Sure Christine, I’d be happy to share what has worked for me.
First, I can’t imagine this past 25 years dealing with this insane condition. I can only hope that it has at least been somewhat manageable for you so that you have been able to live somewhat of a normal existance. I have been dealing with MAV for only 9 months, but the condition has been so intractable for me, that functionability was impossible. I was homebound. My crash was in the winter, after a bout of stress over the fall. Within a week of my crash, I had a complete medical and nutritional work-up with a very reknown nutritionally-oriented medical establishment in NYC. Most of my results came back normal, but there were two abnormalites that stood out in particular. First, my vitamin D level was almost 0. And my cholesterol was very low. I honestly didn’t know there could have been a correlation between my vitamin D level/cholesterol and MAV, but I believe, at least for me, that this was a factor in my developing the condition. It took me almost the full 9 months to get my level up, but my vitamin D is now at about 35, and my cholesterol is approaching the 200 mark, and having the topamax as a preventative has also been a help as well. With my vitamin D in the high normal, I also feel happier as well. The correct test for vitamin D is 25-OHD as there are two vitamin D tests. It may be worth getting tested to see if this is a factor for you. Cholesterol is used to form hormones, and low cholesterol levels can sometimes mean low hormone levels, which according to some, can lead to, or at least exasberate migraine. the migraine program, which scott is embarking on, routinely checks cholesterol as the doctor understands the importance of cholesterol in hormone production. Just getting my vitamin D and cholesterol levels up made a huge difference in my opinion. My intracellular magnesium, calcium and other vitamins were all normal. Vitamin D levels and cholesterol, will also affect serotonin levels, which as we know are important in migraine. So I get my serotonin indirectly from vitamin D, cholesterol, and I eat a cup of home-made ice-cream before bed every night for the tryptophan (precurser to serotonin).
I also stick to a diet of animal protein, non-starchy vegetables (but I eat sweet potatoes and non-grain starch), butter, olive oil, eggs, and home-made sauces to exclude all migraine triggers. Everything that crosses my mouth is 100% free of migraine-triggers except for supplements and medications but these do not upset my condition. When I go out to a restaurant, I order a burger, non-starchy vegatbles with butter and I never have a problem.
My vitamin program is tailored specific based on my blood results. So I would recommend finding a nutritionally oriented doctor who does this. But I do take extra CoQ10 (100mg 3x per day), Vitamin B2, and ginger specifically for migraine. I find it works decently well.
I also go to sleep the exact same time every night, and wake up the exact sam time every day. 11pm every night, 9am every morning. I never change it. It’s like clock-work. I also sleep in complete and total darkness as this maximizes melatonin production, another hormone. I don’t know if this has any play in MAV, but it seems prudent to keep this at a nice level as well, and when melatonin is low, sleep can be quite poor.
I think the combination of everything above is what led to my improvement. I decided to be treated more holistically, including medications as well. I do not believe my results are just from topamax as I am not even on a full therapeutic dosage. 56.25 is all I am on. 100mg is the lowest recommended dosage although people do get benefits at lower dosages obviously.
i work out every day, 1 hour, not intensly, but enough that I keep up my strength, get some cardio in, and challenge my brain to adapt to the stress. I started this in June, and it’s been a real help. At first it was tough, But I have become accustomed to it, and my migraine symptoms take longer to come on now as a result, even from normal every day activities. I also started forcing myself to get out into busy places where my visual migraine acts up, and forced myself to deal with the new visual cues. It has worked. My brain has adapted nicely, and I only have a 10-20% visual deficit after 9 months of this.
None of these things have been a magic bullet, but accumalitively, I believe they have done wonders. Also, for me, vitamin D from the sun has been more effective than from supplements. So, I have purchased a vitamin D sun bed that I now use during the fall/winter months to keep my vitamin D up. All the light bulbs in my house are full spectrum bulbs to avoid “SAD” over the winter, and it works wonderfully. My house is the only one on the block that looks like the sun is radiating from the inside lol. I have to wear sunglasses inside but I would much rather do that, than to deal with those ugly yellow lights that just make me depressed. The house is brighter, and it keeps my spirits up. If it gets too much, I take out some of the bulbs so there is less light, but it is always natural light. Never yellow, and never flourescent.
I hope this information was helpful for you. After 25 years, perhaps you have been through all of this, and found it was normal, and perhaps these other recommendations have been tried. Or perhaps these are something yet to explore. This is what has worked for me, so I am not surprised that a program like the “migraine program” is being hailed as a possible remedy to this condition. I am very curious to see how Scott gets along with the hormones and other recommendations. Good luck Christine, and if there is anything else that needs further clarrification, just ask. I spent months, alone, suffering with this condition and not knowing what was what. I finally got myself to a good place and would be more than happy to help anyone with any knowledge I may have. I just hope the same goes the other way around as well. I am always learning as well, and can’t possibly have the experience of someone who has dealt with this for 25 years. I take my hat off to you simply for your endurance all these years. But I have been fortunate enough to pick up some good suggestions and treatments from some incredible doctors in the NYC and Baltimore area, so perhaps we can help each other. That’s really the idea here