Anybody have ideas for treatment of migraine in which the visual aura is the most disabling component. My daughter has had migraines since early childhood , but only in the last 2 years have they really become disabling, mostly because of visual. She has been on lamictal for several years which has besically controlled the lightning strike variety of aura, but has not controlled the rest. She has tried namenda and sibelium which is a calcium channel blocker available in canada. But nothing much has helped including past experiences with topomax. Anybody have info on doctors or treament successful for this kind of chronic aura with migraine?
I would take her to see a Migraine specialist - an expert. If you've already seen a neurologist/ "headache" doctor, they really aren't expert. Migraine specialists treat one condition - Migraines and headaches, devoting their entire practice to these disorders. Neurologists treat so many different conditions like MS, stroke, epilesey and Parkinsons it is hard for them to be experts in one area. Continue reading here for more information: Migraine and Headache Specialists - What's So Special? and then you can look for a Migraine specialist in Canada HERE.
I hope this helps.
Not sure if you'll see this info since you posted in January and I'm responding in December, but I hope it helps.
I've been dealing with migraines with and without aura for two years now (3-4 per month and almost daily headaches--i.e lesser migraines. Here is what has helped:
1. I found a good neurologist that specializes in migraines. He is the third "migraine specialist" I've seen. Beware - just because the neurologist specializes in migraines doesn't mean he knows more than you would know from reading a few good books. He just better a knowing the differences between the different drugs, but not necessarily knowing which ones might help you.
2. Get control of your diet. I found through my migraine journal (nearly one-year straight of making what seemed to be meaningless entries) that I am very sensitive to blood sugar level changes. At first I thought I was sensitive to a particular food, but after realizing almost every food I ate would trigger some pain, I got the idea that it was my blood sugar changing 15 to 30 minutes after eating. I now don't go longer than four hours without eating at least a little protein and all of my meals are mostly protein.
The other thing I have been suffering from is constant visual auras. Not the fortified scitoma auara that often preceeds my migraine. These are a combination of psarks of light, streaks of light, blurry patches, inability to focus both eyes equally, and the almost always present floaters. These things, especially the floaters, started the same time my migraines started, nearly two years ago. My neurologist suspected I was suffering from persistent visual auras. He drew some blood for a gene test and sent me to a neuroopthomologist (sp?) to make sure nothing was wrong with my eyes.
The neuroopthomologist said my eyes were fine and he suspected my floaters were definitely not the floaters all the optomologists claim as floaters from vitreous fluid in the eye, especially since they often multiply in numbers and structural complexity shortly before a migraine hits.
The blood test showed I had a gene mutation that has been found in others with persistent visual auras. The treatment is a vitamin supplement called Methyl Protect made by Xymogen. If I remember correctly, the neurologist said the gene mutation makes it difficult for my body to use B-complex vitamins. So, I need to take the Methyl Protect which contains an ingredient that helps my body absorb the B-vitamins it needs.
Does it work? I don't know yet. My neurologist said his other patients who reported the same thing as me have had a night-and-day change after three weeks of being on the supplement. The place I went to get this supplement from was out. So they have ordered it and I should get it later this week. I'm supposed to call the doc back after three weeks of taking the supplement to let him know how I'm doing.
FYI...I've done the dopeimax, I mean topomax prevention, the beta-blocker prevention, the xanax prevention, the imitrex and narcotic treatment and nothing seemed to work as well as controlling my diet. Give it a try. Check out the 35-day detection diet at www.foodintol.com. Like I said, it helped me identify the blood sugar issue. I'm still checking to see if I really have a food sensitivity. You might also want to have an IGg blood test done ($450 USD) if you can afford it. It might reveal a food intolerance.
All these things I mentioned, were things I had to learn on my own. However, when I finally found the good migraine neurologist, they were all things he knew about and wanted to have me try. None of the other two bad migraine neurologists mentioned anything about them.
By the way, I see Dr. Wade Cooper at the University of Michigan. I have no idea where you are, but if your close enough, and you're willing wait six months for your first appointment, I highly recommend him. So do many other doctors in this area.
Hope it helps.
Did you try the Methyl Protect? Did it help any?
Hi - Recently my prevention program was changed to 160 mg of calcium channel blocker four times a day (a change from using 240 ER twice a day). I am also now on 800 mg of neurontin 3 times a day. This has greatly reduced the distracting, debilitating visual and other aura that I was experiencing with or without a migraine to follow. I now get the occasional "spark," which is comparatively easy to live with. I have also gone from 5+ migraines per week to 2. It took a while to titer up to these levels of medication, I was extremely sleepy during the transition, but am now doing well. I cannot take beta blockers or ACE because I also have asthma. It may be time for your daughter to have a compete re-evaluation of her migraine medications before she begins to experience increased aura with or without migraine. Migraine Equavalents, or aura without following head pain are considered to be cause for concern, just as full blown migraines are. Encourage her to be her own best advocate, and find a neurologist who is skilled in helping people manage migraine. Best of luck, Lynne
I too have found that food is responsible for almost all of my aura migraines. If I eat peanut butter and aged cheese within a 1 hour period, I get a migraine. If I drink certain coffees I can get one easily! I start a new coffee 1/2 cup for a week then a full cup if I don't get the tingles. Three small Dove Chocolates will also give me sure migraine, but Hershey's is ok. I found all this out by keeping a diary of what I ate and when the migraine aura starts. It was very easy to track my migraines to food and beverage this way. Recently, a friend started getting migraines weekly. It was peanut butter. She stopped eating it and has not had a migraine since. I found that eating meat and vegetables with water will stop all my migraines for as long as I'm on that diet. When I added the peanut butter or certain coffee, Wham! I got hit in less than 3 hours. I hope you can benefit from this.