What is Helen ? 
I have realised msg is a trigger for me so have to avoid that like the plague
Not Helen, Emily here. The visual symptoms going down are a sign the med is working. I was replying to your reply to me. Though that’s sometimes hard to see when we all get to cross chattering.
Oh sorry and I mean Emily 
totally not with it today! Yes the fact I am having less shimmering visually I pray is a sign I had some today but ate Thai food hence why I think it’s a trigger it’s so hard to find triggers until symptoms go down 
X
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The meds are slow, but the symptoms do go down with time. Things that used to trigger me don’t now. My husband and I went kayaking Sunday. It was choppy. Six months ago being near the water wrecked me. Now, he got seasick. I didn’t.
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That’s amazing Emily !!! I guess when ur in this mav storm it’s very hard to see the light at the end but that is such wonderful news . I am going to try my best and be patient with this drug and hope to god it helps !
Yeah, its hard to tell on the triggers when symptoms are so bad. One meal didn’t seem to affect me too much, but two in a row that were heavy in tyramine would increase the head pressure. Although Thai food was the one that I always cheated on once in a while because I would get it extra spicy which helped reduced the head pain for me. I still use cayenne pepper to help manage my head pain at times.
Now that my head pressure has come way down I ate some ground beef and cheddar cheese the other day and notice the head pressure coming back. It wasn’t too bad, but if I did that every meal I’d quickly have an exploding head again…
Fortitude and humor are your best friends. Need a bit more encouragement? We kayaked because the top half of us didn’t hurt. The day before we hiked 14.4 miles for an elevation gain of more than 2,400 feet up and over ridges on Mt. Rainier. It’s smoky here in Washington state, so I did that thing in a mask. No rescue meds needed. Though an extra snack would have been nice.
Wow! When are you going to do an Ironman?! Or maybe an Ultra???
Um, dude, you’ve met me. Does short, fat and middle aged remind you of any Ironman you’ve ever seen? 
God surely must live in Grand Park. You get there from Sunrise. So, that’s where we went. Too bad about the smoke, though. You should be able to see a 14,000’ volcano when you’re standing right next to it.
Lol 
if nothing else mav hasn’t stole my humour ! That sounds amazing Emily I’m meant to be moving to la once this mav is controlled maybe I can take up kayaking then
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Yeah that makes total sense it’s so subtle it’s hard to tell ! I think that’s me to a t. A little bit doesn’t do too much but a lot and I’m defibatley paying for it ! Think I need more symptoms control to figure out the rest
If I am not ectomorph, you are not fat. Training for the Ironman would be easier than getting rid of MAV.
Tell that to the BMI chart! I’d have to lose 15 pounds to get from obese down to just overweight (stupid metabolism destroying PCOS). And Ironmen don’t move so slowly or limp into physical therapy the next day (stupid mobility destroying surgical adhesions pulling my bones out of place).
I do think you’re right about that. Healthy folks at least get to choose their challenges. But, I know for a fact I’m a better person for having been so thoroughly and constantly challenged throughout my entire life.
I told Vigs my philosophy once. There are three responses to being under constant pressure. I can’t squeeze out of it. I refuse to break. So, I’ll be harder than the press.
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That sounds great - very encouraging. 
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Haha! I love it.
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@flutters
I used to get cold hands and feet - similar to raynauds - and my fingers and toes would go white. My father , who has migraines , also has raynauds. I have the opposite problem with my feet now - they are often too hot and at night feel as if they are burning and can keep me awake for hours. I mentioned this to Dr S as I wondered if there was a link but he said I would have to see a neurologist!
@flutters
I used to get cold hands and feet - similar to raynauds - as my fingers and toes would go white. My father , who has migraines , also has raynauds. I have the opposite problem with my feet now - they are often too hot and at night feel as if they are burning and can keep me awake for hours. I mentioned this to Dr S as I wondered if there was a link but he said I would have to see a neurologist!
Migraine affects many autonomic functions. One of my hands shows signs of Reynauds, the other goes numb. Sometimes I have rhinitis, stuffy ears, IBS, all manner of hallucinations and other weird neuropathic things, too. All have been attributed to the global brain dysfunction that is migraine. It’s not a headache; it’s a syndrome with innumerable co-morbidities. Mine starts in the brainstem, the heart of the central processor. At this point, having learned firsthand what a basilar aura can do, I wouldn’t put anything past it.
Love your philosophy, will copy with pride
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