Was rushed to hospital last night with Anaphyllactic shock…which seems to be have been caused by eating a drizzle lemon cake. I know citrus foods are a no no with MAV - and ive realised i get blurry vision at work drinking diluted lemon squash. Im going to cut out lemon and not buy a tikka malsala that i usually buy (GOT A HOT VERSION BY MISTAKE) in case it was that…but was wondering if MAV can effect your immune system …ive never been bothered with hayfever until this summer.
I have gotten increased seasonal allergies, but I think mine are just getting worse as I get older. I know, however, that my body has become more sensitive to EVERYTHING with MAV. For example, before MAV and even during the “better” stages I used a sulfur based facial cream for dermatitis. Since then, I had to go on a sulfur based antibiotic and found I was allergic to it. I had intense burning sensations all over my skin, especially any areas in contact with clothes, the back of a chair, bed, sofa, etc. If I had a sulfur allergy before I would have thought it would have shown up with the facial cream. Also, I don’t get allergic reactions to cold medicines but they definitely affect me differently now as the MAV has gotten to its worst yet. I used to be able to take them without consequence but now I get an increased heart rate and a fuzzy head feeling.
Sorry you had to go through the rigors of an ER visit, no fun at all.
If you check out another post bt @Paulus or search Histamine Intolerance on this forum - you’ll find an update posted December last.
Good luck with getting yr head around triggers. It’s not easy unless they are very obvious as they can be cumulative and reactions are often delayed. All very individual, and guess food triggers are shorter but mine average 36 hours delay, give or take.
Think there must be links between allergies and MAV. I’d never suffered hayfever, not the slightest sniff, until after MAV hit but thinking about it it makes sense. If MAV symptoms, the dizzies, the photophobia etc, etc are, just like the super sensitivity to meds, all signs the whole system is ‘gone a bit hyper’ as the consultant told me, the hayfever, being an over-reaction to pollen, is ‘just’ another I suppose. It’s still jolly annoying though when you find you cannot take hayfever remedies because they are contraindicted by the migraine preventatives. Last year I sniffed alot, this summer it’s OK. Now I’m on a higher dose of preventatives they seem to be controlling the hayfever symptoms completely, and the MAV more but not totally, so maybe ‘Every Cloud has a(bit of a) Silver Lining’, eh, after all. Hope so.
Many thanks. That makes a lot of sense and that list is great (linked to the other post) to have as I am so confused about what to eat or drink! I was diagnosed as coeliac 10 years ago but now wonder was it MAV all this time.
Cant imagine what similarities there are between MAV and coeliac conditions. Is it that similar.
You’ll find alot of MAV literature through the Welcome section of this forum. Dr Surethiran’s diet information is there as is Dr N Silver’s recommendations. There’s loads of information here. Sure you’ll soon get yr head around it all.
Were you told to follow a migraine diet by specialist/doctor. Most do, some(mine) said not to restrict yrself just eat fresh and healthily. Most advise no caffeine. Just in case you didn’t already know I’d just mention the MAV diet isn’t necessarily ‘for ever’ as might a coeliac diet be (don’t know that much about that). It’s ‘just’ - sounds easy doesn’t it - to establish triggers for elimination. Obviously any food restriction plan can be deficient in vitamins, minerals etc long-term. That’s why I mentioned it. You probably already knew anyway.
Thanks so much for that info. Coeliac disease means no wheat, oats, rye & barley forever. But I often wondered why I still had so many symptoms! I currently feel like eating or drinking nothing! I’ll explore the welcome area and start an elimination diet and hopefully figure out my triggers. Yes, the Physio gave me a list but said she wasn’t a dietitian so explore further. I am so grateful to her after 3 & half years of tests and consultant visits!!
It was the whether or not it was ‘for ever’ I stumbled over. I’ve known people going wheat free for a period, say 6-12 months and then reintroducing it and being OK. Thinking about it I knew a family, father and two sons with coeliac and diet was for ever. His wife made fantastic birthday cakes he brought into the office which they could eat. This was years back when there wasn’t as much knowledge/specialist foods available and amazed me.
Just curious I had to look up coeliac disease to check similarities with MAV. Couldn’t really come up with much. No mention of vertigo/dizziness. How did you reach a diagnosis if I may ask. Have you seen a neurologist/neuro-otologist or was it GP. MAV is definitely a ‘wastepaper’ diagnosis which I think encompasses a wide range of symptoms which stem from a variety of very different conditions all of which affect balance. Some people diagnosed with MAV seem eventually to discover something else which seems to be causing their condition other than migraine, an eye condition, trauma to ears etc but it’s generally something that is an accepted part of the vestibular system. A lot of MAVers are ultra sensitive to meds and suffer from sensitive digestive systems, probably all part of the super sensitive brain syndrome but it is surprising to find MAV and coeliac confused by experts/tests over so long a period.
