What kind of MIGRAINE IS THIS?

My name is Teresa and I suffer from migraines.

        I live in Roanoke Virginia. I have had migraines all my life-27 years to be exact. I suffer from tension headaches, left ice pick migraines, and the skull smasher. I call it the skull smasher because my neurologist has not told me what kind of migraine this is. This is a fairly new migraine & started when I turned 40. I'm now 44. I was at work in March of 2004 and my scalp started tingling in the very back of my head. My left arm and side of my body went numb and the next thing I know I felt a horrific profound throb in what felt like to be one vessel in the back of my head. I can't explain it. I know it felt like I was having a heart attack in one blood vessel of my brain. The pain was SO intense that I couldn't talk, or hardly move. I made it to my Drs.office who happened to be right beside where I work at. I went there and told them I thought I was having a stroke. I was in so much pain with the throbbing that my speech was very slow. They took my BP and it was high and with the symptoms they sent me to the ER. NOTE: **(When I was younger in my 20's I had a bad migraine and took a Tylox for it. It landed me in the ER with my heart beating out of my chest for about 10 hours. They told me I was lucky I didn't have a heart attack as I am allergic to codeine. Since that happened I've never taken anything other than an aspirin for my migraines, until the SS hit**.) I remember being in such pain that I literally couldn't stand it and I have a very high tolerance to pain. They offered me an IV with medicine while I was waiting for the CAT scan & I turned it down. I was too scared to take anything at that point. I told them I didn't want it and I remember the Dr. looked at me and said "really"? Most people always want something for pain when they come to the ER. I used to take cafergot, midrin, and often had to go to my Dr. to get a demerol shot, but after the whole Tylox incident I stirred cleared of prescription medicines for pain. Anyway's, the Dr. told me after running all these test that I had a migraine. I'm glad it wasn't a stroke, but I found it really hard to accept this as being just a migraine. After all, I've had them all my life and this was by the far the most intense, horrific pain I have ever experienced. I thought my heart would literally rip through my scalp and just explode in the process. I honestly thought I was going to die that day. I finally made an appointment with a neurologist and I like him a lot. He has been good to me and listens to my ideas about medicine but I don't think he understand how morbid this migraine is when I get it. I am not satisfied with being told about it being just a migraine. I know it's something more. I don't know what kind of migraine this is but I know it feels like I'm going to have a stroke or something bad is going to happen to me when I get them.  He started me on Bupap which is acetaminophen and butalbital. I was so scared to try it but I did and I remember the first time I took it, it worked like a charm. I had a throbbing skull smasher and it completely took away the throbbing. I can always tell when I'm going to get this because the back of my scalp will go numb and tingles run up and down as if Novocain is wearing off. I usually get this kind of migraine 3-4 times a year. I still have the left sided numbness, and slow speech but if I can get the bupap in my system fast enough the throbbing doesn't usually materialize to "horrific". I also have to take 2 bupaps for this kind of pain per the doc. I only take my bupap for this migraine and sometimes the ice pick migraine if I can't endure the pain. I also use Goody powders. They are an OTC powder and they work very well for my less severe migraines. I usually average about 3 migraines a month. I'm not much on medicine, but then again I'm not one who likes to suffer either. I've been on Magnesium 800 mg's for the last 4 years and bupap for the migraine in action when needed. I was just put on oxygen for the more severe migraines. I use 6-8 liters for 15 minutes. Sometimes it will completely abort the migraine, and sometimes it doesn't do anything however a 50/50 chance is better than a 0/0 chance and it has no side effects. I also get hormonal migraines. I can usually count on these babies to hit 2-3 times a month before and during the cycle. My hormonal migraines seem to be the worse to maintain and get under control. I have heart disease and have been on heart medicine for the last 20 some years which is a beta blocker, and I am on anxiety medicine from anxiety attacks that stemmed  from my heart palpitations (also for the last 20 some years.)  I still have the TOPAMAX sitting on my shelf from last year. I'm still too scared to take it. It's only the 15 mg sprinkles to start out on and then slowing increase. I know I should trust my neurologist and I do with all my migraines except this unexplained one that I can't seem to get a satisfactory answer on. I'm not going to stop until I find an answer. I think maybe it could be hemiplegic migraine, or basilar. I just don't know. I'm not a specialist but I know that SS in my brain is not normal typical migraine and no one should feel like as if they are going to die from pain being so honorific that it's beyond verbal explanation. I've had the whole throbbing migraine where the entire head pulsates, tension headaches which feels like rubber bands stretching across the forehead, and hormonal migraines which leave me exhausted and weak, but I can't come to terms with this SS not being something more serious. I just want an answer and for someone to take my pain serious and do some blood work. My last MRI showed I have tissue damage from having so many migraines. I was told that was nothing to worry about. I don't know what to believe anymore.

Frustrated in VA