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Hi! My name is Kara and I’m new here...

I hate to say this…but welcome. I know that 24/7 intoxicated feeling is terrible. I don’t even like drinking anymore because I always feel drunk. Hopefully the posts give you some hope as they have for me.
Mike

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@sfnative I do feel better when I’m at home too but with a 2 and 4 year old it’s not too calm haha. I’m at my best after they go to sleep and I have my lights dimmed down real low. I’ve kinda wondered if the anxiety plays into it too. At home I don’t have to pretend like I’m ok.

@migrainemike it does give me hope. Now I just need to learn some patience. I’m more than ready to start feeling better.

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Everyone should always at their most stable in their own home. It’s because of familiarity. It is a phenomenon recognised by medics. When I casually mentioned to a physio recently that I can go out walking end up leaning heavily on a stick (more walking than my vestibular system appreciates obviously) I can struggle like a drunk back to the car, take a short car drive back home but then walk, usually carrying the stick, from the car up the long drive to my own back door perfectly naturally and with ease, the physio said ‘that’s your home environment, everybody’s better in their own familiar surroundings’. We also had a similar discussion regarding the use of walking aids, at home and in town. She wasn’t surprised I still need the stick in town. Obviously there is a psychological element in there somewhere too. Our tortured migraine brains are totally habituated to their own home environment. Years ago VRT body told me I needed to walk outside every day but also that I should only be walking in places that were familiar to me.

Comforting as it may be I’d avoid too much dimming. The less you expose your eyes to light, the more light sensitive they will become.

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Hi kara
Welcome to this weird MAV world Glad you got diagnosed fairly quickly it took 18 months for my diagnoses as most doctors in the uk don’t seem to ever of heard of MAV!! I was told I was more or less making my symptoms up as i never get the classic headache pains. I was told it was just severe anxiety causing the dizziness and vertigo and they referred me to a balance centre where all they did was told me to listen to a mindfulness CD for 8 weeks!! Anyway I finally found a neuro- urologist privately who has diagnosed me and basically saved my life. I am 3 years in now and getting so much better never ever give up you will get there. I was unable to tolerate the side effects from nortriptamine or other drugs I tried such as pregabalin and venaflaxine so I decided to do it all naturally it may take longer but as I couldn’t tolerate medication side effects including weight gain it was my only choice. These are my tips which I hope will help and this is what i did to get 80% better so far. To start with Follow the 6 c’s diet so no cows cheese no Chinese food no red wine no processed food no caffeine no citrus no chocolate for 6 months this may really help you then you can try introducing some things one at a time to see if you can tolerate them. Unfortunately the 6 C’s diet did help a lot but wasn’t enough for me. I wrote down everything I ate and drank for a whole year so I could see patterns if I was really bad and I ended up cutting out all fruit all alcohol fizzy drinks aspartame and vegetables high in nitrates such as asparagus spinach onions. I can eat goats cheese which is lovely. Do try a food diary it really helps. I have also found a lot of medications make me really bad due to all the ingredients they put in them apart from the active ingredients such as caking agents e numbers and colourings. If I take paracetamol I am bed bound for 2 days so if you find you have bad days after some medications keep an eye on the ingredients to see if there is an ingredient that makes you worse and avoid that if it is medically safe to do do. I also make sure I walk for 30 mins every day as this really helps and like you I have low blood pressure so I make sure I use pink Himalayan salt on my food more than non MAV people and always have 2 liters of water a day and after 2 months my blood pressure is higher and I feel so so much better. I hope some of these ideas may help you but also remember take it at your own pace and rest as much as you need too when you are dizzy. You will improve your life. It takes a lot of time and determination but you will do it. Lots of love and strength to you. Sam x

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I think you’ll find the HYH Diet or any of the American Migraine diets, such as the John Hopkins Clinic Diet, are designed to eliminate nitrates etc. They are far more comprehensive than the six C Diet.

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Thank you I will look at them as I have never heard of them.

All of this for me as well. Optic flow, no obvious focal point. This can be the most disturbing symptom of all because it makes normal activities almost impossible. So glad I’m not the only one.

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@Jrex98 it does make things a bit easier knowing you’re not alone. This is all so hard to deal with.

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Except for the headaches I perfectly relate. What has helped me most so far is

  • avoiding or at least greatly reducing alcohol and coffee
  • taking magnesium, zinc and Vitamine C in substantial amounts
  • taking some mild sedatives such as Valeriana, St. John’s wort, etc. as any kind of anxiety or negative excitement makes the symptoms worse
  • chewing travel gums containing “dimenhydrinate”, in the USA it is branded as “Dramamine”

Best regards
Frank

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Yes, your symptoms are very similar to mine! I haven’t read many other people that get the zaps in their head. I get those just out of the blue and they’re very aggressive. I am currently on amitriptyline but because of my weight gain I am looking to change medications. My neurologist told me I need to stop searching for other diagnoses and except the MAV diagnosis. That’s so hard to do sometimes. Glad we are all in it together.

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Update! I’ve been working part time lately but today I was able to work 8-5 (a physically demanding job, I build office furniture) and had ZERO “I can’t do this right now” moments. I was still really dizzy but no fear! No being scared of how dizzy I was and I felt super productive today! The job sites we were at weren’t too busy and there weren’t any long hallways which helped but I’d call this a win! I will start a diary soon to keep track of progress and updates but I’m honestly just too excited about this that I had to share right away!

@Hope88 hopefully this will give you some hope with nortriptyline. Still don’t know if this is the one drug for me but I can tell things are very slowly getting better! I’m on day 3 of 60mg of nortriptyline.

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Way to go, Kara!

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Thank you Kara, it really gave me hope. I wish dose 60 will work well for you. Please stay positive, i know one lady she felt totally normal after two weeks on dose 100 of Nori.

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Hi Kara
Welcome to the MAV club! I can identify with your symptoms but I have been lucky that they have all improved since I first started in 2018 apart from the tinnitus, which is 24/7 in both ears. I was prescribed Pizotifen plus the 6 Cs diet and that combination seems to have helped. Although I kept a food diary I am none the wiser about food triggers as I can’t re-introduce foods on the banned list until I am completely off Pizotifen. I also have Heartburn - possibly GERD but need to go back to my GP to confirm.
I struggled to start with and felt that I was never going to improve , but I have and I am sure that you will too, especially if you can find the right medication and/or diet regime. So hang on in there - you are in the right place for support and advice which really helps. All the best, Jan

Thank you Jan! This site gives me a lot of hope that life can be better than what it is now. I do feel like I’m getting better, it make be very slow but I’ll take whatever improvements I can get right now.

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