Would everyone be happy to list the top 2/3 things that have helped your symptoms and the top 2 things that trigger you please, might help to compile some tips on things to try…if I start…
Best - exercise, regular sleep pattern, hot water bottle/deep heat on my neck when it is v tense
Worst - stress and the grey light on cloudy dull days (bring on the summer sunshine!!)
Lizzie really interesting you mention grey light. I find that it can trigger me to have visual migraines/scintillating scotoma. They started about 10 years ago and I get about 1 or 2 per year. It doesn’t seem to affect my dizziness or MAV symptoms though x
Best - Taking regular rests, resting my head against a cushion, regular sleep, regular meals.
Worst - busy situations, talking to people, stress, siting at desk using computer.
Really that is weird…so many of my symptoms are visual I guess the grey light makes the visuals worse really but my vision and my dizziness are connected…i.e. I sort of have this flickery distorted vision all the time and that makes me feel detached from everything and woozy…which makes me dizzy…find it so hard to describe my symptoms or even separate the vision and the dizziness from one another…arggghhh. Feel so unwell the past 4 weeks, it’s been horrid, anxiety nearly every day, real sensitvity to light, I’m craving sunshine…cannot stand these endless grey cloudy days…makes me somehow claustrophobic…like the sky closes in on me…
Best - pizotifen, regular meals, getting up at the same time each day
Worse - flickering lights, going too long without food, supermarkets (the aisles with the tins are particularly bad for me)
Thankfully I haven’t had the distorted visuals with the dizziness. The only thing I get with my eyes is that they de-focus a lot and don’t focus sharply on things especially when I turn my head but like you say it’s really hard to describe it or even to figure out exactly what’s going on, I just know it isn’t how it should be somehow. I wonder if your increased symptoms have anything to do with coming off nori. I know you said it wasn’t helping but the thing about anxiety and craving sunlight could be linked to serotonin deficiency. Perhaps it a reaction to coming off nori and your serotonin levels have depleted. One way to test it may be to take 5-HTP supplements as they boost serotonin. I take one every few days as well as the nori. You can get them from Holland & Barrett in 50mg capsules x
Wow yeah that actually makes alot of sense, thanks Jem, I am defo gonna try thopse supplements. My visuals are prob my worse symptom to be honest, sometimes worse than the imbalance…urgh it’s a horrid nasty condition. I’m seeing the UK Lyme doc this Tuesday to discuss Lyme…depending on what he says it may be back to Dr S and onto meds again…xx
I hope it helps you. Good luck for tuesday and yes if the Lyme doc doesn’t come up with much then seeing Dr S again sounds like a good idea xx
Lizzie, here is a link to a list of symptoms for serotonin deficiency. I read all about this a few months ago and I remembered it said about hating dark dull weather. That stood out for me when you just said the same thing in your post x
— Begin quote from “DizzieLizzie1”
Really that is weird…so many of my symptoms are visual I guess the grey light makes the visuals worse really but my vision and my dizziness are connected…i.e. I sort of have this flickery distorted vision all the time and that makes me feel detached from everything and woozy…which makes me dizzy…find it so hard to describe my symptoms or even separate the vision and the dizziness from one another…arggghhh. Feel so unwell the past 4 weeks, it’s been horrid, anxiety nearly every day, real sensitvity to light, I’m craving sunshine…cannot stand these endless grey cloudy days…makes me somehow claustrophobic…like the sky closes in on me…
— End quote
I have this too Lizzie! Very flickery vision, like everything looks HYPER real and as if i’m looking through a shakey camera. Horrible symptom. Have you recently started a new med? i find this gets worse for me everytime i change dose.
Best: 8 hours sleep every night/ avoiding bright artifical light/ adhering to the MAV diet
Worst: Lack of sleep/ not eating every couple of hours/ being around cigarette smoke
Best: Regular Sleep pattern, limited to no caffiene
Worst: Long distance/cross country air travel–poor sleep patterns; sitting around without activity (this includes long bouts with the computer)
Seems to me that I get in a negative feedback loop sometimes. I feel bad–so lay around feeling bad, which makes me feel worse, which leads to my laying around more–at which point I get yet worse–and so on.
Sometimes I think, getting up and getting through actually leads to me feeling a bit better over time. AS LONG AS I GET REGULAR SLEEP IN BETWEEN !!!
Wow. You have COMPLETELY 110% summed up how I feel.
Grey light is THE WORST. I avoid going outside on days like today. When the sky is white or grey, I just don’t do it. I’ve been avoiding it for years as it made me feel uncomfortable. But more so now. I wear a hat and or sunglasses and try to not leave the house.
My vision and dizziness is one and the same too.
Maybe thats another reason for being better on holiday.
