she said that you can have some inflammation of the nerves in the head and it not show up on an MRI...but if you have contrast, it should show any lesions and can even show small spots on the brain produced from migraines. Another thing to ask about is anneurysms, I don't know how they detect those for sure but wonder if a certain type of MRI would be necessary for that, probably would need a dye contrast if I had to guess but definitely worth asking about and for sure check out Chiari malformation too...I have seen a show where a patient had this and it was not detected in early MRI's and one dr finally saw it, it explained her bad headaches and arm issues.
Good luck!!