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

Hi Bridget,

Wow. I thought I had 'em bad. I don't know anything about the stroke risk; Maxalt works pretty well for me most of the time.

I went through a string of neuros until I found "the headache guy" in this area. This guy really knew his stuff cuz headaches is all he does in his practice. With just 3 questions, he nailed my dx - CTTH/Migraine Complex - Sudden Onset (after several other neuros listed me as atypical w/o aura, status migraine, new persistent daily headache, and "other"). If there's a "headache guy" where you are, or that you can get to...

Ever had Mono (even as a kid/teen)? Mine started with a cold virus - turns out they were caused by reactivation of the Epstein-Barr virus 30 years later.

How's your posture, and have you been to any physical therapy? The headache neuro sent me to the right therapist - one who also specialized in just headaches. We found that a particular chin tuck exercise and a couple others got my numbers down to under 15/month. Another thing that helped - because of some muscle spasm contributing issues - was myofascial trigger point therapy from a certified myofascial trigger point therapist (not from a typical PT or chiro - they don't know enough/the right stuff).

IME, not all clinics are the same; some are good - with others you're just a guinea pig.

Doc

Hi Doc,
Thanks for replying. I have been treated with PT when I was pregnant with my son. It did help. I couldn't take anything really when I was pregnant with him so my neuro sent me to PT for some neck work. When I was pregnant with him my migraines were over the top bad. Some of the worst headaches of my life. It was awful. I didn't have that problem when I was pregnant with my daughter. Maybe it was the "boy hormones?" LOL

I also tried chiropractic care. I had one chiropractor in nursing school that did atlas specific adjustments. I had to have them done a few times a week. (I only went on days I had headaches.) The first time I had it done I had a splitting migraine. I thought I was dying it hurt so bad. When he did the adjustment I felt a head rush like nothing I have ever experienced. The blood rushing to my brain was crazy. I got really dizzy and almost threw up. I laid with an ice pack on my neck for twenty minutes and by the time I got home my migraine was GONE. I have YET to find a chiropractor again that does the same adjustment. I have found many who SAY they do. But they haven't been as good. Those adjustments help that day. I still get a migraine a few days later. But I preferred doing those adjustments than taking drugs that made me feel worse and often only gave me a 50% chance of the headache going away.
We just moved to the Denver area and I am waiting for my job to start so I have insurance coverage to find someone. I did find a headache clinic here. But she doesn't take insurance and I really cannot afford to pay out of pocket.
I have found a few clinics that say they specialize in headaches. I am hoping I find a good one.

Chiros seem to be one of those polarizing topics. Speaking of "professionals" (of any flavor) who SAY they know something but DON'T....

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I went one PT who claimed to be a headache expert, and "dabbled" in chiro & myofascial techniques without certification (or my knowledge). I didn't realize it, and before I knew what was happening, she grabbed my head from behind, jammed it down into my spine (DDD w/ spurs & stenosis c5-c7, which she well knew) and I thought she had broken my neck. Instant migraine @ 8-9 (which feels like a 13 when it's in your head of course). I immediately got up and left. Probably should have gone immediately to the ER. That migraine stayed a week, at which time I was pretty sure I'd be heading to court. Fortunately for everyone it did finally resolve (that migraine) but my neck continued to be sore for weeks afterward.
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Doc

Years ago (and crossing everything at the moment) I had those long term...for days bad headaches...migraines. Wow. Hideous!
Usually, I ended up at the ER and got some kind of shot to stop the cycle.

For me, I had to get on a low dose of Topamax and do many, many other...I guess you might say more holistic things...to get some improvement.

I use vitamins (calicum/mag., B Complex, Co-Q10) in particular, relaxation techniques and carefully avoid triggering foods.

Additionally, I am careful when it comes to stress....doing my best to think positive, controlling what I can in life, exercising, etc.

They are still an issue...but improvement has come. I think everyone is different....for me it was a big process....Topamax (low dosage...anything more makes me loopy), lots of hard work and serious thought... with the help of a really caring, wise and patient doc.