BLLLLLAAAAAAH xxxx
— Begin quote from “DizzieLizzie1”
Really that is weird…so many of my symptoms are visual I guess the grey light makes the visuals worse really but my vision and my dizziness are connected…i.e. I sort of have this flickery distorted vision all the time and that makes me feel detached from everything and woozy…which makes me dizzy…find it so hard to describe my symptoms or even separate the vision and the dizziness from one another…arggghhh. Feel so unwell the past 4 weeks, it’s been horrid, anxiety nearly every day, real sensitvity to light, I’m craving sunshine…cannot stand these endless grey cloudy days…makes me somehow claustrophobic…like the sky closes in on me…
— End quote
Best:
Alcohol! (short term)
Good social company that takes my mind off my symptoms
Deep tissue massage
Holidays
Worst:
Alcohol!
Stress
Lack of sleep
Cheese/cream
Flourescent lighting
I really can’t figure out what helps much, only what hinders, so looking forward to reading what helps everyone.
Have been feeling really bloody crap in the last few weeks. I still haven’t gone back to my previous baseline of before or during Christmas time… 
I haven’t been for Lyme testing yet. I’m giving this Topirimate increase a chance first and am interested to hear back from Lizzie’s appt first.
Going back to a counsellor this week to try to find better coping mechanisms while dealing with this up and down condition. Perhaps introducing CBT techniques. Will report back. NHS was a waste of time. The bloody locum GP told me I wasn’t suffering auditory hallucinations, but was stressed, (no shit) anxious (you don’t say!) and depressed and she upped my nortriptyline from 40mg to 60mg to try to treat depression… Suffice to say I am ignoring her.
Gp’s have no clue about migraine. BLAH. (Is my favourite word at the moment.)
Oh, I do have 1 good piece of news… I can’t be THAT annoying, seeing as me and Mr MM are moving in together, HOORAH!! I shall have MAV friendly meals presented to me EVERY SINGLE DAY.
MMx
— Begin quote from “dolfnlvr”
Seems to me that I get in a negative feedback loop sometimes. I feel bad–so lay around feeling bad, which makes me feel worse, which leads to my laying around more–at which point I get yet worse–and so on.
Sometimes I think, getting up and getting through actually leads to me feeling a bit better over time. AS LONG AS I GET REGULAR SLEEP IN BETWEEN !!!
— End quote
Totally agree with you.
Yeah Miss Moss!! What great news! Congrats! And the fact that he’s a great cook and gets the totally blah MAV diet is an added bonus. Totally jealous on that point! Interested to hear how the CBT goes for you - I think it could help our condition quite a lot as stress and anxiety play such a huge role. I’d totally do it if I could drive to the place where my local NHS offers it.
If only GP’s had a clue how the migraine brain worked - considering how prevalent migraines are (not VM, just regular migraines), you’d think they’d have some kind of training. Before VM hit, I went to my GP with migraines and they just gave me drugs (which didn’t really work BTW) - didn’t touch on diet, lifestyle, etc., which I knew about anyway. I think this is something that they should discuss with patients with migraines before just prescribing drugs personally, as we all know the brain needs to be calmed down before meds can really work.
Best:
Topamax (though it took me a long time to see the good points of this drug!)
Consistency in my days - regular wake up/sleep times, consistent activity as much as possible
Regular MAV friendly meals
Worst:
Travel, especially by train
Extended computer use
Noise/Bright lights/Crowds
Stress/Anxiety
And I second Miss Moss - I completely agree with dolfnlvr that it is so easy to feel bad and lay down for a bit to get some rest, from which it is so hard to get up again, which then just makes me feel worse and then I just can’t get up again. It is an endless loop. I try so hard now to just keep going and do something every day, even if it is something small like housework to keep me from falling into this loop. It has helped but my energy levels are so low that it’s really hard to keep going on most days when I really just want to lie down and try to stop the dizzies!
Top things
Worst things
Oh yes, being in motion for me too! Forgot that one!
Another thing that helps me alot is swimming! Being weightless…thanks so much for ur replies all. xxxx
Best:
Topamax
Avoiding Caffine
Getting enough sleep
Worst:
Computers,
Artifical lighting, but also grey cloudy days and sometimes sunny bright days as well will get me. Mostly the artificial
Anything visual- hate grocery stores, patterned carpets and wallpaper.
Have to add I hate elevators.
Teri
Best: good sleep, regular food, exercise without overdoing it to soreness.
Worst: Radically worsening weather, wearing tight goggles, having to concentrate strongly for an extended period, especially against strong visuals or noise or fatigue. Sometimes diet violations can hit hard.
BTW, I’m on 75 mG nortirptaline, and it was not prescribed explicitly for mood issues.
Thanks all! Some great tips here!! Xx