Over the last several years I have been to MANY neurologists. I have been diagnosed with classic migraine with and without aura, cluster headaches, and in the last few years, complex (atypical) migraine.
I have learned what my biggest triggers are: stress and not enough sleep. But when those two things aren't the case I still have headaches at least 15 days a month. I am not counting the headache I wake up with every day unless it stays with me.
My symptoms are usually: (either individually or in any kind of variation possible)
Frontal head pain
Temporal head pain
Occipital head pain
Nausea (I don't vomit much but the nausea can be debilitating)
Carotid artery pain, burning, vibrating (one or the other)
Dizziness
Lightheadedness
Blurry vision
Sparkly dots in my vision field
Black spots in my vision field
Loss of sensation on my left side of my entire body
Speech difficulties or inability to speak at all
Slurring of speech
Confusion
Slow processing of any information coming in or out of my head
Irritability
Swelling of my hands and feet (not sure if this is related but it seems to run hand in hand OFTEN)

I have tried the following drugs:
Beta blockers (make me so dizzy I can't see straight)
Topamax (I cannot move on it. I become so debilitated I cannot think at all. I sleep 20 hours a day and that doesn't seem to be enough. I have to have a cushion on the floor in my bathroom because just going from my bed to the bathroom is so exhausting I must nap to get over it. My processing ability is so slow that even coming up with the answer to simple questions is agonizing and takes many minutes. I went to the grocery store with a friend. I drove the little automatic cart. I had a list that it took me two days to compile of twenty items. We were there two hours because it was next to impossible for me stay on task WITH a list. It took me TEN minutes to do the math that three cans of tuna were going to cost me five bucks. I had to stop often to rest in the cart. At one point my friend woke me up in the aisle of Walmart. I had been asleep for ten minutes.)
Imitrex (pills, nasal spray and injections) Moderately effective. Occasionally I would get rebound headaches or it wouldn't work.
Maxalt
Nortriptyline (I sleep for days after one pill.)
Amitryptiline (Same as Nor...)

I have been told the only thing else I can try now would be dilantin. I am already overweight. Trying to lose weight and we are worried I will gain weight on that drug. The neuro also said that if nothing else has really worked the dilantin working is a long shot.

Now what I am wondering is this. Any of you with the complex migraines has your neuro or doc told you that triptans are unsafe? I am not gung ho on trying to get back on them. But he said that I would increase my risk of stroke ten fold by taking them with complex migraines.

I am on day nine right now of a migraine. My complex symptoms trade days. The other day I had the blurry vision, dizziness, sparklies and black spots but no real headache. Just confusion.
Today when my headache has subsided I have traded the pain for optical issues and carotid pain that has stopped me dead in my tracks. Today the pain burns a lot.

With this reporter having a complex migraine on national tv I pray, pray, pray that it will bring more light to this awful and debilitating disorder and we can find a cure. I HATE migraines. My daughter suffers from them now too. I wish she didn't with every cell in my being.

Anyone have any hope out here? I really hope so.
Thanks,
Bridget