Drinking alcohol

my AVM was treated 7 years ago

Hey … I’ve just been diagnosed 5 weeks ago and I haven’t been told anything because the doctors don’t know what to advise , do you have any fir me ?

It must be scary. I’ve lived knowing about it for 10 years now. My advice is to live life to the fullest. Medically I cannot say because everyone is different. I live my life as if I could die any day anyway from some other kind of circumstance. Lots of prayers for you!

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Mark,

I was advised in A&E to cut out all stimulants: coffee (caffeine), chocolate, smoking, alcohol, etc. as they raise your blood pressure. At the time, I was starting to get dizziness from my AVM and cutting out such things took away the dizziness, so it was definitely worth doing.

Unfortunately, I have regressed somewhat over the last few months, waiting for my embolization and despite cutting out stimulants, I’m getting more dizzy by the week. I still think it is a good thing to do, though. I can’t imagine what my head would be like if I went back onto coffee & chocolate!

If you notice any difference by cutting these things out, keep off them. If you can’t tell the difference, you may be safer than me to have the occasional beer.

Hope this helps,

Richard

Yes it is a normal Monday morning up for Work at 3.30am by 4.30pm ish I’m in hospital as you have lived for so long with how ? Did you need surgery excuse me if I’m being to personal x

Thank you Mark I have read up on the surgeries but have not seen consultants and I’ve had no advice I’m from the uk have you been to see surgeons or the nuerologist team what was said if you don’t mind me asking …?

It’s a lot to take on from a normal day to that my family are in bits and I’vee had no advice on what to do in 5 weeks thus is my Last hope to get advice and experiences I have know where else to ask …:cry::tired_face:

I’m sorry for you It is terrible but that alone makes me realise we move on I don’t know what to expect ?

It’s very scary my family are going through so much hurt and oain and there is nothing I can do o help do you have any help or advice to deal with this ? Thank you bubu x

I am doing I don’t want to change my life but I don’t want make it worse and with having no proffional advice I’ve turned this to help if you it’s very confusing to me ?

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I had the option. However, I would be left with brain deficits. My surgeon said to leave it until after I have children. It’s all about risk benefit and what you are willing to live with. I’ve known about mine for 10 years. It took a lot of time for me to come to terms with it and also to not operate at this time.

It definitely takes time. I do not know if you had a CT scan and then an angiogram yet. Depending on where the avm is located, it’s size and position, the dr should be able to provide you some options. Prognosis for everyone may be different. I am told 2-3 percent chance of hemorrhage per year (never accumulating) and 50 percent in a lifetime. That was my prognosis at least. Depending on where the avm is, it may affect different body parts or your senses. It took me a long time but I went to counselling and have spoken to close people about it. My family knows but I’ve lived with it so far. I’ve enjoyed life and remain happy. You find your happiness if you allow yourself to.

Mark,

It takes a long time to get seen and get advice on the NHS when you’re not acute. My story, perhaps similar to yours, is here.

Rather than diverting an old discussion on drinking alcohol with your “story”, consider starting a new topic and tell us about yourself.

Welcome to the site. There are lots of people here who have been just as scared as you, gone through the same things. We’re all here to support you.

Very best wishes,

Richard

I have a few drinks a year, always with food.

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So, my AVM happened when I was 20. When I turned 21, I asked my mom if I could drink. My mom said, “I will let you have one drink or you can ask your neurologist what he thinks.” I went with my mom’s decision. I will occasionally have a drink or two throughout the month. Since my job does require me to drive, though, I don’t push my luck on drinking. Having to give up driving for 6 months after a seizure is motivation enough for me to stay sober.

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due to seizures from my avm rupture I limit myself to a drink or two but I dont get drunk or the seizures kick in.
I found non alcoholic beer allows me to feel social without the risk of seizures.

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hi bubu80

I was told i can drink but in moderation, a few drinks is relaxing and so calms down the blood pressure, then a lot of drinks can set people off on a highly strung mission.

i have a few beers at the weekend and i use it as a wind down from the working week.

Matty

I had wine the night before my first seizure 9 months ago I don’t indulge and I loved going to happy hour. I’m on seizure meds and had one sip of wine at Christmas and decided the feeling from one sip was not a good idea. I now go to happy hour with friends and have soda. For me it’s a lifestyle change that has to be this way.

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Hi OP,

I was never told by my neurosurgeon to not drink. But my brain AVM was considered low risk as it was small with no aneurysms. I never experience seizures with my AVM. I’m not a big drinker, only socially, and I know my limits. Obviously what works for me doesn’t apply to everyone as each AVM is unique. But if your neurosurgeon has strong opinions about it i wouldn’t ignore it as they have years of experience with this sort of thing.

My neurosurgeon told me, yes you can drink, just don’t drink the bottle of wine.

Sarah