I am not sure I understand MAV enough yet to throw away my coeliac diagnosis. I suppose the fatigue, nausea & vomiting are similar in both.
I was originally diagnosed as having labyrinthitis by my GP, an ENT and neurologist. Then peripheral vestibular disorder by a neuro-otologist. Then the Physio with whom I was doing VRT for 6 months asked me to get another GP opinion as I was so fatigued, nauseous & had ear pressure/pain. This sent me off on 2 years of investigations and consultants appointments until last week a Physio said I am a textbook case of MAV plus 3PD.
Hopefully I’ll improve now with VRT and dietary eliminations.
I am not a medic, must make that clear. I’m just a person who has had MAV in several of its various forms over 15 years, and still has it. I’ve researched and read and researched and read, worn out a computer or three in the process, endlessly curious about this weird phenomenon that is MAV and here something is not ringing true so pls bear with me a little longer or I may not sleep tonight at all, wondering. Mind if I ask a couple more questions. Presumably you have at some time had migraine headaches or similar. Yes? it is possible to exp. abdominal migraine, particularly I believe in childhood. Can you describe yr dizziness and/or vertigo a bit pls. That’s what is seeming peculiar to me, you don’t mention being dizzy, light-headed, brain fog or anything of that sort which is generally the most commonly shared MAV symptom. Now MAV morphs constantly. Symptoms just keep changing. You can tick these 5 boxes this week, and 10, 7 of which are different, the next. Then, just to complicate the issue, individuals do exp. wide variations in symptoms however … some sort of dizziness seems always to be involved and …
Ear pressure/fullness is common MAV symptom. Tinnitus is another. Personally I have never, yet, exp. ear pain (but you have a peripheral vestibular disorder, could explain). Nor fatigue. Nausea and vomiting in my MAV occurs as a direct result of the vertigo, photophobia or motion sickness, all of which come from the MAV. Do have a good look at the MAV symptom list on the Welcome section to see how yours compare.
There’s no such thing as a definite MAV diagnosis. No conclusive blood test. It’s a diagnosis of exclusion. Lots of people get improvement from following the elimination diet, caffeine seems the worse culprit for many. The jury is still out on VRT. There is a strong concensus of opinion that unstable MAV doesn’t respond well to VRT. I assume you are doing it for the peripheral vestibular disorder (which could be the cause of your MAV symptoms) and it is considered very useful for that. Your physio seems pretty clued up. Where I am in UK they have no balance/VRT training at all. By nature they are very hands-on so she may well be way ahead of all those specialists by being right. MAV is nothing if not interesting.
Im much better now by cutting out high histamine foods like bananas, cured meats and citrus fruits and having pro biotic yoghurts to help with my stomach bugs. Not everyone who gets MAV has histamine intolerance issues but the medication for MAV can affect your stomach neutralising enzyme. If you start to get hayfever type symptoms try the low histamine diet - it worked for me and I did it myself.
And in another post i listed i didnt get anaphyllactic shock by an allergy - i got it by too much histamine in my blood - a rare but possible form of it.
My main symptom has been spinning vertigo and then ice pick headaches, left ear pressure/pain, pins & needles hands and feet, aching legs, stabbing pains, brain fog, poor concentration etc etc. My Physio said I am a classic textbook case of vestibular migraine.
I’ll do more research but am hopeful that I have at last got an answer to all my symptoms.
All comes back to mind having spent an off balanced day constantly sneezing and with a nose which drips like a tap in need of a new washer having yesterday eaten canned Pilchards in tomato sauce which, surprise surprise when I checked it out, turns out to be doubly high in histamine.
My mother told me ‘you used to turn bright red and fuss when I nursed you after eating tomato sauce’. How helpful that info might have been had she mentioned it before I was 46. Or changed our diets at all, ever. Fortunately, I figured it out years before she volunteered the info but only after giving up on the gastroenterologist who claimed it was idiopathic IBS and sent me packing. I embarked on an elimination diet. You always crave the stuff that’s worst for you - until you decide feeling better is more important.
The ironic thing was I only ate the fish because I was at a loss to fill sandwiches avoiding cheese because I have read so much lately on too much dairy causing full ears and tinnitus, two symptoms I have been suffering unusually and exceptionally over the last couple of weeks and which I have attributed to consuming too much cheese.
Absolutely. Still I have immense support at home although I do blame him for growing all the veg I threw the cheese sauce over! Immense support indeed. When I complained how unbalanced I felt only this morning he said ‘Oh, it could be worse. I just followed a hearse’.