I feel like a success. I got thru the worst of it with sanity and business intact. MAV has taught me many valuable lessons. I’m a better person for it.
I think its way more complicated than ‘migraine’ personally … there are other parts of the system that may be part of or indeed the cause of the brains travels into migraine. I personally don’t believe the brain is at fault at all and migraine trips are a knock on effect of something else the medics are not catching.
However, it is clearly currently the most treatable part of the chain so no need to ponder on that too much until they unearth more.
Thanks so much @flutters I think it scares me failing a med , as in not because of side effects but because it doesent actually work for me … this has given me some hope out of interest what are your remaining symptoms ?
Without sounding stupid does that mean dr silver expects people to have not one migraine the whole
You are very wise @turnitaround I know please god I return to atleast 90% I am changed forever with this illness il never take my body for granted again
My strong belief is you will improve to levels you can’t really see right now … unfortunately it takes such a long time, so it’s a constant fight to keep the faith … but we’re here to make sure you don’t give up and remind you that it does get better!
Not stupid at all. Good question. I wondered that. Suppose he knows February is the only 28 day month we get in which case perhaps he’s ‘allowing’ 2 or 3 per month depending. Would be interesting to know exactly what he did mean wouldn’t it. Can’t imagine he meant total elimination somehow but it’s not clear. Helen
I think mine is at least 80% originating in the brain.
Pretty much all of them, just less severe less often.
Thanks James I honestly am so greatful to all of you this is possible the scariest and loneliest illness . Having others who understand means so much so thank you.
Thanks Emily , so could you ever have a day of very low level symptoms now enough where it doesent stop u doing anything
Sure, but it’s partly because like you I was always active. I hiked an 8.4 mile trail with 2000’ gain on Saturday (White River to Summerland on the Wonderland Trail at Mt. Rainier). I’m just back from a 6 mile run. I can kayak all day. It’s about dancing on the edge of my threshold. Today while running my right hand started to go numb which is MAV for slow down a while. Today was a rough one, MAV intruded a lot. But I know better than to try to push it, so my mileage wasn’t as great as it can be. Maybe tomorrow I’ll be able to really blow it out, or not. I pay attention to what my body is saying. If I keep my dizziness and nausea down to within 1-2 of my base level (so 4 out of 10), I can keep going a long time. My speed and level of effort vary with how I’m feeling moment to moment. If I’m mindful, I can do 50 miles of hilly fun on my bike.
Wow that’s amazing Emily and so happy to read that , it def sounds like u are so active I guess it’s all about knowing your limits . I still can’t run and being outside feels wierd still but I am praying this goes . The hiking and miles on your bike is amazing tho well done !
It helps I’ve had MAV for a bazillion years. I’m 45. I’ve lived with MAV since at least 25. After a while, you just do your thing even if you feel crappy. Vertigo stops me, but dizzy and nauseous do not. My husband is a very active person. If you don’t run him regularly, he gets all cranky. If I ever want to see him (the back of him, mainly, because he’s fit and tall and I’m short and fat), I go where he goes. At the worst of it, the visual vertigo was very hard to deal with. As I’ve found good medications, completed VRT and adopted good strategies, I’ve been able to reduce my visual vertigo and increase my activities and mileage. You can get there.
I ran 2.5 miles on treadmil and had a rush of adrenaline and could not sleep that night. Guess who came knocking next day, MAV in full force. It is about doing just the right amount of exercise and dancing on the edge like Emily elegantly put it.
I had that adrenaline rush thing when I was coming off Paxil, awful. I couldn’t really stop it, it wasn’t my mind or a panic attack. It was more like the nervous system was confused or something.
Oh wow has it been constant since you were 25 ? I haven’t been able to run since this started , for me if I didn’t have the spaced out feeling and sensory overload I could hack the rest. You do give me so much hope that your now feeling a lot better . Your husband sounds very fit that’s some great motivation
Every time I run it brings on my mav worse so I stopped but does anyone know why ?
In the moment running is more tolerable for me than walking actually. But later, yeah, if I over do the run, it seems to make my head pressure go up too much and then I can’t sleep well. Running has a fair amount of vestibular action combined with vascular changes, both of which I guess could contribute. And during the recovery process it all changes, you may find running more tolerable at some point.
No, not really constant. I’ve had dizziness, nausea, unhappy digestion for all that time, in varying degrees. The constant tension headaches and migraines started maybe 4 years ago. They didn’t come together in a disabling way until about a year ago.
In the beginning, swimming was my salvation. I’d walk in spaced out and dizzy and walk out feeling normal, if still hypersensitive to light and sound. For me the key is putting up with 20 minutes of MAV getting so much worse, getting past that and then pushing on for the rest of the workout. If I do, I get to hours of mostly MAV free happiness. Dance the edge, get past the shit and then push up your endurance. There have been times when I’ve appeared at the gym in sunglasses and a baseball cap with earplugs and then worked out facing a blank wall. I still get nauseous for chunks of most workouts. I throttle back, give myself a break by lowering speed or resistance and start pushing again when I can.
The man is fit. The only thing I can outdo him in is kayaking. The boat compensates for our height difference.